The PSP Chronicles June 2017

 

The PSP Chronicles June 2017

 

I begin the month of June with a 6-7 on the stiffness scale, but I won’t let that stop me from patching some bare spots in the backyard where the dogs have peed. It’s always in an area where the snow was not quite as deep so that they wouldn’t (as Luba calls it) freeze their pee pees off lol.

The OT was here this afternoon along with a representative from Mobility in Motion. I’m trying out another walker, Willy will now be reserved for downstairs and whenever I’m out and about and Wonka will be exclusively for inside the house lol.

The PSP community and a special family have lost another member to this cruel disease today. It seems now that a week doesn’t go by where someone succumbs to this indiscriminate disease. My thoughts and prayers go out to the family, there is some comfort in knowing their loved one is no longer suffering.

I’ve been outside on my hands and knees pretty much all of the weekend weeding. I thought that I could just move along the grass sitting on Willie and bend over to remove the seedlings (which seemed like thousands), but I quickly found out that was not going to work… on all fours was my best bet.

I’m experiencing a little more trouble swallowing today. There will come a time where it will be very difficult to swallow and I’ll need to have a PEG tube surgically placed in my stomach and be fed that way. I’m just hoping that time will be later than sooner. If we can find a way to get all my nutrients into ice cream without affecting the flavour my swallowing problem will be solved lol. I’m feeling a little numbness in my lower left leg and foot tonight. The sensation is similar to when your arm, leg whatever falls “asleep” and you end up with that tingling feeling. I haven’t sat on my leg or foot for that matter… just chalking it up to the yard work today.

More insanity in London tonight… WTF?  Prayers go out to the victims, their families and everyone else that have been affected by this heinous attack. As if this cowardly act wasn’t tragic enough, there were a number of political missteps and tripping over his loose tongue on the part of POTUS… again. I could rant for a long time… many do, as he provides enough fodder daily to keep people talking, regardless of what side of the fence you’re on. The American people wanted, needed and deserved change… I don’t think that this is what they had in mind.

What an embarrassment he is to the glorious nation of the United States of America. Many of the world leaders are shaking their collective heads in disbelief at the world’s foremost superpower except Putin and his mob… they’re laughing. No doubt pleased at the success of the age-old practice of divide and conquer they employed through Russia’s cyber intrusions during the 2016 Presidential elections. POTUS has used the same practice in his personal business dealings as a “private” citizen, within his own administration and the American people itself. Democracy is not perfect, but it works that’s why there is a system of checks and balances. America’s democracy is always being tested, but this time is different and the dictator Putin and POTUS himself, should never underestimate American resolve.

I’ve been ruminating for quite some time about writing my thoughts and voicing concerns over a number of issues that I find disturbing as I sometimes mention here in my journal… like the aforementioned ramblings. I actually did publish a piece a while ago on the retail apocalypse which may have confused some with this blog… The PSP Chronicles, as it began sounding like my journal but quickly veered off in another direction. I’ll try not to make that mistake again, but with a scrambled mind sometimes it’s easy to get off topic. Doesn’t matter right now anyways, as I know a DGAD moment will come by for a coffee and end up staying for dinner lol.

So, I’ve been having sleep disturbances for the last few weeks now… last night was no exception. My sleep is shallow and I wake up after about an hour in. I do have sleep medication, but I’m reluctant to use it too often… it can be addictive.  Woke up at 1:30 am I got up and took something to help me sleep which did help… another hour later.

I finished some yard work a little earlier than I planned this evening. I know that Trish doesn’t think so, but I do listen to my body… I just don’t hear what it’s saying lol. It’s too easy to go from a 6 to a 7 on the scale when I go a little further than I should and my concern is that number will not go down. This would be a good time for me to do some journaling, but as I sit here at my lap top I just can’t find the motivation. I’m looking down at River as he is stretched out on the floor, doesn’t look like he’s motivated to do anything either. I’ll follow his lead tonight, so I guess that’s a big Nahhhh to catching up the journal. I think that I’ll just chill and have a drink with my girlfriend… Tequila Rose.

My stiffness has crept up to a 7 on the scale over the last couple of days. I’ve just about completed all the things I wanted to do in the backyard, with most of the grunt work done I’ll be able to just sit in the sanctuary and enjoy His and my creations. What good timing too, the lilies are just beginning to bloom… nice.

It’s funny how the Wheel spins, on the days where the physical symptoms of PSP are “tolerable”, the “emotional” symptoms become much more pronounced. There are not too many things I get excited about or interested in anymore, on these days I feel like I’m just going along for the ride. I don’t enjoy this feeling… it’s not me but then again much about me today is not the same, funny how PSP has that effect one’s self.

Trish and I attended a birthday party today for our grandniece Naiya who is turning three. My older sister Judy and my nieces were all there. It was nice to see them all again and it’s always a bonus when you get to see the excitement and smiles on the children’s faces. We were going to stop by the DQ on the way home, neither of us were paying attention well at least I wasn’t as we drove past it. She offered to turn around and I told her not to bother… what was I thinking? We always have ice cream on hand at home, so it was not as if I had to do without.

I learned today that my dear friend Mike who also has PSP now has 24/7 care. From time to time you’ll read a line or a paragraph that I’ve written and have a little fun with it. PSP is no joke and I make no light of that. Like many other diseases, PSP eventually robs you of your independence and your ability to do the most basic of tasks, including personal hygiene, walking, eating… speaking and so on, eventually it will take your life. It’s very difficult to resign yourself to the fact that you’ll have to rely on others to help you manage, I have limited help myself and I know that will change. The thought of it is distressing and very sobering… humour is my way of coping with it.

I got up this morning (only got up once through the night… wow) with my stiffness at a 6 on the scale. After breakfast I started my chores as usual and once that was done, I went downstairs to do my exercises. A few minutes into my warm ups I began to experience terrible back spasms, the pain and the stiffness quickly moved me from a 6 up to an 8. I ended up scaling back some of my stretching routines so not to aggravate the issue any further. The spasms remained until well after my lunch and into my nap. Most of the time I use a moist heating pad and today was no exception, only this time I cranked up the temperature to as high as I could stand it without burning myself.

I’ve been doing some journaling this morning and got up from the kitchen table to do or get something in the living room and have forgotten what it was in less than 10 steps… gone! This infuriates me, before it was kind of funny… not anymore. It didn’t end there either I forgot 3 times today that I had taken River outside and misplaced my cane… 2 hours later Trish found it outside by the garden. The spasms that I experienced yesterday in my lower back have eased but the stiffness is a 7 along with some pain.

Bobble wobbles and missteps are pretty much a daily occurrence.  I had a slight fall backwards today as I tried to sit on Willy… my walker. I misjudged where it was an ended up on my butt on the grass, no harm… no foul.  Have you ever had a bowl of tea? I’m not talking about the little bowl cups you’ll find in a Chinese or Japanese restaurant… me neither, but I almost had one tonight. If you’ve followed my blog you’ll know that Trish and I have a special tea time unto ourselves every night. Either one of us will make the tea, I plugged in the kettle tonight and got the tea bags out of the canister. Trish was going to finish up making the tea, so I went and sat down in my lift chair. I no sooner got comfortable when Trish speaks up and says “Tim… really”. I guess she didn’t want her tea in cereal bowl… oops. That’s what kind of day it’s been.

I think the 6ish days on the scale are behind me now. The number has crept up to a 7 since the back spasms the other day… can’t say that the Levo-Carb and Baclofen (muscle relaxant) is making a real difference, or maybe it is and this the best that I can expect. The nightly muscle flutters… at least the ones I’m aware of, have an added component of pain, the tremors remain the same.

It’s Father’s Day and Trish has brought me breakfast in bed, today its french toast and warm maple syrup. Breakfast in bed has become a tradition in our home for well over 20 years now as we recognize and celebrate Mother’s and Father’s day. When I finally made my way downstairs I started to clean up and put any dishes away.  It was during this that I tried putting the skillet away into the fridge and if that wasn’t stupid enough, I actually started moving things around to make enough room for to fit… duh!

I received an email from Mike today… I’ll get around to replying to it later when we get back home. We’re going to Pickering to visit with Sean, Julie and the grandchildren to celebrate Sean’s 35^th birthday and Father’s day, we were joined by Julie’s mom and dad, her brother Geoff and her aunt Barb. Somewhere before 1:30 pm I have to eat lunch and sneak a nap in. We enjoyed our family time it’s always special when I get to see my grandchildren. Nana and Papa now have some new pictures of Emma and Owen to add to our family collection.

It’s pretty easy to describe (while I still can) the physical manifestations of PSP as almost everyone can identify with some of the symptoms at one time or another like muscle rigidity, soreness, fatigue. Those of us with PSP can also experience balance-gait… movement disorders and swallowing issues, lack of eye movement, speech difficulty, depression, anxiety, apathy and even double incontinence.

However, dementia (mine is FTD… Frontotemporal) is quite different altogether. Who hasn’t experienced some forgetfulness at one time or another? How many of you have experienced the fear having found yourself somewhere unfamiliar with your surroundings and not knowing how you got there? How about the frustration of trying to do simple mathematics in your head, following instructions or even remembering conversations? Then there’s word retrieval and the whole slow thought process. These are but a few of challenges associated with dementia.

A few days ago, someone I trust very much asked how I was doing that morning. Had this been most anyone else, they would have received the normal “fine”, “good”, “okay”, just any response to get through the moment. And that’s because most people truly do care but just have too much going on in their own life to really understand mine. It’s just too exhausting to try to explain the nuances of my twisty mind. But not this person, I knew she not only cared but actually wanted to know, to help. So I told the truth. I was in a deep, dense fog. The world was rushing about 5 steps ahead of me and I just couldn’t keep up. It was as if when I turned my head my surroundings would follow slowly behind me. As I struggled to explain all this, the question came that has bothered me since, “How does that feel?” It took me aback for I hadn’t truly thought much about it before then. And no matter how much thought I put into it now, I couldn’t come up with a reasoned answer.

I realized I felt sluggish, drained, drunk, apathetic, bewildered, confused, crowded, alone, tingly, numb… all of these and yet, none of these. It was a jumbled mess of them all, each fighting minute to minute for dominance with none ever gaining complete control. I realized that with all that swirling around in my already flaky mind that I truly didn’t know how I felt. And I certainly couldn’t put it all into a coherent set of words to help someone who had never experienced this situation understand what it was like. I was living it and didn’t understand how could my ramblings come close to conveying all this to someone else?

As I thought about all this, I slowly began to understand that I couldn’t… at least not verbally. It takes much too long to get thoughts from my mind to words on my tongue. And often, no matter how I try, when those words come out they are not the ones I intended… that’s when I began forming this little piece of sunshine. If I really take my time and spend some real thought processes, I can eventually get something reasonably intelligible on the page. From this, I’m sure you can understand that my posts required an inordinate amount of time to put together… it’s just another part of “how it feels”.

Part of what I’m trying to convey here is when you observe your affected loved one looking so confused, unable to articulate anything you would consider informative about their world, I would ask you to consider that they probably don’t know what they’re feeling either.

So begins another week, as I suspected the back spasms I had last week were just a prelude to more rigidity… 7 on the scale is the new norm for me. This has slowed me down even further than before, I feel like a sloth with a nagging back ache or even the animated wooden figures you see on the commercial for Robaxacet lol.

I finally got around to re-reading Mike’s email and responding to it. He’s been experiencing more challenges lately and now has care 24/7. This news saddens me, although I’m not surprised… this is the progression of the disease. I can’t help but feel a little guilty that my progression has been slower than Mike’s… it just doesn’t seem fair. PSP isn’t fair, it traps the person and holds them prisoner in their shell of a body while their loved ones watch helplessly, knowing that all they can do is make you safe and comfortable as they can. Mike has a wonderful caregiver named Dorothy who loves the Lord as we do and that makes the whole caregiving ordeal more bearable. Each bit of independence we give up (this time it’s bathing) feels like a death warrant… another nail in the coffin. However, I would say this much to Mike… Luba and Dorothy too, can do a better job at washing our backs and drying our backsides than we can… some things are worth giving up lol.

I’ve been feeling quite anxious since waking from my nap which I hope will pass, as we will celebrate my granddaughter’s birthday later on in the evening… Grace is turning 8 years old. On our way over to the farm Trish and I were talking and how it seemed not all that long ago, that Chris and Liz were expecting their first child. After receiving a few hugs and a warm hello from the grand-kids I seemed to settle a bit and managed to get through the celebration. It’s just horrible how this disease at times can make you feel so apathetic… indifferent, even with your loved ones.

Today Trish and I went to an open house at The Brown Family Homestead… another one off the Bucket List. My family’s ancestral home is located in St. Catharines, On, it is the oldest house in the area and is settled amongst the many vineyards and orchards of the Niagara Escarpment Region. It’s an hour and a half drive from our home, so you just know I’m going to be a whole lot stiffer when I get out of the SUV… ugh! Willy has come along for the ride he’ll help me get around the grounds but I’ll have to go it alone with my cane once inside the house… I don’t think that they really worried about accessibility in the late 17 and early 1800’s lol.

The home was built by my 4^th great grandfather John Brown a member of the United Empire Loyalists… Butler’s Rangers, and served during the Revolutionary War. The original one and a half story home which is now the kitchen area was built in 1796 with a two-story addition added in 1802. There is some wonderful local history associated with the house, some of which has been revealed during ongoing restorations.

Over time, the home served mainly as a farm house, but was also a tavern and inn during the early 1800’s. It is now a designated heritage site, having the distinction of having both inside and outside designation which means that no architectural changes can be made to the home. The house was purchased in 2015 from the previous owner… a historian by the John Brown Heritage Foundation. This is a group of interested individuals (including some John Brown descendants) that have the expressed interest in the preservation and conservation of the home (and others of historical significance) first and foremost. Part of their mission statement reads: “by forging meaningful connections to the past, present and future”, building on its history and relevance to the area and community by “fostering awareness and inspiring appreciation for cultural heritage”.

It was a great outing, very educational for Trish and myself and the many other visitors   (learned it was at least 700) to the Homestead… including some who had lived in the home over the years. Back 2015 when the house came on the market at least one cousin and even myself had entertained the thought of buying it perhaps together and having a time share arrangement. The homestead deserved better than that and because of the John Brown Heritage Foundation it will remain a home of significant local historical importance today and beyond.

We grabbed a bit of lunch on the way home so that I could have something to eat with my meds. By the time we arrived I was more than ready for my nap. I woke up almost in tears for no apparent reason… with PSP, you don’t need one. I’m at the mercy of the Wheel and when it spins, that little ball can wreak havoc with my emotions.

Today is one of those days where I got up and left my brain in bed. I started a number of tasks and quickly moved on to another before completing the first one, which had a domino effect throughout the rest of the day. I was able to work through the stiffness… a 7, but that has come back to my bite me in the rear tonight. I’m really looking forward to my massage tomorrow… yeah-yeah and the chocolate dipped DQ cone too.

Massage tonight, had the therapist do some extra work on my lower trunk and hips… these areas haven’t been the same since the back spasms a couple of weeks ago. She could definitely notice the tightness and asked if there were any more changes that I’ve experienced since my last visit. I told her about the tremor in my arm… still the same, but the muscle flutters that I experience every night (probably because I’m resting) now have an element of pain which they didn’t before.

I didn’t get the same benefit from the massage as I did last visit… was down to a 5 on the scale and it lasted nearly four days. This night I had trouble sleeping, the Wheel thought it might be good if we played a game of pinball pain… legs, then my neck, my arms, then my knees. There was enough pain that had me moving my heating pad all night long to the affected areas and by the next morning I was a 7 and very tired.

It has been a great day weather-wise… no rain like we’ve for the few days and more in the forecast tomorrow. You just know that I’m going to try to squeeze in as much yard work as I can after my nap and after dinner… I actually got in hours’ worth of work before my PSW came. And yes, I know that I will pay for it tomorrow… actually beginning to feel it now as I sit down to journal.

I’ve just been reading some posts on a PSP site… a couple more members of the community have earned their angel wings this week. When bad things happen you have three choices, you can let it define you, let it destroy you, or let it strengthen you. I’ve always refused to let PSP define me. I don’t have much choice as the disease progresses, but this has only strengthened my resolve to remain in the battle and try to stay ahead of this foe.

Trish is attending the High School Graduation for her special needs students tonight. So in her place, Marg has offered to come and baby-sit me. It’s been extemely humid today and Marg has a set of wheels and has always offered to drive me places. That place tonight will be the DQ for a large chocolated dipped DQ dream. I bought her a cone and a Chocolate Extreme Blizzard for Matt to go, naturally I had eat some of that on the way home so it wouldn’t melt completely… what we don’t do for our kids.

My legs and thighs are “burning” this morning… the kind of sensation usually associated with nerve pain and I’m a 7/10 on the stiffness scale. Not a great way to start my day, and to add to that aggravation, I’ve opened up my home page on the computer and have learned that the Donald is up to making headlines again… no surprise there.

Let me first begin by saying that it’s not my intention to ruffle anyone’s feathers, or make divisive comments with respect to the current political climate south of the Canadian border. As an outsider looking in, I can only express a view from where I’m seated. I am I’m not American, nor am I an expert in US politics. I am not partisan to any one party, be it in Canada or the US. I am however, concerned when I see, read and hear about a President whose exploits continue to sully the reputation of one of the most venerable institutions… the Office of the President of the United States.

