It has been a very busy summer. I published my first book – The PSP Chronicles, sounds strangely familiar. This took a great deal of effort on my part, trying to remain focused on the book and keep my project secret as a surprise for Trish and everyone else. The dystonia in my legs made the project and the work in the yard more challenging than ever before, but I persevered and pushed through it. The Biogen clinical drug trial is going well enough, I think its too early to gage results, but I’m happy to report there have been no negative side effects with anyone participating in the trial. Many of you know by reading the blog how easy it is for me to shift tense in writing. That’s the nature of the beast called “dementia”. Sometimes my past is my present, my present is my past and yes… my present can be just that – present.

This was the view today in my sanctuary during my time of prayer and reflection – peaceful… serene.

These, are troubling and tumultuous times we are living in. Death, destruction, corruption, partisan politics, misguided and fake leadership. Real climate change, greed, intolerance, hostile governments looking to assault and interfere with established democracies. Lets’ not forget the continuing cyber threats too. All these and more, exacerbate an already volatile environment. As I looked around, and wrestled with and prayed on these issues, it became abundantly clear to me… literally and figuratively – we need to get back to the basics. The picture speaks for itself.

Perception

I can’t tell you the numbers of times I’ve heard “he looks good”, or begin to guess the number of times someone was thinking that. Other than the grey hair, age has been kind to you. They don’t see the difficult Botox injections to my eyelids to control the excessive and insane non-stop blinking called blepharospamns. Nor do they see the same injections into the soft tissue in my right calf to control the dystonia that causes my foot to turn inwards. They do not see the injection into sole of left foot to keep my toes from curling up. They don’t know how much effort I put into exercise that allows me more mobility than most with this disease. They don’t know the frustration of sloth-like movements, when I once as referred to as “The Energizer Bunny” who kept on going and going. They don’t know the appreciation of the simple act of getting out of bed. They don’t know the independence I’ve surrendered or the reliance of someone washing – drying my back or the help getting dressed. I could go and on … I’ll leave that to another book. “He looks good”. In my mind I’m 22, my age is 62, but in reality… I feel like 82. But hey, take heart, I still love ice cream and chocolate… that always looks good.

In addition to plenty of ice cream and chocolate, I even showed the little sprite in me.

Many of you will remember the”horse” post.Well, I’m at the emergency room . This day has kinda taken a turn for the worst. I got the chance to go horse back riding, something I haven’t done in a while. Big mistake. I got on the horse and started out slowly, but I got cocky. So we started going a little faster and before I knew it, we were going as fast as the horse could go. And when I tried to stop the horse, I couldn’t stop him, he must have gotten spooked or something. He was out of control, so I decided to try to jump off the horse, and instead, I fell off, but as I was falling, my foot got caught in the stirrup , so the horse was dragging me. And he wouldn’t stop. Every time I screamed at him to stop, the horse went faster. Thank goodness the manager at Toys-R-Us came out and unplugged the machine. But he had the nerve to take the rest of my quarters so I wouldn’t attempt to ride it again. How many of you actually read what I posted? If you did, copy and paste for someone else to get a laugh.

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The PSP Chronicles Sprummer 2018

June 26, 2018 ~ T.J. Brown ~ Leave a comment

The Weed Waltz

The May 2-4 weekend is over. The last long weekend until July 1st… Canada Day. It rained earlier this morning, but it remained overcast for the rest of the day. As long as there is no threat of lighting, I’ll be out in the backyard. The rain-soaked ground makes it all that much easier to pull weeds but no better for my back. In the (my) province of Ontario they ban the use herbicides, and the alternatives are expensive and ineffective.

I use an old pillow to kneel on and work my way across the yard. Pull, place in a bucket and repeat. Willy is always in tow for when I need to sit down. I must always remember to apply the hand breaks. If I don’t, it’s more like falling down than sitting… good thing I’m on the grass. Getting up off the ground is the most difficult part of the task. Trying to steady and lift myself with the use of my cane, bucket or whatever else is handy. It must amuse my neighbours watching me as I perform this weed waltz, which feels more like breakdancing, because I spend most of the time on the ground.

I’ve been lucky enough for the last week to have normal use of my legs – I can feel it changing. The cramping and stiffness is working its way back, I think I may need a larger DETOUR sign for my brain to see, so I might enjoy the relief a little longer.
Mike’s oldest daughter Jennifer had posted some new pictures of his grandson Jacob to her Instagram account that appeared on FB. I scrolled through her pictures stopping each time I came across one of Mike… it left me tearful. His death like, so many others in the PSP community this past year, have chipped away at me but I stay resolute.
My how things can change, my get up and go got up and went. It was nice to enjoy a higher level of energy even if it was only for a week. I hope there’s enough water in the pool for a swan dive into the deep end of my reality.

Clinical Trial—Pre-screening

Trish and I had an early start on the road this Thursday morning. I have an appointment for 9:00 in London for an MRI required as part of the pre-screening for the clinical drug trial. The scheduled imaging was at the Robarts Institute, I’ve been here twice before for an MRI as part of the ONDRI study.

This time I was going to the second floor, not the first as I had in the past. When I inquired why, I learned the study required some specialized brain mapping and the Tesla MRI on the first floor could not perform images in 7-D. 7- D huh? I thought I had heard the tech incorrectly, no… he said I had heard him right. I guess 3-D must be a relic of the past, now I get to take a test drive in the Cadillac of MRI’s… can’t remember the name. The appointment went as planned, we were back on the road and home for 11:00 am.

A Time for Pampering

It’s a wonderful sprummer day and I will be out in the yard after my nap, the plan is to pull weeds. I will do this more methodically laying out a grid working one section at a time, instead of randomly… my usual way. I know we’re talking weeds here, but the more organized I stay, the better it is or me.
The weakness and stiff knees in my legs is creeping up again, it’s about a six and a half on my scale. The higher energy level I experienced the last week has all but gone. I thought was doing okay cognitively until I had another dog treat switch-a-roo at lunch today. I ate half until I realized it didn’t have the same flavour as my chocolate fudge cookie and spit it out. It looked as if Luba would pee herself laughing; should offer her a Depends; I thought to myself.

Trish’s friend Susie and her sisters rented an AIR B&B for a spa weekend at Blue Mountain in Collingwood, a popular ski resort town in Ontario that offers many summer activities including spa retreats. One of Susie’s sisters could only stay for the Friday night. She asked Trish if she would like to come up for Saturday in her place. She loved the idea, and I told her to go for it, it would much needed respite from her daily stress. Trish had arranged for her sister Marg to spend the night while she away, in the event I needed any help.
I used every ounce of energy I could muster and spent the better part of Saturday and Sunday kneeling down and pulling weeds. Too many, that would seem like a waste of a weekend. For me, it meant being out of the house and in the backyard-my happy place. I made good progress and even had Marg helping me for a while stopping only for lunch and dinner. Oh yes, there was the two back-to-back texts from Matthew – spider issues.
After the weekend, I found my legs are returning to my tree stump normal… heavy, and don’t want to move. I’ve been experiencing transient numbness and fluttering (myoclonus) of the muscles over my left scapula throughout the day.

Tuesday began with more sad news from my extended PSP family. Another warrior is free from the ravages from this insidious disease, making it three loved ones since the weekend. I feel like a pincushion, every death feels like a new jab each time.
Trish has been in touch with the clinical study coordinator, trying to arrange a day and time for the lumbar puncture- a procedure I said I would never do. I put my fears aside, to be part of something that might make a difference with those of us living with this demon disease. There has been another passing today in my PSP community. That brings the number of loved ones who have earned their angel wings to four since the weekend. I’m trying not to be negative, but this is only Wednesday.

It’s difficult having PSP, but I also recognize how agonizing it can be as a loved one and often the caregiver. The fear and uncertainty, physical exhaustion, sleeplessness, frustration, sadness and separation can overwhelm to the point of wanting to give up. I know this – I read about it every day on my PSP forums. Some have asked if this bothers me, the short answer is no. I have always made a point in my life to see things from someone else’s perspective. I can’t promise that as my PSP progresses, I’ll be a good patient, but I will understand what it’s like to be a caregiver… providing I don’t forget.
My legs are not cooperating today – the stiffness is around seven and according to the calendar, I have a foot care appointment tonight. I thought, it would be a challenging day for me after I made Matt’s breakfast and went to put it in the freezer – I caught the gaff.

Trish and I had a conversation later this evening, concerning Jack’s cremated ashes. Chris had brought the subject up during a phone call with her earlier asking what the plans were for burial. I was fighting back tears—my grief is still raw, and this stirred up feelings of anger towards the POA and doctors.

I spent the better part of Saturday out in the yard, some of that time repairing a bench that belonged to my mother-in-law. When I could go no further with the fix, I was back on my hands and knees with a pillow pulling weeds. My back and my legs—especially my knees were screaming at me, but I was determined not to listen. I conceded to lunch and my meds, there was a thought about a nap… nah, I’ll consider going to bed a little earlier.

This Sunday morning it looked as if there was more air in my head than grey matter. Again, as on Friday, I caught the brain fart before I filled the coffee cup with cereal. I made a comment I can’t recall, but I remember Trish just smiling at me.
This morning at church there was a baptism for a wonderful ten-month-old boy with three older brothers as part of the service. The youngest of the three, dressed in a formal suit, and wearing sneakers has taken his big brother role seriously. At the end of the formal service, the minister took the child from the mother and made her way out to the sanctuary. Concerned, the young boy turned to his mother and asked where and why the minister taking Tommy? She was presenting the newest member to the Christ family to the congregation, who received him.

At one point of the baptism, I experienced dizziness and grabbed the back of the pew in front of me managing to stay upright. That’s a concern I have, falling and disrupting a service. Thankfully, it didn’t happen today – it was Tommy’s time to shine.
There was a covenanting service for our new minister at 2:00 this afternoon which I considered attending providing I was up in time after my nap. It was after three when I woke up… guess I would not make the service. Despite my legs and stiffness issues, I spent four hours on my hands and knees in the back yard pulling weeds. I could be cutting grass or trimming branches… makes no difference, being outside is all that matters.
I woke up on Monday morning and could not open my eyes, which troubled me. I tried using my facial muscles with no luck and ended forcing them open with both index fingers and thumbs. They remained open and had no involuntary closing for the rest of the day. My tree stumps and trunk worked in unison too I’ve learned to dare not ask what else was in store.

Luba was here in the morning and came back at dinnertime, Trish had gone to a visitation for our daughter-in-law Elizabeth’s grandmother out of town. Luba arrived to find me in the front yard continuing on my weed removal blitz. She put on her gloves, bent over and helped me—I wasn’t in any rush for dinner just yet. I had given consideration to back outside after she left, but I was done. River and hung out until Trish came home, well, more like I sat on the floor rubbing his belly. I know we had tea and might have even caught a show—my recollection is not the best… experiencing a little brain fog.

Lumbar Puncture

Trish and I were on the road by 7:30 on Wednesday morning, stopping for a coffee at Timmies’. I skipped my morning coffee at breakfast my bladder cannot hold two coffees in the space of an hour. I could have used a more absorbent pad, but that was more work than I was prepared to do.

I have a date with a lumbar puncture (spinal tap) in London’s Lawson’s Research Institute at Parkwood Hospital for 9:00 am. This is a secondary volunteer study to the pre-screening of the Biogen clinical drug trial. The purpose is to establish a baseline of tau protein found in the cerebral spinal fluid – CFS. Originally; I wrote it as the Bristol Meyers Squibb trials but BMS sold the trial and potential development to Biogen since the time I first applied for the study. We had to go through the paperwork all over again. It was no inconvenience, especially if the trial produces favourable outcomes.

Dr. Finger discussed the MRI saying there were no new abnormalities and that my mid-brain atrophy remained the same as in previous imaging. I welcomed the news, which in my mind confirmed a slower PSP progression, something that Dr. Jenkins had already stated. She then explained the whole process before performing the procedure. I thought it only right I should behave myself… no inappropriate comments or gestures, considering I would lay on my side in a tight fetal position with her and a syringe stuck in my spinal column.

First, she prodded around a few areas. Satisfied with a location, she then swabbed the area with iodine and injected lidocaine two—three times to make sure the injection area was numb. There was a little prick and pressure to this, but nothing too unbearable. After a few minutes and being satisfied the target area was numb, the spinal tap began. It was then I thought to myself… did I go pee when I got here? Too late, to be asking that question now.
The doctor told me to speak up if I experienced pain or any kind of sensation, which I did. There was a sharp pain followed by some tingling in the back of my left leg right up to my butt cheek. At the very moment of pain, in my mind I heard a loud clap of thunder, and the tingling, I saw as a sheet of forked lightening spreading out in a darkened sky. Trish said Dr. Finger upon hearing my comment, moved the syringe ever so slightly and it went away. That was one storm I didn’t want to chase.

After the procedure was over, I remained lying down for another fifteen minutes and left with instructions about no heavy lifting for fourth-eight hours. That would mean I would have to skip the weight/resistance portion of my exercise program and make up the time difference on the recumbent bike and stretches. When the lumbar puncture was over, Trish and I received a food voucher for something to eat. We grabbed a bagel and a coffee, then left and made it back home in time for lunch, meds and a nap. I was feeling fine after my nap, so I had my coffee and quiet time in the sanctuary. Afterwards, I went back to weeding working on all fours, until dinnertime then chilled for the rest of the evening.
I cut back on the exercises today on the advice of the doctor, completing only stretching routine. Again, after my nap I continued to weed until dinner, only this time we went to vote—chilling afterwards.

I had an earlier start today to allow for a nap so Trish and I could attend a memorial service for Jim, a long time neighbour and a friend of hers and the family. He was a wonderful man who passed away last week in his 95th year with Alzheimer’s disease. Jim left behind his wife of sixty-four years—Jean, their five-grown children, grandchildren and great grandchildren. Yes… I know it sounds like an obituary but it’s worth noting. Today was a celebration of Jim’s life, filled with music and song from his two lovely daughters Karen and Ann, the Glen Morris church choir. His wife Jean and his other children shared wonderful memories and stories, most I had never known. I wanted to say sorry for your loss, but instead, I thanked Jean for sharing Jim with all of us.

Parallels

The scripture reading for Sunday’s church service was from Mark 3: 24-25, two important sentences resonated with me today. I drew parallels between recent statements from POTUS at the G7 meetings in Quebec over the weekend. 24: If a kingdom is divided against itself, that kingdom cannot stand, 25: And if a house is divided against itself, that house will not be able to stand. I could rant over recent events, but I’ll spare everyone the diatribe. However, I will say this much – Putin and his thugocracy are enjoying watching the western alliance unravelling itself… he loves it when a plan comes together.

Here’s another parallel to consider – Putin and the Antichrist. The Bible said, “That in the end times, right before the return of Jesus, the greatest political leader in the history of Mankind will emerge from Europe. After taking over that area by diplomatic cunning and deceit, he will launch a military campaign that will result in his acquiring “authority over every tribe and people and tongue and nation” (Revelation 13:7). His empire will be the most extensive in all of history, encompassing the entire world.
He will begin his rise to power as a dynamic, charismatic, insightful, visionary leader who will astound the world with the cleverness of his solutions to world problems. He will appear to be the saviour of the world. But as he consolidates his power, his true nature will be revealed.” Too many puppets are playing into his game, including the leader of the largest democracy in the free world… just saying.
Badge of Courage… and of Hope.

I spent most of Saturday and Sunday outside. My legs were holding up, but my back and lower trunk… not so much. I’m content to be out in the yard, any discomfort is well worth sucking up. A bruise about the size of a dime has developed at the area of the lumbar puncture – I call it my badge of courage.

Courage, because I was fearful, having watched the procedure on a television show many years ago. I will never forget the size of the needle. I reasoned, like so many other procedures the technique and instruments would have improved over the years. The procedure may have changed but the size of the needle had not, as Trish reminded me… thank you for that. A badge of hope I think might be a more appropriate name. Hope… not just for myself… for all the others still battling PSP, their loved ones who share the journey and for the others yet to come.

“Needle in the Arm”

It’s Monday morning, and I felt about 6 ½ on the stiffness scale, which is surprising from being outside on my hands and knees for a good part of the weekend. After a two-day rest from the lumbar puncture, I could start back on my regular exercise regime.
Trish and I were in London for 8:30 am on Tuesday for more cognitive and neurological testing leading up to my first trial drug infusion in the afternoon. We spent close to eight hours there between cognitive testing and the infusion followed by an hour-long observation period. I am still experiencing the myoclonus in my left scapula… no pain, only intermittent numbness.

The rest of the week has been okay, my stiffness I experience in the usual places has not changed. My legs, which are a part of that problem do not feel as heavy making it a little easier to do extra yard work. I even started another painting project outside on the back wall—I will catch hell for it.

Most nights see me waking from my sleep once or twice. Tonight, which I guess is Sunday morning – Father’s Day had me staring at my eyelids for at least an hour and a half. I got up, had a snack and caught up on my journal.

I awoke in the morning to Trish announcing “wakey, wakey, eggs and bacey” (bacon and eggs), as she walked into my room with breakfast on this Father’s Day morning. It was a beautiful morning, so I changed things up a little and had my prayer time in the sanctuary after breakfast. I spent a little time working on my latest painting project before my lunch and nap.

Trish and I left in the afternoon to visit Sean and Julie for a barbeque celebrating his birthday and Father’s Day. And, as a bonus I remembered to bring along the painting of Princess Elsa, I did for Emma back in April. Julie’s mother, father and aunt were there to celebrate also, three dads celebrating Father’s Day, a birthday with three generations of Browns.

For daddy’s day, I received more painting canvases (hint-hint) and a garden stone with Owen’s name on it, to go with the one I already had from Emma. Julie gave Sean a unique gift – driving a Lamborghini for three laps around Mosport Raceway near Toronto. He couldn’t contain his excitement—almost giddy-like. Sean talked about a helmet with a go-pro mounted on it, pictures or whatever else was available similar to something you might get a ride from an amusement park. There were eight of us at today’s celebration, but I found it busy for me.

My stiffness has remained a 6ish on the scale and still experiencing the myoclonus in my left scapula. And, just like last night, I’m up again at the keyboard. I have done no snacking – at least not yet. Keeping in mind, those extra calories go right to my waistline.

PSP… a Worldwide Family

I read a post between a PSP group’s administer and a member looking to reach out to another member closer to where he lives. There are serious tensions between the countries where the closest and newer member lives. Dialogue between the two could be acrimonious. This is the administrator’s response; “Well in my mind you are both people who do not have a difference but a connection (PSP), it does not matter what your countries differences are. We are one family here xx.” By the numbers maybe five to six thousand, the worldwide PSP group community is infinitesimal; we need to build bridges… not walls.

Today is the last day of sprummer, its overcast and we’ve had some spotty rain that wasn’t called for. The gardens and lawns need the moisture we’ve had near-drought conditions for two weeks now. In the Waterloo Region where I live, there are watering restrictions in place so any rain is much welcomed. I hope the weather holds up as predicted, I might finish the one painting project and begin another.

I not feeling too bad today. My legs are and continue to be an issue–though the heaviness has all but left for now. The muscle fluttering and jerks along with numbness down my left shoulder continue even and as I type now. This has not affected my exercises, for which I’m thankful. It’s a long day for Trish. She is going to Toronto for a support group meeting after work, which means I will have an additional PSW coverage over my dinner hour.

There was a little excitement just after my shower this morning. Karen had finished drying off my back, saw Phoenix at the door and let him in. She shrieked. The cat had another chipmunk. Dressed only in my underwear I followed him out the door into the sanctuary where I rescued our furry little friend from his jaws. I picked Phoenix up, put him back inside the cottage. Returning outside, I looked around to make sure the little critter wasn’t lying injured somewhere, it appeared he made a safe escape. It was then I noticed two things. First; my quick turning action further aggravated my back and torso that doesn’t want to twist and; I did all this in my underwear. I thought to myself… this would have been comical if my neighbours had been watching… maybe it’ll be the topic around someone’s dinner table tonight. At the end, the score read Chipmunk +1; Phoenix 0, Me -1. Goodbye sprummer 2018. Hello to summer?

The PSP Chronicles Final Winter Update February – March 2018… Sprinter

March 23, 2018May 14, 2018 ~ T.J. Brown ~ Leave a comment

A collective effort on the part of my niece Jodi, myself with contributions from Luba and Karen has allowed me to finish the puzzle Sean had given me for my birthday. Luba brought over another one of a snowman and our beautiful feathered friends. I told her she was on her own on this one and it had better be completed before spring because I was sick of seeing snow.

My legs are still the main issue with me, most of the other muscle stiffness/pain is worked out through exercise and managed with meds. Singer/songwriter Neil Diamond announced today he had been diagnosed with Parkinson’s disease is cancelling all of his concert dates and will no longer tour. Selfish of me for thinking this, but if his diagnosis was changed to PSP further on, he could be the voice and the face behind PSP awareness, as Michael J. Fox is to Parkinson’s.

Upon opening up a group post this morning I learned of more sad news, another loved one had earned her wings. Between exercising, light housework and the mural, project, puzzle is keeping me busy. I’ve been experiencing more forgetfulness I used to put a day to each journal entry. That became too confusing so I started with weeks, then to months and lately to a season. I still record thoughts and incidents on my phone as they happen, providing I have the presence of mind to do so.

Mike noticed this very early on saying my writing style had changed the truth is, most of the time I don’t pay attention to days and dates even though Trish writes them down on my prominently displayed daily to-do list. Later on in the day we went out for dinner and later to Michaels to purchase more painting supplies. Unfortunately the debit credit card terminals were down and we had to leave the items there with the assurance the 55% discount off one regular priced item would be extended. We had to pass the DQ on the way home naturally we had to stop by.

Trish called Michaels on the Saturday only to find out that the terminals were still down, but once again we were assured the discount would still be extended another day. The weather has been on the plus side this weekend, which has had me out in the backyard planning my next project(s).

Trish and I attended an earlier Mass on Sunday morning along with Chris, Liz, the grandchildren and her parents and. The special service was held for the sick and to remember those recently departed. Liz’s parents had put Jack’s name forward as part of this dedication to the memory of Jack, for which we were especially thankful. Her parents invited us back to their home for coffee, which was just a short walk up the street. A special mass, coffee and unplanned visit with the grandkids equals a hat trick of sorts.

Later on in the day Trish and I went back to Michaels, but not before calling first. The debit/credit terminals are working, its’ all good. And you know, we had pass by the DQ again and this time Trish even got herself a cone. I have enough paint, canvases and other material to get me well past the end of this winter, I think. No painting on the mural tonight. I deviated and have done some journaling today, but more reading like the past few days. Lately, I’ve experienced more sun-downing in the evenings. The short explanation for sun-downing for those who don’t know is the time when your mood begins to sink and you can become sullen as the sun sets and darkness falls. Inside and outside of you, I was trying hard to find a pun here, or at the very least, a metaphor… I got nothin’. Nothingness, that’s something I can easily expand on. Anyway, to get past this I do more painting and reading my own journals. I view it as an exercise for my brain to see if I could reconnect with what I have already written about.