That egotistical sociopath otherwise known as the President has taken to Twitter again making disparaging comments about a couple of talk show hosts. His tweets are disgusting, the kind that are so low, that you could reach up and touch the bottom… well beneath the Office of the Presidency that he is supposed to represent. Dutiful Deputy White House Press Secretary Sarah Huckabee Sanders while defending his verbal assaults through his tweets, scoffed at the idea that the President should be held to a higher standard of conduct. Stating that “they knew what they were getting when they voted for Donald Trump and he won overwhelmingly”. And this makes it okay? WTF? This is so wrong in so many ways. And to think the American people and quite frankly, the free world are looking to this President and his administration for responsible leadership??? Oh well, with my mood swings that can go from 0 to anal in 3 seconds flat it should be no surprise that I’ll be laughing at myself or have forgotten all about this rant an hour from now.

Yeah… it’s finally the end of June and summer is finally here. What’s kind of crazy is I wonder where the time went and then I contradict myself by thinking it was such a long month. We had more rain than usual which kept me inside longer… I’m definitely better out than in. The backyard and the sanctuary… my happy place, are now up to my high standards lol and I’m happy with that. Still, working in “sloth-motion” has left me frustrated with the length of time it took to get them that way. I know… I know… I know. I should be thankful to this point that I was still able to do what I’ve done… and I am. I have to be hard on myself, no one else is being critical unless I get on a ladder… then I’ll never hear the end of it lol.

It’s Canada Day tomorrow. Canadians from coast to coast will be celebrating our country’s 150th birthday. I can remember quite well when it was Canada’s 100^th birthday aka Centennial year. There were plenty of celebrations then… Expo 67 and the like, and there will be plenty of celebrations tomorrow. Trish and I received a couple of Canada 150 pins from someone at our church… very thoughtful of them. As I scan the packet the pin came in I read: Canada 150, the sticker says Home Hardware…a truly Canadian success story and Made In China… go figure, I’ll speak to this in an upcoming article. I have no flags or other souvenirs… all made in China no doubt, my contribution will be the fresh red mulch I’ve recently put down against the backdrop of my white picket fence. Happy 150^th  Birthday Canada… whatever…

 

 

 

 

The PSP Chronicles

 

We travelled to London today for the last of testing for the ONDRI study. The first set of tests was scheduled for the morning was more eye-tracking. Put your chin on the stand, head back, look straight ahead into recording lens and follow the blinking light. Next, the position is the same as the first test but this time follow the top of the stick which is was just a vertical line… good luck with that… pretty much a bust. In the afternoon I had an Electromyography (EMG) which is the recording of electrical activity from nerves and muscles with positioned electrodes and a very thin disposable needle. The muscle’s electrical activity is then recorded while at rest and during movement. Problems can arise as in PSP when the signals from the brain are not received by the nerves or muscles because of missed connections due to tangled tau proteins.

In the last few months, it seems as though there hasn’t been a week that’s gone by where my extended PSP family hasn’t experienced the loss of a loved one. Death is the final release from the grips of this insidious disease. Those of you who have or are caring for a spouse or loved one, understand only too well what it’s like to grieve… as in death, for a loved one is still alive. PSP changes everything and everyone and life after that will never be the same. Kudos to all the past, present families and caregivers who remain active in supporting and educating others on this journey long after their loved ones, have passed on.

This week begins the #IceCreamForPSP awareness campaign beginning May 1^st – May 14^th. We went for dinner tonight with family … Chinese. My sister-in-law Marg is going on her first ever cruise to Europe next week. I can’t think of anyone more deserving of a nice holiday, other than Trish. We went on a family Disney cruise a few years back which she and the rest of the family really enjoyed. Me… not so much, I got sick.

Later on Trish and I went to the mall so that I could get a Mother’s Day gift and card… some surprise for Trish huh? I also had an ulterior motive… make the ice cream video that I said I would on my first YouTube video:  Two for DQ…PSP Awareness. I bought a cone from the Laura Secord store… Maple Walnut Fudge, which was really quite good. I had Trish video me as I demonstrated the proper technique on how to eat an ice cream cone lol.

Many of you know that I had a quick service restaurant in Toronto’s Eaton Centre. Among the menu items I sold… 24 different flavours of ice cream, sundaes, shakes and soft serve frozen yogurt. During my 13 years there, I can confidently say that I scooped well over a million ice cream cones and double that in soft serve frozen yogurt. I think that makes me somewhat of an authority on ice cream lol. I couldn’t begin to tell you how much ice cream and soft serve I’ve eaten. You might think I would be sick and tired of ice cream… NOPE!

Today has begun with a 6-7ish on the scale. It’s a dull, dreary day and to top it all off…it’s raining heavily. The right side of my body feels like it’s been used as a punching bag and the left side feels like it’s shaping up to be the same. Hopefully, once I get through my stretching exercises it will feel a little better, well… not so much. Luba has asked me how our dinner last night was, I told her that it was good and that I also made the ice cream video, which I would show her over my lunch. When I did, she couldn’t stop laughing, I didn’t think it was all that funny… more matter of fact.

The weekend has finally rolled around, and it’s going to be a wet one… sucks. Trish is always bothered by the rain and dampness as a result of some soft tissue injuries received in an accident several years ago. She asked me if the weather aggravates my stiffness and soreness, nah… it’s a regular thing for me. Today has started off as a 6ish… better than yesterday which began as a 6-7ish on the stiffness scale.

When the heavy rain lifted I moved the snow blower out of the garage and siphoned the remaining gas in the tank to the Jerry can, greased up the auger, checked the shear pins and fired it up to burn off any remaining gas. Next, I turned the lawn mower over on its side and sharpened the blade. All the bending isn’t helping my lower back, so I take breaks as I need to. I filled it with gas, attached the spark plug wire, primed the engine and yanked on the pull cord and wow… it started on the first pull as difficult as that was. My elation soon turned to deflation after about 30 seconds when it quit on me… ugh. I will figure the problem out but not right now, a couple of pulls on the cord has taken all my strength and energy… too bad that I don’t have the electric start option that I do with the snow blower. I can’t wait to do the pressure washer next… ugh.

Let it be known as Trish will confirm, if it’s raining and there’s no lightning I’ll be outside doing whatever yard work I can. I love moss and how it adds a natural look to most things it covers with the exception of your roof or white picket fence lol. So when my garage-capades were finished, I was intent on moving a portion of this year’s bumper crop of moss… lol that replaced the grass on the other side of my fence. The plan is to place the moss between the flag stones on the front patio, the rain makes the removal of the moss so much easier and all the dampness gives it a good start to wherever I move it. Like I said, that was the plan but once I started, I was finding plenty of areas to place the moss and not once considering how I was going to feel afterwards… ugh.

Julie and the grandkids were supposed to come down on the weekend, but those plans got changed. Marg will still be coming over for dinner, that’s a good thing because we have a large spiral cut ham and scalloped potatoes to get through. There was a time when I finish 3-4 helpings of Trish’s delicious scalloped potatoes, now I’m lucky if I can eat a quarter of that. Fortunately I can still enjoy plenty of chocolate and ice cream lol. Trish sent Marg home with some left overs to make some more room in the fridge there is still quite a bit leftover, but between that land-shark aka Jack, Trish and I we’ll probably get through it all.

Marg stayed for a while longer after dinner for tea and dessert. My dinner time meds are starting to work, so I retired to my lift chair to chill for a while… only after having some ice cream and some kind of apple cinnamon treat. I’m feeling the effects of the yard work as I knew I would, Trish too. I know what’s going to be said next about pushing myself too far. I understand and appreciate the concern, but I’m not about to stop doing things that still give me some pleasure and wait for PSP to consume me and die.

The weather has turned out to better than forecasted. When we get home from church I’ll have some lunch and go down for my nap early, which will give me some extra time outside. Speaking of church, I finished the project that I’ve been working on over the last 3 weeks and brought it to the service this morning. I have donated the piece for a silent auction that will be held at the church’s annual roast beef dinner with the proceeds going back to the church. I also managed to stand when I needed to during the service, last weekend… not so much.

I’ve had my nap with plans of going outside to do some yard work. As I was trying to get of bed with the assistance of my bed rail, I started laughing to myself. I remembered a line from the movie Forest Gump with Tom Hanks, where he says “Mama always told me that life was like a box of chocolates… you never know what you’re going to get”. Whenever I get up from lying down or sitting, I think to myself I’m like a box of Rice Krispies, each time I go to get up… I snap, crackle and pop lol.

I did get some yard work done, but at the time of this journaling, I can’t remember what it was I was doing… ugh. Anyways, I do know that it was probably more than I should… or not, any physical activity even if it’s not strenuous is very challenging and leaves me paying for it later on. I thought I’d have a hot whirlpool bath with a couple of drops of frankincense added, that serve me would well. I just have to remember to take my underwear off… oops.

For the last couple of afternoons and into the early part of the evening I’ve been straightening some fence posts that have shifted over the last couple years. This involved digging around the footings and putting some quick set concrete mix around the original footings, letting it set and then later on backfill with soil. It sounds like a lot of work and it is for me at this stage of PSP, but the footings were only a foot deep and not the usual 4 ft. and they’ve held up well for 20 years. I knelt down on an old pillow with knee pads on and proceeded to dig around the posts… standing was out of the question in fear of a backwards fall. Kneeling was so much easier, but it must have looked like a spectacle to my neighbours each time I had to get up lol.

When I went as far as my body would allow, I turned my attention to the lawn mower issue as I’m still trying to get it started. Trish drove me over to the hardware store to buy a new spark plug, which should set me back about $6-7.00. The only and correct spark plug came in a tune up kit that ended up costing me $18.00… the other parts of the kit were for a different engine than mine. So, I put in a new spark plug, cleaned the air filter, fuel filter and added fresh gas as well. I primed the engine, pulled on the cord and nothing… I walked away at that point. I’ve had this incredible head pressure building since waking from my nap, it’s enough to bring tears to my eyes… so is the lawn mower lol and yet there’s no pain.

I put everything away and came back inside to chill. I’ll go back at it again tomorrow after my nap… may have to break down and get a new lawn mower that I can’t really afford… might be easier to get a goat but the township won’t allow it lol.

Back to the lawn mower, I put in a new spark plug, cleaned the air and fuel filter put in fresh gas, crossed  my legs (yah my legs, had to pee really bad lol) gave the cord a pull and it finally started. It’s too close to dinner time to cut the grass, so I back-filled around all the posts that I had repaired. Trish has a support group meeting tonight so Luba will be here for 2 hours over my dinner to make sure I survive it and to take my meds. After I ate, I took River out to the back yard… Luba accompanied me. She was still in a gardening mode from when she left home and began to pick up leaves that had accumulated in one corner of the fence. It’s a good thing that Luba was only here for two hours or she might have done a whole yard clean up. Come to think of it I still have to clean the pond… Luba! lol.

Sleep is calling me, I answered but we got disconnected. As a matter fact, I’ve been taking that same call for the last couple of weeks and it always ends with me waiting at least an hour and a half for a return call.

I hope the morning gets better I’m 6ish on the stiffness scale. My right arm is very stiff and sore as well as my left hip. I was hand washing some of Matt’s glasses and ended up putting the bottle of dish soap in the dishwasher, I checked the usual spots where I misplace things… looked for at least an hour before I found it. Trish told me that she once found it in the fridge and said that she didn’t put it there, if not her then who?

My afternoon naps have only been an hour lately too, today was no different but I didn’t mind that as the back yard which has grass as high as 7 inches and the two front yards badly need cutting. This job use to take me just under an hour to do, but working at a sloth’s pace it now takes me two hours. I’m not complaining… happy to still be able to do it.

That said I’m seriously considering getting a self- propelled lawn mower for a fraction of the cost of a small riding lawn mower that Trish has suggested. I don’t want to go that expense as I’ve been slowly getting rid of grass in favour of more naturescaping. As I’m cutting the grass in the backyard, River would go the wood pile by the fire pit grab a stick and proudly trot away. I paused for a moment and remembered just how many sticks I had to pick up before cutting the grass, because Cooper and River raided the wood pile in search of the perfect stick and as much as I love River… I miss Cooper.

I’ve been having more sleep disturbances lately… it can be part and parcel to PSP and last night was no exception. I’m tired enough when I go to bed, but my sleep is very shallow and I wake once or twice a night. I gave some consideration to coming downstairs and stretching out in my lift chair, but Matthew is staying in the room directly below and he is up all night making his YouTube videos. That said I had a good nap this afternoon for a change… at least two hours. I woke up just a few minutes before Trish arrived home.

This past week from has been the week from hell for her. You can see it on her face, she is just drained. Trish works with special needs students at the high school level and if that weren’t challenging enough, we have Matthew who’s 22 and is autistic with a myriad of behaviors. To top it all off, there’s my oldest stepson Jack who is 35 and sometimes acts like he’s 15. Out of love and the deepest respect for my wife I will only say that Jack has had his finger on the self-destruct button for a number of years now and one day he will push it… knowingly or unwittingly.

Then, there’s me and PSP. She thinks that I’m no longer in denial because I’ve talked about the end game of this disease… death. I acknowledge and have accepted it’s a “life-limiting” or terminal disease, as some in my PSP forum have recently discussed… its’ all semantics. Either way, I made peace with that a long time ago. That doesn’t mean that I’ve resigned myself to the fact that it will probably be the death of me, but as I have said before… I may not win the war, but I will sure as hell stay in the battle.

Now with all that out of the way, it’s fair to say that Trish is struggling, she didn’t sign on for this, but it is what it is. This is definitely the “for worse” part of our wedding nuptials. Her blood pressure is on the rise again, she’s having stomach issues, not getting enough sleep and the sparkle that I love so much is gone from her eyes… if only I could bring it back.

Mother’s Day weekend is here and so is the Ayr Village Garage Sale which brings in car loads of people looking for good deals and maybe that rare find that makes its way to the Antiques Roadshow or even Canadian Pickers lol. The weather is great today and despite the usual rigidity, I’m going to get outside and do some yard work, more specifically… drain and clean the pond. Anything that I might manage to get done after that is a bonus. Luba and her husband Peter stopped by first thing and dropped off some grape hyacinths, apparently she has too many… I even managed to get them in the ground that same morning.

So, I managed to get the pond cleaned and started the pump up for another season, I’ll probably have to rearrange a few stones on the waterfall… seems like they shift every winter. It was a tedious job, but I had Willie out there to sit on as needed a long with a couple of bottles of water. I noticed how heavy and weak my tree stumps (legs) were getting, other than putting the plants that Luba brought over, that will be it for the day. The Beef Dinner fundraiser for the church is tonight… I’m not up to going. I donated a relief carving to be placed in a silent auction with proceeds going to the church.

Its Mother’s Day morning, I’ve had a long-standing tradition of making Trish breakfast and bringing it to her in bed on this occasion. I was making my way upstairs actually I was walking down the hallway at my usual sloth’s pace when I met her at the bottom of the stairs… so much for the surprise. And to think of the effort it took for me to remember Mother’s day, let alone breakfast… oh well. My legs so far this morning have been very heavy and weak I’ll need to use Willie for church today. After church we stopped off at Timmie’s for a coffee and a bit of lunch, I’ll be ready for my nap soon. Wow, finally got the 2 hour nap today that has eluded me for quite some time now.

I had a massage booked this evening at 6:00 pm afterwards I went to go to the mall to exchange the Mother’s Day gift I had bought Trish and to find a gift for Naiya my grandniece, who is turning 3. Every once in a while my sister will post a video of Naiya on Facebook which is always brings a smile (at least the best one I can manage) to my face. Trish’s dear friend Suzie bought me an LED high-tech standing cane… I’ll need to read up more on the features. One thing is for certain, there’ll be no more excuses for missing the toilet if I have to pee through the night lol.  Another certainty, I’m going to get a chocolate dipped DQ Dream tonight. If by some very slim chance I don’t make it to the DQ (never), then I’ll stop at the one on the way home… I have all my bases covered lol.

I’m feeling about a 5 on the scale the day after massage, but I have more soreness though… we’ll see how the day turns out. The OT came by today to review my file and home strategies, she is recommending that I get another walker… one for inside and one for outside the house. There will come a time where I’ll be spending much of my time downstairs. We would like to renovate the cottage (my man cave) to include a fully accessible washroom/shower, small kitchenette, a bedroom and exercise area as well. There should be no problem for township approval, there are three large windows and a walkout for an emergency escape if need be.

I read a response today from someone on the PSP forum who enjoys reading my blog and likes my tenacity for fighting PSP and early onset dementia… FTD. I don’t know that I have a brilliant mind though lol, but it does make me wonder sometimes as to how people perceive others with dementia. While I agree that patients who have advanced dementias be it Alzheimer’s, Lewy Body, FTD, vascular or CTE obviously require a great deal of care, as much of the ability to perform their most basic functions have vacated the brain. However, there are many people with brilliant minds out there struggling with dementia, and all though it may take a great deal longer and more difficult to perform some of the most basic tasks, they are still able and do make meaningful contributions.

From the Health Unlocked Board:

“What I’m about to write is probably no surprise to anyone walking this dark path and still posting on boards such as this. I would, however, like those who walk beside us to know what it takes for those of us with a scrambled mind, at least this scrambled mind, to complete a reasoned, sensible post.

I know I can tend toward the wordy side but I’ve tamed a great deal, just ask my daughter- in- law. Often these posts, which seem wordy but aren’t really that long, have taken me the better part of a day to complete. That’s quite a change for me. Not that long ago, 15 minutes would have killed my longest, most complex post. Even this post is taking the better part of the morning. Why so long now? Often I will have spent a period of time writing what I thought was a well-reasoned, properly structured response to or opinion about something only to realize what I have actually put on the screen is unintelligible. It will look as though I’ve just sat there holding down one key then holding down another for line after line. This will shock my consciousness. To my mind and body, I just completed a comprehensive, coherent statement only to reread it and find a jumbled mess. Now I must erase the entire thing and try to recreate it. I often can’t remember why I went to the bathroom so putting a complex idea back together is often next to impossible.

As an example, I was responding to a question in an email with a friend a couple of nights ago when I started to hit “send”. I thought maybe I should review for any grammatical errors, omissions, etc… I had spent 10-15 minutes crafting this response. Again, it was what I thought to be a complete, intelligent response. The following couple of lines are an example of what I found:

dddddddfgh jjnkygkjn. Kgkhv.mhgk. Little kjygutd jhrclkgjtfkjgvjkf jar djhc kjyfjgrd khgckrs htdkhtfged khgfkhtfkhgfjhrdjhtfkfkhgftfffffffffffoutf had kuyfkutfg ktkhtfflflfyuuyyjlygfjkyfkgj. My responses are not as extreme as the above example, but none the less, they often look and sound like gibberish.

If you can make sense out of that you’re a better person than I. Rather than spend the rest of the evening trying to recreate my response, I just stopped for the evening. This is the frustration we often face. However, and perhaps sadly for you, this is not going to stop me from subjecting you to my ramblings. It may take me a day or two to get them out in some form that makes at least a little sense but I think it’s worth it. There is so little written from the patient’s perspective that I hope this will be valuable information to someone and make both their life and that of the person they care for just a little bit easier”.

I’m feeling kind of blah today. I haven’t been in this place for a while now since the increase in meds. I can feel the Wheel spinning… hope the ball has landed in the “just visiting” slot lol. I’m guessing about a 5-ish as rigidity goes, this is one full day longer of temporary improvement than my last massage appointment. The weather has been beautiful for the last couple of days and I’ve seized every opportunity to get outside… have even considered giving up a nap to make the most of each day.

Every time I visit the doctor the nurse goes through a quick questionnaire… almost most like a triage, but this is only to determine my mental state a couple of weeks before my appointment and at the present time. One of the questions asked: Are you hopeful about the future… or words to that effect. Really???? I don’t make plans for the future, with PSP you don’t know what tomorrow will bring. Hell, with the Brain Game Roulette Wheel always spinning I don’t even know what today will bring lol.

It’s just as hard on the families of loved ones with PSP, how do they plan things when they don’t even know what problems will come up today… let alone tomorrow. Plans or dreams that Trish and I made or considered together have all been dashed. When I worked, I always had a vacation, a DIY project and ultimately retirement on my mind… something to work and plan towards. My job now is to stay alive and to stay ahead of the PSP until research and medicine can find a treatment that could eventually lead to a cure, and perhaps even a vaccine.

I did some yard work after my nap today… more like screwing around with the retractable hose caddy for the first hour or so. This has only aggravated my stiffness, I’m back up to a 6, but prior to this I had been a 5 for most of the week after my massage… that was excellent for me.

With the hose issue out-of-the-way, I went out back to begin pulling out the seemingly overabundance of seedlings that are growing everywhere… especially the mulched areas. A quick glance at my phone and I see that it’s time to feed River. If Cooper was still with us he would have let me know by now with a loud woof which could be heard outside, that it was dinnertime… eating is bag deal for labs.

I’ve started on another DIY project, only it’s not really a project… more like a plumbing repair, which means I have to open up the wall in Jack’s room to get to the problem behind the tub/shower. My legs have been a little unstable the last few days, so Willie will be leading the way to church this morning. I feel a little awkward as I walk into the sanctuary, here I am 60 years old and much of the congregation is at least 75 and beyond. One member of our congregation is 95 years old she and many of the others get around better than I do… oh well, it is what it is.

There is tragic news out of Manchester, UK today… suicide bomber at a Ariana Grande concert… 22 dead… one as young as 8, scores more injured, 29 of them critical. My thoughts and prayers go out to the injured and the grieving families. That said… WTF is wrong with this world today?

It will be recorded in the last chapter of the Book of Man’s Crimes, that his most grievous sin was that of Intolerance. The bitterest intolerance grows out of religious, racial and economical differences of opinion.  How long O God, until we poor mortals will understand the folly of trying to destroy one another because we are of different religious beliefs and racial tendencies?????????????

Luba is here today even though it is a holiday Monday as Trish has made plans to go for lunch with one of her co-workers. I still need a part for the faucet, you read the outside of the packaging and it tells what tools you need and the skill level required, but nowhere is it mentioned until you open up the box that you require the item that the manufacturer does not supply… funny how that works. The hardware store is closed but it’s probably just as well, the stiffness is now a 6-7. So what do I do, I go out back to the sanctuary and start to level some patio stones lol.

I’ve been a bit of a scatter-brain lately. I started a plumbing repair and have tools and pipe fittings lying all around me. It looks like chaos… just like my brain this is the new Tim the old Tim would never be so disorganized. This project can’t be done soon enough, when you open up a wall you always to get more problems than you started with. Don’t get me wrong, I’m grateful that I’m still able to do some things while most others with PSP cannot. Some of this chaos can be attributed to the inordinate amount of time it takes me to complete things, and the frustration of knowing that I’m losing my ability to do some of the handyman jobs around our house.

Another two more members of the PSP group have recently passed away. It’s difficult to read the posts of family/caregivers who have given so much of themselves looking after a loved one with PSP. While their loved ones are now free from this insidious disease, the lives of these caregivers will be forever changed. I realize that this may very well be me some day and I’ve have accepted that, I’m just not going to dwell on it… too much yard work to do lol.

Trish and I travelled to London this afternoon for my quarterly Botox injections… it’s kind of sad when you begin to look forward to them. We made a slight detour on the way home and stopped by Marg’s house and check on things, she is away on a cruise to the UK, and a first ever for her… nice.

Matthew is going to his former high school today for an event… a car show that is open to everyone. So much preparation involved which Trish mostly handled… reminded me of what we went through each morning before school. Luba even commented on how much was involved in getting Matt out the door and on time and wondered how we ever managed. I’m feeling very anxious about this outing, worrying and wondering if he’ll have a behavior or not. A big thank you goes out to my step-son Chris and Miss A, Matt’s former EA who helped make this happen… all went well.

My lawn mower finally gave up the ghost and ended up buying a new one that I really can’t afford… still think a goat is a great idea lol. I spent most of the day in the back yard trimming whatever grass I couldn’t reach with the lawn mower and coming up with some new naturescaping ideas. My body is telling me that I’ve done enough for one day, but my mind is telling me something different. I’ve been losing quite a bit of water in the pond lately which means I’ll have to find the source of the problem and that always ends up as new project lol. I have mixed feelings about all this, admittedly it has become more difficult to complete the yard work because of the PSP and that is hard to accept.

The world-wide PSP community has lost two more members this week, that’s four in the last two weeks… not liking these statistics. Four PSP warriors who are now free from the clutches of this cruel disease and just maybe… answered prayers for some families who have been grieving their loved ones while they were still alive aka unconventional grief.

I consider myself to be fortunate enough to have had a slower start with PSP, but that is changing. I’m still mobile with the use of my walker or cane for a short distance… I can even walk on my own for a bit. It’s all too easy for me to forget though, that the mobility aides are all about fall prevention… not so much for assistance, as I walk into the door jamb followed by yet another bobble wobble.

I think that I have spent too much time lately thinking about the end game, so it should come as no surprise why I like to keep active physically and mentally. I talked to Mike this morning… really missing my dear friend. . His dad had come down for the Memorial Day weekend and routered the edge of the table top that Mike’s been working on for a while. Like me, he has to wait for a good day before starting or completing a project. Mike is struggling more and more lately… especially with his speech. We discussed some alternative methods for journaling such as voice directed technology, which is only good as long as you have a voice the program can recognize… we’re both losing ours.

Windows 10 has a program under accessibility that is similar to texting, the more you use it, the more predictive text there is. It could get to the point where all you have to do is point and click on the word… I’m going to dabble into a little further. We both thought some kind of telepathic technology that would convert your thoughts to type would be great and to a computer generated words… even better. I’m almost certain there is some kind of technology out there. Steven Hawking uses some assisted device to communicate I’ll look into it further… just need to remember to record it on my phone lol.

The end of May is here with the promise of a good summer around the corner. The spring has been different with seasonal and below seasonal temperatures with plenty of rain which has put me further behind than previous years with the yard work. I’m so looking forward to sitting in my sanctuary… my happy place.

Today has started off as 6-7ish on the stiffness scale… probably because of the yard work and a little more confusion than normal. No doubt, that some of you will hear from Trish that I was outside in a thunderstorm working away. When the winds, hail, lightning and thunder began I did come into the house the first time. After a short while later after all had stopped or so I thought, I went back outside and that’s the time she arrived home and took me to task over it… my bad.

The confusion began last night as I was getting ready for bed. I took the reservoir out of my CPAP machine like always to fill it. I went to turn the machine on, only to discover that there was no water in it. Fortunately, this time I was able retrace my steps and found that I had put the filled reservoir back with the distilled water. When getting my breakfast I went to the utensil drawer to get a knife, only to discover I already had one. I put the knife back, grabbed a fork… same thing. On my third trip to drawer I finally got a spoon, which is I wanted in the first place…duh. I need to give myself a serious shake and focus… it’s too early in the day for this.

The earlier confusion is gone, but since waking from my nap I’ve feeling a little down. I’ve had a convergence of thoughts today… Mike’s worsening condition, frustration with being behind in my yard work (not really a terrible problem to have… I know), Mike, thinking about some neighbour kid who has been blowing on a trombone for the last couple of days and where I would like to shove that thing…, Mike. I feel guilty that my PSP has progressed more slowly than his… and others.

*Trying to post this blog tonight… it’s like I’ve taken a “stupid” pill or even CRS…can’t remember shit. I’m glad this month is over.

The PSP Chronicles

 

The PSP Chronicles April 2017

 

I woke up this morning… the first day of April (as I now know) somewhat confused.  I’m experiencing a little bit of brain fog, I know that I went to sleep last night in my own bed but I woke up in the spare room where I nap. My right eye has just opened and I realized this PSP thing is all real… no prank no joke lol. I’ve been a steady 6 on the scale, and the pain that I’ve felt for the last few days is still here… like a bad house guest lol.

We’ve got some packing to do as Trish and I will be meeting up with Mike and Pam today in Buffalo. Marg is coming over and staying the night just to keep an eye on Matthew. We’ve done our best to have everything prepared ahead for him… we’re only going for one night. It’s a beautiful spring day which makes the 2 hour drive to Buffalo that much more enjoyable and the wait at the border wasn’t that long either… bonus!

We arrived at the hotel just shortly after our check-in time for 3:00 pm and took advantage of the valet parking. There was only a $5.00 difference between that and the parking across the street for the hotel… a lot easier for me with Willie the walker and Trish with the luggage. We expected Mike and Pam to be in their room already, but instead were greeted by Pam. I hope I didn’t come across a rude but I made a B-line straight for Mike who standing against the lobby wall. Holding back my tears of joy, I greeted Mike with a huge bear hug which seemed to last forever. As I introduced Mike and Pam to Trish I noticed that Mike had a new walker… the same as my Willie. If you’ve read previous blog posts, you’ll know that I call Mike the Unique(one)1 and I’m Unique(2) too, and now I have Willy 1 and he has Willy(2) too.

Mike and I made our way over to center of the lobby where a huge globe stood. We spent a few minutes there while Pam was waiting for their room which wasn’t quite ready yet. At one point Mike puts his fingers on the globe and said “we have the world at our finger tips”… nice. It just so “happuned” that I saw an opportunity and put my fingers on the top of the globe (well… as high I could reach) and shouted as best as I could “I’m on top of the world”, that’s how I felt anyways.

We gathered up the luggage and went to our room accompanied by Mike and Pam, who were still waiting for their room to be readied. I don’t think we were there very long when someone from the front desk delivered their room key. Mike needed a bit of a rest and a shower before we would meet later downstairs in the lobby and then go for dinner. I don’t remember at the moment if I had a nap or not… guess it doesn’t really matter anyway.

The four of us sat down for dinner at the hotel restaurant that seemed like it was an extension of the lobby. Well planned and thought out allowing good views of some of Buffalo’s older and beautiful architecture from just about anywhere you sat and… the food was great too. Since Buffalo is undisputed chicken wing capital of the world, my choice for dinner was obvious. Trish worried that the wings might be too spicy for her liking so the waitress suggested Parmesan Garlic wings instead… Trish loved it.

There was a bit of catching up to do for Mike and I, swapping stories and just sharing some fellowship overall with our dear wives. Over dinner, Pam and I got on to the subject of her delicious French toast when Trish asked “did he have it with ketchup”… the truthful answer was no not that time anyways. Mike and Pam looked at me strangely and asked “ketchup”? Trish responded before I could speak and said “yeah… ketchup, he puts that stuff on almost everything”, the conversation is beginning to sound like a commercial for Frank’s Red Hot Sauce lol. Mike speaks up and said “I can see that on fries… but on french toast”? So, while we were on the subject of fries, I asked Mike if he had ever fries with Mayo, his short and only answer was no! Pam spoke up and volunteered that Mike was no fan of Mayo, we’ll come back to this topic later on.

It was during dessert time that a comment was made about me and ice cream… more specifically a chocolate dipped Dairy Queen (DQ) cone, all while I’m having a warm fresh-baked chocolate chip cookie with a scoop of french vanilla ice cream… mmm. Mike has asked me before, what’s with you and the DQ? Trish rolls her eyes and says that each time we go by the DQ that I have a chocolate dip cone.

First things first, you can never have too much ice cream… or chocolate for that matter. Secondly there is an art to eating a chocolate dipped DQ, I call it deconstructing a DQ cone… sort of like reverse engineering. And just like becoming a master in any art form, it requires dedication and a great deal of practise which can only be done through eating a chocolate dipped cone(s)… the bigger the better. Now, back to the cone deconstruction… Pam and Mike are laughing at this point.

You must start out at the top… the curl, and eat away the hardened chocolate shell and lick away the ice cream without any dripping. This process is continued all the way down the cone until you get to the rim… remember no dripping allowed. Unlike a hard packed or scooped cone (which requires a different technique), the DQ dream settles all the way to the bottom of the cone which must be evenly eaten away until is completely finished… again no dripping allowed. I think you can appreciate just how much practise and dedication is involved in mastering DQ deconstruction (:

We spent a few hours in the restaurant enjoying conversation and stories with no one rushing us. It has been a long day for all of us… especially for Mike and I, we’re not the young bucks we used to be lol. A good rest is needed as we plan to spend a good portion the day at Niagara Falls on the Canadian side.

Mike gets up a little earlier than I do, as he requires some extra time to get ready. PSP, FTD and Parkinson’s with its essential tremors can make things a little more challenging. If you’re wondering, is it possible to have all three conditions, the answer is yes. Mike and Pam were having room service bring breakfast, while Trish and I went downstairs to the restaurant for our breakfast and would go up to their room when we were finished.

When we got to their room Mike still required extra time and some on and off help from Pam… no problem the Falls would still be there whenever we arrived. While waiting a conversation began. Now I don’t know if this was planned on the part of our wives, but they certainly jumped at the opportunity to make known their displeasure with some of the work Mike and I had and were doing around our houses. If only Mike and I could roll our eyes each time the word ladder was mentioned, it smells like a set up to me… as they plot to derail any future projects lol.

Since checkout time was 11:00 am for us, we brought our luggage down to Mike and Pam’s room and left it there until we would return from our day trip. Before we left our room earlier, Trish had gotten an address for the Falls so that she could put it in the GPS. The valet service brought our SUV around to front of the hotel which made it so much easier to load Willy 1 and Willy 2. Mike and I got seated in the back and Pam in the front with Trish, the address was put in to the GPS, and with passports in hand we were now ready to leave for Niagara Falls, Ontario Canada… a first for Mike and Pam.

The border crossing was easy with no line-ups… looks like a promising day. The weather forecast has said there would be rain, but it’s a beautiful sunny morning so far. We did have a little detour though apparently the address was wrong, so we ended up stopping for directions. I’ve made many trips to the Falls but that was travelling in the opposite direction. Looking for familiar landmarks other than the Falls themselves was almost useless, as so much of the City of Niagara Falls, On has changed since the last time Trish or I were there… but make it we did. Fortunately for us there were a few handicap parking spaces available so we didn’t need to park further away and we were thankful for that. If you’ve ever been to Niagara Falls, you’ll know that there is a mist everywhere coupled with higher winds which made the 12 °C seem more like 2°C… not a good first impression of Canada for our dear friends from the south lol.

Mike and I stopped for a photo-op in front of the tourist/information centre, but even I wanted more acclimatized to the weather wanted to get inside quickly. Mike did not think he was up for the boat tour but would take the tour below the Falls after Pam and Trish did the touristy thing… shop. Mike got a new Canada toque, I tried to sell him on the idea of on floppy eared hats with tassels as did Pam… he would have no part of it. I think that Mike and Pam were really enjoying the first part of the visit, but it was now time for lunch… and meds.

When we arrived at the restaurant which is also a part of the tourist/info centre, we were given the best seats in the house… a corner table with a spectacular view of the Falls. Since this would probably be the last meal of the day we had a larger lunch. Mike and Trish both had a prime rib beef on a bun topped with fried onions, cheese, gravy, fries and horse-radish on the side. I am not a fan of horseradish. Pam and I had a Buffalo chicken wrap, fries and mayo on the side.