The last few days I’ve experienced lower back pain and stiffness, at the moment while making some entries I’m experiencing some unpleasant muscle spasms on my lower left side of my back. I’ve also seen the return of the myoclonus, what I called musical muscles very early on. There’s no pain with this now since the doctor added a new pain medication- Gabapentin to my cocktail of drugs.

Luba has been sick the last couple of days and Paramed had no replacement for her Trish is not very happy and had told them so.

So, my leg issues had been more pronounced in the evening for the last day or so. Wednesday morning I woke to burning pain in the left leg which disappeared before my exercises. The stiffness is 6-7ish. After nap my left leg was bothering me more, my right leg was twitching complete with small jerks AKA myoclonus.

I’ve been doing some research on clinical trials and checking the forum for any new information. My left side is still stiff and sore I had to move the heating pad a couple of times through the night. There was a care giver on the forum who said her husband was part of a clinical study for a new drug out of London Health Sciences Centre. This confused me a bit because I was unaware of this clinical trial, had I known I would have most certainly signed up. I mentioned this to the care giver and the only study I was aware of was the three year ONDRI (Ontario Neurodegenerative Research Iniative) study. She then told me her husband was also part of the same study as well as the clinical drug trial. You just know I’m going to have some questions at my next appointment in March.

Today Trish had spotted a bird in the cherry tree in the back yard and called me upstairs to see it. I heard the blue jays in the yard making lots of noise, now I understood why, it was a Peregrine Falcon. My left leg and hip had been troublesome today with a burning pain, by nightfall it was almost numb. I wrapped the heating pad around it once I got into bed and waited to see how it felt by the morning.

By Sunday morning my left leg had felt much better than the night before, now the right starting to bother me, frigging pinball wizard. To add to my woes we had more snow overnight ugh. Trish is getting ready to go back to work for the new semester beginning on Monday, I will miss having her around.

I took a break today from my other project and went back to painting the mural this morning I’m already past my self-imposed deadline. Since most of my discomfort had been later in the afternoon and into the evening the past few days it made more sense to paint when I was up to it. It was a difficult first day back to work for Trish she had been off since Jack was admitted to the hospital during the second week of October up until now.

I’ve had my own adjusting to do while dealing with a smorgasbord of symptoms the past week as well. Trish now had one long uncomfortable week filled with many awkward moments week behind her. People sometimes can’t find the right words to say about her loss, and those who do are tearful making it all the more difficult.

I woke up this morning to snow, snow and more snow, I’m sick of this white stuff. P usually means progressive, but this morning P is for Pinball Pains. Today it was my right side, legs, shoulder and hand. Tonight it’s the left side, the bells are ringing and I’m being lit up for each time some part of me is struck. Tonight I fell asleep no problem, but woke up just past 1:30 am with some pain in my lower torso, I got up and took a Tylenol over and above my regular medication night cap. I stayed up for a while until I felt more comfortable and even managed a paragraph or two in the journal.

Most of my discomfort had been later in the afternoon and into the evening the past few days. I have a massage booked for Tuesday and I am soooo looking forward to it. The benefits from the massage lasted for about two and a half days. I enjoyed the relief just the same.

Today is Valentine’s Day. I have a planned dinner date with my sweetheart at The Keg Steakhouse- great meal and even greater company. It would have been a wonderful day except for the news of the Valentine’s Day massacre at a high school shooting in Parkland Florida. Seventeen killed. WTF! How many more times does this have to happen before law makers have enough testicular fortitude to confront the issue head on. I have no quarrel with the Second Amendment and the right to bear arms, but I don’t think the forefathers had AR-15s, butt stocks and extra capacity magazines had this in mind when considering the change.

Today I’ve been organizing files folders/pictures pretty much all day. Idiot that I am, I deleted one folder I had spent a great deal of time on. This has been a lengthy project, taking much longer than it should although I have no measurable to compare it too. I think my sloth friend is coming out of hibernation and the Energizer Bunny is leading a parade somewhere else. As tedious as it can be, it helps me to stay focused or so I keep telling myself. In fact I tell myself quite a things, but they needn’t bear repeating.

Tuesday. I have massage tonight and I can’t wait for some relief, especially on my left side which had been really bothersome. Must have been so bloody eager I forgot to take my dinner meds. This time around I enjoyed some relief for about two and a half days.

I’m told it’s a long weekend coming up- Family Day, it makes no difference to me but I’m sure it does for Trish. My legs are back to the tree stump feeling again, I’m not certain it ever left, but for the past couple of weeks there’s been a burning pain and contractions along with weakness.

I’m keeping myself busy with my project and the mural, my self-imposed deadline had come and gone. There’s been more pain and stiffness in my left arm lately. But hey!I have re-invented the wheel. If you have read the blog then you would know all about Brain Game Roulette and the notorious wheel. It’s now PSP Pinball or as I have called it lately the Pinball Game of Pain. It’s the same game with a different name. I don’t know if I mentioned it or not, could be one of those intrepid thoughts that never quite made it out of my brain even though I thought it had. I think?

Now nearing the end of February and its’ +15° C outside. You just had to know I wasn’t waiting for an invitation to get out in the back yard, I even did a little yard cleanup. I know this weather won’t last at least that’s what every weather person is saying.

March 2018

Well, didn’t March come in like a lion, actually it was more like a snow leopard- sucks. For the past couple of weeks I’ve experienced some strange smells only known to me, not every day, more sporadic. It’s not the burnt toast smell often associated with epilepsy, but more like a buttered toast smell. I’ve had no seizures but I’m chalking it up to PSP, it might be the smell of all my fried brain cells with a little tau protein to be used as a spread.

This past Saturday, Sean, Emma and Owen came to visit Nana and Papa. Julie was away in Ottawa for a synchronized skating competition. I get tired just watching Owen as he buzzes about the house. Emma brought along her art kit we gave her for Christmas so her and I could do some painting. Owen is really into a popular children’s show called Paw Patrol. I ended painting an 8×10 canvas of one of his favourite characters named Chase. It didn’t turn out too bad, I promised Emma I would paint her a picture as well and she chose her favourite Disney Princess, Elsa from the movie Frozen.

We arrived at church on Sunday morning, only to find no one there. Trish checked to see if there were any emails, FB posts or a sign posted to any of the church doors but found nothing. We had a suspicion the service may have been held at senior’s residence in Paris. This service on the road is held a few times a year, but we would have arrived there rather late if we left the church when we did. While I was sitting in the SUV I had an awesome sighting; a bald eagle as it was flying up from the Grand River valley. I never tire of seeing these majestic birds in their natural habitat.

This had been a long week for Trish March Break couldn’t come soon enough. I plan to finish the mural this weekend, I originally gave myself until the end of January I guess my goal wasn’t too realistic. In my altered state of reality, it seemed doable. Finally, I posted the first two winter months of the blog on Friday night but not without a few hiccups. I had to down to download a WordPress app for Word, I used to be able to copy and paste the document right into Word, not anymore.

The mural is finally completed March 11, 2018 I may make little touch up here and there, I don’t even remember when I started it I only know it was before Christmas. I’m okay with the results the walls had a textured finished on them making it challenging to work on the uneven surface. There are two more projects to start I may even get them completed before spring officially arrives. That would be spring of 2019 as I looked outside my bedroom window to see more snow ugh!

Monday March 12^th was our 24^th wedding anniversary. FYI PSP I plan to be around for our 25^th. We had a nice quiet day Marg had come over at lunch time and brought a bouquet of flowers and a box of chocolates with her as well. Trish enjoyed the flowers, I did too, but you have to know I’m enjoying the chocolates more. As I got ready for bed my beautiful bride came down wearing her wedding gown as she has done on many past anniversaries. She looked as beautiful as ever and yes, the gown still fits and with a little extra room .

We travelled to London today to have an EMG and MRI testing for the second year of the ONDRI study. My appointments were finished by 1:30 in the afternoon, leaving us a good part of the day to get things done. I napped for a good part of the ride home but couldn’t quite decide whether or not to nap some more once we arrived home. The appointments seem to take a bit out of me and I was tired for the rest of the day.

Its’ coming up to the second anniversary of Wayne’s passing this Friday. Trish had invited Marg over for dinner and initially Marg declined but changed her mind. She is going to bring over some Swiss Chalet chicken and I put a bottle of wine that Luba had given me at Christmas. The uncomfortable head pressure paid me a visit once again, just after dinner and hung around for most of the night. I was in bed by 10:30 and took a sleeping pill to make sure I would sleep right through. I’ve been having more sleep disturbances this past week. I woke up just past 8:30 on the Saturday morning- wow 10 hours of solid sleep.

On our way to church on this Sunday morning, I saw not one, but four bald eagles soaring high over river valley. One pair locked talons high in the sky. This behaviour is called the death spiral for competing males or the cartwheel courtship ritual for the male and female.

We traveled to London for my Botox injections today- Monday, only to find when we arrived that Dr. Hyson’s office is closed. This was a little upsetting, Trish had rushed home after work to pick me and make the hour and a half drive there. Trish will make some calls on Tuesday to find out what happened with the appointment.

I was not feeling very spring-like when I woke this morning. My upper and lower torso were both stiff and sore along with the usual tree stumps issue. I hope that I can stretch out the stiffness once I begin my exercises.

Today is the first day of spring. It doesn’t look much like spring as I peered out the window and when I opened the back door, it didn’t feel like it either. I had an old friend Peter come for a visit later in the afternoon today, we haven’t seen each other in years. It was great to see him and to catch up. Family and health matters were front and foremost in the conversation. Although he would not say it directly, I sensed he was a little surprised to see me as I am now and not how he remembered me- the Energizer Rabbit. We kept this visit down to two hours I hope that we’ll have a few more especially when the weather turns nice and we get outside in the back yard. I think spring fever forgot to read the memo, its’ still feeling like cabin fever… ugh.

The PSP Chronicles Winter Update

March 9, 2018 ~ T.J. Brown ~ Leave a comment

December 2017

Just typing the word “winter” depresses me. I’m not welcoming the thought of being shut indoors for the next few months. The dark cloud of Jack’s passing hovers over our household as we do our best to move forward, much is the grief that occupies every waking moment until nightfall comes with the hopeful promise of sleep. We all grieve differently; there is no right or wrong way, nor is there a time limit. As a devoted mother Trish’s grief is compounded, she invested so much love, care and time into Jack. He had many challenges in his short life beginning with cancer at the age of 19, Stage 4 Non-Hodgkin’s Lymphoma twice, a growing dependency on pain killers for the cancer, which at one point had him enter rehab. As a result of chemo and radiation treatments his immune system became compromised, he seemed to be sick most of the time. Added to Jack’s challenges, were two of bouts of sarcoidosis then later on epilepsy and asthma, through it all and up until the end Trish stood there by his side.

Now, in all this grief there’s the blame game and the guilt; “only if I had only done this sooner” or, “had I known that” and on and on. Guilt is a slippery slope and one must be careful not to get to close to the edge. Beating yourself up will not change what already happened. Now speaking of getting beaten up, PSP had been a little rougher lately with me, especially my tree stumps.

I learned two things today, one I never seem to remember; to take the floor matt off the chair in the shower before I turn it on and the other; the remote for my adjustable bed just doesn’t work as a mouse for my computer, Karen my alternate PSW agrees duh!

My legs are back to normal, my normal for now which is a 7ish on the scale. Before I crawl into bed to sleep Trish always asks; “What is it tonight”? At the moment I’m experiencing a real bad stiffness with my lower back and left leg. Included in my reply; “Big wheel keeps on turning” I’m the next contestant on Brain Game Roulette, in my house I’m the only playing.

Trish had lost a noticeable amount of weight during the past couple of months, after all she’s been through it’s easy to understand a loss of appetite. Her co-workers are taking her out to dinner tonight I’m going to re-heat some leftovers, I’m still a little full from my DQ Dream I got on the way home from my dental appointment this afternoon.

Two weeks today until Ho-Ho-Ho and still no Christmas cheer, truth is I haven’t had it for the last 3 years, this year will not be any better, especially without Jack. I’ve been working on project for a lovely couple off and on for a few of weeks now, painting a mountainous scene from a photograph on 4 8×10 canvases. The canvases are bound together for the painting but are to be displayed about a ½ to 1 inch apart I saw this once before and found it quite interesting so I thought I’d give it a try. PSP and dementia have taken some things away from me, but I seem to be more creative than ever before, go figure.

We had a family dinner out tonight to celebrate Chris’s 36^th birthday, and even managed to get Matt to come along. He doesn’t eat much as far as variety goes, but does love his fries. Well, weren’t we surprised when the server brought his large order of fries on a quarter size oven baking sheet, Trish managed to get a picture of him and his fries. The restaurant started to fill up while we were there which got me a little anxious, I don’t do well with crowds anymore. In my hurry to exit I ended up leaving my cell, fortunately Chris spotted it on the table and picked it up.

A previous post of the PSP Chronicles from last year recently popped up on my FB timeline, the slug said something like; “I’m still Tim”, but that was then, now I’m not so sure. There are times when I seem like a stranger to myself. I look into the mirror and the reflection is of the man who should be looking back at me, but there’re moments when I don’t know who “he” is.

I have spoken a great deal on my journey with PSP but not so much on my dementia. That’s not by design dementia just doesn’t present the same physical symptoms as PSP which make their presence widely felt. It doesn’t make it any easier to handle on the contrary its more frustrating, at times embarrassing and can even be of a danger to myself. As with PSP, I will not let dementia define me. There are times when I just have to laugh at some of the things I have done or will do which make the “Stupid List”, I know others have laughed too and that’s okay. So, I’m going to read my previous posts, something I never done and come up with “The Stupid List Review” and post it and share a laugh or two. I thought I had a separate file for those things, but I guess I forgot to create one duh!

Learning new things had become more of a challenge, the newer the things, the more the challenge. I am kicking my own ass trying to grasp and apply what it is I’m trying to learn. Some days work, some days don’t. I thought it might be interesting and informative to the “normal” readers. But it’s hard to tell when your brain is scrambled.

Now I’ve completed the project, it’s time to return to the mural I began I while ago. I’m in no hurry to get it done and will only work on it if my legs will hold me up and my hands don’t tighten so much I can’t hold a brush. I’ve been having that incredible head pressure again tonight and the feeling my brain is sloshing around in my skull like Listerine in my mouth, I’m thankful this experience is only sporadic.

I had to go out to the garage today Jack’s car is still here it became a very sad moment for me. My tears were soon replaced with anger at the loss of his young life 37 years old. I was counting on him to step up and help out more after I pass, even told him so while he was in the hospital which brought tears to both our eyes. This isn’t the way it was supposed to be Jack!

Have I said how much I hate winter, I think I have? I had to fire up Syd today he’s my snow-blower and just one of my few mobility aids. Anyhow, it’s not too much work for me. It has forward and reverse traction drive on it complete with a canopy to block the snow and the wind. This had me thinking about a set of skis available for wagons and adapting them to Willie. I have an indoor and outdoor cane both called stick or some other expletive when I can’t remember where I left it last. My outdoor walker is Willie and my indoors is named Wonka, Willie Wonka. Can you see the connection to chocolate? One of the few things I still enjoy, next to a DQ Dream. FYI, DQ does not have a product on their menu called a DQ Dream. The Dream is my creation of a DQ soft dipped serve cone creating a yummy hard chocolate shell AKA Chocolate Dipped. I thought I would just put it out there DQ, it’s in print.

I read some encouraging news today that came out of the UK researchers have been trialing a new drug that is having success in eliminating the Huntington protein. This mutated protein which causes Huntington’s, another neurodegenerative disease is genetic, unlike PSP, CBD or MSA. Huntington’s, PSP and other Parkinsonisms have many similarities and a treatment for Huntington’s could be a back door to the treatment other neurodegenerative diseases.

This morning I had a plumbing repair for which I needed to go to the hardware store. Sometimes I miss my driving privileges it was so much easier when you didn’t have to ask for a ride. The job itself wasn’t complicated, replacing the basket strainer and drain in the bathroom sink of my cottage. I took longer to get up off the floor from kneeling on my knees, than the time it took to replace the drain and even longer yet to lose the extra stiffness in my legs.

There were 2 more deaths in the PSP community this week, which now makes 3 as I see a new post on the group site, very sad. This strengthens my resolve to fight this beast called PSP even harder. Research and medicine need to do more, but it requires funding and tax credit consideration by the U.S. Congress and Senate for CurePSP® and other similar organizations, such as The Michael J. Fox Foundation for Parkinson’s research.

CurePSP® a non-profit foundation is, and continues to be the leader in funding research, awareness and support of prime of life brain diseases. Cure PSP® is sounding the alarm bell as a result of recent changes of the Tax Cuts and Jobs Act that will have an adverse effect on research. This is the statement released by The National Organization for Rare Diseases (NORD)

Response to Senate Vote on the Orphan Drug Tax Credit

December 4, 2017 by Lucas Metherall for CurePSP®

This statement was released by the National Organization for Rare Diseases (NORD), on Dec. 2, 2017, in response to the passing of a tax bill that has serious implications for drug development for rare diseases.

Washington, D.C., December 2, 2017—The National Organization for Rare Disorders (NORD), the leading independent non-profit organization representing the 30 million Americans with rare diseases, issued the following statement in response to the Senate passage of its Tax Cuts and Jobs Act:

“Today, the Senate voted to substantially diminish the Orphan Drug Tax Credit as part of its Tax Cuts and Jobs Act.

It is difficult to put into words how gravely disappointed we are that the Senate has chosen to cut, nearly in half, a crucial incentive for rare disease drug development when 95 percent of rare diseases remain without one single treatment.

The Senate version of the Tax Cuts and Jobs Act will now head into conference with the House of Representatives’ version, wherein the Orphan Drug Tax Credit is repealed entirely. While we are dismayed at the possibility that the Orphan Drug Tax Credit could be weakened, to have it repealed entirely would be absolutely devastating.

Consequently, we will continue to make our voices heard on the importance of this life-saving credit.

With over 200 patient organizations and the millions of Americans that comprise the rare disease community, we will continue to implore that Congress uphold the Senate’s version as it relates to this crucial incentive.”

So, lets’ be clear here, Fact; The new bill that has been passed will reduce the U.S. corporate tax rate from 35% down to 21%, which in the President’s own words; “will be incentive enough for large U.S. corporations from keeping their money out of the Cayman Islands”. Fact; this will be the mechanism that will create more jobs and “Make America great again”. Fact; Trump through his business holdings will personally benefit from this new bill by some $5 million dollars annually. Fact; It will reduce the Orphan Drug Tax credit by 50%, reducing the incentive for rare disease drug development. Fact; These new tax measures will also affect 13 million-Americans leaving them without Health Insurance. Fact; He is a “very stable genius” according to himself, hard to argue the fact… NOT!

A previous post of the PSP Chronicles from last year recently popped up on my FB timeline, the slug said; “I’m still Tim”, but that was then, now I’m not so sure. There are times when I seem like a stranger to myself. I look into the mirror and the reflection is of the man who should be looking back at me, but there’re moments when I don’t know who “he” is.

I have spoken a great deal on my journey with PSP but not so much on my dementia. That’s not by design dementia doesn’t present the same physical symptoms as PSP which make their presence widely felt. It doesn’t make it any easier to handle on the contrary its more frustrating, at times embarrassing and can even be a danger to myself. As with PSP, I will not let dementia define me. There are times when I have to laugh at some of the things I have done or will do which make the “Stupid List”, I know others have laughed too and that’s okay. So, I’m going to read my previous posts, something I never done and come up with “The Stupid List Review” and post it and share a laugh or two. I thought I had a separate file for those things, but I guess I forgot to create one duh!

I forgot what I was doing while I was doing it or how to do it in the middle of doing it. Hey, at least I get a lot of practice at the things I attempt to do. I spent a couple of hours in my workshop today trying to organize things. As far as I was concerned, it could have been 2 hours or 2 days, time really doesn’t have much meaning anymore. The thing is I really had no idea how much time had passed, in my mind it had taken no time at all.

Today has caught up with me. I rapidly collapsed within myself. I became unable to accurately express my thoughts, finding the correct words became more and more difficult. Everything around me was moving in slow motion, almost stopped and sound became hollow, almost distorted. Tomorrow, the entire process with different activities will start all over again ending in basically the same results. As I like to say, wash, rinse and repeat. Life is boring for those of us with an altered reality.

My latest journal entry just disappeared. I don’t know what button I pushed I shouldn’t have or what connection in my brain closed causing me to lose my post, I just don’t know. I do know I’m becoming incredibly frustrated and word retrieval is becoming much harder than normal. So, fair warning, what may have once made sense may now be pure garble.

This monster that is forever in the pathways of my life is tearing at the fabric, the glue that holds my family together each and every day. Knowing an approximate expiration date so to speak, gives me the opportunity to reflect upon how I live the remainder of the life given to me. To that end, I have embarked on a new project details at 11:00.

I better understand I need to let those I care about know how I feel I can’t assume there will always be time later. To let go of the animosity I feel for those who have supposedly aggrieved me, who has the precious time to waste on it, I must remember this. To live my remaining time in such a way I would be a positive influence on my loved ones long after I’m gone rather than just a sad memory. To let my emotions flow, as they are now, as tears drip on the keyboard as I type this. Not out of sadness, but rather, because I realize I still have time to make a difference and make life full for the remainder of the time I have left. No, not devastating at all, liberating yes, saddening, coalescing, maddening and bonding, all of these and yet, so much more.

Wow! I have just read the aforementioned paragraphs; where did that come from? I must have had a cerebral moment, better than a brain fart I guess. I’ll end it here tonight so there’re no further surprises.

Dementia of any type is no laughing matter. The angst caused by forgetfulness frustrates and the embarrassment often associated with it isolates you. An unintended consequence I think. One minute you appear to be normal and the next well, not so much. Last night for instance, I made a repair on my shower pan then painted the area and waited for it to dry before I could seal it. This could have all been completed the same night. I’d forgotten I even did the work until the next day.

I had texted Trish this morning and asked why she didn’t say goodbye. She said she did while I was working on the shower pan I forgot from the night before; I did not remember. The forgetfulness continued through my exercise routine as I missed a set of exercises I do before I move on to my palates. I got settled into bed tonight only to have Trish come back down with my night-time meds I had forgotten to take oops.

Sometimes I sit and just let memories flood my mind, it’s funny how one memory will lead to another, irrelevant to the first one. It’s true to an extent they say we forget nothing we might repress or hide some of those memories which are bad and cling to the good ones. When I say extent, I’m mean to those who do not live with one of the several dementias, where cellular damage destroys areas of the brain and the memories associated with it. With FTD- frontal temporal dementia short-term memory is adversely affected. Can’t help but wonder though in my case, if my brain through dementia closes one “memory” door and opens another, allowing all the old and often forgotten memories in. Think I will highlight this thought in case I forget it in a few minutes from now lol.

Overall, I’ve been about a 7 on the stiffness scale this week, my tree stumps are back up to a 7½, with a few more cognitive issues, confusion. I’m feeling a little post nasal drip I have to nip any signs of a cold in the bud. The common cold can wreak havoc on a patient with PSP it can well turn to pneumonia and even be fatal, not in my favour.

Today is the first day of winter, with more snow planned for tomorrow according to the weatherman. I gave Luba and her husband a unique painting of the mountains back in their native Slovakia, now she understood why no work was being done on the mural. Trish took me out, and I did the last bit of my Christmas shopping tonight all the grandkids are done. While brushing my teeth later, I drank a shot of Listerine instead of rinsing my mouth with it, I’ve had worse bar scotch, but I won’t make a practice of it.

Trish and I attended a Christmas Pageant on Christmas Eve, my granddaughter Grace played the Virgin Mary cute. The pageant was followed by a traditional Catholic Mass an hour-long when it was over we came out to another snow fall ugh. We still had to drive to my sister-in-law Nancy’s house to pick up the Chinese food we ordered for tomorrow on Christmas day.

It’s Christmas morning and outside is a winter wonderland, must remember to fill the bird feeders. All this fresh fallen snow will make it more difficult for our feathered friends to find the food they need. Being up before everyone else I had fed River and the cats. Drinking my coffee in silence I paused, acknowledging this Christmas would be difficult. Not just for Trish and, but for all who are grieving the loss of a loved one(s).

I’m sorry to say I don’t enjoy this holiday anymore I haven’t for the last few years. “Where are you Christmas, why can’t I find you”? I’ve looked deep inside my heart but it’s broken, Trish’s too. So much loss, my oldest stepson Jack passed away four weeks ago. My dear friend and brother in Christ Mike went to the Lord this past July I miss him and the opportunity to grow our friendship even further. We said goodbye to Matt’s beloved Cooper, my best friend this year too. The PSP train had played a large part in all of the apathy I’d been feeling. I thought it should stop at some stations, but this train failed to do soand keeps on going.

Trish had asked and I’ve showed her how to operate Syd, my snow blower AKA my motorized walker. Now it’s a fight, to see who can get out and clear the driveway first. They’re a few more things I will have to show and teach her around the house when the time comes I can no longer to do them myself.

I’ve started on gabapentin now, it’s supposed to help with nerve pain but don’t ask me the dosage I don’t know the dosages of any meds. What I know is this, between all the meds and two vitamins I’m on, the total number of tablets per day is 31. Great, now I have something in common with Baskin Robins, they have 31 rotating flavours of ice cream and I have 31 meds. It’s funny how I keep coming back to ice cream. You know I would prefer it over the meds.

Christmas morning had been very difficult for me and Trish to be sure. David had come over as he had done for the last couple of years it’s not the same without Jack. We keep up the appearances for Matthew, he still believes.

One gift I received from Trish was Google home, it’s sure to make things easier for me. It’s a strange feeling talking to a sphere who answers you back. My niece Jodi also has one and is over for dinner and she set it all up for me. I can see the practicality of this little unit, but I’m certain there’s entertainment value there too. Trish was happy with a gift Marg has given here, a multi-set of screw drivers. Sometimes she’s looking for a screw driver and says there isn’t one in my tool box or tool belt. I only use an extension bit for a drill with the required bit, work smart, not hard.

This has been the most unconventional Christmas day we’ve ever experienced. We, as in Marg, Nancy, Jodi, Trish and I all went to a movie today. We came home for a Chinese food dinner we had ordered the day before it was lot less stressful meal wise for Trish. She needed no more added stress, and it all worked out fine.

Phoenix didn’t find Christmas day at all stressful. Santa brought him a 6 inch linen log filled with catnip, he’s a vocal cat as it is, but he looked stoned and was singing. His antics provided us with a little entertainment, which proved to be a nice distraction for a while. On the 27^th we went to Chris and Liz’s place for dinner and gift exchange. I still enjoy watching the grandchildren opening their gifts, the smiles and facial expressions of surprise I hope I never tire of it.

I was thinking of Mike this morning as I listened to my morning worship song 10,000 Reasons. There’s a verse which sings; “And on that day when my strength is failing, the end draws near as I my time has come, still my soul with sing your praise unending 10,000 years and forever more”. This was Mike, right until his last breath, I miss you man.

As reported on the news today, Maple Leaf legend Johnny Bower had died at 93. He was in-goal of the four Stanley Cups the Leafs won in the sixties, the last one being in 1967, over 50 years ago. Earlier in the journal, I said I would not check until the Leafs win another Stanley Cup and the much fabled treasure of Oak Island is found. I don’t think I need to be too concerned of either one of those events this year. Who knows? Miracles happen, it might even be the year research and medicine finds a treatment for PSP, better yet a cure.

I woke up before my alarm today, went to the bathroom and fell asleep standing up leaning against the wall of the shower and didn’t miss the toilet- bonus. Images flashing through my mind animated and real YouTube video on PSP, this morning good with a patient and their living will and Botox.

I’ve just read the above paragraph, something I rarely do. The last half of it makes no sense, but I will not change it. This just might be one those; “Hello Tim, are you there?” days ugh! It’s bloody cold outside, records are being broken. This is my Segway; “You know it is cold when… the temperature at the North Pole is warmer than us in Ayr today” in fact, 4° C warmer.

Julie, the kids and the hormonal dog had come on December 30^th for a gift exchange and dinner. Her birthday was yesterday on the 29^th,the same as my Dad’s. She became upset during dinner at the dining room table. An empty chair and place setting made it more real for her that Jack’s gone. Even I find myself sometimes shaking my head in disbelief.

We spent New Year’s Eve at my sister-in-law Nancy’s house and by we; I mean Matthew. That was a surprise for me to hear he would come along, but not before he started with one of his ugly behaviours. It didn’t last all too long; I was ready to say to hell with it and stay home. My other niece Heather and her husband Paul are visiting from Alberta and are expecting their first child in 7 weeks’ time. It ended up being an enjoyable evening.

It’s now the end of December and 2017. There were a few highs, but many lows. On January 20^th we said goodbye to Cooper, my best friend and Matt’s furry guardian angel. Trump was sworn in as the 46^th President of the United States the same day ugh! On July 10^th my dear friend, a brother in Christ, and partner on the PSP journey Mike Sweeney, declared a spiritual victory over this insidious disease. Mike was a mighty PSP warrior, the disease may have taken his body, but it could never take his faith.

The lowest of the lows occurred on November 23^rd when my oldest stepson Jack was removed from life support and died soon after. Our hearts and our home are filled with a deep emptiness as we continue to struggle with his death.

January 2018

January had not begun well for the PSP community a few more deaths were already announced. We travelled to London on Tuesday morning for my appointment with Dr. Burhan only to find out he was on holidays. Trish rescheduled for January 17^th, the trip wasn’t a complete waste of time though; it allowed Trish and I quiet time there and back.

I’ve been working on a puzzle Sean gave me for my birthday, my niece Jodi started it and Luba and Karen are contributing to it too. This gave me a break from my wall art and vice versa. There’s another project in the works but Trish needn’t worry, it doesn’t involve a ladder. The relief of my massage earlier this week had worn off. I’ve been experiencing the PSP pinball game effects on my body, left leg, right shoulder, left shoulder, left leg, left arm, left leg, both arms. Whoever is playing is superb and still on the first ball.

On Saturday morning I woke up feeling like the pinball player got the highest score plus bonus points. I’m feeling about a 7 ½ on the scale, also needed to force both my eyes open, a first. I spent most of the day between working on a puzzle and mural I began a while go. Trish will babysit the grandkids tonight, so I’ll spread my time between the mural and a new project I’m working on.

This Sunday is the first time we’ve been back to our church since Jack was admitted to the hospital. The sanctuary was full there was a baptism for a baby boy named James. Our new minister drew a comparison about a campfire and a baby, all you want to do is watch them I liked it. As much as my interest in most things is waning, children and babies still bring me joy.

This is two days in a row with the eye issue. My left side, shoulder and scapula area and my lower back were sore. I discovered as I got out of bed I was more wobbly than usual. Then later it would be one of those shit for brains this morning. I deleted a significant portion of my blog I was working on, gone to the netherworld of the internet. I left River outside for well over an hour while trying to fix my snafu, great! The PSP family had lost at least a few more loved ones this week alone. As I said earlier, not off to a good start.

I had forced my eyes open again this morning if this becomes a trend I’ll be talking to Dr. Hyson who administers the Botox injections for my eyes. My rigidity is about a 7 on the scale, with new and different pains coming and going, stopping by for a quick visit. I’ve read about two more members of the PSP community who had passed away in the last 24 hours, sad news to be sure. This took me to a dark place I didn’t want to visit anytime soon.

My grandson William had turned six years old. We went over in the afternoon after my nap to open gifts and to have cake, which was a large cinnamon bun that Liz had made. William loves cinnamon buns he had his first one on our Disney Cruise a few years back. So after the cinnamon bun cake, baked cookies and coffee we left. Dinner was certainly out of the question for me, I only had meds left to take which Trish made sure of. It was my intention to continue painting on the mural which I did, but not for long. I caught a little of the news on TV, but I’m at a loss to explain for the gap in time, two hours at least.

This brings me back to the discussion about dementia, which I thought I started to before, I’m not sure I can’t remember. I’m not in the practise of going back and reviewing what I’ve already written. I could be tempted to change something which makes little sense, but it did at the time I wrote it. Such nonsense only speaks to my condition.

It should give the reader a better insight into the cerebral flatulence going on inside my head. And like today, the added frustration coming from a complete brain fog. It’s also worth noting most of the time I think I’m batting 500, the other times I’ve just left my brain in the dug-out. My past is my present, my present is my past. My present may also be my present I’m feeling like a character in a new Back to the Future spin-off.

Today is blue Monday, the most depressing day of the year the news is reporting. I will lighten things up a little while on dementia which is not funny. However, some things are just worth laughing at. That said, I’m introducing Tim’s Top 10 from The Stupid List, which I keep in a separate document and mentioning in my writings. So, counting down just like Letterman’s Top 10, here are my top 10 things on the “Stupid” List to date.

Tim’s Stupid List… Top 10

Constantly putting things away in the wrong place, like the toaster and dish soap in the fridge or food processor in the freezer.
The time I showered with my underwear on.
Mistakenly ate dog treats and on more than one occasion. I thought they were cookies, in a way they were if I was a dog.
The time I tried to make Matthew’s protein shake in the blender using frozen french fries.
The time I put deodorant on my face instead of shaving cream and shaving cream on my hair instead of spray gel.
The time I poured Matt’s protein Shake into my coffee cup, when I only wanted cream.
The time I drank a shot of Listerine® instead of rinsing my mouth out… nasty.
The time I went to use Febreeze® instead of mouthwash, would have had the same effect I’m guessing.
The time I peed in the en suite garbage can instead of the toilet, easy to confuse the two, even if they’re in two different rooms.

Drum Roll please!

The time I brushed my teeth with Voltaren Emulgel, not guaranteed to whiten your teeth but it will make your gums feel better.

There are other stupid things worth honourable mention and more yet in the making I’m sure. I may make this a new feature with the blog.

I went to bed tonight at a decent hour 11:00pm. I lay there awake to well past 12:00 and got up and took a sleeping pill. It’s now just before 1:00 am and I’m still awake and so is Matthew, although he is quieter than most nights. I rarely have sleep disturbances but when I do, they’re annoying. Phoenix is looking at me confused here as I peck away at the keyboard, waiting for the sleep medication to announce this day over. I think I might have heard the call, so I’ll warm up my heating pad for the time I crawl in under the covers. If I fail to fall asleep this time, I’m just going to get up, and do more painting on the mural.

I can’t recall if I’ve ever mentioned I require help bathing, if not, I do and for about a year now. Luba and I will talk about anything as she washes my back in the shower, helps me to dry off and get dressed. I don’t give privacy or pride a second thought as I’m standing there butt naked. It could be Karen, Vilma or any other PSW, it doesn’t matter when you can use the help. Luba was back tonight to supervise dinner and to make sure that took my meds. She worked a little on the puzzle after I chilled, waiting for the effects of the medication to pass. We, as in Luba and I, finished the puzzle Sean gave me as a birthday gift tonight.

We travelled to London today for my 3 month appointment with Dr. Burhan. Only this time, Trish called to make sure we had the appointment before we left. She had gone to a PSP support group meeting in Toronto tonight. Deb sent me a message with an update on my brother-in-law Mike.

Pinball pains this morning, as I begin my inventory of what is and isn’t working, I’ll wait and see what stays and what goes. Several loved ones in the PSP community have earned their wings this week. I can’t recall a time since I’ve joined the groups where there had been this many brave souls freed from this ugly disease. Extra efforts to raise PSP awareness and fundraising will lead to more research. With the goal of at least finding a treatment and slowing down the disease’s progression until a cure is found.

Today had not been too bad PSP wise. There’s the usual rigidity, soreness and cramping of the legs and more of the same in my right arm. All in all it’s been manageable. I have committed most of my time today furthering my work on the mural, it’s coming along. It’s hard to stay motivated and like with so many other things I lose interest. I’ve given myself a completion date of January 31^st this year.

I’m experiencing increasingly more leg issues, more cramping/contractions, unsteadiness and weakness overall. Most of the other muscle issues seem to be managed with the various meds and with exercise, specifically stretching. I had a brain hiccup at lunch, I took the wrong meds. It was an easy enough fix though Trish changed them up with dinner time meds, no harm, no foul, this time any ways.

Every night before I nod off to sleep I think about the day, it’s more like wondering about the future for my family. This had been a hard week for all of us. Monday was difficult for Trish,she had come across a meaningful card Jack had given to her some time ago. There was the troubling news about my brother-in-law and his cancer. Then there was the passing of several people from the PSP family. It was also one year ago today we said goodbye to Cooper. I went to bed just before 11:00 tonight and I’ve been staring at my eyelids for two hours now, I got up and took a sleeping pill.

I’ll journal for a while until sleep calls, hoping the line’s not busy. A thought just occurred; in this day of fewer and fewer land lines; call forwarding; call waiting; voice mail etc.; is there such a thing a busy signal anymore? It’s 1:41 am, and I thought to myself; who the hell cares?

I’m guessing, more like hoping this is the start of a new week. It would be wise to push the reset button and start again. I was very unsteady on my legs this morning when I first got up and coupled is the pain and contractions in my left leg. My right front shoulder feels like I’ve been hitting a tackling dummy all night long, I need to take my meds and get exercising ASAP before my body locks right up.

We watched a TV show tonight- The Good Doctor, there was a scene I found difficult to watch. It reminded me of the circumstances leading up to the point when Jack was removed from life support. On the show and in real life, the Doctor could not say with 100% certainty a patient who had no normal brain function (not brain-dead) could never recover. In fact there is documented evidence in respected published medical journals where patients had recovered brain function. In one such occurrence the patient had been comatose for seventeen months.

The PSP Chronicles… Final Fall Update

December 2, 2017December 2, 2017 ~ T.J. Brown ~ Leave a comment

Its’ Tuesday, and today’s devotional reading is titled “Wake up Call”… there is a connection to current events. Trish has texted me that the hospital is going to admit Jack who is still vomiting and very dehydrated. I was sitting outside in the sanctuary with my coffee for prayer time and reflection, there’s something that has been bothering me for a very long time and I have continually prayed on it. I thought that the Lord may have answered those prayers as he always does… in His own way and in His own time. It was then as I thinking about this that I felt something moving inside my shirt by left front shoulder, as it turns out it was a wasp which sent me its own kind of message too… ouch. I dropped my coffee, spilling it all over myself and the patio…River didn’t seem to mind as he licked up the spilled coffee, I’ll wait to see if he gets a caffeine buzz.

Trish called Jack to see how he made out overnight… not very good, no sleep and still vomiting. The next time I spoke with her, I learned that Jack is now in a medically induced coma. Apparently he vomited and aspirated one litre of fluid, because his lungs were full, his heart had stopped and the ICU Code team had performed CPR for several minutes to keep the blood flowing to the brain until he had a heart beat again. The induced coma was a precaution to prevent brain damage, a brain and full body scan was ordered by the doctors. At this point the doctors still do not know what they’re dealing with but feel Jack has some kind of intestinal blockage which prompted all the vomiting.

I went to the hospital this evening with my sister-in-law Marg and was not prepared to see what I saw… Jack hooked up to a total life support system. He has every kind of sensor you can imagine and special “cuffs” around his legs that massage/vibrate to prevent blood clotting and numerous bags of I.V. fluids. I’ve seen people in comas before, but I have to tell you this left has me shaken I can barely see his face for all the tubes. This is not the mischievous young teenage boy I first met and grew to love twenty-four years ago. My heart is aching and PSP doesn’t seem to care, so I suck up what I can. Marg and I were there for a few hours with Trish and then left… she’ll be coming home later tonight, but will be returning first thing in the morning.

Marg has come and picked me up at home again to take me to visit with Jack and Trish… she has been pretty much at his bedside since he was admitted on Tuesday. Jack, who is still comatose, was taken for a full body CT scan earlier in the day. The results from the brain imaging are not positive, Trish who always puts on a stoic front is in tears and I can’t take away her pain. The doctors are trying to reduce his sedation and pain medication levels as these can sometimes skew brain activity. Another more comprehensive CT scan has been ordered for tomorrow… we’re praying for better results. We still do not know what the blockage is, that is obviously not the priority right now. Jack does have a fever which is a concern for aspirated pneumonia and is receiving antibiotics. Aspirated pneumonia resulting from swallowing issues is one of the leading causes of death with patients who have PSP.

I’ve been doing some paintings in my cottage (my man cave) these, along with my exercises and other routines have proven to be a bit of a distraction from the grave situation with Jack. PSP is still nipping at my heels, reminding me that this is not all a bad dream. Lately, each day is more challenging than the other. The BGR (Brain Game Roulette) Wheel doesn’t give a damn about whatever else is going on in my family life, its content on making the presence of PSP and all its baggage known. I say, that you can take the P in PSP (progressive) and P as in put it where the sun doesn’t shine.

Trish came home last night and had a better rest than she gets while camping out in the ICU. My morning has started as a 6ish on the scale… same affected areas just a little more painfully noticeable. It’s still early but I already have something to add to the Stupid List. I was looking for the ketchup that I had used a little while earlier… found it in the cupboard instead of the fridge. When I went to put it back, I discovered that I had put the toaster away in the fridge… duh!

Jack has a couple of infections… Trish is weary… spends most of the day at his hospital bedside. She has some wonderful co-workers and friends who have stepped up, bringing cooked meals over to the house, collecting money for parking costs and one even walks River for us… something that normally Trish does. If any of you read this blog, I’d like to give you a big shout out… THANK YOU! Words really can’t express our gratitude.

I awoke this morning a less steadier than usual. To sum it up, my legs are shaking and my knees are weak, can’t seem to stand on my own two feet… yea I’m all shook up lol. Humour is just as good as any medication that’s prescribed for me.

Jack had another MRI today… showed some inflammation in the brain, but no serious swelling. The doctors want to reduce this inflammation and then have another scan. Another positive, no stomach cancer… something the doctors’ had considered too due the internal bleeding. This is one less worry for Trish as she was seriously concerned, given Jack’s previous history with cancer.

This whole ordeal is very difficult for the family, but more so for Trish, her heart is aching… her heart is breaking, your children are still your children regardless of their age. She has invested so much love and time in Jack… he’s had so many challenges throughout his short life. Sadly, we still don’t know the outcome of Jack’s situation which has left some family members thinking negative consequences. Jack has another MRI and lumbar puncture scheduled for today, with another ultrasound and echo-gram scheduled for tomorrow.

To keep me busy, Luba has provided me with plenty of reference materials as I continue with my wall art in the cottage…I coined this phrase as cottagizing©… probably won’t be too long before Martha Stewart or some other kind of DIY designer type try to lend their name to this possible new trend lol. This is somewhat of a distraction from all the real life drama and the PSP… which is constantly reminding me of its presence. I actually got outside today for a couple of hours to rake and bag some leaves… there’s just too many to mulch at this point. I might want to rethink that, there’s still one maple tree with quite a few leaves on it and mulching is a hell lot easier on my body than raking and bagging.

Our church has offered me help around the yards if I need it and I’m thankful for the offer, but I can manage for now, translation… I’m a little obstinate. However, I’m grateful for the pastoral care that the church has been providing Trish at the hospital and the many prayers for Jack.

There was a documentary about Sloths on TV last night you might recall there was time where I equated my movements with that of a sloth, but I really think that they move faster than me sometimes lol. I planned on going to the hospital this morning with Trish to visit Jack, but it’ll wait until the afternoon… can’t seem to get out of 1^st gear. I almost mixed up my night-time meds with the morning ones, my legs feel like they’re burning and I’m in a deep brain fog… going back to bed and hope that when I wake up that’ll be offer to a better start.

I managed to get another 2 hours of sleep and I now feel like I have control of myself… cerebrally I think. The tree stumps (legs) are still an issue, in fact they’re getting worse, but there’s less burning pain at the moment. This has allowed me to go outside for a while and cut back some plantings and wondering if I’ll be walking at all this time next year. I won’t dwell on that, instead I’ll try to figure out a mental detour and put that thing they call neuroplasticity to work.

Marg came over later in the afternoon to drive me to the hospital to see Jack. I’ve been very concerned over Trish as well, whether she’s getting enough rest, eating properly… that sort of thing. If I’m being honest, I’m wondering if she is spending too much time there as well. When I walked into Jack’s room… he’s still in ICU and still on life support, I was quickly reminded why she doesn’t want to leave his bedside. The doctors have taken him out of the medically induced coma and are trying to gradually wean him off the ventilator, his eyes are open and he can respond to simple commands by nodding his head yes or no… this so much better than the last time I visited with him. At one point as I was talking to him, I had to swallow hard because of the lump forming in my throat as I wiped away a tear from his eye and my eye.

I can’t believe that it’s the end of October already… finished off the month with a forwards fall, which took me a little time to get up off the floor and steady myself. Matt was nearby and brought me my cane and then quickly texted Trish about the incident, she called right away but it’s all good now… no boo boos. My legs haven’t been very kind to me these last few days and with Jack’s hospitalization, I wasn’t really aware of some new issues with my left side… minor contractions and a lot more fatigue overall. PSP is such an indiscriminate disease it doesn’t care about you, your family or circumstances, only hell-bent on torturing you slowly inside and out while your family and friends grieve their living loss.

That has all changed this morning… Trish came running downstairs in tears. As she was heading out the door for the hospital she told me that Jack had just had another cardiac arrest. I called my sister-in-law Marg to let her know and asked if she could go up to the hospital to be with Trish. Jack was resuscitated, but because of a massive air build up (embolism) one of his lungs collapsed.

I’m feeling a little overwhelmed with all that is happening, Jack has been in ICU for nearly 4 weeks now and most of that time comatose. Trish puts on stoic front, but she’s emotionally fragile. Her first-born son is on life support, I, her husband am terminally ill and Matthew, with his worrisome and challenging behaviours.