Remember Mike and the mayo story from dinner the before, well this is how all played out. As we were eating I took one of my fries and dipped it in my mayo and said to Mike this is delicious and would he like one. He thought about it for a little while and said that if I tried the horseradish, he might consider a couple of fries with mayo but he needed to think about it a little more. So a little later on, I asked Mike if he would like to try fries and mayo again and he said no.  I asked him again if he was sure… positive and he responded a few moments later in that delightful southern drawl “I’ve never been more positive” which had me chuckling.

We left after lunch, but not before a few more photo ops. Mike and I were spent and a nap time was in order. After arriving at the hotel the valet allowed us to leave the SUV in the loading zone while we went up to Mike and Pam’s room to collect our luggage and say our goodbyes which is always difficult. This has been the best weekend of memory making that both Trish and I have had in a very, very long time.

Mike and Pam asked Trish to text them when we got home just to know that we made it home safely, which she did. Pam said the Mike had napped for a couple of hours… I was able to get at least an hour of sleep on the drive home. I’m guessing the trip was a little more tiring for me than I thought, the next morning I slept through my alarm and I’ve never done that.

Today began as a 6ish on the scale, in fact it was like that all weekend and I’m thankful for that. I have a number of pictures to create an album Memories with Mike that I would like to post and share on Facebook for family and friends. If you’re on my Facebook list, you’ll know that I’m not the sharpest knife in the drawer when it comes to posting and sharing pictures. All too often I make duplicate posts (and then some) because sometimes I get confused easily, and sometimes because I just don’t know what the I’m doing lol.

Epic failure on my part… its Trish’s birthday today, I honestly thought it was tomorrow. That’s the first time in 24 years that I messed up… my bad. Mike had called me from the airport, their original flight had been cancelled and they were still in Buffalo. The call begins like this: “whatever happens man remember I love you” and I begin to wonder what’s wrong. He then tells me it’s his dad’s its birthday tomorrow and he’ll be 81… I’m still clueless. I told him that it was Trish’s birthday tomorrow as well as she walks in the door and he’s laughing at me. I was unaware that she and Pam had been texting earlier and Trish mentioned that I forgot her birthday today. Mike learned of this and called me hoping that I could save grace and wish her happy birthday. So here I am on the phone with Mike when Trish walks in, I’m telling her that Mike and Pam are still in Buffalo. I’m still a dumb as a stump and oblivious to the occasion, when Trish politely reminded me that it was her birthday today… oops. Thanks Mike, I now know you were trying to throw me a life saver… you tried your best lol.

It’s a beautiful spring day, hard to believe we had 2-4 cm of snow yesterday… old man winter went down kicking and screaming right to the end. It is so nice to get out in the backyard and start some spring clean-up, there’s a lot of work to do but I’ll have to pace myself and not push too hard. Well, so much for not pushing too hard. I do know my limitations however I always have this thought in my mind that one morning I’ll wake up and I won’t be able to do much of anything, that’s what happened with loosing much of my voice. I went to bed one evening and woke up the next day only to find much of my voice was gone, very soft  almost barely audible and still is… even today.

I woke up somewhat confused this morning… Marg drove me to the lab to have more blood work for the brain study they took 6 more vials of blood. My stiffness remains a 6ish, hopefully that will change after my massage tonight. It just so happens we have to pass the Dairy Queen, Trish already knows this because apparently I’ve mentioned this already… just making sure she knows lol.

When my massage was finished, I texted Trish to let her know that she could come and pick me up. I noticed that I had a couple of messages with a 678 area code which is Georgia… so it had to be Mike. He had sent me a picture which I couldn’t download. His following text said “The only thing that would have made it more tasty… would be if you & Trish were enjoying one with me”.

I had a pretty good idea what it was Mike was enjoying and I too would be satisfying my craving for that chocolatey cool treat very soon. Since there has been some discussion on DQ, I thought it would be great idea to have Trish make a short video on how to properly deconstruct a chocolate dipped DQ cone and then send it to Mike. He had sent me a picture a little earlier but I couldn’t download it, so he sent it to Trish and sure enough just as I suspected, he had a chocolate dipped DQ in hand.

A short while after we arrived home, Mike sent me via text, a short video response to my instructional video I had sent him a little while ago. I want to post this mini-series on Facebook. Despite my efforts of creating a new folder that includes both videos to upload and even trying to copy and paste, I haven’t been successful yet. So, until I can figure this out I will quote Mike’s response verbatim, you’ll just have to imagine him speaking with his delightful and infectious southern accent… it begins like this:

“I understand the process of starting at the top, nibbling your way around. Trying not to get where it’s going to melt and leak and cause a mess everywhere. And it came to me how you were able to do that… you live in Canada, come down here in Georgia in the middle of the summer and try your technique… I bet your hands will get ice cream all over them. I figure that I would just stuff the first bit in my mouth. Carefully peel off the chocolate and eat it, then lick down the ice cream, then demolish the cone… never before it melts. It’s crazy how much discussion goes into DQ, like two guys on a sonic… we should be the two for DQ.”  All this discussion about DQ has got me thinking about a PSP fundraiser on Facebook similar to the ALS Ice Bucket Challenge that Dairy Queen International, US and Canada might consider lending their name to. Oh yea… Luba wants me to ask them how many Likes/Shares it would take for DQ to consider free chocolate dipped DQ Dreams for Mike and I for a year, similar to the idea of the 18 million re-tweets Wendy’s said it take for  a Nevada man to receive free chicken nuggets for one year.

My stiffness has been about a 5 since my massage the other night, that’s pretty good as the benefits from massage usually last a few hours to maybe one day. This has made it easier to deal with Matthew, the cable and internet has been out for 5 hours or more… then on and then off again. Matt is having internet withdrawal lol.

I have to travel to London this morning for 9:30 appointment and another appointment at 1:00 pm. There’s another round of testing for the ONDRI research study that is in partnership with the Mayo Clinic in Florida.  My first appointment is the eye tracking test. You rest your chin on a little stand, then your head is clamped in so you don’t move… almost feels like a guillotine lol. You then line up your eyes in the crosshairs on the monitor which is really a camera. Once everything is focused, your eye image then becomes a dot which moves in different directions. The idea is to follow with your eyes the direction the dot moves in… good luck with that. I have no up or down vision d which the tester quickly confirms. The whole test reminded me a bit of a cat chasing those little red laser dots… I didn’t know cats could climb that high on a wall lol.

After this test was completed, I then met with Dr. Finger who is the lead neurologist in the ONDRI study… she’s a nice enough lady, but you just know I had to ask her about her last name.  Trish is starting to squirm in her chair, no worries I kept the question appropriate enough… for me anyways lol. Dr. Finger conducted a series of movement tests and reviewed some other materials that are lost on me now. We ended up finishing in time for a scheduled meeting she had and I thought to myself wow… a doctor who was on time for my appointment… and no waiting, most doctors should be taking a page from her play book.

We then met with Sarah again to complete another lengthy questionnaire… took two hours to complete. She asked a question about sex Trish and I looked at each other and laughed. I pointed to my crotch and told her… it’s just to piss with, Sarah’s response to this… ooookay lol. After this appointment, we then had an hour for lunch before the next segment of the study… gait and balance. They took leg and calf measurements, wired me up with some sensors and then had me walk up and down on a long mat that provided a computer with feedback… think this took of 35 minutes to complete. Only one more set of eye tests to complete in the first week of May, they will be at the Ivey institute in London, then I’m all done until next year.

Chris, Liz and the grandkids came over to show off daddy’s new Ford F-150 4×4 Quad Cab truck this afternoon, unfortunately Nana was out grocery shopping when they dropped in… we’ll be seeing them on the weekend for Easter dinner. The kids didn’t want to leave right away because they saw a bunny on the front lawn and wanted find out more about it. I showed them where it nests underneath a rose-bush in the front garden they’ll probably forget it by the time the weekend rolls around.

So I put the Two for DQ video up on Facebook, I couldn’t manage to include Mike’s video response so I included it as text word for word.  I was a little surprised at how many views it had. My niece Nicole suggested that I upload the Two for DQ video to YouTube, but I didn’t know how to do that so Nicole was going to see if she could do it for me. I thought about it some more and quickly realized that I should be asking Matthew how to it, he has his own YouTube channel.  It was kind of challenging for me, but I now have a YouTube channel of my own. The idea behind this is to raise PSP awareness as well as CBD and MSA.  In the excitement over my YouTube victory I forgot to post the links for CurePSP.org and PSPA.org.UK… oops. I might still be able to edit it… with Matt’s help of course.

We had our dinner on the Saturday before Easter at our house. Marg, Chris, Liz and the grand kids as well as David were all here, for a total of 11 people. It was busy enough for me but I managed to get through it… I’m always very tired after these visits as much as I enjoy them in small doses lol.

Easter morning… the holiest day in the Christian calendar. Christ has risen. We worship today to celebrate His resurrection. However, we cannot forget that there is no celebration for many around the world regardless of their beliefs. There is political change, armed conflict, oppression and blatant violations of the most basic of human rights and on and on. People are filled with doubt, doubt leads to fear, fear to anxiety, and anxiety to despair. There is hope, but it begins with Faith.

The Easter Bunny brought me a new iPod Nano my older one has been giving me some trouble lately. Music has been proven to be very therapeutic for those who suffer with dementia… suffice it to say my iPod is working overtime. Problems arose when I tried to sync the new one to my iTunes account following instructions are not that easy for me anymore, even though I have done this before. I purchased a few more songs… easy enough, but I can’t sync them to my iPod Shuffle which is on loan to me from local chapter of the Alzheimer’s Society.

The morning and the week have started off with some confusion… stiffness in the right leg is about a 7 but 6ish overall. I watched another beautiful sunrise this morning it takes my mind off the PSP and makes all crap more bearable. I had much more to say on this but I forgot to save my work and I can’t remember what it was even though it was just a few hours ago… duh! Back to the sunrise… sunsets too and all the beauty that comes to us through nature, it speaks to our souls like few things do. We needn’t all be terminally ill to pause and appreciate the Creator’s awesome work, that we call our world. Learn to see the beauty in everything and remember that we have a responsibility as stewards to maintain all that He has created.

Trish was out trying to make a quick eavestrough repair later in the evening after walking River, it’s been overflowing due to a blockage and the weather person (politically correct lol) is calling for rain tomorrow. Trish wanted to get it done before I decided to do it myself, I told her about the problem earlier and I promised her that I would not go up on a ladder to fix it. It was just a quick fix I’ll get another elbow and some more sheet metal screws and talk her through it. She is a very determined woman… a quality that I have always loved about her, but sometimes I cringe sometimes when I see how she fixes things. There is always a better way and the right tool for the job… enough said.

We came back in and were planning on having a cup of tea. Trish was sitting at the kitchen island and I was standing by the end of it talking about the eavestrough quick fix. Trish then said to me “I love you” and in turn I told her that I loved her too. We tell each other this everyday but what happened next was completely spontaneous on my part, I blurted out “this sucks, I never saw this coming” referring to the PSP. In hindsight we now know I was presenting symptoms of PSP back a few years ago before my diagnosis as others with the disease will tell you the same.

She added that I had been in denial for a while at first and I know that, but I’ve gone through the 5 steps. It’s not that we don’t talk about the PSP, because we do. I have just never made my feelings really known. I don’t think this will be the fairy tale ending that I was hoping for when Trish and I began our life together 24 years ago and that really saddens me. You can read about my physical challenges, personality and mood swings etc.… I put it out there for everyone to read and that includes Trish. She often says that if she wants to know something, she reads my journal. I know that it’s very hard on her she’s had and continues to have more than her fair share of stress and I continue to pray for her every day.

I have never truly lingered upon my own mortality although I must admit it has given me pause on more than one occasion. I’ve made my peace with God long ago and I am comfortable with that however, like most, I am in no hurry to go. In fact, putting off the inevitable is just fine by me. Yet, even with that peace there is some fear, of what I do not really know but it is there. If pressed, I would probably say that it has more to do with my family and their future without me. But what I’m finding as my PSP and dementia progresses is that I have a type of indifference to my own death. I know it is coming sooner than later but, at least for now, I don’t dread it. I’m not depressed about it, I just recognize it as fact and there it is, so be it. Perhaps I feel this way because somewhere in my mind I think I won’t really know what’s happening by then anyway.

I busted out Willie after dinner tonight and went for a walk with Trish and River. I won’t lie it’s very exhausting for me. That said… it’s so wonderful to get outside when you’ve been cooped up all winter long. I’ve already started the yard clean up, at my sloth’s pace I might have it done by the fall and will have to start all over again lol. At the moment, I need to get started on another carving project to be sold in a silent auction with the proceeds donated to our church.

I’m sitting in front of the keyboard right now trying to put some thoughts into words and it seems like an arduous effort… both processes are slow. Matt is here with me and he is talking on all 8 cylinders… not making it any easier to write. Somehow I’m able to discern something about editing a video… turns out it hadn’t completely uploaded to YouTube and he’s obviously miffed. I understand his frustration yesterday I spent some time journaling in the morning and forgot to save my work… duh! You just have to know that I couldn’t remember what it was writing about…ugh.

I try not to spend a lot of time dwelling on the PSP, even when I’m chilling I’m either watching a little TV or listening to music. Everyone has probably heard the expression “my mind was playing tricks on me”. My mind tricks are so good that they could headline a Vegas show or make a great skit for Saturday Night Live lol. What kind of tricks you ask? Sorry folks, I’m just going to leave you hanging with this one.

Today I was thinking about work, it seems like a distant memory now. There are a few things I remember and more that I don’t. Then I think how people are busy making plans for the future, vacation, major purchases etc. The extent of my future plans involve leaving Trish and Matt in good shape financially, what kind of funeral do I want, the music selection… the whole send-off lol. I want people to remember me as I was, not as the person I will become.

I woke up today very tired again, for the last two nights it has taken me well over an hour and a half to fall asleep. My stiffness this morning rates a 7 on my right side, from my neck all the way down to my foot. The left side is a 6 and even though that is just one number off, it is a markedly difference. I have a great shiatsu neck massager that Trish bought for me last Christmas… it’s been working overtime today.

I was sitting at the kitchen table this morning in prayer. My eyes although closed, felt like they were swooshing from side to side… strange feeling. I’ve experienced this sensation before, but at that time it felt like it was my whole brain moving. Just then, I heard the call of my red feathered angel and looked up to see him sitting on the deck. When he flew off, I continued with my prayers and then thanked God for His reassurance. The sunrise is just beginning and as I watch it, I’m reminded that even though every day may not be good, there is good in every day. I will always be thankful for each new day dawning, regardless of how the rest of the day turns out.

Jacob’s birthday party is this afternoon… he turned 4 years old this week. Liz always does a theme based occasion and today it was Scooby Do. Large Scooby Do balloon, Scooby snacks… yes Scooby snacks, I always wondered what they tasted like and now I know… graham wafers lol. Rice Krispies treats in the shape of a bone… 4’ long subs and so on. I gave my phone to Grace and let her take the pictures… it’s too much work for me. Trish and I looked at each other and laughed, one of his birthday gifts… a T-shirt had a picture of a sloth on it… remind you of anyone lol. I’m going to have to get me one… Jacob and I can be twins.

I’m having some very intense head pressure tonight, it’s been building since after my nap. I thought when I went out to the backyard to do a little yard work it might pass… not so much. I’m going stop right here, I’m making so many spelling and grammatical errors that the spell and grammar check can’t keep up.

I’ve been fortunate enough to have had a few good days that have allowed me to get outside and complete some more yard work. I wouldn’t be completely honest if I said that I haven’t noticed how much the PSP has progressed over the year before. I have a very simple tool to measure this… how much I get done and how long it takes me. Sometimes it bothers me that everything takes so bloody long to do. Then I pause and think to myself, at least I can still do it… for now and I’m grateful for that. Things can and have changed literally overnight as was the case with my voice, some days it’s barely audible but I squeak by… sorry, couldn’t resist the pun lol.

I returned to doing some yard work after dinner tonight, in fact I thought I could multi-task. There’s a project that I’ve been working on to be placed in a silent auction with the proceeds going to our church. I’ve painted the carved portion of the piece and taped it over so I could put a coat of spray paint on it. As I was doing this my right hand decided it was going clamp shut with my finger on the spray nozzle, emptying about a quarter of the contents of the spray can. Being more concerned about getting my hand and finger released, I didn’t realize that I was still spraying the piece… duh! Suffice it to say, there’ll be more sanding to do once the paint is dry… ugh.

I’ve been experiencing more stiffness 7ish and some pain in my lower back, hips, knees, neck and arms for good measure. I think that some unknown force has rigged the Wheel in favour of the pinball game effect. The good news for now is that exercising… especially the stretching does lower it to a more manageable 6.

It’s now the last weekend in April this month went by fast. I’m not usually aware of the dates nor am I interested except for family occasions and you’ve already read that I screwed up Trish’s birthday. My plan this morning is to do some more yard work, come in for lunch and then nap. It’s our granddaughter Grace’s first communion later today at 4:00 pm. It will be followed with reservations for dinner and then back to Chris and Liz’s house for further celebration… gift opening and cake. The event will be held at a church just down the road, so we’re not going to be rushed and have plenty of time to make all the necessary preparations for Matthew.

When we arrived the church parking lot was full, as well as the adjacent funeral home’s lot. Trish circled around looking for what I call “executive Parking” aka Disabled Parking and found a spot right by the front doors to the church… bonus. I mused to myself, sort of reminded me of a Seinfeld episode when Kramer was driving around the parkade of a shopping mall looking for the closest spot lol.