I try to stay distracted with my wall art, but at one point I became overwhelmed, broke down and cried for Trish… I’m certain that some of those tears were for all of us. The doctor thinks HLH… a rare blood immune disorder… chemo from previous cancer treatments have likely compromised Jack’s immune system, but he is still not ruling out lymphoma. I later learned that this was around the same time when Trish lost it discussing bone marrow sampling with her ex who has POA and did not want to do the procedure. The other two boys were present during this heated discussion and clearly understand that Jack’s life lies in the balance. At that point Trish, whom never loses her shit, stormed out of the room. I visited with Jack on Sunday and I’m still in a state of disbelief over the current events, it’s almost like a bloody soap opera.

The tree stump(s) of a leg(s) are becoming increasingly painful my knees, thighs and calves have become more affected with burning pain and contractions… I would rate them at an 8 1/2 on the right side, 7 1/2 on the left. My neck is reminding me that it’s stiff and sore as well, too bad the stiffness can’t find it way to that area where it really counts lol. That said I’m having a massage on Tuesday evening which should provide me with some temporary relief and afterwards a DQ dream to satisfy my ice cream fix.

Overall I feel a 6ish after my massage, my legs feeling like a 7 which is down from the 8 average. The medical drama with Jack and my concerns over Trish are proving to a welcomed distraction from the PSP. Pam… Mike’s wife has been contact with Trish and is praying for the best possible outcome for Jack, as are the 50+ prayer groups across the country. We’re into the fourth week now of Jack’s hospitalization in ICU, and it’s still a day by day matter. He did have the bone marrow procedure today despite some opposition, but we’ll not know the results until later on this week or maybe the early part of next week.

Trish spends most of her time at the hospital keeping a bedside vigil, discussing Jack’s condition with the doctors, nurses, social worker and family members that visit. Our nightly tea time is not quite the same, but we do manage to squeeze it in. Our pet family is feeling the stress as well one of Trish’s co-workers who lives one street over has volunteered to walk River in the evenings… something Trish would normally do.

I put my lunch meds into the dog’s treat jar today, while Karen my alternate PSW and Trish stood right beside me, don’t ask… don’t know. When I realized what I had done… they hadn’t noticed yet, trying not to be too conspicuous I slowly emptied the contents of the jar on the table to retrieve my meds. At this point Trish looks down and asks me what I’m doing she thought I was going to snack on them… I’ve made that mistake in the past. Her look of surprise turned to alarm when she saw my meds at the bottom of the jar. Oops… my bad lol.

On Friday November 17^th we were called to the hospital for a family meeting. The doctor who first saw Jack when he was admitted, the social worker, a nurse, Trish and the boys, myself, her ex and his partner with the same last name were all present. Jack’s prognosis is grave… complete and irreversible brain damage, although not brain-dead. This was also the opinion of the other doctors including neurologists who had seen him. This brain damage would leave Jack in a persistent vegetative state, he would experience epileptic brain seizures 24/7 and would require institutionalization. The doctor then read the letter of direction detailing Jack’s wishes concerning medical care in his living will, which was drawn up 16 years ago after his chemo and radiation treatments for his 2^nd bout of stage 4 Lymphoma.

A living will is a smart idea for everyone… the sooner the better, but you must keep it updated, people can and do change their minds. Advancements in medicine are continually being made, conditions that once concluded a poor patient prognosis may now be treatable and have a better outcome. That said a poor prognosis I believe is the single most deciding factor behind the advance medical directive in most cases at the time the will is drawn up.

We all listened as the doctor read the letter of direction and she commented on how well Jack had expressed his wishes concerning medical care towards end of life. I couldn’t help but wonder if this specific direction influenced her decision which ended in the discussion of palliative care. I only mentioned this because those who really know Jack, knew that he would not understand the language used in this direction, let alone pronounce the words and would sign anything he was told to.

After this meeting, Trish’s ex … Jack’s father who is the POA and his partner left the room as did the doctor, social worker as well as the nurse that was on duty today. Trish and I then had a discussion with Chris and Dave, it was very difficult and did not go well… if tears were dollars we’d all be rich. Trish had asked the doctor late last week if she could get an outside opinion and that any decision concerning Jack’s outcome be made after Matthew’s birthday next week on November 22. The doctor didn’t seem to have a problem with that, but ultimately that would be up to the POA, we later learned that the POA wanted to start palliative care that same night of the meeting… Friday, November 17^th. Now we were faced with a decision that would see Jack removed from life support Sunday, the 19^th at 11:00 am and the discontinuation of hydration and nutrition. I sure hope that his father can live with that decision… being the POA and all. Chris and Dave would later convince their father to hold off until after Matthew’s birthday, thanks for being so considerate… excuse my cynicism.

As Christians and Roman Catholic, we (Trish and I) have struggled with this decision, not just emotionally, but morally and ethically. I mentioned this to Chris during our meeting afterwards. He said he talked to his priest who told him that in some situations that removal from life support is appropriate which seemed to support this action. I would later contact the Bishop Douglas Crosby of the Hamilton Diocese to see what the Church’s stated position was on euthanasia, after all, this is what Trish and I believed would be the final outcome for Jack. Chris and Dave were in agreement with their father… the POA, as they believed that Jack and they would not want him to live this way.

It was clearly obvious to Trish and I that the decision to remove Jack from life support had already been made. This emotional-filled meeting was more a justification for the action that would soon take place.

The following Sunday morning, barely opening my hands… fingers tightening and left leg in spasms, I managed to send off an email to Bishop Crosby. I received an email response from the Bishop’s office later that Monday asking me to call the diocese on the Tuesday, and was also directed to a website that would also provide me with detailed information.

Detailed it was, and it clearly stated what the Church’s position on euthanasia. The Roman Catholic view: “Euthanasia is a grave violation of the law of God, since it is the deliberate and morally unacceptable killing of a human being. I have selected a few quotes by Pope John Paul II, Evangelium Vitae, 1995… the Church’s stated position has not changed. The Roman Catholic Church regards euthanasia as morally wrong. It has always taught the absolute and unchanging value of the commandment “You shall not kill”.

The Church has said that and Trish and I agree:

“Nothing and no one can in any way permit the killing of an innocent human being, an infant or adult, an old person, or one suffering from an incurable disease, or a person who is dying”.

“The Pope has also spoken out against what he called “culture of death”… right to die in modern society and said that human beings should always prefer the way of life to the way of death”. Laws involving the “right to die” are changing from country to country, state to state and province to province. “The church regards any law permitting euthanasia as an intrinsically unjust law”, but does make certain provisions as in the case of “brain death”… Jack is not brain-dead, or such as “the right to refuse extraordinary medical means to preserve life”, refusing such treatment is not euthanasia. Lawyers often use this position to “bend” a decision in their favour. Have I ever said that I have nothing but contempt for lawyers? Yah yah… not all lawyers but most of them and do you know the difference between a lawyer and a liar? Answer… the number of letters between the l and the r. A lawyer told me that… true story.

The courts are now leaning more and more towards the position of advocates for the right to die with dignity position, as lawmakers re-think and even change established bills and legislation. Something often overlooked are the documented cases of patients in a PVS (persistent vegetative state) that have recovered significantly over a period of time. One might argue that those cases are far and few between, but to the families of those patients, their loved one might just be one the far and few between… we’ll never know.

During my telephone conversation with the Bishop’s office, the Church’s position was made very clear as aforementioned. In Jack’s case the intended withdrawal of hydration and nutrition and the ventilator removal would hasten Jack’s death and is therefore… euthanasia. The Bishop’s office also acknowledged the courts of law have and are superseding the laws of God. Lawyers and advocates argue the case of advance medical directives as stated in the living will and that those wishes be respected and in Jack’s case, the POA… his father. He thinks that he’s honouring Jack’s wishes that were drawn up in a living will sixteen years ago after Jack’s second bout of stage 4 Lymphoma with radiation and chemo leaving him sick and drained physically, mentally and emotionally. Trish and I can’t help but wonder what his medical directives would have been today had he updated his will. He absolutely cherished his new yellow with black stripe and all Challenger with its 392 Hemi, I’m quite sure he’d hate to lose that.

I managed to persuade Matt to come with me to the hospital Sunday night. Trish came home to pick us up he did his usual amount of complaining and had to be back at home before 9:00 pm for his nightly meditation. This was not going to leave us a whole lot of time with Jack, but we were prepared to leave shortly after he arrived to prevent any behaviours on Matthew’s part. Trish had texted Marg ahead of our arrival so we could have some quiet time alone. We walked into the room Matt had one look at his brother, took control of the room and tried to heal Jack in his own way… positive energy stuff. Trish and I were stunned, he told us to be quiet and began his meditation and continued even as the nurse worked around him. And as for 9:00… pffff, he continued for well past an hour and I ended going home with Marg, he and Trish arrived home about half an hour later.

Trish and I travelled to London this afternoon to see Dr. Jenkins – my movement disorders specialist. We went the list through the list of issues in the PSW’s communication book because Trish has lent her RatPad (iPad) to Matt. We discussed with Dr. Jenkins my leg issues with the added contractions and spasms possibly due to stress… stress what stress? She had me walk and noticed more of a difference in my gait… right foot tends to drag a bit. I mentioned to her about a couple of falls (I know Trish was waiting to see if I would), she suggested that some of the newer issues could be a result of the terrible stress the family is under. We ended up increasing the Baclofen to help with the myoclonus which seems to have helped so far and also discussed the use of cannabinoids when the pain becomes greater. These are a pill form of TCB derived from cannabis and have been used for many years now… a better choice than opioids. While we were there, we had a neurologist read Jack’s EEG report and that doctor agreed with its conclusion that has already been stated.

The following Tuesday had me back in London again for my Botox injections. My sister-in-law Marg was available to drive me there Trish does not want to spend too much time away from Jack’s bedside. Dr. Hyson had job shadow with him today… Dr. Berger, he is a neurology intern that I’ve met before when he was shadowing was Dr. Jenkins. Dr. Berger would be doing the Botox injections, so naturally I asked him if this was his first time… no, he said that he had been doing it for 5 months now. He must be perfecting his injection technique, I have no black eyes. Marg is little more familiar with London than I am, so she made a point at stopping at the DQ… no complaints from me lol.

Today is November 22 and its Matthew’s 23^rd birthday… I’m about a 6ish stiffness – wise. The additional Baclofen seems to be helping with the nightly spasms and I’m grateful for that. It’s a busy day for Trish as she’s been up to the hospital with Jack and then running around in preparation for Matt’s birthday. He has a friend (former girlfriend) coming over and he’s jacked about that, as well as my daughter Julie, grandkids and their hormonal dog. She has brought dinner along with her and is planning to go up to the hospital later with Trish to visit Jack. Chris, Liz and my other three grandchildren came over after dinner for ice cream cake…from DQ of course. All in all, Matt has been happy with this birthday, last year none of his friends could make it on his birthday which left him deeply disappointed.

Julie came back from the hospital with Marg who was sitting watch with Jack while Trish was at home here for Matt’s birthday. So after the dinner, ice cream cake and presents were all done, Trish and Julie left for the hospital. Tomorrow the 23^rd at around 9:00 am is the day and the time that Jack is to be taken off life support. Trish doesn’t think it’s good for me to be there, but I want to be, so she has made arrangements for Marg to pick me up in the morning and take me to the hospital.

Today has been the most difficult day of my life… Jack was taken off life support sometime after 10:00 am. I’m trying to recall what took place in the hour or so that it took Jack to pass, but I can’t think straight at the moment, nor can I see the screen for the clouds in my eyes. Trish and I, my sister-in-law Marg, his brothers’ Chris and Dave, her ex and his partner were all present. There is a DNR order in place the ventilator was removed, as were all meds except for sedation and some pain medication. Hydration and nourishment remained as per Trish’s request to this week’s attending doctor, even though the POA and original doctor agreed to remove them. All the monitors were turned off in the room, while those at the nursing station remained on if we wanted… and there’s no easy way of saying this, watch his declining vitals to see when his end was near, none of us chose that option.

When the POA asked why nutrition was not being removed Trish, whose back was to me and I’m sure with looks that could kill, told him that doctor on duty said nutrition and hydration will remain in place as she requested. This is where a much debated, moral and ethical (for or against) dilemma arises about death: Natural or Assisted? It has taken me quite some time on just how to approach the topic, any of you who have been in this position know just how difficult it is. Natural death is pretty self-explanatory, Assisted Death can either be euthanasia or physician assisted suicide.

Let me begin with the accepted definition of euthanasia: euthanasia is the intentional causing or hastening of death in a person with a medical condition that is judged to be serious [sic], and the short explanation. In Jack’s case it is complete and irreversible brain damage, but not brain-death. Physician assisted suicide is when a physician assists a person to commit suicide by providing them with the means to kill themselves, again, the short explanation.

My right leg has been the worst its’ ever been today… Sunday and I would say it’s a 9. It’s like the Wheel is taunting me… here’s a sample of things to come… you thought your issues were difficult before… thanks for adding to my misery.

Our new minister Meghan came over to the house this morning to go over the service with Trish, they are preparing the service for Jack’s funeral on Tuesday. Monday and the first visitation with Jack… difficult to get through, we ended up having the casket closed… a family decision we didn’t want people to remember him as he looks right now. Quite a few people came to pay their respects… Jack was well liked especially by his co-workers from Costco.

We said our goodbyes to Jack today the family had a private viewing and a chance to pay their last respects. It’s a beautiful but windy day… Jack’s prized car was parked out front of the funeral home for everyone to see. Wonderful service… our new minister from our church conducted the service Trish read a poem titled My Beautiful Boy, we were surprised by a couple of people who attended… my older sister Judy from Toronto and a teacher/program director from Matthew’s private school for autistic children he attended for several years.

There was a reception following at a local Golf and Country Club, Matthew began having behaviours at the service which have escalated here which made it difficult to enjoy… if I can use that word. Matt is having a very difficult time with Jack’s passing he had a typical love – hate relationship with Jack, as most brothers do. It’s said that those who say the least, care the most and Matt cared about Jack. Our home will never be the same without you Jack… life will not be the same. I was kind of counting on you to step up as my PSP progresses. I wrote a short poem for Jack…

Our Beautiful Boy

From the day you were born your mother had hopes and dreams

And as you grew, you brought much happiness and many fearful screams

From a young boy to a teen and then to a man,

We watched and worried as only parents can

Trials and tribulations… we had our fair share

But through it all you knew we’d be there

Some thought they knew you, they didn’t at all

And when you asked for help, few answered the call

You were not perfect… none of us are

But our beautiful boy, you shone like a star

All the pleading and prayers won’t bring you back now, we know we have tried

Nor will the tears… there’s plenty we’ve cried

Pictures and memories are all we have now, but they are not you,

we’ll get through this somehow

Our hearts are broken and lost is the joy

Forever we’ll love you… our beautiful boy

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The PSP Chronicles… Early – Mid Fall Update

November 16, 2017 ~ T.J. Brown ~ Leave a comment

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The PSP Chronicles… Early – Mid Fall Update

November 16, 2017 ~ T.J. Brown ~ 1 Comment

The journaling is becoming more difficult… my thought processes seem to be slower than before and I often find myself just staring blankly at the screen. There isn’t a day that goes by that I don’t think about Mike and it reminds me just how finite life is. Trish is now back to work… the new school year has begun. And as if the dental surgery wasn’t bad enough, there’re more issues with Matt, we’re working on getting him the right kind of help but this new doctor is not accepting referrals until February.
Trish now how has one work week behind her… only forty more to go she reminds me. I’m missing her through the day, but we do text at her lunch hour. Despite the busyness of her day and sometimes mine, we always set aside one hour of the evening each day for our tea time. We’ll often watch a recorded show or just sit and talk… it’s our special time, something I look forward to everyday.
It seems like I just finished getting all the summer yard work done just in time for the fall, but I won’t complain. I will at least have trees and leaves to rake. Unlike those in Houston, Cuba, some of the other Caribbean Islands, Florida and the other southern states that have been impacted by the devastation caused by Hurricanes Harvey, Irma, Jose and Katia and more coming around the corner. Apathetic or not, it’s just too hard to ignore the devastation that we’re confronted with every day on the news… unimaginable.
I was reading a post on one of the PSP boards when I discovered the medical term… myoclonus. A quick google voice search tells me that myoclonus is involuntary twitches and jerks or seizures caused by sudden muscle contractions, usually experienced at rest or periods of sleep… a symptom of neurological diseases, like PSP. Myoclonus… I preferred musical muscles better, that is until I started experiencing pain with them.
At church today we were asked what we were grateful for. When it came around for my turn to speak, I said that what was grateful for each day that I can get out of bed. When we came home from church I got to thinking that I was grateful for so much more… the list is quite extensive. Often overlooked is God’s Great Creation, I wrote a poem about this titled Divine Signature… I originally titled it “He” but thought that might be too ambiguous for some. The inspiration for this poem came from those special moments I spend quietly in my own sanctuary aka Papa’s Happy Place praying and reflecting. I thought I would share this with Church’s Facebook page, not giving much more thought about it. The poem connected with many people, who in turn shared it with other family and friends. It actually made me happy to know that it touched many in a way that I never expected. So, I will now post it to this blog. Regardless of your circumstances I hope that it reminds you of the Creator’s work and that He is everywhere… especially on those days you feel alone and overwhelmed with life’s many challenges.

Divine Signature

He’s in the trees and the whispering breeze
He’s in the setting and the mid-day sun, He’s in the morning, when the days’ begun
He’s in the sound of a newborn’s cries
And the beautiful sunsets that paint the skies
He’s in the clouds and the vastness of blue,
He’s in the rivers and the oceans too
He’s on the mountains, the hilltops, the valleys in between
Everywhere you look around, His signature can be seen
He’s in our thoughts, He’s in our dreams
Look and feel His radiant beams
He’s here He’s there… He’s everywhere
He’s in you He’s in me and He will always be
He was here in the beginning, He is here today He’ll be here tomorrow
So raise your hands and shout for joy, for through His love there’ll be no sorrow

T.J. Brown

Today is September the 13th and my 61st birthday. I thought PSP as gesture of goodwill and maybe even as a birthday gift, would give me a break… not so. FTD has been kinder, as I’ve had a pretty clear mind today… I think lol. An old friend recently commented on a Facebook post that I didn’t look like I’m in my sixties. I told him that Botox makes me look like 41, but I feel like 81 and in my mind, I still think I’m 21 lol. My sister-in-law Marg came over for dinner… Trish brought in fish & chips from our favourite shop. Chris, Liz and the grand kids came over after their dinner for dessert… birthday cupcakes and ice cream. And before anyone asks… yes I have DQ treats too, a DQ gift card from Marg will ensure that I’ll be visiting the DQ every chance I get lol.
The second week of September has been above seasonal temperatures, so I’m taking the opportunity to create some new flower beds in the back yard. I’m getting the jump on spring while I can, because I just don’t know if PSP will be kind to me over the winter… ugh. Willie (my walker) is always close by when I need to sit, even if it is to spay and turn the soil. I’m sure my neighbours see me I wonder what they think… the intrepid gardener lol.
This weekend I rented a carpet cleaner, something I had planned to do during spring cleaning, all the area rugs and runners as well the upstairs hallway and the carpet in the cottage. Trish rolled up all the area rugs and runners and brought them out to the deck for me to clean. This carpet cleaning machine has to be pulled, rather than pushed across the rugs and carpets. I quickly found out after a few bobble wobbles that I had to side step and pull the machine rather than risking a backwards fall. It wasn’t hard work or involved heavy lifting, but I was very sore by the end of the day.
The new minister approached me in church today just be the service began and asked if it would be okay to read my poem Divine Signature. I said that was fine with me, after all, I had posted it to the church’s Facebook page. After church today I started on a new garden bed for the spring season, the truth be told, I don’t know what I will be able to do as far as yard work is concerned come the spring. The Wheel has been spinning more and more lately landing on numerous aches, pains and contractions.
I had the larger TV moved into the cottage area… tried to nab Dave when he came over, but he left. After some discussion Trish and I moved it… ugh. Trish said that will the last time she’ll help me do anything stupid again, as we pretty much had to lift the TV on to the top of the wall unit. If I have to spend much more of my time down in the cottage… which has a walk out to the back yard, then I want to have that living space comfortable and to my own liking.
Did I mention that I got an image transfer projector for my birthday? Well, I did and the cottage walls will be my canvas, only this time the paintings will reflect the great outdoors. My vision is not as good as it once was… spatial issues and lack of eye movement are making it very difficult to draw/sketch correct proportions… head, body, wings etc. Now all I have to do is to lose the Magic School Bus, Winnie the Pooh, Piglet, Tigger and a host of other cartoon characters from the playroom walls without Matthew having a meltdown… yah I know… good luck with that. This projector will save me a lot of time and grief, probably preserve my voice for a while longer as I won’t have to scream and yell at myself for drawing the same thing over and over again until I get it right… meaning fewer F bombs lol.

I went for a massage tonight at a new clinic called Revive, but had my same massage therapist. Holy and a couple of the other girls from the other massage therapy clinic have ventured out on their own with a new start-up. It’s located in a beautiful old building from the Victorian period in downtown Galt (Cambridge) close to the Farmer’s Market, the old/new City Hall as well as the gas light district. The girls and their husbands did all the renovations themselves, except that which required licensed contractors.
When you enter, your senses are filled with the smell of infused oil called Peace and Harmony… very calming, wonderful earth tones that are easy on the eyes and tranquil spa music piped into every area of the clinic. 10 ft. sliding barn style doors welcome you to the several therapy rooms with 16 ft. ceilings, exposed red brick wall, original refinished baseboards and plank flooring… Martha Stewart would approve lol. And oh yah… the massage tables are heated too. Whenever I go for massage it’s generally not too long before I’m asleep, tonight I was almost there sitting in the lounge. It was a great first experience with this new clinic… it won’t be my last, and better yet I left feeling a 5ish on the stiffness scale from my usual 6-7. When you’re diagnosed with Progressive Supranuclear Palsy – PSP, any downward increment in rigidity is always welcomed… even if it’s temporary. Looking back at what I just wrote, the aforementioned sounds more like a review, so I copied and pasted it to their website… maybe there’s an extra half hour of treatment in my future lol.
Unfortunately, Revives’ location is not really close to the DQ, but luckily Trish and I had to go further into Cambridge tonight to get a birthday gift my grandson Owen who’ll be turning 2. That would have us driving past the DQ both ways and you just know that I would have to put my birthday DQ gift card to good use… thanks again Marg.
Trish has travelled to Toronto after work today for the monthly PSP group meeting, so Luba has been here tonight for a couple of hours to make sure that I survive my dinner and take my meds. She came bearing gifts… more hostas for my new flower beds. In return I dug up one of my own that she had been eyeing that I had split earlier in the spring, I have something else in mind for that location. I’m really pleased that my rigidity is still a 5ish a full day after my massage this has allowed me to some of the transplanting with no real issues. The weather has been great… summer has just arrived in time for the first day of fall tomorrow. I’m hoping my body holds up so that I get the rest of the hostas into the ground, start trimming back some of my own plants and begin another small project for my sanctuary.
I don’t know if there is any real correlation between the two, but it seems that when I’m having a better day physically, cognitively I crap out. The dog treat that I thought was a cookie didn’t really taste like chocolate chip and the dirty dishes should go into the dishwasher, not back in the cupboard… duh! And on at least two occasions today I ended parking my butt on the stairs trying to remember why I was going up or down in the first place.