My legs that often feel like tree stumps began giving out on me during the mass… 8+ on the scale, I actually had to remain seated on two occasions and struggled the other times. There was no way that I was going to make it up for communion and even if I could, my sloth mode would probably add another 10 minutes to the service. Judging by the looks on the faces of some in the sanctuary who were having smart phone withdrawal or afraid of being struck by a bolt of lightning, it would have meant prolonging their torture even further lol.

After the First Communion, our family group of 15 went to a restaurant in Kitchener called Bourealis for dinner. Judging by the number of patrons it’s a very popular place to dine out and the food is good, but be prepared to drop some serious coin… $17.00 + for a house burger. I was beginning to get a little overwhelmed with the large number of patrons and the noise, so we left for Chris and Liz’s house right after the dinner. I managed to keep it together for the time Grace needed to open the gifts, but I had to bail after that. This has been by far the worst PSP day overall I’ve had yet. I know that not every day is good, but there is good in every day, and to share in the celebration of Grace’s first communion… well, that’s just better than good.

We didn’t make it to our regular church service this morning. I didn’t have the wherewithal to make it through the service… yesterday took a lot out of me. In fact, I’m still in my PJs and don’t plan on getting dressed at all today. I think that I’m beginning a new chapter in the book of PSP… I’d better hone my reading skills.

 

 

 

The PSP Chronicles

The PSP Chronicles March 2017

 

Well, March has come in like a lion… high winds and heavy rain that changed to flurries overnight with a 20° drop in the temperature too. While my PSP hasn’t been roaring like a lion, it hasn’t been whimpering like a lamb either. This morning I had two excruciating lower back spasms (8 on the scale) in the same area just a few minutes apart. They have since passed, but there is a lingering soreness in the same area and my knees and legs won’t cooperate with each other. I haven’t had any falls lately… plenty of bobble wobbles. Trish calls me a wall-hugger, there’s no real way to hug a wall but I do use the chair rail and furniture to my advantage.

There is a special kind of connection with others who have, and experience our pain emotionally, physically and spiritually. Mike and I have that special kind of something and I just know that the Lord has a part in this. I often talk about the physical aspects of PSP and do make mention of the emotional experience of PSP from time to time. This is sometimes more difficult than the rigidity, soreness, dystonia, balance issues… all of the physical baggage that PSP carries along with it.

What a wonderful wife I have. Trish is such a selfless person… sometimes to a fault. I’ve seen on more than one occasion where this selflessness has been exploited by friends and yes… even family. Still, I’m a very lucky man to have her by my side during this difficult journey. She is a beautiful lady, with a kind and gentle heart. On March 12^th we will celebrate our 23^rd wedding anniversary with each celebration now becoming more important than the other… never knowing if this will be the last.  One thing is for certain, if I had to, I would marry her all over again… bonus, she can still fit into her wedding dress.

It often pains me to see how the sparkle in her eyes has left and replaced by worry, many would have collapsed by now from under the burdens that she carries. It takes a special kind of person to work with special needs students all day, and then come home to your own unique set of circumstances. I pray for her every day and when I know these burdens become too much, I ask the Lord to carry her. PSP is not easy for either of us. There are times I know, where I can be really anal. I try not to use PSP as an excuse but the truth is, it really does mess with my moods and personality… medication can only do so much.

As I read the posts from one on-line PSP forum/support group, I can’t help but wonder sometimes how the family/caregivers manage to cope with the challenging circumstances of PSP… especially in the later stages of the disease. How difficult it must be to watch a loved one’s physical and often cognitive decline to this insidious disease. Trish says it’s like grieving for someone who is still alive… not just mourning for your loved one, but also for your marriage/relationship and all the possibilities that will never be.

Sometimes I feel like a spectator in my marriage and family relationships. I see and hear all that goes on, there are times when I know that I am expected to and should participate, but really have no interest in what is going on around me. No amount of prodding and coaxing by others will change it, but yet some continue to try to that only leads to more agitation on my part. This doesn’t mean that I don’t love my wife or family… I do. On my good days I often think about Trish, our relationship and all that has changed… the same goes for my family. I am not one to make excuses, but the Tim today is not me… it is the Tim with PSP. On occasion when the Wheel decides that maybe I deserve a break, the old Tim shines through and all is good… sort of.

I awoke this morning feeling about a 7 on scale. My neck feels like… forget that, my whole right side feels like the pinball of pain is having its way with me. My left hand is trying to clench into a fist as I hold the case for my glasses to keep it from closing. Yeah the case for my glasses … my ball is downstairs. It was suggested that I have one close by, but I think to myself why… I always have two hanging around lol. I hate spaghetti (I love pasta)… the wires kind especially ear buds. Tested a pair this morning and they became entangled with my iPOD ear buds which ended with me tearing (fortunately they didn’t work) the wires apart because I became so agitated with the tangled mess.

When I finally got around to opening up my email this morning there was couple of sad posts from one of the PSP groups, two more caregivers have lost their loved ones to this cruel disease… distressing. Exercising will help keep my mind off of this sad news, but being a 7 just reminds that PSP is just what it says… progressive.

I’ve been trying to get the final episode of season 4 of The Curse of Oak Island on the streaming box this afternoon. It’s been nothing but one problem after another trying to locate a watchable stream. All the episode titles are gone… the numbers remain, but still no luck. Could it be that the island curse has transcended the airways and internet lol? You have to follow the show to appreciate the humour in it.

Last Friday Trish picked up a new video game release… Zelda, don’t ask me which one as I don’t know. What I do know is that he has been waiting for this new game in the series for five years now. It’s fair to say that he’s quite excited and I’m happy for him… it’s certainly better than some of the other games he plays. On the plus side, he’s going to bed earlier and getting up sooner so that he gets back to his game… that’s a relief.

Trish has just walked in the door and well, if she didn’t have some good news for me… nice for a change. She got an email from Mike’s wife Pam, it turns out that Mike has some things he would like to do before meeting the Lord. One thing that he would like to see is Niagara Falls, and they have planned an excursion for the first weekend in April and would like Trish and I to meet up for a day or so. Hell yeah… this time Trish can come along too it’ll be great for her to finally meet Mike and Pam. The arrangements will be left to Pam and Trish to sort out. I’m pretty jacked at this news… Mike is too, I actually had to take a sleeping pill tonight, far too excited.

The pinball pain I experienced yesterday has somewhat subsided. I have to admit that it did concern me, I don’t know why… it’s not like I don’t know what’s coming. My mood is pretty good tonight… still excited about meeting up with Mike and Pam in a few weeks. Oddly enough, my right arm is feeling kind of peculiar… weak, almost limp. I’m almost certain that I haven’t had this experience before, I hope it’s just fleeting… not liking it much.

I’ve had a good start to the morning, Trish and I saw two cardinals in the front hedge and a beautiful sunrise. You don’t have to have a terminal disease to stop, look and appreciate the Creator’s work all around you. He is alive… such is God’s amazing grace. I’m 6ish on the stiffness scale and cognitively… I’m all there, for now lol. I received an email from Pam confirming our reservation at the Regency Hotel in Buffalo, where we will all meet up, it will be a wonderful reunion for us and a chance for Trish to meet Pam and my mighty PSP warrior Mike.

River has come for a “visit” while I’ve been praying this morning. “Go visit” is a command that is taught to NSD service dogs and used when the person is having a behaviour. Many of the dogs can sense or see something is wrong and will go to visit without the command. I tell River that I’m okay my head is bowed down in prayer… thanks River just the same.

I received an email from Mike this evening he hasn’t had a very good day. Today has been the worst one he’s had on this PSP journey, but I think tonight is better for him.  I pray for him every day and would ask you to keep him your prayers. There’s been a long-standing joke between Mike and I since we started communicating nearly a year and a half ago. I made a comment in one my earliest emails saying he was unique, referring to the fact that he has a rare brain disease… he said I was unique too. Immediately my mind went to Dr. Seuss’s Thing One and Thing Two, that’s how he became Unique 1 and I… Unique 2.

I mentioned to him in an email last week when I sent him the Chronicles that I saw that his mom, his brother Matt and sister Cyndi were down for a visit to him a week or so ago. He says “I didn’t tell you because you might get jealous lol”. The funny thing Mike said was that they talked more about me than they did about Mike and hence, now I’m Unique 1.

I’ve said before that I’m not going anywhere until we… the Lagina brothers, their partners and all of us Oak Island groupies, solve the mystery surrounding the treasure of Oak Island. Ah yes, lets’ not forget the Maple Leafs  have to win another Stanley Cup as well…  guess that means I’ll still be here for a while longer lol.

Trish had talked Dr. Jenkins on Friday and mentioned a couple of really bad spasms I experienced. Dr. Jenkins has increased my daily dosage of Baclofen (muscle relaxant) in response to these episodes. For the last couple of days I’ve been 5-6 on the stiffness scale and that’s good for me however, I’ve had that intense head pressure building up in my head the last couple of evenings. A couple of “better days” are always welcomed, but I’ve learned not to be fooled into thinking… this is the worst of it? I have a massage appointment at 11:00 am today, which will free my afternoon up to begin a new project.

It is our 23^rd wedding anniversary today. Trish and I exchanged cards before we left for church this morning and we have dinner plans this evening at 6:00. The restaurant gave us a complimentary glass of sparkling wine and a couple of chocolate coated ice cream treats, being ever so gracious I (we) accepted  the gesture on their part. It was a delicious meal and we had a very nice time out. Later on in the evening I was getting ready for bed, only to discover Trish has moved back my CPAP machine back into the spare room… guess I’m not spending the night with my bride):

Today marks the beginning of world-wide Brain Awareness week and we are on the snow-covered and icy roads this morning by 8:30.  I have an appointment in London for 10:00 to begin this new research study which will last for three years. The study – Ontario Neurodegenerative Disease Research Initiative… try saying that three times fast lol. ONDRI for short, is partnered with the Ontario Brain Institute and conducting this study throughout the province. ONDRI is studying dementia and how to improve the diagnosis and treatment of neurodegenerative diseases including: Alzheimer’s disease, Parkinson’s disease, amyotrophic lateral sclerosis (ALS or Lou Gehrig’s disease), frontotemporal lobar degeneration (FTD-PSP) and vascular cognitive impairment (resulting from stroke) [sic].

Today’s visit is to complete consent forms and some structured memory testing. The results of this testing determines if I meet the criteria and move forward in the study. Well, I’m moving forward… no surprise there. Apparently I just made the acceptance threshold… don’t know if that is a good or bad thing. This visit has lasted just a couple of hours, but I’ll be back tomorrow for an even longer series of cerebral assault lol. It’s a good thing that it’s a shorter day the right side of neck is reminding me what dystonia is all about, just in case I forgot… thanks for the reminder lol.

We’re back on the road back to London, On at 8:00 this morning. I completed neuropsychology testing… lasted nearly 4 hours which included a barrage of memory tests… picture recognition, word recall and so on. Some days my brain is in a bit of fog, but after these tests that fog was so thick you could cut it with a knife lol. We’re here in London for the day, so after the testing we went for lunch at Swiss Chalet. The next appointment is at 3:30 for an hour-long “specialized” MRI at the Robart’s Research Institute which is associated with Western University. It’s bitterly cold with winds gusting up to 70 km/hr as Trish and I along with Willy try to make our way from the parkade to the institute.

The university hospital and the research institute are part of a larger complex including a heli-pad for the air ambulance. The winds whip around making the temperature feel more like -24°C  brrrrrrr. I can’t remember a time in recent years where I’ve been so bloody cold. The institute is a very secure building, Trish and I still had a ways to go before we reached the entrance. Fortunately a woman who was leaving the building saw us, took us to a door and used her swipe card to let us in with instructions to sign in with security… Trish and I were very grateful.

The whole process took about an hour we had to wait for the university students to finish up with their tasks which gave us enough time to thaw out lol. Thankfully when the MRI was completed the receptionist showed us a quicker way to exit the building, sparing us some time exposed to the howling winds. Winter just refuses to release its icy grip…  I’m hoping this is its last hoorah.

This has not been much of March break for Trish she has another Dr.’s appointment in London this morning for Matthew… that’s three days in a row to London and back. It’s taken two and half hours to get him up and out of the house, not a good way to start the day. I had almost forgotten how difficult it was to get Matt up and out of the house in the morning for school… and to think he had to be ready for the bus at 7:20 am. Suffice it to say, I don’t miss those days.

The last few days have been okay PSP wise. I’ve been a steady 6ish on the scale with most of the issues being in my lower back, knees and legs overall. It was very busy and exhausting for the first part of the week with me trying to get to bed earlier, but now that it has slowed down somewhat I find that sinking mood returning in the evening. There’s actually a name for this I discovered just recently, it’s called “sun-downing”… a distinct sub group of mood swings. Aptly named for the obvious reason, as the sun goes down… so does your mood. I’m going to check the Wheel, if there isn’t a slot for it then I’ll recommend that neuro-gaming commission retrofit the damn thing and add one lol.

Sean, Julie and the grandkids came down for visit today… nice time. I even took a chance at holding Owen while standing mind you it was a safe stance so there little to no chance of falling. It’s wonderful to pick up your grandchildren and hug them, but I have been a little nervous about that… fearful of a fall. Emma and I played with her Shopkins that were left here on their last visit, she was quite happy to have them back. Until today I had only heard about Shopkins, a toy craze like Furbies etc. only these items like shoes, purses, dresses, birthday cake (the list seems endless) have expressive faces and apparently there’s a Shopkins store as well… who knew?

Owen is quite the busy body, the kind of child that goes from thing to next with mom or dad running right behind… we all know one like that. He’s quite fearless too, as he tries to climb up on River to go for a ride. River is a large golden retriever, Matt’s service dog who filled in for Cooper after he was retired and is trained to be much more patient than some dogs would be. As far as River is concerned, Owen’s riding attempts are just another form of attention and this dog loves attention when he’s not working.

Trish made a delicious pot roast for dinner that had Emma asking for seconds, something that we’re told she never usually does. Nana bakes one of the best apple pies around but we couldn’t sell Emma on it, she did however agree to a bowl of ice cream with chocolate syrup as did Owen, who wore most of the dessert lol. Mmm ice cream… mmm chocolate, they come from good stock lol. When they were all done we put them in the bath and got their PJs on for the hour and a half drive home to Pickering… pretty sure they’d be asleep before getting there. Nothing much really interests me anymore, but a visit from our grandchildren is sure to always put a smile on my face.

I woke up just after 5:00 this morning and couldn’t open my eyes. Usually it’s the right one that opens a few seconds later, but today it was both… had to force both of them open. Mike and many others with PSP have lost the muscle control (apraxia) required to open and close their eyelids. My problem is the blepharospams… excessive and uncontrolled blinking which are treated with Botox injections. Dr. Hyson has said that if apraxia becomes an issue for me, then the Botox dosage would be tweaked for that problem. Anyways, it’s still too early to get up and I went back to sleep until 7:30 am and yea… both my eyes opened together this time.

I fed River and the cats and thought about having breakfast, but I nixed that idea. I’m going back to bed after I’ve done my prayers and heard my morning worship song. I enjoy the quietness that the early morning brings, left alone with my thoughts with none of the busyness and if I’m lucky… a beautiful sunrise. I don’t think that I’ll make it to church this morning, my tree stumps don’t want to carry me and I’m in a bit of a brain fog. Actually, after listening to my earlier recorded thoughts it’s a lot more than a little brain fog lol.

My legs have been doing the achey-shakey dance all day, that’s unusual as I normally experience those tremors at night in bed. I’ve been a steady 6 on the stiffness scale that’s a plus… I guess, but my voice seems to be getting softer than before. Here’s a quote I’d like to share “Everyday may not be good, but there’s something good in everyday”… positive words to be sure. So, as my voice gets softer I can mumble more things under my breath with little chance of being heard and that’s the something good today lol.

I forgot River outside after I fed him his dinner again, I remember feeding him but not letting him out. It was only an hour and a half this time Cooper did not tolerate my forgetfulness and would have been barking his displeasure long before this. River does not bark at all and it was a good thing that Matt saw him sitting outside the garden door… oops!

My dear cousin Heather has begun a family album (my mother’s side) on Facebook which allows us and the extended family to add pictures… especially older ones. There are many fond memories and pictures that I’ve never seen before. I think as we get older, most people begin to look for some meaning to their lives… especially their family history and what direction our lives have taken compared to that of our ancestors.

There are a number of websites such as ancestry.com/ca that people can join… I know I did. These sites allow you to research your family lineage and build a family tree and on my father’s side, I‘ve been able to go back as far as the mid 1300’s. I’m quite certain that there is some incomplete information, but it’s a start. I did not renew my membership with ancestry.ca as it was becoming just too difficult for me to navigate all the other connected family trees and “hints”. It’s my wish to have a completed family tree going as far back as records will allow, to present day before my expiration date lol. My older sister Judy has also done quite a bit of research… I’m hoping that she’ll be more successful than I was. So to recap, the Oak Island treasure must be found, the Toronto Maple Leafs will have to win another Stanley Cup and now I must have a completed family tree… I think that’s it lol.

I had an appointment with Dr. Burhan in London this morning.  I completed the mental wellness questionnaire as I usually do before seeing the “interview” team. I met with another resident Dr. Something or another and a nurse who I was not familiar with. We were discussing my mood swings and agitation concerns that seem to occur every day after my nap and into the evening. The questionnaire results indicated that I’ve had more anxiety than on the previous visits. Firstly, I told the team that I was not afraid of dying… I am at peace with God, but driving the anxiety are my expressed concerns for Matthew and Trish. I worry how well they’ll manage as a family given Matt’s behaviours and what will become of him after I’m gone, and then there’s the financial concerns.

Dr. Burhan has joined us, and the interview team review their notes and my questionnaire with him. He asked me how I was doing and brought up the blahs issue. I also told him that the PSP was pushing me a little more, but that I was also pushing back. There is a term for this “blahishness”… mood swings, it’s called “sundowning” and apparently pretty common to people who have a neuro-degenerative disease. Dr. Burhan has recommended an incremental increase in the Effexor that I’m already taking as booster to the other antidepressant Nortriptyline. He is considering changing the time of the dosage, but wants to gauge the results first of the increased dosage of Effexor. So, now I’m good for another 3 months or 1667 km, or whichever comes first… car joke… my bad.

This morning has started off as a 6ish on the stiffness scale. Legs not as weak as yesterday… I don’t think I mentioned that earlier. They are however tree-stumpish and sore as is my neck and right shoulder. I didn’t exercise yesterday either, I thought about doing it later but nah… couldn’t get motivated. I’ve allowed an extra 15 minutes of stretching this morning for shirking my responsibilities yesterday.

I’ve begun the increased dosage of Effexor today at lunch I’m not expecting to see any difference right away and why would I, there’s plenty of anxiety to last a month. The news is reporting another terror attack in London, UK this morning. It’s easy to forget about the PSP while you’re watching these tragic events unfold, I feel like I should repost the essay on Intolerance once again… when will insanity stop?

I had a sloth-like backwards somersault off my exercise chair today as a pin popped out causing the backrest to break away. I practised a fall similar to this in training for years… it’s a good thing for muscle memory. Luba has to document it… calls it a controlled fall with no bumps, bruises or broken bones. Falls can be a serious thing for those of us with PSP and I don’t want to make light of it, but I found the whole thing funny… I’m still chuckling as I write about it now.

I wrote a bit of a diatribe on Saturday, I was feeling agitated and needed to vent… hope I didn’t offend anyone. It took much of the day to pen and I published it separately to my blog on WordPress under a different link. Suffice it to say, the increased meds didn’t make any difference that day but I was able to vent 10+ years of contempt for the subject, only this time I put in writing. Unfortunately I didn’t really notice how stiff I was becoming while in this agitated state and took me some time to get out of the chair afterwards. I’m at the point now with my latest project that I can begin to paint. I have a minor tremor in my right arm, which is barely noticeable until I pick up a paint brush… ugh. Already I see that there is some fixing-up to do lol.

A 12 hour fast from Sunday night to early Monday morning has found me very hungry and a lot slower than my usual sloth-like self. I needed to get some blood work done for the research study I’m in and they wanted the results “yesterday”. My sister-in-law Marg has been very accommodating… giving up a chance to sleep in by agreeing to pick me up and bring me back home for that appointment.

I was a little saddened after reading an email this morning from one of my PSP groups. Another member of the group who’s posts I always enjoyed reading has earned his angel wings. You are now free of this wretched disease to fly amongst the other angles… RIP Peter Jones from Queensland, Australia. I know that Trish is concerned when I read such posts and there have been several over the last few months. While appreciate her concern sparing me from posts of the “end game” of PSP does little to change my mind and further strengthens my resolve to rewrite my own ending.

I’m well aware of the insurmountable odds I face, PSP after all is a terminal brain disease with no treatment, no cure… yet! As I have said before, I refuse to let PSP define me. Initially I began my journal/blog as a means of keeping my family and friends updated on my condition, but it has become more than that. It’s become a vehicle to raise PSP, CBD and MSA awareness and the blog is now read around the world. It also allows me to give voice to those with these devastating diseases who can no longer speak for themselves and hopefully, a glimpse of what the experience is like as someone afflicted with the disease.

I write evocably, trying to create a picture easy enough for all to understand… better than using terms like axial rigidity, dysphasia, apraxia, dystonia, bradykinesia and so on. Those are terms that the medical community use. Oh by the way, ask your GP or your primary medical care giver if he or she has heard of PSP, you might be surprised at how many in the medical field know little to nothing about the disease. Awareness is the key to understanding.

The stiffness has been a steady 6 for the last few days. My leg was really bothering me earlier, but after my nap it’s my left leg. There’s no soreness, it feels very weak… almost limp, but I can walk on it. I went back to painting my project and still, my arm wants to tremor a bit. I thought a one point that I should just let it go… maybe I’ll end up creating a priceless abstract. Hey… it could happen have you seen what is being passed off as art these days lol.

My stiffness remains at 6ish today, but it’s been the pin ball game of pain travelling one leg to the other, then my neck, then my hip… you get the picture. We had a foot care appointment… yes both Trish and I today. From there we have movie date to see The Shack based on the book of the same name that we both read a few years back. I enjoyed the movie… it was very close to the story line of the book, but the best part of it was that I had some alone time with Trish. We arrived home close to our normal tea time and then it was off to bed after that.

It’s been the pin game of pain pretty much all day… still about a 6ish on the scale. The achey shakey dance has started a little earlier tonight than usual. I guess my legs didn’t want to dance alone and have invited my left arm to the dance floor lol. That’s all fine and well except for the fact that I’m trying to do some more painting on my latest project… there’s sure to be some oopsies.

I’ve been using a moist heat pad for several months now when I nap and go to sleep for the night. It’s a great item to have and I would recommend it for anyone who experiences muscle rigidity or soreness. The problem sometimes, is that my cat Miss Becky thinks that it is exclusively hers and it becomes a bit of race to see who gets to the bed first lol. Quite often she is already on the bed and has taken over the heating pad… and it doesn’t even have to be on. Despite her loud protests, Trish or I will have to move her because she just won’t move over on her own but will quickly settle back in with me… she’s great at cuddling. Miss Becky never stays the night though I think she gets annoyed that I move the pad around throughout the night to whatever sore spots are yelling the loudest lol.

March seems to be going out the same way it came in… like a lion. High winds, snow flurries, freezing rain… ugh! I should have thought twice about removing the burlap and twine off the younger trees… duh! Welcome to Canada, one of the few places in the world where can experience all four seasons in a week… or sometimes in one day. The resident chipmunk which has come out from hibernation stopped on the patio and gave me a disdainful look… like I had anything to do with the weather lol. I was going to tell the little critter that this messed up weather was a result of climate change, but then I remembered that’s all a hoax created by China… no less.

I’ve been experiencing much more soreness with the rigidity lately, which still remains a steady 6ish… I’ll take that over a higher number anytime. The heating pad has become my constant companion for whenever I sit or lay down for an extended period of time. Unfortunately it doesn’t much help the legs I call tree stumps … that’s a different problem altogether. However, I will not complain for there are those on this PSP journey that are struggling much more than I.

As I was exercising this morning, the ticker on the bottom of the news channel reports that 68% of millennials can’t and don’t know how to have a face to face conversation… duh. That’s not news to me, but the number is concerning. It seems that if they can’t say what they want or need to express in 140 characters or less, then the brain shuts down and they’re completely and literally at a loss for words. And to think, that’s our future… dear Lord help us.

Never mind that they don’t know cursive, how would they… they were never taught. The education model… probably concocted by some PhDs who were tripping out on some bad drugs and their tongues in the early eighties, argued that it would “identify the literate from the illiterate”. Well… no s##t! How else are you going to identify the students that require extra help?

Not helping the cause is today’s technology, why learn to write when you have predictive text and voice response. Don’t get me wrong, there is certainly a place for technology in the classroom, but there will be consequences to rapidly changing technologies. Advancing the technological platform, only leads to more automation and artificial intelligence resulting in further job losses… already evident in industry today. I wrote about that the other week… no need to get agitated over again lol.

I’m getting ready for a reunion of sorts this weekend and Trish and I will be spending a night away from our house for maybe the 3^rd time in Matt’s 22+ years. My sister-in-law Marg will be here to keep an eye on Matthew… I’ll let you know how it all worked out in April’s blog.

 

 

 

The PSP Chronicles

 February 2017

Cooper is back home I’m still deeply saddened that he’s gone, but I feel better knowing that his ashes and a wonderful little memorial are here with us… I will never forget you Coop. The sun has come out again, earlier than yesterday and beautiful male cardinal has graced me with his presence on my deck. I can’t tell you enough how good this all feels… this trumps the pain and stiffness lingering in my body.

Laying on my back doing hip rolls this morning, when I finished them Luba notice that both my hands were clenched in a fist. With a little prying and some massaging I managed to get them back to an open state. PSP has been pushing me a little harder lately… I don’t think it is expected me to push back. The left side of my lower trunk, hip and leg have been really stiff and sore… more than usual, for a few days now. I have a massage appointment tonight at 6:00 pm and I hope that Holly (RMT) will be able to give me some relief. I’m considering setting an alarm for my right eye to go off before the left opens lol. Lately its’ been opening 5-10 minutes later than my left eye, I know that Dr. Hyson is confident that he can correct the apraxia with Botox if it becomes too much of a concern. I had a chiropodist appointment today at 4:30 pm I’ll be continuing my foot care with her, as it’s covered under Trish’s benefits.  I also had a massage this evening. Holly has worked a little harder on my left side. She agreed that the area was much tighter now than before.

I had a pretty good start to the day… 5-6 on the stiffness scale… last night’s massage really loosened me up. Unfortunately the relief is not long-lasting and my lower back is tightening up again. Late afternoon and evening have not been good to me for a while now it seems like my mood just tanks. My dinner meds help for a while as they make me tired enough and I usually just sit and chill for a bit. I also try to keep busy with my carving projects until tea time with Trish.

For the most part we’re able to get one TV show in, but after that I’m done and I just want to put the day behind me. I learned some time ago not to wonder what tomorrow will bring… other than a new perspective on a different day. Of course that’s all subject to the BGR Wheel… sometimes it’s just better not to ask.

PSP is not a game. That said I do play mind games with myself. I know what areas of my brain are not working as they should. I’ve seen the MRI… had the neurologists and neuropsychiatrist tell me, in addition googling what other relevant factual information is out there on the internet. In my journal/blog, I try to write evocably so that the readers can really picture what it is I’m saying. For example, I use the analogy of a spinning roulette wheel (aka the Wheel) in a game I call Brain Game Roulette. Most everyone can picture a spinning roulette wheel and easily identify with it. The only differences in BGR are PSP symptoms instead of numbers and I use periods of time to represent the colours black or red.

There is much research and discussion around the brain and neuroplasticity, there’s actually a computer program called “Lumosity” which tests and trains the brain… simply put it’s an exercise for the brain. Behind it all as I understand it, is the premise that certain areas of the brain are not being used and that these might be trained to take over brain function of areas that are not working.

Here’s another brain game  I play. Try and picture driving along the road when you come upon a detour which I’ll call PSP.  Upon reaching the detour, I have to find a different road to get where I want to go. It doesn’t mean that I can’t reach my “destination” I just have to find another way. This is how I see it all my mind… visualizing another area of my brain taking over the area(s) that isn’t working. Unfortunately, there are times when “road closed” barriers are put up on the road I’m driving on… then I’m stuck with no place to go lol.

The rest of the week has been pretty much the same or as I would normally call it… SSDD. If you’ve read  the glossary of terms in a previous posting, then you’ll know what SSDD is and if you haven’t, SSDD is an acronym for same  shit different day.

I’ve finished up another Whimsical Chef project and put two pictures up Facebook to see which one was more favored over the other. Naturally most of the respondents said they liked them both… what a cop-out lol. To keep things interesting I’ve began another project in the Whimsical Chef series. I try to work on the projects in the evening when I’m feeling pissy, that way I’m by myself and won’t run my mouth off. The projects aren’t as detailed as many as I have done before but unlike before, I now have a slight tremor in my hands and my eye for detail looks more like… well, lets’ just say it isn’t the same lol.

I had a moment tonight at dinner. River was in the kitchen and I bent over to give him a hug, its’ been difficult for him as well since Cooper has passed. Cooper came immediately to mind and the last time I hugged him, was literally the very last time and I began to cry. I miss him… many nights I would be downstairs with him when he needed attention. I would stroke his ears and that wonderful little Mohawk on his snout and he enjoyed it. We always shared a hug and a cuddle before I would go back to bed and sometimes, I would just sleep on the couch with him beside me on the floor.

I woke to more snow, freezing rain and my first robin sighting this Sunday morning… poor bird arrived just in time for more snow. The rigidity is ever-present this morning and it requires an extra effort to move my tree stumps that masquerade as legs… I can’t see making it to church today. I’ve taken my meds and I’ve had my breakfast and told Trish not to bother getting up… I’ll be joining her soon.

Coffee just doesn’t taste the same after you dip your paintbrush in it. I’ve been working on the latest Whimsical Chef© piece and somehow could not make the distinction between my china coffee cup and plastic cup of water to clean my brush… that’s another one for the stupid list lol. The tremors in my right hand are becoming more of a nuisance as I try to paint, I’m going to pack it in for the night… probably find a few “oops” tomorrow when I get back to it.

I thought I would be proactive this morning and signed Trish’s Valentines’ day card in case I forgot on Tuesday, even went one step further and put it an inconspicuous place or so I thought.  She wasn’t in the house five minutes when she  curiously walked over to where I had placed it, said that  she didn’t remember seeing a card on the fireplace where we keep Cooper’s urn.  She then had an ah-ha moment, I guess she figured out that the bright red envelope hidden behind the urn and memorial plaque was there for a reason… so much for the surprise lol.

I had a dental appointment this evening… getting my teeth cleaned which felt more like an archeological dig. Have you ever wondered why the dental hygienist asks you questions when they know full damn well you can’t answer them? How could you with gauze swabs and various dental picks and their fingers in your mouth… just saying. She then says thumbs up or down will do and I think to myself, I’ll show you a finger, but it won’t be my thumb lol.

It’s Valentine’s Day and I don’t feel too bad this morning, about a 6 on the stiffness scale. I came downstairs to get the card I had gotten for Trish… the one she discovered yesterday. She had a card for me and thought it would be funny to put it behind hers, knowing full well that I would try to give her card first.

We have a reservation for dinner tonight at a restaurant in uptown Waterloo. Jack had given Trish and I a gift certificate at Christmas for the Fireside Grill and we were planning on using it for the dinner tonight.   When it came time to take care of the bill, we were informed that tonight’s dinner menu was a promotional item and that the gift certificate could not be used, (as stated on the gift certificate)… which still doesn’t make any sense to me. It will be our 23^rd wedding anniversary in four weeks, any guesses as to where we will be going?

It was closer to 8:00 pm when we got back home and closer still to 9:30 before we were able to sit down and have our tea time. On my way upstairs to bed I doubled over in pain, it was so intense that I had to sit down on the stairs hoping that the episode would pass, and it did after a couple of minutes. It was on my left side rib cage and it felt like there was a bubble between my ribs ready to burst. This is new pain for me and I hope that it was only a one-off.

Trish noticed that I’ve had some confusion this morning when I got up and she asks how am I doing, which generally means what number am I… I’m about a 6 on the stiffness scale. I’ve had worse starts to the day. I’d like to think that this can only improve as the day continues but of course, that all depends on the spin of The Wheel. One thing seems to be constant though, my mood seems to tank later in the afternoon and into the evening. Have you ever heard of Hallmark (card) moments? This time is anything but, more like a DGAD (don’t give a damn) moment(s)… maybe that’s a new market for me to explore. I could create a boxed set of cards for any number of occasions with such phrases as; I’m sorry, you have me confused with someone who gives a damn or Hey! I missed you, next time you’re passing by… just keep passing by, or how about… come again when you can’t stay so long. I’m warming up quickly to this one… You’ve got problems. I’ve got problems. We’ve all got problems… take a number and go to the back of the line lol.

I almost forgot to mention the coughing episode I had while I was exercising this morning. Sometimes I can choke on water, but as rule now I thicken my fluids… especially water. This time there was no water involved, might have even been saliva. Whatever it was, it lasted close to five minutes and I coughed so hard that I almost vomited. Luba was right there in case I needed further assistance. I’ve been experiencing more coughing episodes (enough to wake me) throughout the night in recent weeks. I’ve read many posts from caregivers in the PSP community who have said that this is a pretty common occurrence with their loved one with PSP. They chalk it up to swallowing issues due to the weakening throat muscles. The thought of choking on food and liquids let alone your own saliva, is very disconcerting.

I had a better sleep than previous nights this week… more on that later. I got to watch the sunrise this morning… wow! It’s a new day dawning and with that, a new perspective on life… deeper faith and renewed hope. A line of lyrics from one of my favourite worship songs says “It’s time to sing His song again. Whatever may pass and whatever lies before me, let me be singing when the evening comes”. How often do we take the start to a new day for granted? How many of us pray for the opportunity to live to see another… I know I do. Sunsets are beautiful too. But for many people living with a terminal illness it can also bring a measure of sadness, often wondering if this will be the last?

There are plenty of quotes in books, social media, internet etc. for us to grasp hold of… cling to and make them are own mantras. “ You only live once, Live each day as if it were your last or live like you were dying” are but a few. The messages in these quotes and other positive pearls of wisdom are well-intentioned and should be practiced… in as much as one is able to do. A bucket list is also a great thing to have… I have one and have been slowly crossing things off it. A word of caution though, most things we would like to do often come with a heavy price tag. To realize the items on your bucket list, you might (like me) end up having to add… pay off credit card to the list. This of course, will in no way buy you extra time if you think that you’re not leaving this world until the card(s) are paid off lol. I’ll still be getting those annoying statements at my new address… # 1 Pearly Gates Drive, Heaven… hopefully. Included in your statement will be one of those annoying notes that say “if you continue to pay this amount at this interest rate it will take you until eternity to pay off your balance” lol.