It’s been two full days since my massage and I’m still 5ish on the stiffness scale… you gotta like that, but my tree stumps aka legs have felt weak for a couple of days now. My thought process has been a little bit slower lately too, but I have managed not to eat any dog treats lol. Luba took me out into the back yard today on my exercise break to show her how I’m progressing with the new flower beds. I’ve come up with another idea in addition to the project I have planned for the sanctuary… everyone should be happy it doesn’t involve the use of a ladder.
This past Saturday Trish and I travelled to Sean’s home in Pickering to celebrate our grandson Owen’s 2nd birthday. There was a party for him earlier that day with some 18 children attendance… I think we made the right choice by attending the later dinner, which also gave me the opportunity to get more yard work done. I’m still feeling a 5ish on the scale so yes, I will push myself a little further.
When we pulled up to the house, the front was decorated in orange, black and yellow balloons with yellow caution tape everywhere to let you know this was a construction zone. Actually, this was the birthday theme and anyone that knows Owen, is well aware that he is a one man demolition crew lol. When we arrived at 4 pm, work was still in progress with no signs of Owen shutting it down. A large Rubbermaid tub on the deck was converted into a sandbox/job site for all of his new construction toys. Between that, the bouncy castle, the bucket of water to wash his hands and feet, there were plenty of things to keep him busy and he didn’t show any signs of slowing down until closer to his bedtime.
Owen has the same interest in all things cars, trucks… pretty much any kind of vehicle as his dad did at that age, and still does to this day. The only thing that’s different between Owen and Sean when they were the same age… energy, Owen brings a whole new level to play time. I took one picture of Sean in the living room playing with one of Owen’s new construction toys… a backhoe, and just behind him is this blurry flash. When you look closely, you’ll see that it’s Owen, just being Owen. I get tired just thinking about him as I write, and to think I used to have a similar level of energy just a few years ago… I don’t know whether to thank or curse PSP.
For the last little while I’ve been experiencing issues with my legs, over and above the heaviness that I often refer to as the tree stump analogy… more specifically around both knees. It feels as if my knees have been hyperextended. If you’ve never experienced something like that, try sitting down with your legs resting on another chair or even an ottoman, and then have someone sit or put weight on your knees. You’ll quickly discover how painful that can be… and oddly enough, as sore as that is I can still bend my knees. The positive benefits from my therapeutic massage have lasted for about a week and like Elvis… have now left the building lol. I’m returning to a level 6 but hey, those results lasted nearly a week and I’ll gratefully take any relief I can get.

Trish and I participated in a scheduled telephone 6 month follow-up call today from Sarah at the ONDRI study in London. This is a volunteer neurodegenerative research study conducted by the Parkwood Institute and Robarts Research. She had some separate questions for Trish, I’m not really sure what they were but I do know that she couldn’t refer to her IPad or RatPad as I call it, because Matt was using it. For me, she had some cognitive testing questions that I always seem to struggle with. I mean really, you’re given some words at the beginning of the testing and halfway through you’re asked to repeat those words… as if!! I remembered two of them then and the same two now (green, violin), pretty much everything else is a blank… oh yah I did know it was September 2017 but was a little “iffy” on the day and date.

I like to watch the news and listen to music while I’m exercising… that’s multi-tasking for me. While I’m doing this Luba asks me how I’m doing, so I told her, compared to all those people who have been affected by recent catastrophic events… I’m doing fine. I know the disease is progressing, but I still have everything I need unlike those tens of thousands of people who have nothing left from recent catastrophes.

I’m pretty much back to a 6 on the scale now. Fall has finally arrived with more seasonal temperatures and extra yard work. I’m not complaining though, it means that I get to spend more time outside before my winter hibernation. And bonus, nap time will be spent out in the hammock as the weather permits… meaning no rain, I can always take a blanket if it’s a little too cool.

I had a chiropodist appointment early this evening in Cambridge, which meant two things… foot care and a chocolate dipped DQ dream for the ride home. We had dinner before we left and my meds are kicking in, so I’ve decided to chill and try to do some journaling. I’m sitting here in my bed with the head adjusted to the upright position with the lap top and music plugged in. The heating pad is against my lower back and Phoenix… my service cat lol, is stretched right across my lower legs sleeping and purring so loudly that it feels like my legs are tremoring. It’s getting close to tea time with Trish, so I’ll pack things up for the night and spend the rest of the evening with my honey… hopefully uninterrupted.

The last day of September 2017, I’ve made it through another week. For Trish, the weekend couldn’t come soon enough. It was the week from hell for her… especially at work at the moment she is upstairs having a sauna trying to melt some of the stress away. It troubles me to know that she carries such a heavy burden and if I could I would gladly take some of the weight from her instead of adding to it.

My stiffness remains a 6 overall, but I’ve had some new pain in my arms… I’ll just chalk that up to the Brain Game Roulette Wheel. I’ve managed to get some yard work done today, the bulk of it raking leaves which has become a bit of a sport as I utilize Willie (my walker) sometimes sitting or moving about. I know that I would get more done standing and raking, so I’ll adjust my stance hoping that I don’t fall.

Late this week, Luba brought over some ornamental grasses and some other plants, the name of which I can’t remember. I’ve put those plants into the ground as well as dividing and transplanting some of my own hostas. It’s been a productive day… albeit stiff and sore, I even managed to have a fire this evening. Tomorrow after church, the plan is to drain the pond… not the swamp lol. I wonder how that’s working for him… stay tuned for the latest Tweet. Closing the pond earlier, like the new garden beds and edging is giving me a bit of jumpstart… don’t know what or if I’ll be able to do anything come spring time.

I was approached in church today by one of the longstanding members of our congregation, Marilyn a wonderful lady who turned 95 recently. Believe me when I tell you that she moves around better than many others 20-30 years younger than her. She said that “the church had a poet and we didn’t even know it”. She was referencing the short poem I wrote titled Divine Signature, I don’t consider myself a poet… I think that was probably the first piece of poetry I’ve written since leaving high school back in 1975. I smiled back at her and suggested that because her remark rhymed she could be a poet herself… she just smiled back.

There’s a burning pain in my legs and arm today as well as the odd bobble-wobble… which is a pretty common occurrence. I looked outside my window to see frost on the roof tops… ugh. I almost wished that hadn’t turned on the laptop… just learning about the insanity in Las Vegas overnight and the terrorist attack in Edmonton. I can’t stop shaking my head at the moment trying to find words to describe how I feel… numb, disbelief, saddened, angered… don’t even notice the PSP as I did when I first woke up.
What kind of world I am leaving behind… I ask myself from time to time. Lately with all the terror, violence and political calamity, I find that I’m asking that same question everyday sometimes at least two or three times. Life is something to be valued most of us would agree… especially those of us living with a terminal illness but yet, I see, read and hear about stories of violence, racism, bigotry and hatred. People willing to hurt or kill others… even themselves because of anger fostered through misguided beliefs and ideologies.

This begs the question… why such stupidity? The simple answer is intolerance… ignorance and a fear that grows from religious, racial and economical differences of opinion. When will we understand the folly of trying to destroy one another because we are of different religious beliefs, racial tendencies or even class distinction? Sadly, I don’t think the question will be answered in what’s left of my lifetime. All life has value, including mine I’d like to think. And yet, there are so many willing to kill or die for misguided values and beliefs… and here I am just trying to stay alive and ahead of this dreadful disease, until such time that research and medicine will find a treatment that may one day lead to a cure.

Today has been off to a good start… I woke up to a bad case of brain flatulence, and if my day wasn’t miserable enough, my tree stumps (legs) have weakened to the point that I can barely stand on them. This is the second or third time in the last couple of weeks… not liking where there is heading.

There have been a number of people in my extended PSP family who have earned their wings recently. I’ve spent some time thinking today as well, about my whole situation with PSP and the future, or the lack of one. I used to be one of those people busy making plans and now in a moment of weakness, I think how silly that was. I don’t feel cheated, nor am I angry. I just never saw this coming… no one ever does. I lament to myself that this is not the “happily ever after” that I wanted and expected for Trish and I. That said, I thought that I couldn’t love my wife any more than I do today, but with each new day I’m proven wrong. I miss her terribly and yet, cannot understand why sometimes that when I look at her, I feel disconnected. As contradictory as it sounds, I try to imagine how difficult and even strange this must all be for her… I know it is for me.

We had family over for our Thanksgiving dinner on the holiday Monday… all my grandchildren are special, I hope and pray that I don’t lose that feeling of joy and happiness that they bring me. My oldest stepson Jack has been violently ill during this long weekend thinking he had some kind of a flu bug. Trish was trying to clean up after one of his vomiting episodes at 2:00 am when, to make matters worse she discovers that there’s a bird flying around in the house. She caught and released the bird and has decided to take Jack to the hospital, he’s been vomiting for two days now, and he looks deathly ill.

Its’ Tuesday, and today’s devotional reading is titled “Wake up Call”… there is a connection to current events. Trish has texted me that the hospital is going to admit Jack who is still vomiting and very dehydrated. I was sitting outside in the sanctuary with my coffee for prayer time and reflection, there’s something that has been bothering me for a very long time and I have continually prayed on it. I thought that the Lord may have answered those prayers as he always does… in His own way and in His own time. I was thinking about this when I felt something moving inside my shirt by left front shoulder, as it turns out it was a wasp which gave me its own kind of message too… ouch! I dropped my coffee, spilling it all over myself and the patio…River didn’t seem to mind as he licked up the spilled coffee, I’ll wait to see if he gets a caffeine buzz.

Trish called Jack to see how he made out overnight… not very good, no sleep and still vomiting. The next time I spoke with her, I learned that Jack is now in a medically induced coma. Apparently he vomited and aspirated one litre of fluid, because his lungs were full, his heart had stopped and the ICU Code team had performed CPR for several minutes to keep the blood flowing to the brain until he had a heart beat again. The induced coma was a precaution to prevent brain damage, a brain and full body scan was ordered by the doctors. At this point the doctors still do not know what they’re dealing with my assumption is that it is drug related. I have to tell you that I do not approve of Jack’s lifestyle, the poor choices he makes including his so-called friends and associates… nefarious characters and other kinds of riff-raft. My assumption was wrong, as I understand it now Jack has some kind of intestinal blockage which prompted t all the vomiting.

We still do not know what the blockage is, that is obviously not the priority right now. Jack does have a fever which is a concern for aspirated pneumonia and is receiving antibiotics. Aspirated pneumonia resulting from swallowing issues is one of the leading causes of death with patients who have PSP.

I’ve been doing some paintings in my cottage (my man cave) these, along with my exercises and other routines have proven to be a bit of a distraction from the grave situation with Jack. PSP is still nipping at my heels, reminding me that this is not all a bad dream. Lately, each day is more challenging than the other. The BGR (Brain Game Roulette) Wheel doesn’t give a damn about whatever else is going on in my family life, its content on making the presence of PSP and all its baggage known. I say, that you can take the P in PSP (progressive) and P as in put it where the sun doesn’t shine.

Jack has a couple of infections… Trish is weary she spends most of the day at his hospital bedside. She has some wonderful co-workers and friends who have stepped up, bringing cooked meals over the house, collecting money for parking costs and one even walks River for us… something that normally Trish does. If any of you read this blog, I’d like to give you a big shout out… THANK YOU! Words really can’t express our gratitude.

I awoke this morning a less steadier than usual. To sum it up, my legs are shaking and my knees are weak, can’t seem to stand on my own two feet… yah I’m all shook up lol. Humour is just as good or better than any medication that’s prescribed for me.
Jack had another MRI today… showed some inflammation in the brain, but no serious swelling. The doctors want to reduce this inflammation and then have another scan. Another positive, no stomach cancer… something the doctors’ had considered too due the internal bleeding. This is one less worry for Trish as she seriously concerned, given Jack’s previous history with cancer.

I visited with Jack today Sean and Julie have driven down from Pickering to visit as well. Jack has been able to open his eyes for very brief periods. We still do not know what has brought him to this point. Cancer has not been completely ruled out, but I think the doctors are leaning more towards some kind of neurological event.
This whole ordeal is very difficult for the family, but more so for Trish, her heart is aching… her heart is breaking, your children are still your children regardless of their age. Sadly, we still don’t know the outcome of Jack’s situation which has left some family members thinking negative consequences. Jack has another MRI and lumbar puncture scheduled for today, with another ultrasound and echogram scheduled for tomorrow.

Luba has provided me with plenty of reference materials as I continue with my wall art in the cottage. This is somewhat of a distraction from all the real life drama and the PSP… which is constantly reminding me of its presence. I actually got outside today for a couple of hours to rake and bag some leaves… there’s just too many to mulch at this point. I might want to rethink that, there’s still one maple tree with quite a few leaves on it and mulching is a hell lot easier on my body than raking and bagging. Our church has offered me help if I need it and I’m thankful for the offer, but I can manage for now, translation… I’m a little obstinate. However, I’m grateful for the pastoral care that the church has been providing Trish at the hospital and the many prayers for Jack.

There was a documentary about Sloths on TV last night… I really think that they move faster than me sometimes lol. I planned on going to the hospital this morning with Trish to visit Jack, but it’ll wait until the afternoon… can’t seem to get out of 1st gear. I almost mixed up my night time meds with the morning ones, my legs feel like they’re burning and I’m in a deep brain fog… going back to bed and hope that when I wake up that’ll be offer to a better start.

I managed to get another 2 hours of sleep and I now feel like I have control of myself… cerebrally I think. The tree stumps are still an issue, in fact they’re getting worse, but there’s less burning pain at the moment. This has allowed me to go outside for a while and cut back some plantings and wondering if I’ll be walking at all this time next year. I won’t dwell on that, instead I’ll try to figure out a mental detour and put that thing they call neuroplasticity to work.

The doctors have taken him out of the medically induced coma and are trying to gradually wean him off the ventilator, his eyes are open and he can respond to simple commands by nodding his head yes or no… this so much better than the last time I visited with him. At one point as I was talking to him, I had to swallow hard because of the lump forming in my throat as I wiped away a tear from his eye.

I can’t believe that it’s the end of October already… finished off the month with a forwards fall, which took me a little time to get up off the floor and steady myself. Matt was nearby and brought me my cane and then quickly texted Trish about the incident, she called right away but it’s all good now… no boo boos. My legs haven’t been very kind to me these last few days and with Jack’s hospitalization, I wasn’t really aware of some new issues with my left side… minor contractions and a lot more fatigue overall. PSP is such an indiscriminate disease, it doesn’t care about you, your family or circumstances, only hell-bent on torturing you slowly inside and out while your family and friends grieve their living loss.

Trish sent me an update on Jack today apparently a CT scan has revealed one blood clot on each lung. The doctors have started a drug infusion to clear up the clots. There is a plan tomorrow to perform a tracheotomy. He’s been on a ventilator for close to 3 weeks now, they don’t want to see any patient ventilated for than 14 days I’m told.
That has all changed this morning… Trish came running downstairs in tears. As she was heading out the door for the hospital she told me that Jack had just had another cardiac arrest. I called my sister-in-law Marg to let her know and asked if she could go up to the hospital to be with Trish. Jack was resuscitated, but because of a massive air build up (embolism) one of his lungs collapsed.

Unfortunately, the benefits of the massage the other evening didn’t last quite as long as the previous session still, I enjoyed the relief… and my DQ Dream of course. I was scrolling through Facebook tonight and came across a short video clip that I submitted to CurePSP.org as part of a fund-raising and awareness campaign… I remember sending some pictures along, but forgot that I submitted it. The first of the nasty winter weather has arrived this evening… and its’ still only fall.

I was scrolling through Facebook tonight and came across a short video clip that I submitted to CurePSP.org as part of a fund-raising and awareness campaign… I remember sending some pictures along, but forgot that I submitted it.

The first of the nasty winter weather has arrived this evening… and its’ still only fall.
I’ve sat down at the lap top a few times this week… today included, trying to journal but my mind takes leave and I end up staring blankly at the screen. I’m really missing my friend Mike, before when I would write it seemed that my words were only intended for him, but in reality I share my story with anyone interested in reading it. I’m sure there are some things you read that might leave you scratching your head but not Mike… he got everything I said, even if it was inside our heads lol.

The PSP Chronicles Summer 2017 Update

September 8, 2017 ~ T.J. Brown ~ Leave a comment

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Summer has started off with a bang… literally. July 1^st is Canada’s 150^th birthday and is being celebrated from coast to coast with festivities and fireworks displays everywhere. I’m not really much in the mood for celebrating and have elected to continue with some yard work. Trish says that I do too much… I won’t argue with that. I rest when I need to and stop when I have to… need to keep moving. I’m afraid that if I don’t, PSP will make its presence known more than it already has…just trying to stay ahead of it.

Trish and I travelled to London during the first week of July for my appointment with Dr. Burhan… he’s my neuropsychiatrist and specializes in behavioural disorders like anxiety, depression, sleep issues and all the other boogeymen that visit patients with neurological diseases including dementias. I’ve had some sleeping issues for the past few weeks, which have necessitated the use of a sleeping pill. I think that I’ve taken more of this medication in the last couple of months, than I have in the seven or so years that I’ve been on it. Originally it was prescribed to help me sleep through some very annoying bouts of tinnitus that would keep me awake at night. The sleeping medication can be addictive… and that’s not a road I wish to travel on. Dr. Burhan is going to increase one of the meds that I’m already on and add some extra strength Tylenol as well, since much of the sleeping issue is due with muscle contractions. We’re going to try this for a couple of weeks and then Trish will follow-up with his office and see where we go from there.

LHIN was here this week also for a six month review. Formerly known as CCAC, it’s the provincial organization that arranges assessments and supports for those who need them in their home. CCAC is now called LHIN Local Health Integrated Network or as I would say… SSDN same s##t different name. LHIN will be coming back to the house in two weeks’ time to discuss PSW care for Matthew, while Trish is working I am his primary caregiver and that is obviously becoming more of a challenge for me. It troubles me when I think about his future…

It was at the end of the first week of July when I received a call from Mike’s wife Pam… Mike’s condition is deteriorating quickly. Family from out of state are coming to say their goodbyes. Family and friends that are local have been in to see him. I received an update from Pam earlier this week saying how difficult this journey has been for her… and rightly so. Later that same week Pam called me… Mike had asked her to say goodbye for him as he can no longer communicate, we all know that there isn’t much earthly time left for Mike. Throughout this whole PSP journey, not once did Mike ever complain or even angered about the hand he was dealt. Such is his faith in Christ, and despite the many challenges, this became the path he followed, his story… Surrender. When I could gather my thoughts… 3:15 am the next morning I sat down, wrote Mike a letter, emailed it too Pam and asked her to read it to Mike hoping he would hear my final words to him.

Tim Brown 2017 07-10 4:16 PM

Hi Pam… Could you read this message to Mike for me please.

Mike, I’ve been sitting here in front of the keyboard for a while now, trying to find the right words to say goodbye. My thoughts are muddled and when I find the words, I can’t see them for the tears. I have saved every email that you and I have shared, and have been re-reading them over and over again, including your writings on your story… Surrender. I remember back in October in 2015 responding to a question that Pam had posted on a PSP Facebook group, who knew at the time that question and my response would lead to such a wonderful relationship.

I believe that there is no such thing as coincidence, and that the Father through His mysterious, yet wonderous ways answered silent prayers and paired us. We share a very special bond and “clicked” immediately, never in my 60 years have I ever experienced this kind of connection with the exception of the Lord. As time went on, this bond strengthened to what it is that we have today… Love. Trish and I both agree how great it would be to have known you, Pam and the rest of your wonderful family long before this, but we trust the Father and his perfect timing. I think I understand why the Father brought you into my life, but mine into yours’?… well that leaves me a little perplexed, but I would never question His reasoning.

I can’t thank you and Pam enough for opening your hearts and your home to Sean and I… that goes for the rest of your family as well. We had such a wonderful time during our first visit for your event and we’re very proud to be included in it. Lets’ just say that time, and this time forward has been for me and Sean “food for the soul”… our daily bread. As I continue to type, I think that my perplexing question is answering itself and strangely enough bringing me some comfort and peace. Your loving family, friends including me will miss you dearly, but take comfort in the fact that when the time comes, we will all meet again and share a seat that has been prepared for us at the table along side of our Heavenly Father and His Son Jesus. Until that day, may I say thank you for coming into my life and like the Father, your grace and spirit have touched my soul.

Until that time when we meet again in Heaven, may God bless and keep you.

P.S. I know that Marci has been “talking” me up, but if you don’t mind, please put in a good word for me too… I’m pretty sure that I’ve made the naughty list a time or two. I love you my dear friend and brother.

Tim… Unique too.

As for me, I will always have hope; I will praise you more and more.

Psalm 71:14

My dear, dear friend Mike Sweeney passed away this morning July 13/17 at 6:07 am. I learned of his passing after returning home from the neurologist’s appointment in London today. Mike was foremost on my mind when I asked Dr. Pasternak today about any new tauopathy (Alzheimer’s-PSP) or other dementia(s) clinical trials… orphan drugs etc., undoubtedly hoping for a miracle for Mike and millions of others worldwide. He wasn’t aware of any new trials at this time, other than the ONDRI study, which I’m already participating in. London Health Sciences Centre and Robarts Research are part of a global network that share research findings, breakthroughs… all relevant clinical information related to neurodegenerative diseases. To date, there is still no treatment or cure, although there has been very limited success in managing some symptoms in some patients… not all.

The news of Mike’s passing… although expected, has left me a numb and saddened for his family and friends. Mike and I loved each other as a brother and I wished that we had more time to further grow our very “special” connection, I will always cherish the memories we made. I take peace and comfort in knowing that Mike is no longer in the clutches of PSP, he is now in the divine company of the Lord and all the wonderful souls that have gone before him.

2 Timothy 3:10-15: I have fought the good fight I have finished the race I have kept the faith.

For Mike, my mighty PSP warrior you fought the good fight, you finished the race and most importantly… you kept and grew in Faith, all while remaining gracious and humble every step along the way. I love you brother.

Pam called me today just after I woke up from nap we talked about Mike’s passing and how wonderful it was that his family were all there for him. Everyone shared stories and even laughter… including Mike as he was able. His daughter Caitlyn crawled beside him in what Mike called his “hospital bed from hell”, crying she told him that she loved him and then Mike began singing the Barney Song… I love you, you love me. Mike refused to let PSP define him, in life and in death. Pam told me that Mike had been cremated the same day she called and that his brain had been donated to CurePSP and the Mayo Clinic, which was his wish. A celebration of life service is going to be held on the Saturday at Crossroads Church which Mike was a member of.