The sun feels good as I sit here journaling and there is the promise of spring-like temperatures for the next few days. I’m not going to waste this day inside, I’m going to have breakfast, get dressed and take River out with me. I’m sure that I’ll come up with some new outdoor projects or something else to add to my bucket list… which I can’t pay for lol.

It’s absolutely beautiful outside today and better yet, I’m about a 5 on the stiffness scale… haven’t seen that number in quite some time. PSP has a way of messing with you so I don’t expect the better days to continue, that’s not being negative… that’s just a fact. River and I got a chance to play fetch, I would throw the ball and he would bring me back a stick… oookay. The good weather also allowed me to clean up the doggy landmines, there wasn’t quite the mess I thought there would be but then I remembered there was only one dog to pick up after. It’s still hard… Cooper meant so much to me. I will miss his company and I know the backyard romps won’t be the same for River as well.

I spent a couple of hours in the backyard before coming in for lunch and nap time. It wasn’t long after my nap before I headed back outside with a coffee in hand and oh yes… lets’ not forget River. I’m not trying to jinx myself, but I’m still amazed at how good I’m feeling today. That said, I’m still as slow as a sloth and climbing stairs well, lets’ just say stairs are my nemesis… them and crown molding lol.

This has been a good long weekend PSP-wise for me, my legs are a little more troublesome today than the past couple of days but hey, I’m happy with any kind of relief. I had a chance to watch the sunrise again this morning while I was listening to my favourite morning worship song – 10,000 Reasons by Matt Redman. At the moment in the last verse where he sings “Jesus, I will worship your holy name”, the sun which had been a bright white-yellow in colour to that point suddenly turned a brilliant orange and simultaneously the hair on the back of my neck and arms stood on end. Coincidence…? Remember Gibb’s rule #39… there’s no such thing as coincidence.

I know there a plenty of naysayers out there who would try to explain this away using the body’s physiology, more specifically the fight or flight response. When we react to a situation that our brain perceives as threatening or otherwise not normal, there is an increase in adrenalin production and more blood is directed to our vital organs. The dermis (skin) is the largest external organ which contains enough blood that it can be diverted to preserve and protect our internal organs and yet still maintain “normal” function. As the body does this, the dermis in effect shrinks and the body hair feels like it is standing on end… that’s the science behind it.

So to recap, when the body experiences something out of the ordinary… threatening or otherwise, it has this physiological response. This morning’s experience falls into the otherwise category and most everyone who is honest with themselves, would say that they have experienced both reactions, one that can be explained away and the other… not so much. Remember, that science is merely the mechanics behind God’s creation (evolution for those who don’t believe). Nowhere, have I’ve ever heard or read… scripture included, that the Lord said that man couldn’t discover the “secret” behind his creation. Well, that’s a long way around saying that I had a divine experience this morning lol.

I’m still feeling pretty good… even after my nap today. Trish is going to take River out for a walk just around the neighbourhood so I have decided to break out Willy (my walker) and join her. The cabin fever I seem to experience every winter is sending me around the bend and with these spring-like temperatures, I’m going to get outside any chance I get.

Earlier in my blog I spoke of mind games I play… not to be confused with Brain Game Roulette. Specifically, I discussed the “detour” analogy as I drive along the PSP and Dementia Parkway… figuratively speaking of course, they took my license some 3+ years ago.

Interestingly enough, I came across a Facebook post today by a veteran journalist by the name of Mike Oliver who has been diagnosed with Lewy Body Dementia (LBD). Here is a paragraph from that same post.  “There are cases in the scientific literature of people who upon autopsy were found to have brains that indicated Alzheimer’s disease yet during their lives they showed no symptoms. Researchers say their brains apparently found “work-arounds” to the plaques and tangles that are believed to be the root of Alzheimer’s” [sic]. Work- arounds… detours, maybe I’m on to something here… who knows lol.

This is the time where I say that the words and thoughts expressed are mine and mine alone. If I wasn’t feeling so stiff, sore and in a pissy mood, my views wouldn’t be so pointed. Doesn’t matter anyway, probably won’t remember what I said a few hours from now… dementia has a habit of doing that lol. That plus the fact that I don’t go back and read what I’ve already written, for better or worse.

I was watching a Trump news conference this morning. It’s not bad enough already that my legs are really bothering me, as well my abdominal muscles too. Now I have to listen to this crap and how “he” is going to make America great again, nobody else is going to do this… just him, at least that’s what I’m hearing. With him at this news conference were at least two dozen CEO’s of some of the most successful corporations in America whose combined wealth, salaries and other forms of remuneration could rival the GDP of any number of countries outside the continental U.S.

There’s much talk on job creation in addition to the usual rhetoric on Mexico and China. Trump even went so far as to say that Wal-Mart will be creating 10,000 new jobs because of his initiatives. What he doesn’t say is how many of these jobs will be full or part-time, nor does he say that these will be good paying jobs. Wal-Mart’s employment record and how it treats its employees speaks for itself. Made in America and buy American is not part of Walmart’s business model… there’s just not enough of a profit margin in it.

Also at this news conference is Trump’s new economic advisor Gary Cohn. This is the same Gary Cohn- investment banker that worked with Goldman Sachs for 25 years. The same Goldman Sachs that was fined $5 billion for its role in defrauding investors among others like Citi Bank that led to the 2008 economic crisis.

What was really represented at this news conference today was a portion of the 1%, and let’s not forget that Trump is also part that 1% as well. This conference looked more like a golf course country clubhouse meeting with a bunch of old cronies who have no real interest in making America great, unless there’s something in it for them. Had any one of these corporations been really interested in “making America great again” they could have taken the initiative and made it part of their business plan well before Trump came into office.

A thought just occurred to me, was I actually watching a Presidential news conference or was this just “fake news” laden with alternate facts lol. Oh by the way, google alternate facts and you’ll come up with a familiar name… Kelly Ann Conway. History will remember her well, for uttering those two words in an obvious attempt to put a different spin on some verbal missteps on the part of the new administration. Conversely, if you google self-effacing you won’t find the Donald… just saying. Seriously though, have you ever heard someone who repeat themselves as many times as he does… looking for validation of every word he utters? I know that he is not a polished politician, the American voters don’t want that either as evidenced by the outcome of the election. My 23-year-old autistic son has a more extensive vocabulary and better command of the English language than the Donald… and he was non-verbal until  the age of 9.

Trump’s lexicon is an affront to the intelligence of the American people, surely his utterances could be better scripted by his aides. Oh yeah… I forgot that he usually goes off script. The Donald should remember that every time you open your mouth to speak, you’re showing people how much, or how little you know… just saying.

After the presidential inauguration it was my hope that Trump would be humbled by the power… the responsibility of the Presidency, of what I once considered the greatest nation on earth. One month in and through his actions, he has shown nothing but contempt and disrespect for the Office. Instead, it has further stroked that huge ego of his… as if his head was big enough already lol. Now we have coined a new word …“Trumpism”, which I loosely define as a runaway train with a reckless engineer at the controls. Some of his words and actions are juvenile. Others are wondering if we’re not witnessing the rise of the 5^th Reich and to think, this man is privy to the nuclear codes.

Former republican President George W Bush, who has largely remained silent throughout the election for the first time today, has spoken guardedly in general terms about the new administration since the inauguration. His chilling words of caution “power can be addictive and even corrosive” raised a red flag… take away from that what you will.

Trish and I travelled to London this afternoon for my Botox injections… 5 around each eye, one in the right calf and one in the bottom of the left foot. I thought that I would never get used to these injections, I remember all too well the very first experience…ugh! I’ve had nothing but positive results and some unintended benefits such as fewer wrinkles around my eyes and forehead that Trish eyes enviously lol. The doctor says that it also reduces the mask-like or look of surprise feature common to some PSP sufferers.

This last week of February has been a difficult one for me. There have been a number of members of the world-wide PSP community that have passed away the last few days and weeks from complications due to PSP. It’s saddening to read some of the posts by family caregivers and Trish questions me if that’s a good idea or not. The mostly long drawn out way that PSP takes it’s sufferers, has the same effect on the families as well. Reading and sharing their stories only strengthens my resolve to stay ahead of this wretched disease. I may not win the war, but I’ll sure as hell stay in the battle. It is the fight of my life… for my life.

The stiffness has remained fairly constant… 6ish on the scale. In BGR, the Wheel has spun and the ball has landed on the more recent Pin Ball slot. From kneecaps to calves, neck to my hands and everywhere in between is painful. I’ve had a couple of dizzy spells today, no brain zaps and fortunately… no falls.

Luba is here this morning and arrived while I was watching what I thought was the season finale of the Curse of Oak Island. I had already completed half of my exercises before she came, so that I could catch the show on the android streaming box before Jack could settle in front of it. She had some questions about the show and I said that I would tell her more about it during the rest of my exercise routine and over lunch if need be.

I began the story with my visit to Dr. Archibald’s office in Mt. Dennis where we lived. As I was waiting to be seen by the doctor, I picked up a copy of the Reader’s Digest dated 1965… can’t remember the month exactly. I was 11 years old at the time and the year was 1967, which should not be surprising to anyone who has ever picked up reading material in a doctor’s waiting room. I was so captivated by the story, that after my appointment I remained in the waiting room to finish the story and after that… I was hooked.

Adventurous 11-year-old boys… looking for buried treasure soon lose that interest and turn it towards girls and I was no exception. Actually, I managed to do both from the time I was 5 years old, but as time moved forward, so did my interest in girls. It wasn’t until 2014 when I saw a preview on the History Channel for a new series… The Curse of Oak Island did that “finding treasure” fever peak again. I am not alone… The Curse of Oak Island is the most watched show on History Channel for the past 4 seasons. There is even a Facebook page and a number of on-line groups to which I belong that follow the series, discussing everything about what the treasure is, how it got there, the best way to retrieve it and so on.

Nothing much interests anymore, but because this story caught my attention and imagination 50 years ago, I eagerly look forward to Sunday nights and the one hour where I can forget PSP and lose myself in the show, as so many others do in living rooms across the continent. I told Luba that it’s not too late, she and her husband can watch the first four seasons through different options… who knows maybe they’ll get the bug too.

My lunch is over and Luba is just leaving. I’ve brushed my teeth and then rinsed with mouthwash, only this time I spit the mouthwash into the garbage can instead of the sink… I guess that’s better than peeing into it like I’ve done before. That’s another one for the Stupid List… but first I need to remember where it is lol.

Today is February 28, 2017 and it is World-Wide Rare Disease Day. As part of The Faces of PSP, CBD & MSA collective I’ve posted some pictures, one pre-PSP and another more recent picture, so many others have  done this as well. This is a PSP, CBD & MSA Awareness campaign highlighting rare neurological diseases that have no treatment and no cure… putting real faces behind these diseases.

It’s not a great day for me PSP wise. My right side lower back, hip and leg and knee are really bothering me today. The head pressure is building up and my eyes feel like they’re clouding over, this is something I’ve experienced before. Matthew is yammering at me and doesn’t understand why I’m not interested in what he has to say. Once he gets something in his head, he continues to perseverate on the subject. Hey wait a minute, doesn’t that sound like someone who’s been making news headlines everyday… POTUS?

I read an article today published by the Washington Post… fake news, no doubt. Trump claims that Obama organized and is behind the protests against his presidency… talk about delusional and paranoid. I think a psych evaluation should be a prerequisite for all who hold positions of authority and trust… especially POTUS. One can only see this behaviour escalating and it is becoming a distraction from doing the job he was elected to do… it’s time to move forward Donald.

The National Governors Association meeting was held today at the White House’s State Dining Room. At the podium stood Trump in front of the oil painting of a seated Abraham Lincoln with his hand on his chin as if in deep thought and contemplation probably thinking to himself “what the hell… is this for real”? Then there’s Trump senior adviser Anthony Scaramucci suggesting that the Democrats are linked to bomb threats made against the Jewish Center. Now there’s the issue of U.S. taxpayers paying for Secret Service Security details for his grown sons who were opening the new Trump Tower in Vancouver as well as attending other Trump business related interests. I’m no accountant, nor am I privy to the costs of these security details, but I’m quite certain that this money would go a long way in reducing homelessness and making a dent in the poverty seen in some cities of America.

Wow! I watched some of the highlights of the president’s speech tonight to congress.  A much softer tone and less rhetoric, calling for unity… scripted or not, he is now sounding more like the President of the United States of America.

The day is over, so is the month. The head pressure won’t go away. The stiffness is always here, along with more soreness. I’m agitated, my eyes are tired, I’m tired and sleep is calling… I’ll take that call.

The PSP Chronicles

The PSP Chronicles January 2017

Welcome 2017… the year of the Sloth lol. Not off to a particularly good start, I see by a message from my dear cousin Heather that the December 2016 Chronicles contained a number of repeated paragraphs, thank you for that… welcome to my world of dementia and PSP. I deleted the original post and reposted with the corrected document… duh! I also knocked my coffee over and later mused that it seemed like I watched the whole incident in slow motion… more sloth-like, oookay lol.

This is the last day that the grandkids are here, so tonight we had a bit of a pizza party for dinner. As part of a fundraiser for Jacob’s school, Trish ordered a pizza making kit that contained all the ingredients you would need to make a personal pizza. So, we all gathered around the kitchen island and made our own pizzas to bake. It was actually quite enjoyable for me to participate in the activity with Trish and the kids, the pizzas which were all different tasted pretty good too. So all in all apart from the increasing rigidity and a little anxiousness, it wasn’t too bad of a weekend.

Trish and I travelled to London Mental Health Centre this morning for a scheduled appointment with Dr. Burhan… he’s my neuropsychiatrist. I think it was about three months ago that I last saw him, this is a follow-up visit to see how I’m managing and if there needs to be any change in medication.

The London Mental Health Sciences Centre is a new and very secure facility requiring confirmation by security to the doctors or social workers offices. Once the appointment is confirmed you are issued a swipe card to proceed to the next station to verify your health card information, then you can proceed to the health unit where your doctor or social worker works out of. Everywhere you look around you’ll see patients moving about and entering secured areas by means of their wrist bans which are coded to allow them access to doctor only approved locations. Some of the region’s  most challenged individuals including hard-core drug addicts, schizophrenics and the  mentally marginalized can all been seen milling about with outpatients like me. I think that’s part of the hospital’s new concept or mission statement is all about inclusiveness, which is clearly evident everywhere in the building.

I only mention this because when I first began seeing Dr. Burhan just over two years ago, I like many others attached a stigma or if you like… had a perception of the face of mental health. Troubling to me at the time was and I still am an out-patient in the Geriatric Ambulatory Unit. There is a certain connotation attached to the word geriatric, and I certainly do not consider myself “old”. I’m way past that now, as I understand how PSP literally changes the brain’s chemistry leading you down one of the six pathways to depression, mood swings and all the other baggage that comes with it. Dr. Burhan, as a neuropsychiatrist deals with these issues specifically and has a more comprehensive understanding over the other neurologists of what medications would be most effective in treating the mental health symptoms of PSP and other motor neuron diseases.

So that being said I’ll get back to the actual appointment today. When Trish and I arrived at Burhan’s office we notified the front desk and then I was led into interview room and first met with an intern… Dr. Something or another and completed a mental health survey, which I do on each visit.

Shortly after that Trish comes in, as does Dr. Burhan and the nurse… I can never remember her name. I’m asked if there have been any changes or concerns since the last visit, to which I replied that there were. I told him that I had some bouts of agitation, but nothing like in the past. Added, was the anxiousness and according to Trish’s rat pad aka iPad… impulsivity. She mentioned on a number of occasions while she was driving that I would grab the steering wheel if I thought we were too close to the shoulder or some other road hazard. Admittedly, I have become a white knuckle passenger and it’s not because Trish is a bad driver… she isn’t.

Dr. Burhan has received the results of the pulmonary functions tests that I did back a while ago as do all of the doctor’s on my team including my G.P. Dr. Harvey. He understands the results of the testing and did a quick review but would leave the full explanation of test results to Dr. Mathais… he’s the respirologist who I will see tomorrow. An EKG was ordered as part of the tests, I’ve not had one those for many years. Dr. Burhan did mention the results of the EKG that showed my minor heart attack that I had many years ago.

Now, I know that may come as a surprise to many… especially my family who were never aware of it. So FYI, it happened 29 years ago when I was 31 and it occurred while I was in the hospital for a stress related illness. I coded (and had a NDE near death experience) then was resuscitated. I asked that the doctor not tell my then wife Charmaine about the cardiac arrest, as I would tell her about it when I thought the time was right… I don’t think that I ever told her, or anyone else including my family, so now you know. And oh yeah, Dr. Burhan increased my Effexor to boost the Nortriptyline to further help with the increasing anxiousness.

This is the second time travelling to London in as many days, this time it’s to visit Dr. Jenkins the movement disorders specialist. We spent an hour and a half with her discussing the changes that have taken place and the reports from the respirologist and other concerns. She has agreed to increase the Baclofen… muscle relaxant, to one more dose per day and will consider increasing the levo-carb (Simenet) for the rigidity if there is not much change with the Baclofen. Dr. Jenkins also examined my feet which were purple at the time. We feel this is a circulation problem and will discuss further with Dr. Harvey, my GP. Overall, she’s happy with the PSP’s progression which has been slow, but steady and might be leveling for a bit which is not uncommon.