I’ve been trying to stay busy, but as the days move on I am missing him more and more. I’m finding it difficult to write and often find myself staring blankly at the screen. The PSP Chronicles are intended for my family, friends and others to read, but Mike was the primary source of consideration and inspiration to share my experiences with. I’m trying to find a way to continue my writings in such a way that would honour Mike.

We travelled to London during the second week in July to see Dr. Jenkins. She had two interns with her today… a Dr. Who? and another Dr. I don’t remember either. We reviewed what changes have taken place since my last visit. She has increased my levo-carb (Simenet) to help with the “newer” muscle contractions, but overall Dr. Jenkins is still pleased and told me to keep as active as possible including the exercises.

This has been a busy week in addition to seeing Dr. Jenkins in London I also had a foot care appointment with the chiropodist. She and her husband who is a chiropractor own and manage a very successful health care centre, today just happened to be client appreciation day and were having a BBQ for their clientelle, complete with prize draws and cake… I can’t turn down cake, or chocolate or ice cream for that matter lol. I mention the ice cream because we have to pass a Dairy Queen on our way there and home…I see a large chocolate dipped DQ cone in the very near future lol.

The weather has been off and on this last week of July. I’ve been outside every chance I get to enjoy my sanctuary and to be done lol. I sometimes wonder what my neighbours think when they see me with my walker and cane close by down on all fours pulling weeds, and then watch me trying to get up from that position. It’s like my own kind of Olympics and I’m being scored on my effort, form and my completion lol. One such effort resulted in a fall last evening my left foot “froze” as I tried to turn around. Trish was walking away toward the house, but I recovered quickly enough that she did not see the incident, but I did admit to the fall.

During the last weekend of the month Trish a I were invited to Brenda and Fern’s home for dinner at their home in Beamsville… a small town located in Niagara region. Brenda you might recall was and now retired minister at our church in Glen Morris. Our hosts were very gracious and Trish and I really enjoyed our self.

I’ve been writing a story on Mike and how we first connected. It’s now been just over two weeks since he transitioned. I was numb for the first two weeks or so, but the reality of his death is only now beginning to settle in with me. I won’t pretend that it’s not difficult… it is. I have sat down at the keyboard a number of times to write about our shared journey together, but had to save and walk away its a little overwhelming. Instead I’ve buried myself in a great deal of yard work and personalizing my bathroom in my man cave I call the cottage.

I’m deeply saddened with Mike’s passing and have pushed myself to finish the story Memories of Mike, with the intent on doing it in such a way that would honour his name. I added a number of my favourite pictures of Mike and myself to humanize to the publication… not just words.

A number of people in the world wide PSP community including Mike have passed away over the month of July. August has not started off on a good note as at least three more loved ones have succumbed to this ugly disease. Today marks the third week of Mike’s passing. To honour the memory of my dear friend, Trish and I stopped by the DQ to raise a cone to his name… I also needed to go to the Home Depot, but that was just an excuse lol.

It seems that the increased dosage of Simenet (Levo-Carb) just might be working in addition to the extra clonazepam, my rigidity has gone down to a 6 from a 7 and what I originally called the musical muscle contractions no longer wake me from my sleep. My movement disorders specialist says that the Simenet… which is a Parkinson’s medication is helpful in about one-third of all PSP patients. Unfortunately, its effectiveness for bradykinesia (rigidity-slowness) is limited, and at some point in the disease, it will not be beneficial at all. I’m grateful to be in that one third group for now, and I truly sympathize with the other two-thirds. My slower progression can change at any time and the final outcome will be the same as all the others with PSP who have gone before me, including my dear friend Mike.

It’s just over a week into August now, I have scheduled massage early this evening, then I’ll be off to the mall for a haircut. I ended up having a half hour wait time and decided to make the most of it. Dairy Queen has a mall location… the walk there and back would give me just enough time to get a DQ dream and have it finished in time for my haircut lol.

This morning (don’t know the day…don’t really care) I had a slow dance with Trish to my favourite song, Unchained Melody by the Righteous Bothers. With one end of the ear buds in my ear and the other in hers’ we began to dance and I held her tight, she held me tighter… very romantic or so I thought until she told me that she didn’t want me to fall lol.

I posted Mike’s birthday on FB… a day early oops, and retracted that. Mike’s wife Pam had a birthday in the early part of July, she and Trish had been talking and Trish asked her if Mike remembered her birthday. He had, but not until she was ready to leave for lunch with a friend, and in the next breath he said to Pam… I almost pulled a Tim lol. I guess this requires an explanation, back in April I missed Trish’s birthday by one day. It happened to be on a Friday I think, I had a gift along with a card and thought I was being crafty by hiding it behind something on the fireplace. So, when she came downstairs on the Saturday morning I wished her a happy birthday, she said thank you, but her birthday was yesterday… oops! It was the first and hopefully the last time I ever make that mistake again.

I had just finished reading an email from Pam and how she and the girls were going to take some of Mike’s ashes and spread them at a family favourite place in Chattanooga, TN. This was the same place where Pam had surprised Mike on his 50th birthday with a gift of a hang gliding adventure.

As usual, I made myself a coffee to enjoy in my sanctuary for my quiet time. I could have sworn the cardinal chirping in the tree beside me (angels are near when cardinals appear) was probably Mike, mocking me for his birthday screw up… I had pulled a Tim. The next moment I was looking up and saw the eagle (for only the 2^nd time this year) soaring high in the sky which reminded me of Mike and his hang gliding experience, by this time my hair was standing on end. Coincidence… I think not. Remember Gibb’s rule # 39… there’s no such thing as coincidence (:

My stiffness is slowly creeping back up to a 6… the benefit of the massage only lasted a couple of days, but hey, I’ll take any relief I can get. I’m still able to get outside when the weather permits and do a bit of yard work it’s fair to say that I tend to push myself a little further than I should… I’m a little stubborn that way. This stubbornness, which is bordering on defiance, is exacerbated because I move like a sloth and CRS… (Can’t Remember S##T). I’ll start one task and lose focus, start on something else. This pattern repeats itself, until I’m finished for the day and realize that I didn’t get done what I had originally set out to do. I know most of us have had that experience one time or another, but almost every day… argh!

During the second week of August Trish and I travelled to London for an appointment with Dr. Burhan, this was a follow-up to the medication changes he made just a few weeks ago. From somewhere in his notes he sees that I have a blog, and actually suggested using a YouTube channel for my journal when it becomes too difficult to type. The visit went well he just increased the Tylenol… 2000 mg. per day it seems to be helping with some of the pain for now. My next visit is in January… I think.

It was also during this week that my sister-in-law Marg and Trish took care of the sobering business of selecting our burial plots at the cemetery adjacent to our church. The plots are side by side and we’ll share one headstone that was agreeable to all of us… the living that is. Trish asked me if I would be bothered having our names on the stone ahead of our departure date lol. My answer was no… makes practical sense and it would allow Marg to bury Wayne’s ashes, which really was the idea to begin with. Trish’s father and mother’s grave are close by as are the plots of our recently retired minister and her husband.

I’m taking Dr. Jenkins (Movement Disorders Specialist) advice about staying as active as possible… literally. The second week of August has seen me back at my yard work… levelling the patio stones, that’s heavy workout of the way and hey, it only took me a week moving at a sloth’s pace.

My boys Chris and David came over the same week to move my adjustable bed downstairs to the cottage and Matthew back in his own room on the top floor. I don’t recall if I mentioned that I have been sleeping alone for a while now… argh! The adjustable bed that I use was in Matthew’s bedroom… I now need to keep my feet elevated when I sleep, apparently the roots (feet) that are attached to my tree stumps (legs) turn purple if I don’t. I hate the sleeping arrangements and ignore this advice on the weekend, when I camp-out in my own bed with Trish… kind of a compromise I guess.

I did have a stupid moment one morning… I spent a couple of minutes trying to figure out why the vacuum wouldn’t turn and finally figured out the light switch doesn’t control the vacuum… you actually have to turn it on… duh! It seems as though when I’m having a better day PSP wise, I have more brain flatulence lol. Trish is travelling to Toronto this evening for a PSP meeting and is definitely not looking forward to the drive there and back. As it turns out the meeting provided her with some useful information along with a good article on long-term care which I published on my other blog site that met with a good response.

I did more yard work over the weekend, trying to get my mind off all of the recent insanity… another terrorist attack with a van driven through a crowd in a busy Barcelona tourist area and another city to the south, 15 fatalities so far… sickening. Then there was demonstration in Charlottesville, VA by white supremacists and Neo-Nazis… the far right. This has as only galvanized those who are sick of racism’s ugly head… including myself. It would have also been a great opportunity for Trump to show some real leadership… we all know now how that worked out.

I’ve must have been internalizing some of my disgust with these events as well as really pushing myself, because after waking from my nap I couldn’t bend over. My whole back was stiff and sore and it lasted right through to Sunday… reaching an 8 on the scale. I would have figured to have felt like this last week when I was moving the patio stones… not so, either way it caught with a vengeance.

I’ve mentioned from time to time how concerned I am for my son Matthew’s welfare after Trish and I pass. All the legal “stuff” is in place… including a Henson Trust Fund, with my sons Chris and Sean assigned as his legal guardians. That’s really not my major concern, its Matthew learning how to be independent and his “other” world that worries me the most… believe me, we have been working tirelessly on this for years. He is now receiving PSW support one hour a day… for now. I have been his primary caregiver since he finished high school, and as my PSP progresses it has become increasingly difficult for me to tend to his needs. This was started a couple of weeks back while Trish is still home, so that she could teach the support staff his routines.

As an adult with autism, we’re faced with some daunting challenges with Matt. He very rarely leaves the house, has zero exercise, very poor posture and definitely overweight… due in part to medication. Matt’s personal care and hygiene have and continue to be an issue, his diet and food choices have remained the same for what seems like forever because of sensory issues. He receives most, if not all of his vitamins, supplements and fibre etc. in the form of a “shake” that he has twice a day.

Matt’s circle of friends is small and almost all through social media, which includes some of the less desirable on-line groups spreading their messages of hate and intolerance. These groups and their connections bring about a darker side of Matthew that usually only Trish and I see. It’s threatening, delusional… almost like a psychotic break. Parental controls have proven to be futile, as like most parents, the children are more tech-savvy than we are.

He has seen three different psychiatrists throughout the years who didn’t seem too concerned about these behaviors. Why would they? They never see him at his worst. He has a new referral to a psychiatrist that is closer and it’s my hope and prayer that this new doctor will be more successful in establishing a good relationship with Matt and building it from there. PSP is taking a little more away from me each day… I can’t advocate for him or fight with him anymore and my saintly Trish is becoming overwhelmed with our circumstances.

Matt has gone for pre-op appointment at the hospital. He has four badly impacted wisdom teeth which will require surgery with anesthesia on the 1^st of September. We have waited for well over a year for this appointment and would have waited longer had it not been for a cancellation.

The 25^th of August was my sister-in-law Marg’s birthday. She came over to the house and we went to dinner in Cambridge… dessert was at the DQ naturally. A good dinner, awesome DQ dream and great company all made for a good evening. Even better and as if on cue, a male cardinal appeared on the top of my spruce tree beside the driveway, loudly singing as Trish and Marg were saying their goodbyes.

For the last few mornings I’ve been in a bit of a brain fog in addition to the usual rigidity. I know that this is part of the dementia and just not being tired, not having my coffee yet, or whatever other excuse I can come up with. Feeling discombobulated… and the whole slow thought and reaction process leaves me frustrated. My whole balancing act (or lack of) has become more frequent lately which has nearly caused a few falls. Trish has just happened to be close by during these bobble wobbles and then asks “what was that?”… I think I’ve run out of excuses.

Trish and I talked about the PSP tonight… she says that I don’t talk to her much about it. I’m not avoiding the conversation… it is what it is and I’m just trying to stay ahead of it. She always asks me how I’m doing and I do my best to answer, I know how difficult all this is for her. I try not to dwell on the PSP, nor can I ignore it… its symptoms are plainly obvious to the both of us. Some people have said that I look good… I thank the Botox for that. Then they hear me speak, see the cane, the walker and then you see the puzzled look on their faces… it’s like I’m messing with them lol.

Trish and I finally sat down to a real fire tonight for the first time this summer I’ve had a couple of fires to burn yard waste, tree trimmings and the like. We’re both pleased at how my happy place has really come along this summer soon it’ll be time for fall clean up… ugh!

I’ve had some numbness in my left hand and lower left side tonight, this is a new sensation for me… I don’t know if its PSP related, I’m keeping an eye on it. If my speech begins to slur and if I feel any numbness is my face then it will be time to call 911. Fortunately there were no other symptoms of a stroke and by morning the issue was gone. I don’t think that Trish can handle any more concerns… nor can I for that matter.

Pam has sent me all of Mike’s writings, portions of which I’ll include as well as our emails in upcoming posts. The summer’s yard work is finally done… just maintenance to do, and to think that fall is just around the corner…ugh!

Someone or something must have spun the Brain Game Roulette Wheel with the hope of the ball landing on the Stupid slot this morning… I hope they bet heavy for a big payout lol. I was in a bit of a brain fog to begin with when I got up. My breakfast routine stays the same through the week and only changes on the weekend. I drink half a cup of coffee first toast one half of an English muffin… instead of butter I put on 1 Tbsp. of olive oil. Next I poach an egg in the microwave and put it on the English muffin along with a dollop of ketchup… yes ketchup, a slice of Swiss cheese and return it to the microwave for a few more seconds until the cheese melts. I take my morning meds, eat my breakfast, finish my coffee, have one navel orange and then start my chores.

For some reason today, I thought that I could poach my egg with the toaster… don’t worry, I didn’t crack the egg. I placed it on one slot of the toaster along with the English muffin in the other side. When the muffin was done, I put it on the plate added the olive oil and went to get the egg from the microwave only to discover that I didn’t poach the damn thing. Luckily the toaster element will only heat up and toast what is in the slot. Shortly after that, I put something that I used in the wrong place… again. I then made a thickened bottle of water for my exercises, went to put the water where the thickener is kept and was going to take the thickener downstairs with me… duh!

Trish and I travelled to London this afternoon for my quarterly Botox injections. I can see by the date on my to-do list that this is the last day of August… wow, where did it go? Trish asked me if afterwards we could go to the mall and look for something for Matt, she reminded me that there was a Dairy Queen there… I just hate it when someone tries to strong-arm me lol.

The last week of August has been very stressful for me. I know it has been for Trish as well, including Matt who is going to have some dental surgery at the hospital on September 1st. We’re all quite anxious about it Trish and I are praying that they’ll be no behaviours on Matthew’s part. Added to those prayers are the people of Houston, Texas who have been battered by hurricane Harvey. I sit and watch in disbelief as the news shows more and more devastation, it also reporting at least 30+ deaths so far, but as the flood waters recede, I’m quite certain that number increase. When you see what people have lost and the struggles they already have and will endure in the future, it makes my PSP insignificant.

It was an early start for Trish and Matthew this first day of September he has to be at the hospital for 6:30 am to have his wisdom teeth extracted. This is the day both Trish and I have dreaded… her more so, because she has to be with him before the dental surgery and in the recovery room. To save a lot of anguish, let me just say that Matthew is not a good patient.

His surgery has gone well enough, there were some “difficult” moments when he had to have an I.V. inserted and then finally a mask for the anesthesia… apparently other attempts with medication under the tongue and an injection failed. When he finally came out of the anesthetic he was talking payback against the medical team…ugh! Trish managed to get him home on her own after this procedure… several years ago he had to have an extraction for which he had to be put under. During that drive home, Matt tried to get out of the van while Trish was driving with me in the back seat trying to restraining him… very tense moments, he was hell-bent on payback that time too.

The next few days will be difficult, as I said before Matthew is not a good patient. He has a morphine based med that we can put into his shake, that’ll help with the pain but it also makes him sleep. You might ask what is wrong with that, well like most people with autism, Matthew has a schedule or routine that he has to do every day at the same time and this sleeping interrupts his pattern which ends with a behaviour. So, you take the pain, the confusion (from the anesthetic), his anger, pattern interruption and you end up with a recipe for major melt-downs… lovely.

It’s the first day post-surgery for Matt. I’ve woken up very confused this morning, its 7:45 am and my alarm did not go off. I made my way upstairs to the kitchen and I see that Trish has marked off on my list: feed dog and cats. I also see by the list that it’s Saturday, September 2^nd which now makes sense as to why my alarm did not go off…I don’t set it on the weekend. I think that it’s safe to assume that she got up earlier and fed the animals and then went back to bed. I took my morning meds, made a coffee and came back downstairs for prayer-time.

When I finished my prayers and coffee, I went back upstairs to have breakfast and that’s when Trish came down. She let me know that she had fed River, the cats and also asked how I was doing. I told her I was a 6 on the scale but I had experienced some confusion, which she said she had noticed first thing. She made sure that I had taken my medication and asked if I had any trouble swallowing, as I had cereal for breakfast… told everything was okay so far.

I came back downstairs to read some email and to also see what was going on around the world via MSN. After that, I was going to do a little extra work in the sanctuary, then have lunch and a nap… that was the plan anyway. Trish is going to get groceries and has asked me to help Matt set up some damn thing called Elgado with his computer and one of his many gaming systems. Two things… I’m not a techie and the other, I hate spaghetti… not the pasta, but the wire kind. There is so much of it with all these gaming systems, TVs, Lap Top and gamer chair. He’s miserable because of his pain and frustrated because he can’t initialize this new program and I’m going to help…yea right.

After two hours of switching this and plugging in that, checking this, checking that and countless Google searches with no success, I ended up telling him to uninstall the program, reboot his computer and start over again. By this time Trish has just arrived home from grocery shopping, I still have to have lunch, take my meds and have a nap. Trish said that she would look at the program again after she put away the groceries, but I was to have my lunch, meds and have my nap… don’t have to tell me twice.

It’s Sunday September 3^rd… the day of the family reunion. Long drive there… input the shortest way on the GPS which took us down all the country back roads… beautiful scenery and large estate homes tucked in amongst the fields and forests. I wished that I could stay longer… my heart and my mind want me to, but my body is really telling me otherwise.

It’s been far too longs between reunions… that said, it was wonderful to see the rest of my large family again… might be the last time that I see them all together… hope not. I’m just waiting now to see all the pictures and memories on Facebook.

Tuesday, September 6^th, the Monday of the long weekend was the last unofficial day of summer. That brings about a bit of sadness for me as Trish is back to work today. During the summer months I stick to my routine (list) so that it’s not so difficult when she returns to work. I’ll miss Trish during the day and even though she’s usually back home by 4:00 pm… it’s still not the same.

I think that this is at least the third time now that I’ve sat down over the last couple of days and just stared at the keyboard. I know that I said in my last post that I would share more emails between Mike and I as well as portions of his personal story called ‘Surrender”…and I will. Truth be told, my grieving process is really just beginning and I’m finding it difficult to get over that first hurtle…

… More Memories of Mike

Tim Brown 2015 – 11-01 11:24 AM

Hi Mike,

I hope today finds you well. It’s a little cool here right now – very breezy, but the sun is shining. The Lord hath made a glorious day, and I shall be glad and rejoice in it. Hope Pam and the rest of your family are doing well (under the circumstances) also. I’ve been re-reading your writings, as I do now have difficulty retaining new information, and not surprisingly, discovered things I originally missed. I may have told you that I would also like to journal my experiences to share with others, which began with an honest and open email to wife Trish. You deserve the credit here my friend. For if were not for reading your story, I may not have taken that first step – thank you once again for sharing. I am wondering if you will allow me to share your story to date with my sister-in-law Marg, as I would most certainly ask for her help and guidance to pen my own story thus far. Let me know if that would be okay.

Blessings

Faith and Hope

Unique 1

Mike Sweeney 2015-11-01- 11:54 PM

Tim

I have been spending some time on my writing, wanted to get it down before I forgot. You know what it is like to type. I pray that every day is a glorious day and you rejoice in it no matter the circumstances, because by acknowledging the LORD made it, means He is in control, which makes it GLORIOUS!

I think it is awesome that you are writing about your journey and sharing it with your wife. As for myself I take no credit, just give God all honor and glory. You can share my journey.

As for the cane it arrived Saturday and is going back Monday. My daughters ordered me one and I did not like it (having the cane in general). I told my wife I’m one of those guys that never worried about his appearance or what people thought of me, but if I had to have a cane I wanted it to reflect me ( it also meant another week without it ).

Thank you for encouraging me not to give up the battle, I won’t, besides it is not my battle I surrendered it to God and I trust Him.

It has been raining off and on all day and is raining now. According to my in house weather girl (Pam) she told me that it is suppose too rain the next two days.

When you reread my story what new things did you discover?

In Christ, John 14:20

U-2

Tim Brown 2015-11-03 8:02 PM

Hi Mike,

Hope today finds you well … as one could expect. I know exactly what you mean about getting it down or done, before you forget. For me, that applies to just about everything ha ha – even if it’s at an inconvenient time. I’ve now made a commitment to myself to journal my own journey with PSP, even if it means to stop what I’m doing at the moment, run to the laptop and document whatever it is that has come to mind. For me, these are often fleeting thoughts and I’m quite apt to forget (haha –need to have some humour with dementia) if I don’t seize the moment. So much so, that it took me almost an extra hour to get my morning chores done, because I kept running back to the computer. Much as you did with your writings, I’m trying to create a time line … not an easy task as I’m going back of couple years. So much has been forgotten, and there’s so much more I would like to forget. It may take me a couple of years at this typing speed to say what I’d like to say and should have said already –may never catch up ha ha! I’m seriously considering an audio program – I think they call it Dragon? It’s where you talk into a microphone and the spoken word is converted to text … could be just as aggravating though. I’m guessing you returned your cane by now. What’s a cane to look like that would best reflect you? And by the way, I came up with plenty of the old excuses (and probably some new ones) as to why I didn’t need a cane. I tried the same tactic with the walker … and now I’m the “proud” owner of a sleek, little black number complete with a seat and a handy zippered compartment. And it even folds for easy storage … and yes, it even runs during a power outage ha ha! As I mentioned, there were a few things I missed so far. Like the web page your family set up –what a great idea, and your airplane ride – don’t know how I missed that… duh. I’m going to continue to re-read some more. I’ve taken my third installment of levocarb – one more to go plus the other five pills and I’m getting pretty silly and tired. Signing off.

Blessings

Faith and Hope

Mike Sweeney 2015 11 – 06 – 12:30 AM

Hey Tim,

I believe we have only seen the sun for two hours this week, looks like winter, without the cold. Loved how you described your walker, can’t wait for my turn (ha ha ). I think I’ll have flames on mine ( not really ). The cane I liked was wood. I thought I might try to make one, but I would never find the time. I’ve seen the Dragon audio program advertised on TV, Pam has mentioned it for me. I wonder if they have a southern addition for the accent? Have you considered a pocket recorder to record your thoughts? When I was asked to fly the plane it was awesome. When I turned 50 Pam took me to north Georgia, close to Chattanooga Tenn., to go hand gliding. They have you sign your life away in case you get hurt, step into a harness which has a cable attached, you crawl under the glider. They attach the cable and the instructor slides in next to you. You then notice he has a parachute and you do not. Legally they can’t take you for a ride but they can teach you how to hand glide. I put my right arm around him and hold a handle put my left hand on the bar. An ultralight airplane took us up to 3000 feet and let us go. He shows me push bar go up pull bar go down slide bar left or right to turn. I’m told to put my right hand on the bar, told to let left hand just dangle in the air and same for right. I was floating in the air like a bird, except for the cable attached to my back and it was awesome!!! I was then able to fly the hand glider around the air field about 4 or 5 times then he landed. Got out of the harness, tipped the guy, walked back to the car sat down and cried like a baby. I can’t describe the peace I felt while up there, just amazing.

You’re still in our prayers.

In Christ

Mike

Tim Brown 2015 11-08 – 11:13 PM

Hi Mike,

It sounds like we had more sunshine here this week than you did south. Temperatures were unseasonably mild … almost balmy. That has all changed by the weekend. Trish and I attended a funeral service on Saturday, out of town and much further north of us. Shouldn’t be surprised to hear that we ran into some wet snow ….ugh!!! Suffice it to say I’m not looking forward to winter… sorry it’s just not my favourite time of the year. I’ve already begun to some pre-winter maintenance on the snow blower. Keeping my fingers crossed that we don’t get buried again this year, like we have in the past two. I bet you if you go on the internet you could find a nice Z28 package to trick out a walker ha ha. There are some really nice wooden canes out there. I had also thought about making one with a carved handle, but Trish insisted that I would have had numerous falls by the time it was completed. I have a curved handle cherry wood cane that was originally my grandfathers and then my used by my father in his last year. My mother asked me if I wanted it after he passed, and not wanting to disappoint her… I graciously accepted it. The thought that I would actually be going to use some years later never crossed my mind. That’s my indoor cane. The outdoor cane is made from aluminum, is adjustable, and even has an ergonomically correct handle – don’t you know. Truth be told, I’m always misplacing one. It’s easier to grab the other one rather going searching for the lost one. Now here’s something funny, you asked me if I considered a pocket recorder. Earlier in the week I decided that it was too much of an aggravation running to the computer to capture my relevant thoughts for my journal or anything else, every time one came up. It became more of a distraction and interfered with my routines. Then the bell gonged … yeah it actually did, that’s the chime tone I have on my phone whenever I get a text. It then occurred to me that I have a voice recorder on my phone… why not use that instead – voila! And even funnier yet, the first message I recorded was to “ask Mike if he has a smart phone with voice recording function” so you could record important details. Dragon program is still not bad idea. I’m pretty sure it could make the distinction between southern, eastern, western or northern accents. Don’t you think … eh? eh? ha ha! That was a pretty awesome birthday gift for your fiftieth. Trish had a surprise party for me when I turned fifty, and I mean surprised. She managed to get members of my family from way out of town to come without my knowledge. Still don’t how she pulled it all off … even to this day. Up there in the blue skies and taking in all of God’s great creation – leaves you in awe. I know, we went up in a hot air balloon it was on my “bucket list”. Trish had surprised me (again) with the ride as a birthday gift two years ago. Due to numerous delays and rescheduling because of weather, we finally got up for a complete ride this summer – well worth the wait. The Balloon Company asked if I would recommend them on TripAdvisory.ca, and I obliged them. My short column was called “Bucket List” – they now use it as part of their advertising on that web site and Facebook. I’m now thinking I should have negotiated a free ride in there somewhere, as they seem to be getting a lot of hits on the web site. Oh well. The time is getting on here, and I still have some journaling to do yet, so I will say goodnight and God bless.

Hope and Faith

Tim

Mike Sweeney 2015 11-10 9:30 PM

Hey Tim,

Pam told me about your wife’s aunt that passed away. Sorry to hear that. Today we finally saw the sun!! I enjoyed being outside. About the Z28 package on the walker…..I’d go for it if it was a SS model!! I always enjoy reading what you write. We each have our own style. You seem to have an awesome sense of humor. Can’t wait to read about your journey one day. I think it awesome that you have a cane that has survived three generations. I took my cane out for its first run tonight. I guess it will be ok. I do have an old IPhone I could use as a recorder. Now I talk about flying and hang gliding but I’m not sure I would go up in a balloon. Being able to control something I can fly vs. trusting in the wind to blow it wherever it wants to go would be my problem. So, hats off to you. I agree you should get some sort of kick-back for advertising for them.

Winter maintenance for us is just keeping the door shut. HA HA!! Sorry. Couldn’t resist. Saturday I had a rough day. The rigidity was unreal. It felt like it even affected my thoughts. Because of the severe tension. Is this what you experience at times? It eased off Sunday. I know this might be kind of morbid but have you ever thought about your own funeral? I know I have. My wife went to a funeral last week for a friend’s brother. The man who spoke at the funeral was supposedly a pastor. He mentioned the date the man was born and the different things that happened on that date. He didn’t talk about the man’s life. Just that he was a nice guy and had lots of friends. He had worked for Delta Airlines and his whole shop came in support of him to the funeral. But that was it. Very sad. I believe I’m going to plan my own to an extent. I don’t want it to be sad. I want it to be a celebration. A celebration of life. I would like to have people that I’ve had relationships with during my life to speak about our life as friends-good or bad. Have you seen the movie Get Low with Robert DuVall? He planned his funeral and attended it before he actually died. True story. You should watch it if you haven’t already.

To be absent from the body is to be present with the Lord. Keep on fighting the good fight. Maybe one day in the future I’ll be able to come see you. Don’t know if it will be possible but it’s a thought.

Keeping you and your family in our prayers.

In Christ, Your brother from a different mother,

Mike

Mike Sweeney 2015 11-10 9:56 PM

Tim,

Pam has asked me what I wanted, to be buried or cremated? I told her it did not matter to me I wasn’t going to be there, just my body. I said you can put me in a pine box and put me in the back yard, or cremate me and plant a tree on me. I’m just looking forward to what was promised me upon salvation, eternal life with my Lord and Savior Jesus!

Our daughters have teamed up with CurePSP, in late April, to put on a 5K race at our church and a fundraiser to help bring awareness to PSP. There is a 5K track around our main church property. Cure PSP keeps the money from the race, we keep the rest which will go towards medical bills and my care. We attend Crossroads Church Sharpsburg Ga. check us out on the web. Would be nice if you and Patricia could be here for the event. We could share our experience with PSP with everyone who attends.

Casting Crowns is my favorite contemporary Christian music, Thrive cd. I also like bluegrass music. From 8th grade till I was 21 I lived in Kentucky, we are Wildcat fans, (University of KY). The all time winningest college basketball team!

Take care. Talk to you soon.

Your friend In Christ,

Mike

Tim Brown 2015 – 11-11 2:58 PM

Hey Mike,

Thanks. Her aunt was 92 years when she passed. The service really was a celebration of her wonderful life – as it should be. And no, I haven’t really given much thought about my own funeral although I have it written in my will that I wish to be buried –Trish prefers to be cremated. I have this notion that I have to be “whole” the day I meet the Lord. That might sound silly to some, but that’s what I believe, and wish for. Trish has this nightmarish though about burial and worms … and she thinks my idea is silly ha ha. I think that I would like a story board in pictures – very popular nowadays, where family and friends could remember, talk, laugh and share good memories (hopefully ha ha) that they had with me. I would like the music to reflect my life. A nice mix of some appropriate pop songs, country and new Christian music – which I am really beginning to appreciate, and the ending of one my favourite Eagles tunes … Take It To The Limit (one more time) … can’t you just hear it now? Trish does know how I would like the service to begin. That would be with one of my favourite hymns – How Great Thou Art, and the final hymn … Amazing Grace, played on the bag pipes with a single bass drummer. I don’t want a dry eye in the place at that point ha ha. It’ll be a send-off to remember, well at least for the attendees any way. I’ll make a note to see that movie… don’t recall seeing it before.

I found my misplaced cane… well, Trish actually found it under my couch in the cottage. That’s what I call my man cave, it must have laid it on the floor just before napping and accidentally kicked underneath as I got up. We’re reunited- yeah! The phone recorder idea is working out great – wish I had thought of it sooner. It’ll take a little to warm up to the cane idea. Guaranteed they’ll come time where you’re glad you have it. As for air balloons, you are pretty much at mercy of the winds, however, the pilot does actually have some control with it. On our flight, he landed it at the end of the runway of a regional airport just as he told air traffic control and us he would do. Could you imagine the looks on the faces of the pilots and passengers of other air craft as this balloon comes in to make it’s landing. Nothing at all that would you expect to see while taking off or landing. And for those days when the rigidity, tension and thought process run amuck, well I have a word for that…Discombobulated – pretty much sums it up.

It’s on my to-do list, as it is on Trish’s, to meet you and Pam. Not a question of if … just a question of when. It’s time to feed the dogs and get dinner read, so I will say goodbye for now…my brother from a different mother. (thought I had heard some stories about my father ha ha)

Blessings

Faith and Hope

Tim

Tim Brown 2015 11-13 9:32 PM

Hi Mike,

The tree idea as a living memorial is not bad actually. I heard that there an outfit there somewhere that takes the cremated remains and incorporates (for lack of a better word) into the root ball a young sapling I think. The family then plants the tree at a location of their choice … I’m guessing, along with a plaque to honour your memory. I know that our families will take comfort in the fact the we have found peace in our salvation, when we finally meet the Lord, but a living and growing reminder would be a nice way to remember a loved one by too. I am aware of the fundraising events held by CurePSP. They’re a terrific organization with lots of resources … I was surprised to find out that they’ve been around for 25 years. I don’t think you’ll find a better group of people advocating for us – working on our behalf towards treatment and a cure for this awful disease. I can’t promise that we’ll be there for your event, but Trish and I will look into further. Let me know when you have an exact date. That be an awesome way for us all to meet don’t you think?

I checked Cross Roads website … very nice. Hope you can fill the property with 10,000 supporters the day of your event… couldn’t ask for a better way to share our story. Maybe even get Casting Crowns to do a benefit concert that day … but “who am I” to ask. Thought I’d put it out there … couldn’t resist.

How are you feeling this week? I’ve been having a terrible time with rigidity in my neck and legs … even had another fall last night in the garage, no boo boos though. Just missed the step going down completely, which accounts for about 75% falls on the stairs I’ve had. Keep hoping that my luck holds out. The afternoon wasn’t better either … feeling a little overwhelmed (and you know what I’m talking about) – had a few tearful episodes. Kept wondering where the brain game roulette wheel was going to land next. I thought about watching the hockey game… I’m a die-hard Maple Leaf fan don’t you know. They’re the worst team in the NHL right now ha ha. As it turned out, they beat Nashville 2-1 in a shoot- out. Had I watched the game, they probably would’ve lost.

Ta-Ta for now. God Bless.

Hope and Faith

Tim

At this point, with Mike’s and his loving wife Pam’s permission, I’ll share an unedited portion of Mike’s personal story he titled Surrender. In Mike’s own words… his story begins:

I have been thinking of writing about my journey, which I will call Surrender. The title of Surrender, I hope, will be defined by my life the past ten months but by the last almost twenty-five years. When I kneeled down at my couch one night, I had come to the end of myself. I needed help. I can remember thinking I can’t do this (life) anymore by myself. I found myself crying out to GOD telling Him the same thing. I almost thought I was going crazy. That crazy has been defined as a war in my mind. The battle was for me. I have experienced that craziness many times since then but it was not until the last five to six years I came to understand all God wanted was me. All of me. And it was to be His way, not necessarily my way. So that night on my knees I accepted Jesus Christ as my Lord and Savior. I did not know it then but LIFE began.

So back to Surrender. About ten months ago I went for a wellness check up. Explained to the doctor some of the things that were going on with me. Like when I walked my steps were shorter and it took about a mile for me to get into rhythm. I noticed my arms were not moving and when I focused on moving them farther, my stride was stronger. My hand and arms and legs shook at times. I mostly noticed when I was at rest. And then there was the drooling. Dr. Raily said I showed no expression in my face. He referred me to a neurologist, Dr. Goli. Dr. Raily wanted to know if I had any history of Parkinson’s in my family. I did, my grandmother. After a Cat scan to rule out a stroke I had a Dat scan which confirmed Parkinson’s.

By the time June 30^th came I could barely sign my name, the shaking was so bad or tremors as the Dr.’s refer to them. When Dr. Goli told Pam and I there was a silent moment. I did not look at Pam because I knew I would cry. After a deep breath I actually felt some relief because deep inside I knew there was something wrong. As I look back now God was there with us. After a discussion of treatment, we were on our way home. I do not remember the ride home. I do remember kneeling at our ottoman. I told God I did not want this, asked him to heal me. I told Him I trusted Him no matter what, and I meant it with all my heart. I told Him if this is what I was going to have this then, I wanted to honor and glorify Him with this disease. As we would soon find out Parkinson’s was just the beginning.

I will follow up with more of Mike’s story and our emails in my next post. Thanks for reading… Tim

20170429_181936

The PSP Chronicles… Memories of Mike

August 3, 2017 ~ T.J. Brown ~ 2 Comments

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It was at the end of the first week of July when I received a call from Mike’s wife Pam… Mike’s condition is deteriorating quickly. Family from out-of-state are coming to say their goodbyes, while family and friends that are local have been in to see him. I received an update from Pam earlier this week saying how difficult this journey has been for her… and rightly so. Later that same week Pam called me… Mike had asked her to say goodbye to me for him as he can no longer communicate, we all know that there isn’t much time left for Mike. Throughout his whole PSP journey, not once has Mike ever complained or was even angered about the hand he was dealt, instead he chose through his circumstances to bring honour and glory to the Lord. Such is his faith in Christ, and despite the many challenges, this became the path he followed… his personal story which he called Surrender.

When I could gather my thoughts… 3:15 am the next morning I sat down, wrote Mike a letter, emailed it to Pam and asked her to read it to Mike hoping he would hear my final words to him.

Pam Sweeney 2017 – 7 – 10 – 4:16 AM

Hi Pam… Could you read this message to Mike for me please.

Mike, I’ve been sitting here in front of the keyboard for a while now, trying to find the right words to say goodbye. My thoughts are muddled and when I find the words, I can’t see them for the tears. I have saved every email that you and I have shared, and have been re-reading them over and over again, including your writings on your own story… Surrender. I remember back in October in 2015 responding to a question that Pam had posted on a PSP Facebook group, who knew at the time that question and my response would lead to such a wonderful relationship.

I believe that there is no such thing as coincidence, and that the Father through His mysterious, yet wonderous ways answered silent prayers and paired us. We share a very special bond and “clicked” immediately, never in my 60 years have I ever experienced this kind of connection with the exception of the Lord. As time went on, this bond strengthened to what it is that we have today… Love. Trish and I both agree how great it would be to have known you, Pam and the rest of your wonderful family long before this, but we trust the Father and his perfect timing. I think I understand why the Father brought you into my life, but mine into yours’…? well that leaves me a little perplexed, but I would never question His reasoning.

I can’t thank you and Pam enough for opening your hearts and your home to Sean and I… that goes for the rest of your family as well. We had such a wonderful time during our first visit for your event and we’re very proud to be included in it. Lets’ just say that time, and this time forward has been for me and Sean food for the souls… our daily bread. As I continue to type, I think that my perplexing question is answering itself and strangely enough bringing me some comfort and peace. Your loving family, friends including me will miss you dearly, but we take comfort in the fact that when the time comes, we will all meet again and share a seat that has been prepared for us at the table along the side of our Heavenly Father and His Son Jesus. Until that day, may I say thank you for coming into my life and like the Father, your grace and spirit have touched my soul.

Until that time when we meet again in Heaven, may God bless and keep you.

Tim… Unique too.

As for me, I will always have hope; I will praise you more and more.

Psalm 71:14

My dear, dear friend Mike Sweeney passed away this morning July 13/17 at 6:07 am. I learned of his passing after returning home from the neurologist’s appointment in London today. Mike was foremost on my mind when I asked Dr. Pasternak today about any new progress towards tauopathy (Alzheimer’s-PSP) and other dementia(s) clinical trials, orphan drugs etc. undoubtedly hoping for a miracle for Mike and millions of others worldwide. He wasn’t aware of any new trials at this time, other than the ONDRI study, which I’m already participating in. London Health Sciences Centre and Robarts Research are part of a global network working on neurodegenerative diseases, and share research findings, breakthroughs… all relevant clinical information. To date, there is still no treatment or cure although there have been very limited successes in managing symptoms of such diseases in some patients… not all.

The news of Mike’s passing… although expected, has left me a numb and saddened his family and friends. Mike and I loved each other as a brother and I wished that we had more time to further grow our very special friendship, I will always cherish the memories we made. I find peace and comfort knowing that Mike is no longer in the clutches of PSP he is now in the divine company of the Lord and all the wonderful souls that went before him… His promised salvation.

Pam called me today just after I woke up from nap we talked about Mike’s passing and how wonderful it was that his family were all there for him. Everyone shared stories and even laughter… including Mike as much as he was able to. Caitlyn crawled beside him in what Mike called his “hospital bed from hell”, crying she told him that she loved him… Mike then began singing the Barney Song… I love you, you love me. Mike refused to let PSP define him, in life and in death. Pam told me that Mike had been cremated the same day she called and that his brain had been donated to CurePSP and the Mayo Clinic, which was his wish. A Celebration of Life service is going to be held on the Saturday at Crossroads Church which Mike was a member of.

I’ve been trying to stay busy, but as the days move on I am missing him more and more. Mike and I were each other’s personal support, I’m finding it difficult to write and often find myself staring blankly at the screen. The PSP Chronicles are intended for my family, friends and others to read, but Mike was the inspiration behind my story and the PSP experiences… it was our journey to share. I’m trying to find a way to continue my writings in such a way that would show how our special friendship began and to also honour the memory of Mike in a way that he truly deserves. To that end, I have asked Mike’s wife Pam if I could share our emails and portions of his writings and she told me that Mike would be honoured. Our story is a long read, I don’t want you to just read and gloss over the name Mike… see a couple of pictures, no I want you to know this very special man and mighty warrior for all things Christ and PSP.

My thoughts are scrambled and it’s difficult to type for the tears as I remember my dear friend and hero Mike Sweeney. Our story began in October 2015 when Pam asked a question on a PSP Facebook group, her husband was experiencing some of what he called brain zaps and she would like to know from others in the group, if anyone else on the site had or knew of these experiences. I replied that I experience a similar sensation and Pam asked if it would be okay for her husband to contact me directly, I said sure and gave her my email address. What started as a simple question turned out to be one of my life’s greatest friendships and experiences… even though we were both terminally ill. Here’s how it all began… in our own words.

Mike Sweeney 2015 – 10 – 19 9:12 PM

Tim,

My name is Mike Sweeney. My wife contacted you yesterday on Facebook. I too
have PSP and was diagnosed 1 year ago, Parkinson’s 4 months earlier. In the
past month, about 8 times I have experienced, after I have gone to bed, like
being shocked. It starts on the top of my head and goes to my hands or hands
and feet. I have no pain, just startles me. Once I woke up having
convulsions after just going to sleep. Have you experienced this?
How long have you had PSP?
Do you have trouble with your eyes? I’m not allowed to drive anymore.
I am 54 years old and have been married 34 years to my beautiful bride. We
have 2 girls and 2 grandchildren.
We live south of Atlanta Georgia in Moreland.
I look forward to hearing from you and about your journey with PSP.

Mike Sweeney=

Tim Brown 2015 – 10 – 20 8:57 AM

Hi Mike,
>
> It’s great to be able to share my experiences with someone else afflicted with PSP. While the support from loved ones, family, caregivers, healthcare professionals and the like is wonderful and appreciated, it’s still your (our) own experience. This is not to say that they are not affected by this disease as you probably know, and struggle just as hard as we do, maybe even more so as the PSP progresses. That said, let me share with you – the best I can, some history and experiences with it to date. I’ll do my best to update you as we move on from here, but you should know that my response from time to time may be slower than one might like. I struggle with FTD which many PSP patients experience, along with many of the other symptoms – depression, mood swings and the obvious physical conditions like muscle rigidity, balance and gait problems and yes, eye movement issues. I have good and bad days. Sometimes symptoms can change from day-to-day, or even hour by hour … you might be experiencing this already.
>
> Anyways, a little bit about myself, I’m originally from Toronto ,Ontario, but now I live in the small town of Ayr, Ontario. I turned 59 years old this past September. I am married to my beautiful wife Trish – it will be 22 years in March. We have an autistic son Matthew who will be 21 next month and five other adult children ( 1 girl and 4 boys) between us from previous marriages. We welcomed our seventh grandchildren this past September. I was finally diagnosed with Parkinsonian- PSP about a year and a half ago. Originally, I was referred to a neurologist because of cognitive difficulties. This doctor had concerns raised by symptoms he discovered during my visits, and referred me to a neuro-opthamololgsit, who after very invasive eye examination and other specialized testing diagnosed me with PSP-P. I was also referred to a movement disorders specialist who confirmed the PSP diagnosis. Like you, I had to surrender my driver’s license 2 years ago… the same time I stopped working and a great deal of independence that I took for granted.
> Eye movement problems to be sure, along with blepharospams for which I receive Botox – five injections on the upper and lower eyelids in both eyes every three months. Enough said for now, we can discuss more concerns and experiences as we move forward. There is one thing that I would like to leave you with, that is – HAVE FAITH AND HOPE.
>
> Faith and Hope,
>
> Tim

Mike Sweeney 2015 – 10 – 20 – 8:19 PM

Tim,

You are the second man I have known with the name Tim Brown. Tim used to work for me when I was in the construction business.

I experience the same symptoms as you do except for the FTD. I had to look it up to see what that was, I had never heard of it. That’s my biggest fear, is to lose my memory. But I have been a fighter all my life. And I will not let PSP define me. I have found for myself that exercise helps keep my body moving. All of my exercises are on the floor except for the treadmill. It takes me about a mile to get my stride right. I have found that if I sit all day I have to retrain myself how to walk. The more I sit the stiffer I get usually, so I try to stay busy all day long. I guess it’s as good for my mind as it is my body. They have offered me the injections for my eyes. Call me, chicken or a baby, but I just can’t bring myself to do it. So, I deal with it. Is the P after PSP you described for your tremors? I also have tremors regularly. I also have good days and bad days.

I looked up on the map where you live. And then I looked at the weather map for your area. It said that your temperature was going to be 10 – 14 degrees!! So, should I tell you I was outside in a T-shirt today?! Haha!! My brother lives close to Cleveland, OH, I kid with him all the time about how cold it is there. They had snow flurries Saturday.
I believe I’ll stay here in the south! Haha!! Even though I was born in Cleveland, OH, I don’t think I could take it anymore.

I’ve been writing about my battle with PSP since I was diagnosed. I’ll attach a copy to this email for you to read if you want. Because I do have faith and hope.

Thanks for sharing.

Mike

Mike Sweeney – 2015 – 10 -22 10:17 PM

Hey Tim,

I have been sitting hear for 5 minutes trying to figure out where to start, and for my eyes to open. My mornings are usually good, get tired around 1pm and my evenings are where I show most of my symptoms. I have fallen twice, did not get hurt, only my pride. If I turn while standing I loose my balance. Iv’e noticed I have been running into door jambs lately. If I stand still and shit my eyes it’s like weebles wabble and I will fall down, back and to the right. I’m ok in the shower, I focus on where the water is hitting me for my point of reference. No hearing issues but I can’t smell anything. I walk unassisted at this time. I’ve had a swallow test. They told me the same as you, chew my food, swallow 2 to 3 times to make sure it gets down. I was like, “duh!” As far as laughing, in the past month I have begun to laugh again. It’s because I have start on an antidepressant called Viibryd. I fight tooth and nail about taking one more pill…..but in the end I always loose. This one has been the best for me. My anger, apprehension, anxiety, has pretty much all lessened. In fact I was at my family doctor today discussing the brain zaps and Viibryd. He suggested I cut the dosage in half to see if the brain zaps stop. He said it was the first time in over a year that he has seen me smile and carry on a conversation with meaning. Before this the words came slow. They still do in the evening but this medicine has made it a lot better. I don’t know what you are taking but I am on 6mg Neupro patch, Klonopin, Baclofen, and the Viibryd. And, oh yeah, Dulcolax twice a day…..guess you know what this is for!! hahaha!!

In February 2013 I had to have surgery on my right shoulder. Coming out of surgery I guess I had some problems and they asked my wife if we had not disclosed all the health information about me. They wanted to know if I had restless leg syndrome or Parkinson’s. She said no. They had to keep me over night. As I began my 9 month shoulder recovery I noticed as I sat in my chair that my legs would shake. I thought I was just cold. Then as I started physical therapy I noticed my right arm and hand were shaking. I asked the physical therapists and they wouldn’t answer. As time went on it got to where I could not even write my name. I went and saw my family dr. He sent me to a neurologist. She ordered a DAT scan. It showed I had Parkinson’s. I started having trouble with my eyes. Went to see a neuropthamologist. She diagnosed PSP. And as you read my story…you know the rest. But this is all normal for me. I say that because for me it is the truth. May not be normal for someone else. I do get aggravated sometimes trying to button my pants and shirts. I don’t know about you but shaving is hard for me and brushing my teeth for some reason. It’s the simple things sometimes, like putting the soap on my body in the shower. I have to concentrate hard to get my hands to move the right way.

I know this will get to you late in the evening but I pray you have a wonderful day tomorrow. Try not to focus on what is going on with your body. Get your focus on something else. This is what I try to do.

I pray you experience JOY tomorrow.

Your friend in Christ,

Mike

Tim Brown – 2015 10 – 23 – 3:19 PM

Hi Mike,

I hope today finds you well. I’ve just awakened from my daily afternoon nap – meds always make me tired. Never was a big fan of naps before, but now I look forward to them. It’s a beautiful autumn here. The air is crisp, sunny skies, colourful leaves – on the trees, on the ground, in fact everywhere it seems. I’ll be going outside shortly to rake and bag the leaves … again. Truth be told, I love to get out in my yard as often as I can. Winter is just around the corner, which means I’m usually house bound – not a big fan.

As I read your comments on the falling issues I smiled. I know it’s not funny, but what you call your weeble wobbles – I describe mine as bobble wobbles. I guess that’s a description you and I can appreciate and only hope that others understand. You might want to reconsider the Botox for the eyes if they continue to be an issue. My blepharospasms were so bad, that I couldn’t read, focus etc. – almost drove me crazy. I’m not a fan of the injections, but they definitely help. I can still smell okay, I’m lucky enough for now that the brain game roulette hasn’t landed on that slot yet. I also have trouble shaving, and like you, I’ve gone through a number of different medications. Currently I’m on Aricept for the dementia, Clonazepam –restless leg (works great), Levocarb (Levodopa combined with something else to prevent nausea) for the muscle stiffness/rigidity. The doctor is always asking me if it’s helping. The truth is, I don’t know. I still have the stiffness, but I think I’m better with it, than I am without it. At this point, I’m not willing to stop taking it out of the fear that I’ll feel worse than I already do. I take Nortripyline for the depression and other mood baggage. And as for that other aggravating problem, PEG 3350 – a natural laxative. Glad to hear that you healed up from the shoulder surgery … I may need some after I finish raking the leaves ha ha. I see that you visited a neuropthamologist as I did they know PSP when they see it … sorry bad pun. When mine told my wife and I that had PSP, we both looked at each other and then asked what PSP was … almost sorry we asked. My dogs are looking at me right, as if to say what’s up … it’s dinner time – what are you waiting for. I’ll say good-bye for now – hope you have a great day.

Blessings, FAITH and HOPE

Tim

Mike Sweeney – 2015 – 10 – 24 – 11:09 PM

Tim,

I apologize for not getting back to you when you sent me an email yesterday. So how did the leaf raking go? I’ve never been a big fan of raking leaves. We’ve got 7 pecan trees in our front and side yard. Only 1 produced pecans abundantly this year. Abundantly so according the squirrels that run from all the houses around me to my yard. If you look at my driveway it looks like the squirrels have had chainsaws up in the trees. As far as the leaf problem, Pam took care of it with the lawnmower today.

When you get tired sometimes does it feel as if you are a power tool and someone has unplugged you? Does it come on that quick for you? I’ve been a trim carpenter most of my life. So, to stay busy my family has me making stars out of recycled pallet material. My wife through me a curve. She asked me to make a whale out of pallet material for one of the teachers at her school. She gave me a picture and said here you go. I’ve never done anything like that before. But it turned out pretty good. That’s where I spend most of my time, in my garage. When I’ve created enough mess I take it out back in the woods and burn it.

Question: do you happen to drool? At times I’m like an infant teething. I’ve reconsidered Botox and the answer is still no! Haha! I had droopy eyelids and had surgery to lift them and I still remember the stitches being pulled out of my eyelids and what it felt like. So right now I guess it’s not bad enough yet for Botox.

Friday I saw my family dr. We’re going to cut my antidepressant, Viibyrd, in half to see if this will stop the shocking sensation I get in my brain. As far as the convulsions I’ve had a couple of times, he says this is all PSP. I see my neurologist Monday afternoon. See what good news she has for me. The family dr. was encouraged because I was smiling. He said he hadn’t seen a smile on my face in a year. So, I’ll have to weigh the shocks against the benefits of the medicine.

I’m keeping you all in my prayers every day. Hope you have a wonderful Sunday.

In Christ,

Mike

Tim Brown – 2015 – 10 – 25 – 3:15 AM

Hi Mike,

No worries about the response time. It takes me time to compose my thoughts and even longer to type them … that is when I can remember them at all ha ha. And now that I see posted on my computer a question I forgot to ask you about before , so I’ll ask you now. I know that many people have different views on vaccinations, and respectfully so. Have you considered or received a vaccination against pneumonia? I got one late last year – I think that it’s a one time shot…not sure. Anyways, when I asked the doctor about it, she thought it was an okay idea because of the possibility of aspirated pneumonia … might be an extra line of defence. I’m making a bit of dent in the leaf piles out back, the front is another story altogether. I live on a cul-de-sac – right in the curve. The township planted a maple tree on the apron portion of the property for each home on the street … pretty normal thing to do in sub divisions around here. Just so happens when the leaves fall and the wind blows, they all seem to end up on and around the front of my house. Most of my neighbours make no attempt to rake them up … it’s the natural thing don’t you know. I’m all fine and well with that but as I said, much of them end up on and around my front yard. So, I took it upon myself to rake much of what has fallen – with much more yet to come to the curb, which has taken up the space of at least two and a half car lengths and about two feet high. I’m hoping the wind will just blow them away, but since it has rained that’s not likely to happen … go figure. I’ve been heard to say on occasion that if it weren’t for bad luck, I’d have no luck at all. It’s like PSP – a very rare disease, but it’s not so rare and no comfort to know that we’re “special” enough to hang that sign around our necks. Now to the power tool analogy … definitely a yes for me too. Like you, I try to keep myself busy with lots of projects around the house like stripping twenty years of wall paper, skim coating the walls and then painting them. And I’m talking just about every room in the house. My wife complains a bit about the projects – never had one turn out bad to date. But I need to stay busy to keep mind off of this stuff … and that’s not denial. It’s just redirecting and channeling my energy into something more productive, which gives me a challenge and often leaves me feeling good about the results. If my wife I or don’t like the results, then that’s a new project … see the pattern here ha ha. No surprise that I’m a big fan of the DIY shows. In the past I did a lot of wood carving, but my interest has waned just like many other activities. Occasionally I’ll pick up a block of wood or come up with an idea for this or that … but just usually ends up just as an idea. House projects are better right now for me I think. Anything I do is usually for the purpose of increasing my home’s value (my reasoning) and just to make sure that there is nothing major to be done when the time comes that I can no longer do it. You mentioned drooling. I have on a couple of occasions as I can recall, but not regularly – just yet. We’ll have to see if and when the brain game roulette ball lands on that slot. Just musing to myself on how wonderful spell and grammar check is ha ha. You’ll see that is rather late for me … one of those nights. Finding it hard to stay asleep, a little depressed – more questions than answers … a little beaten up emotionally, you know some of the usual stuff we tend to experience. Feeling a little a bit better now though, as I do this email, might be able to get back to sleep –we’ll see. Have you noticed that when you are experiencing some different symptom it’s all explained away, must be the PSP… probably is. Sorry if I sound a little cynical sometimes. Must be difficult for our loved ones who have live to with us, and I know if they could, they would take it all away. Trish and I are going to add you and Pam to our church prayer list – hope you don’t mind … tough if you do ha ha. I see that it is close 3:30 a.m., been at this for nearly two hours told you I was a little slow. I’ll see if I can get back to bed and asleep now. You have a great day tomorrow and just remember this, “if you can’t win, then you can at least grin” . Good night … or should I say good morning. Either way, I hope it’s good.

Faith and Hope

Tim

Mike Sweeney 2015 – 10 – 26 – 12:40 AM

Hey Tim,

I hope you had a wonderful day ( Sunday ), and Monday also. When I say hope, I do not mean wishful thinking, I mean absolute certainty. I must confess that the past two emails have been typed by my wife, she can type as fast as I can speak but tonight it is me. I am thankful for spell check although sometimes it has no idea how to spell the word I’m trying to get out. I do laugh at myself when I look back at a word and see how many times I’ve tapped on a letter because of my tremors. I don’t do flu shots because they have egg in them and I’m allergic to egg whites. We moved in our house it had been a foreclosure and in need of help. The dinning room wallpaper was from 1985. The men from our community group from church came over to help. My good friend Mark said he would do the wallpaper, well after 4 hours and only removing one strip of paper said “ this must be what hell would be like”. My first and only attempt at hanging wallpaper did not go well. And yes when I’m busy doing things I do not notice PSP. Yesterday evening and today have been my off time. I mean experiencing the effects of PSP, overly tired, uncertainty, dizzy at times,speech is off and eyes. I completely understand the depression the anger and crying at any given moment over nothing. My first attempt at a antidepressant made me feel nothing. I remember sitting next to Pam looking at her and saying to myself I should want to kiss her and there was nothing, stopped taking it that night. Second attempt , I broke out in hives. Didn’t want to try another one but did not want to live like I was. Talked to my neurologist she suggested the one I’m on now and it has made a difference in my life. The depression, anger out bursts, crying just went away. It couldn’t hurt to check into. And quit beating yourself up, remember, who you are has nothing to do with how you feel. Stop asking why me. Do you realize how unique we are, it sucks sometimes but it’s true!

If I have been to IN YOUR FACE with what I just wrote I won’t apologize, life is to short, you will just have to forgive me.

Thank you for putting us on your prayer list, Iv’e done the same for you all.

It has now taken me 2 hours to write this I understand.

In Christ, Mike

Tim Brown – 2015 – 10 – 26 – 6:15 PM

Hi Mike,

Sorry to hear that you had a little rough patch … I did on the weekend too. I’ll just make this a “standing” sorry to hear that between us – we know what’s ahead. I don’t think I ever asked if you experience any neck or trunk pain/stiffness. Mine is constant and very aggravating. Exercise, exercise and more exercise that’s my mantra. While it doesn’t make the stiffness go away, it makes it more bearable. I get a therapeutic massage about every 4-6 weeks that gives me some short-term relief as does a sauna. I’m fortunate enough that we have an infra-red sauna at home that Trish got from the insurance company as part of a treatment plan due to a soft tissue injury from car accident a few years back. I go in it about once to twice a week, depending on how I’m feeling – nice, but again only short term relief. I wasn’t great at hanging wall paper either ( I can paint well enough), Trish was better, so much so that she did the entire house.

I have only two rooms left to do, an en suite and a main floor bathroom…. phew!!!!! That doesn’t mean there isn’t more work to be done – as you know, even if it’s a make work project ha ha. I’m currently working on the kitchen … a little updating, which means on my budget repainting the kitchen cabinets and changing out hardware. Don’t need to be on a stepladder to long for this job, which I’ve been warned against because of the dizziness and fall issues. I’m a short person – only 5 ft. tall as I smile and tell them – there’s no other way for me to reach, to which the usual response is – don’t do work that requires a ladder. To which I reply … that’s not an option he – he. And so, the work goes on for as long as I am able to. At the next doctor’s visit, Trish (I won’t remember ha ha.) will inquire about the anti-depressant that you’re on and see if it might be suitable for me. I haven’t really got to the point where I ask “why me?” – hope I don’t. No pity party, just agitation, anger, and more often – frustration and all the other trickle down effects. That doesn’t mean I’ve accepted the PSP … but on my way out of denial. Miracles still happen every day … just need to make sure I have ticket for that line ha ha and no apologies… ever. We both know what we’re going through.

Blessings,

Faith and Hope

Tim (Unique)

… I’ll be Unique #1 and you can be Unique too (2) – I know, another bad pun.

Mike Sweeney – 2015 -10 – 26 – 6:48 PM

Hey Tim,

As you can tell by the speed this is reaching you, I’m not the one typing. To answer your question yes, I experience stiffness in my upper torso, from my rib cage up to my chin. And yes, it does cause pain around the bottom of my ribs, I don’t know why those muscles hurt. Here lately the front of my neck to the bottom of my jaw starts to tense up. It only does it periodically. But it sure is irritating. Of course I’m bothered more with it in the evening more than any other time.

I”m not much taller than you, I’m 5’ 6” Today I was on a ladder changing the light in my garage door opener and tightening the tension on the chain. I made sure I had ahold of something while I was up there. Remembering to not turn my head while I was on the ladder. Because I turned my head while coming down the ladder and the weeble wobbles came alive. (Pam is now not wanting to type anymore. She wants to hurt me!) ; )

It’s been raining here all day. Guess it’s the aftermath of hurricane Patricia. Supposed to rain for the next 3 days. Of course it doesn’t stop the squirrels from getting all the pecans off my tree. The temperature is beginning to drop. It’s supposed to not get out of the 50’s for a while. Guess that’s not cold for you, huh?

A sauna in the house sounds great. But, here in middle GA from June to September we live in a sauna!! Highs in the low 90’s with 99% humidity.

By the way, what did you do pre PSP for a living? Just curious.

Talk to you soon.

Signing off as: Unique Too

Tim Brown 2015 – 10 – 26 6:15 PM

Hi Mike …oops Unique Too,

5’ 6” – that’s still a 1/2 foot taller ha ha. Come to think of it now, I don’t turn while I’m on the ladder either – probably unconsciously compensating for the bobble wobble … like up against the shower wall while washing my hair. That was before I discovered the shower chair (sounding like a commercial now) OT recommended. Got to say… I’m really liking it. Doesn’t take up much space, easy to clean, and it’s affordable too – now it sounds more like a commercial ha ha. We’re expecting some heavy rains, gusty winds and seasonal temperatures up here beginning tonight and late into tomorrow – now I sound like the weather channel…jeesh! My neck and legs are beginning to bother me much more than ever before. I may add more exercises after dinner, as they always seem to help a bit. Typically, I do about 1 1/2 hour of exercise in the morning beginning with 5-10 minutes of hip rolls – an exercise I picked up from a Cure PSP DVD … very helpful for the lower trunk. 30 minutes on an elliptical bike, and the balance on the home gym for some resistance exercises. Need to keep the upper body strength in case I need to the use a wheelchair one day – hoping not too. A usual day sees me completing my too – do list, First feeding the dogs/cats. Next, I listen to a contemporary worship song – 10,000 Reasons, then coffee, breakfast, meds and a daily devotional reading. CHECK. Housework- CHECK. Exercise- CHECK. Shower- CHECK. I have a PSW five days a week for two hours beginning at my shower time (the safety issue thing) and a lunch time to make sure that I take my meds, and I don’t choke while I’m eating- CHECK. Next is the much-anticipated, and needed nap time – CHECK.

Feed dogs/cats- CHECK. Dinner, meds-CHECK. And oh yeah, somewhere in all that I must remember to brush my teeth to “reduce the effects of any harmful bacteria” in the event that I aspirate CHECK. Doesn’t leave me with much down time, which is a good thing I suppose. And oh yes, before I forget (no check), for the last 16 years that I worked, it was (technically still do for LTD purposes) in Auto Parts manufacturing company called Wescast Industries. A global leader in exhaust manifolds, turbos, housings and other hot end components. Boy, they’d be proud of me – sounds just like their website. It’s primarily a foundry and machining operation, and I held various positions from production to research and development. Prior to that, I was self-employed, owning a quick service restaurant and holding management and consultant jobs in the same industry. As I see by my clock, (and the dogs staring at me) it’s their dinner time. Sign off for now.

Blessings

Faith and Hope

Tim

Mike Sweeney 2015 – 10 – 29 – 11:07 AM

Tim,

The sun finally started showing its self yesterday afternoon, it rained for two and a half days. Been praying for you all, for God’s blessing, healing and provision. I attend a mens bible study on Thursday morning at 7am. This is week 3 of 5 on discipleship. Pam drops me off on her way to work and I get one of the men to take me home.

Most or all of my rigidity is the upper torso. I can be holding Pam’s hand and after a couple of minutes she is pulling her hand out because I’m squeezing her hand to tight, I don’t realize it. I don’t have a list yet, although I have been threatened ( suggested ) one would be provided for me. I tell her I first would have to remember where the list was.

Went to the neurologist Tues. . Going to send me to speech therapy and wants me to start using a cane. She could not explain the shocks I feel in my head, said it was some nerve. A couple at church were each given a room on a cruise ship because of their frequent trips. I believe Thanksgiving will be their 4th cruise this year, asked us to go with them. I asked the Dr. if it would be ok if I went she said clinically no, but she wanted me to go and have a good time. We have never been on a cruise. Have you? To be honest with you I feel like the PSP is progressing over the past few days. I was in residential construction from early 80s till 99 when I had back surgery. missing half of the L5 vertebrae. Became a building inspector, did that for about 5 years. went back out on my own doing interior trim then superintendent for a builder over two subdivisions until the economy crashed. was hired by KMMG ( Kia ), production, paint department, until shoulder blew out Dec. 2012.

I pray your day goes well.

U-2 Mike

Tim Brown 2015 – 10 – 29 – 3:06 PM

Hi Mike,

We’re still experiencing the remnants of Hurricane Patricia up here. They’re saying that there’ll be better by the weekend in time for Halloween. I don’t put much stock in the Weather Channel though … seems they get it right about 40% of the time. We continue to pray for you and your family as well as my church and the members of the congregation. It’s good that you’re getting out of the house, and having fellowship … even better.

The list thing is actually quite a good thing, even though I resisted it in the beginning. It’s hard to accept the illness and all the baggage that comes with it, more so, the seemingly loss of independence. The list however, provides me with a routine which all too important for me now. Just ask my wife what I’m like when my routine gets changed or don’t follow my list ha ha. Lists can be changed – added to, or items deleted, but they give me structure. No surprise that I try jam-fill my lists to keep as busy as possible – no time to think about or dwell upon the PSP. The physical reminder is there constantly as you know, so I try redirect my focus on other things. As for the cane, I was very reluctant to use it in the beginning. Now I look at it as just another item in the tool box, and it gives me some peace of mind where falling is concerned. On the upside, I get more doors opened for me than ever before ha ha. The cruise is a wonderful idea my experience is that the cruise lines treat you royally. If you decide to go, you might to consider some pre-cruise treatments … especially for traveller’s diarrhea . It`s a bummer … yeah I know – another bad pun. We were on the Disney Cruise to the Bahamas with the grandchildren a couple of years back, and guess what – I got sick … bummer. And to be completely honest with you, I know my PSP is progressing. I told my wife so in a letter I wrote to her, after being so inspired by your writings you so graciously shared. I plan to continue using that format to try to best articulate my feelings about this experience, I think that it is the easiest way to convey my thoughts. Thanks again for sharing. Now back to this PSP thing. NEVER give up the fight. Stubbornness can be a good thing just as hope and faith are. And remember – exercise, exercise, exercise. It makes all the difference in how I feel.

Blessings

Unique #1… or Tim as I’m known by most ha ha.

I think that I’ll stop at this point with the emails. As I copy and paste them here, I’m also reading and remembering my dear friend and I can’t go any further. We all handle grief differently and I’m no exception. It’s been almost three weeks since Mike passed, but I am only now really beginning to feel his loss. As I continue with the Chronicles and moving forward, I will introduce more emails and Mike’s own writings. You will discover the man who truly walked in the light, always praising and giving glory to the Lord regardless of his circumstances. Not only did Mike have a profound impact on me, his family and friends, but on everyone he met.

For you Mike, my hero:

2 Timothy 3:10-15: I have fought the good fight, I have finished the race, I have kept the faith.

Mike, my mighty PSP warrior, you fought the good fight, you finished the race and most importantly… you kept and grew in Faith while remaining gracious and humble every step along the way. I love you brother.

20160430_105555

Michael Sweeney August 10, 1961 – July 13, 2017

Our loss is Heaven’s gain… looking forward to that day when we will meet again my brother.

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The daily journal about the journey of one man diagnosed with a rare neurodegenerative disease- PSP Progressive Supranuclear Palsy and FTD Frontal Temporal Dementia

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Summer 2018

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The PSP Chronicles Final Winter Update February – March 2018… Sprinter

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The PSP Chronicles… Final Fall Update

The PSP Chronicles… Early – Mid Fall Update

The PSP Chronicles… Early – Mid Fall Update

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The PSP Chronicles… Memories of Mike

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