The Botox treatment for the dystonia in my right foot seems to be helping, as my gait is little better now. Trish has asked about my hands, as my fingers are becoming distorted and we are told that they are becoming arthritic, no surprise when I consider all the abuse I put them through years of martial arts training and teaching… one more issue to deal with. Dr. Jenkins has encouraged me to keep on exercising the best that I can, because it does make a difference in my mobility.

We have made another appointment six months from now and it’s time to leave… I have another appointment later in the afternoon with Dr. Mathais the respirologist.  We hope to get home in time enough for lunch/meds and my nap, but first Trish has to drop off the paper work for Matt’s doctor who works out of another hospital in London.

My appointment at Dr. Mathais’s office included another physical examination and a review of all the pulmonary function tests he put me through He reviewed the cat scan of my lungs… no lesions, tumors etc… lungs are working fine and to capacity. The muscles in the airway that control the inhale and exhale breathing are weakening 38 % and 42% respectively of what they should be. This can also create more swallowing issues, something I know all too well. I’ve been prescribed Ventolin and a puffer to help when the exertion becomes too much like when climbing a flight of stairs.

The first week of 2017 has been a busy one for Trish and I, she tries her best to make mu appointments for the time she is off work. CCAC has come today at 3:00 pm for scheduled 6 month review the coordinator would like to arrange for a physiotherapist visit to discuss some of the fall issues. I’m not very agreeable to that, as I think that’s more of role best left to a OT. I think I agreed to one visit, but Trish later says it will only be the OT coming. We had some discussion about funding and any available grants for home renovations towards making the house more accessible and reducing mobility concerns. We’re looking to create a wet room for the future, basically a wheel chair accessible bathroom with walk-in shower and all necessary upgrades.

The last couple of days have seen more rigidity and more soreness it seems to shift all over my body. The nightly tremors I call the achy-shaky dance are little more pronounced… I thought they had gone on vacation for a bit. I should clarify that the tremors that I call the achy-shaky dance are not painful… I just needed a word to rhyme with shaky lol.

These same last few days have seen a little more confusion on my part and I have been misplacing items. I know that I may joke about it, but is becoming very frustrating and upsetting… even Trish is getting a little annoyed.

Julie and the kids are coming Saturday for an overnight visit, and so was more snow as I soon discovered Sunday morning… at least 5 more. I had a bit of a chuckle last night, Pam… Mike’s wife messaged me on Facebook telling me that Governor Deal of Georgia declared a state of emergency because they were expecting 2 inches of snow… at the time she messaged me they hadn’t seen so much as a snowflake lol.

I did say that my daughter and the kids came down… I forgot to add their hormonal dog too. Actually I’m not sure that I did, I don’t make a point of going back to see what I’ve written… what you see, is what you get. That dog which is some kind of cross between a Shih Tzu and whatever not only tries to hump everything in sight including poor old Cooper, but decides he’s going to mark almost every corner of a wall and furniture in my house. If the dog is not fixed by the next time they come down, then I’m going to neuter him myself with a pair of needle nose pliers and no anesthetic lol.

Trish’s holiday period is over and it’s back to work for her, I will miss having her around for the first half of my days. I haven’t experienced anything out of the ordinary PSP-wise the last day or so, I’m guessing that’s a good thing. There have been a few deaths recently in the PSP community over the holiday season which is always sad to hear about, and as difficult as it is to read about them, I refuse to let my mind go to that place.

The OT that is connected to CCAC has come to the house this afternoon to discuss some new strategies for fall prevention and accessibility renovations. Actually, they’re not new strategies, but more of a review of earlier discussions regarding the use of a walker in the house which I’m agreeable to. Much of the discussion has been about renovating the bathroom in my man cave aka the cottage to a wet room and what kind of funding is available from the government and charities like the March of Dimes. There is obviously an application process to go through and I think that the time has come to consider initiating it.

Wet room is just another term for a bathroom that is wheelchair/walker accessible including a walk-in shower or tub, lower sink, toilet with a raised seat and all the necessary grab bars. If there are to be any modifications in the house, this is where I would like them to be, as I spend a great deal of time down there and would have easy access to my sanctuary and the backyard.

I’ve just had another moment to add to the stupid list. Every morning I give Cooper a sponge bath, he’s incontinent and sleeps on doggy training pads. These are a great item to have and they really do a good job in the event that he has an accident. The sponge bath began just as a clean-up for an unintended mess, but he enjoys it so much that I’ve continued with it daily. I digress… anyways, after the sponge bath he gets a treat as does River because he does his part. So, when I finished bathing him this morning I reached for a clear canister and took out two tea bags and offered it to the dogs and they refused it. The look on their faces was like… what the hell is this? It took me a few seconds to realize what I had done before and make it right. I swore I heard him say “make sure you put that on the Stupid List”, I’m right on that Coop… duh!

I saw Dr. Harvey this afternoon for a foot issue… discolouration. We discussed the purple feet issue… it’s not diabetes, nor is there any swelling so I don’t need compression socks. Dr. Harvey’s best educated guess is circulation problem due to the inhale/exhale breathing muscles… not enough oxygen getting to my legs and sometimes my feet. While we were there Trish and asked for a copy of Dr. Jenkins report in which she discusses the dystonia in right foot and left toes that have started to curl as well as the contractions in my right arm. Also mentioned is the blepharospasm and the Botox treatment that has been very effective.  Dr. Jenkins conducted an eye examination and reported the extraocular movements were full in the horizontal plane (side to side), but no movement in the vertical plane as well as some slight apraxia… I didn’t really expect any changes. She questioned the discoloured feet, as she had not received Dr. Mathias’s at the time of my visit. I told her that I now sleep with my feet raised and have changed up my exercise routine… completing the Pilates leg raises at the end of the circuit.

I’ve been feeling a little blah in the afternoon since nap time… a good dose of the grandchildren should pick me up. It will be William’s 6^th birthday on Saturday and it’s centred around the Star Wars Theme… Liz tries to create something special for the kids on their birthdays and does a wonderful job of it.

I caught  my middle finger between the side panel of the Jacuzzi and tub tonight after finishing a repair/replacement on the basket strainer… it hurt like hell and there was no way I could free myself. I called down to Trish, PSP has left my voice much quieter now… had to muster up everything I could to yell. I could see by the look on her face… like what the hell did you do? Pretty obvious to me… duh, which was not directed to her, but rather at my own stupidity. My middle finger is okay just a little bruised which is a good thing… that appendage gets a lot of exercise lol.

Today is the 19^th… it’s been one year now since Marci passed away. I got dressed for my workout this morning and the turned around and changed again… pretty sure I’ve done this before. The last couple of days, the rigidity has been steady… about 6ish.

Cooper… Our Furry Guardian Angel

Friday morning… woke up more rigid that the last few days, about a 7 on the stiffness scale. Cooper passed away this morning… 10 weeks away from his 15^th birthday, it’s been a very difficult day for all of us. There is now a huge void in our lives, and although River is a wonderful dog… he’s not Cooper. Coop had been struggling since April 2016 when we nearly lost him to a bleeding ulcer but he rallied back although not completely. Through all of his struggles, he never once lost that lab appetite which is usually a good indication that the time has come to cross the Rainbow Bridge.

I have essentially been his caregiver for the last few months getting up through most nights to attend to him. You might recall in some earlier posts that I made mention of this several times. Trish does not get enough sleep… 5 hours on average a night during a workweek  and I did not want to burden her with these interruptions. I made it my job to look after Coop and was very happy to do it any sleep I lost could be made up at my afternoon nap time.

Cooper was pretty much doubly incontinent the last few months, so that pretty much guaranteed a few messes here and there. After all he has done for Matthew and our family he deserved the care and attention. In fact, I very much enjoyed giving him a daily sponge bath because he had wet or soiled his pads. Cooper really enjoyed the attention as I would wash him down and River would lick his ears clean, I guess you could say that we were his care partners. Never once did I or Trish complain, no would we ever abandon him as you see with many senior dogs that fill the shelters and rescues. I did it out of love and compassion and gave him the care that I would hope to receive when I reach the point where I need it.

My heart and eyes are filled with sadness today I have lost my best friend, PSP will have to take a back seat for a while. Trish is feeling the same and Matthew, well he’s having a very difficult time of it as you might expect. Cooper, that beautiful black lab has left an indelible mark on the life of an autistic boy, his family, friends and to all those who knew him. Cooper, know that you are loved and will be terribly missed. We are forever grateful for the unconditional love you gave Matthew, the service you brought us and what you have meant to our family. I knew this day would eventually come and I prepared some words… a tribute, along with some cherished photos a couple of years ago not knowing if I would be able to when the day came. I’ll share this announcement and tribute now.

It is with a heavy, heavy heart that I announce that Cooper, my son Matthew’s Service Dog has today crossed the Rainbow Bridge.  I know that many of my family and friends have experienced the loss and grief of a beloved pet and understand how difficult this is. Coop was so much more to us than that. He was our furry guardian angel… my right hand, and Matthew’s anchor for over half his life.  Cooper enjoyed working, and the public access privileges afforded to him as a Certified NSD Service Dog having graduated team training in November 2003.  He has helped our family immeasurably, and has gotten us through some very difficult times while raising Matt. He loved his “boy” and our family unconditionally, as we loved him.

Cooper, that beautiful black lab has left an indelible mark on the life of an autistic boy, his family, friends, and to all those who knew him. Cooper, know that you are loved and will be terribly missed. We are forever grateful for the unconditional love you gave to Matthew, the service you brought us and what you have meant to our family.

You Were There

I remember the first day of team training. It was 7:00 am I answered a knock at the hotel room door… You were there.

When I allowed you that same night up on the bed, and each night after that for a tummy rub… You were there.

As a ten-year old autistic boy who waited anxiously for us at the front door one November afternoon… You were there.

That same night, that little boy slept uninterruptedly for the very first time… You were there.

Days, weeks and months went by, the love grew and the bond became stronger… You were there.

I remember every Christmas, the presents and the treat filled stockings… You were there.

While carving the holiday turkey… You were there.

For every melt down, every break down that Matthew had… You were there.

When the pound of foiled wrapped butter went missing off the counter… You were there.

Happy times, bad times, glad times and sad times… You were there.

From mommy’s chewed up slippers and soggy socks… You were there.

And while grandma was sick and recovering at our home… You were there.

For all Matthew’s challenging trips to the doctor or dentist… You were there.

The time a whole pizza just disappeared from the oven top… You were there.

From the very first and last day at the Woodview Learning Centre for Autism… You were there.

And to all the other children at Woodview,  who just needed to pet and have the comfort of a furry friend… You were  there.

The many parties and Woodview’s annual Christmas Pageant, with those silly reindeer antlers… You were there.

And the Woodview’s Doggy Play Days, when that shiny black coat was covered in so much mud, that you looked more like a chocolate lab… You were there.

The time when a parent “stranger” walked in unannounced to the Woodview’s student lounge… You were there.

The difficult transition for your boy from Woodview to High School… You were there.

Whenever mommy baked peanut butter cookies and banana muffins… You were there.

The many trips to Swirlee’s for an ice cream cone and Tim Horton’s drive-thru for a Tim-Bit… You were there.

For every piece or morsel of food that fell from the table to the floor… You were there.

The vacations – from beaches to camp grounds and places in between…You were there.

And when you could no longer work and attend school due to injury, in spirit… You were there.

Patiently waiting at the window every week day for the school bus and your boy to return… You were there.

Then I became ill, and began to change and acted strange… You were there.

The time when the dishwasher caught fire and you alerted us with your barking… You were there.

Sadly, as time passed on… so did you, but deep in our hearts… We’ll find you there.

And when my time comes and I cross the other side, it’s my prayer that I’ll find you… waiting there.

It’s inauguration day in the U.S. as well, and I’m stilled filled with disbelief surrounding the political events in the States which seems more like background noise compared to Cooper’s passing… I guess it would be correct to say that Cooper trumps Trump. All that I’ll say on the matter is that I hope President Trump, who now holds the Highest Office of the largest super power in the free world will be humbled by the responsibilities and duties he must now face for the next four years. I hope that his Presidency will be one of cooperation and toleration, not confrontation… time will tell.

It’s been a very difficult weekend for my family and I as we struggle to make it to Monday, then Trish will be busy with work and I with my regular routine. Matthew will continue to grieve Cooper’s loss for years, but River is still there for him. This whole ordeal has been difficult for River as well and I know that he is missing Coop already and it will take some time for him to adjust as well.

Through all of this, I have somehow managed to complete reading an email asking me to participate in a 3 year clinical study for brain research on 5 neurological diseases, specifically FTD… frontal temporal dementia, of which I am diagnosed with being one of them. I was really hoping that it would have been a PSP study, but any breakthroughs in early diagnosis and potential treatment of the five which are; ALS, Alzheimer’s, Vascular Cognitive Impairment, Parkinson’s and FTD could open a back door for treatment to other Motor Neuron Diseases.

Some time ago I recorded an episode of The Nature of Things the segment featured a number of individual stories of people dealing with different neurological challenges. Researchers say there is lots of redundancy in the brain so, if one part is not working then another area of the brain could possibly be trained to take over the task of that area which is not working. This is the simple premise of neuroplastic healing and neuroplasticity as I understand it, and it doesn’t work for everyone. Neuroplasticity certainly has its share of critics, but remember every great achievement made by mankind was once considered impossible. Whatever the mind of man can conceive and believe… he can achieve.

A new week has begun with more stiffness on my left side from my neck down my trunk and to the hip. I’m following my list as usual, but there is an obvious void… Cooper. Before I start my chores it was customary for me to give Cooper a sponge bath, which he loved and I very much enjoyed doing. It’s was our special time… just a way for me to say thank you Cooper for all you have done and that I will take care of you until the end.

River is very sad and missing Cooper… we all are. River came to us in May 2011 after Cooper had an ACL injury and was forced to retire from service. He and Coop were always together every day, and right up to the morning of Friday the 20^th when Cooper passed. It’s amazing what dogs can sense, that morning as I was giving Cooper his sponge bath, River who would always be licking Cooper’s ears clean stopped and began to whimper loudly and just stayed beside Cooper until I was finished.

PSP doesn’t care how I feel emotionally in fact the very disease wreaks havoc on my moods, personality and overall demeanor daily in addition to the physical battering it dishes out. How silly of me to think that it would allow me to grieve “uninterrupted” for Cooper. Much of the time, PSP and all its baggage can be frustrating and often angers me. This only strengthens my resolve to stay in the battle of a war that none of us afflicted with this disease has ever won. It is my job to “stay ahead of it… stay alive, until medicine and research can catch up”.

Sloths, Pinball and the National Guard

I had a bit of chuckle tonight. I’m sitting here at the keyboard doing some journaling when Trish comes downstairs and changes the TV channel to PBS, Marg has told her that there’s a documentary on Sloths being aired. If you’ve followed my blog you’ll know that I now identify my movements with that of the tree dwelling sloth lol. PSP is not funny to be sure, but I often poke fun at myself to lighten up, as I believe how you view your circumstances determines your response to the situation… or how it defines you.

I’m missing Coop and so is River. This would be the time of the morning when I would be giving him his sponge bath it was a special time for Cooper and I. He enjoyed it, I enjoyed pampering him a bit and River was always there doing his part. It was very difficult for me to do, getting down on my knees and even harder trying to get up but I never complained. Nor did I really complain about the many nights over the last several months getting up with him through the night. Trish does not get enough sleep through the night as it is, so I made this my job. I wouldn’t be truthful if I said that I didn’t enjoy the cuddle time with him as he drifted off back to sleep.

Matthew still has his moments and becomes tearful when Cooper’s name comes up, they had a special bond. He buries himself in making, editing and commenting on the YouTube video thing… I guess that’s probably a good distraction for now, but sooner or later he will have to come to terms with Cooper’s death.

I had, rather we had a visitor today for a short while… the sun. I don’t think that I’ve seen it for quite some time. It’s been dull, dark and dreary and that doesn’t do anything to lift your spirits… especially when you struggle with mood issues and the recent loss of a furry family member. So anyways, on the news tonight they said that January this time last year had 71 hours of sunshine. This January… the first 26 days we’ve had a total of 12 hours of sunshine, that can’t be good if you suffer with seasonal affective disorder (SAD)… and even if you don’t.

It’s been a week since Cooper left us. Matthew is handling the loss better than River and I… I guess that’s a good thing. DGAD would probably be the best way to describe how I’ve been feeling the last little while… have to thank the BGR Wheel for that. I don’t feel it so much through the day, as I keep myself busy with chores and exercise, but after dinner my mood goes for shit and the night can’t end soon enough. I can’t really go any further on a couple of my projects until I get more supplies and they cost money, when you’re on a fixed income it’s hard to make the dollar stretch.

At the beginning of each day Trish asks me how I’m feeling… she’s referring to the stiffness scale. Lately the number is 6-7ish and has remained fairly constant.  She’ll then ask, what is the problem area? My usual response is legs, trunk and neck.  Today is the usual response and then some. I’m going to use a pinball game analogy. Picture my body lying flat on my back, not a good picure I know lol and then pretend that I’m a pin ball game. The spring-loaded steel ball which is pain and stiffness is pulled and released. The ball travels up and in this case bounces from limb to limb, knee to knee, arm to arm, hand to hand and everywhere in between. It would be great if the ball would tank and the player loses his turn, but unfortunately the player at the paddles is PSP and it makes the Pinball Wizard look like a novice.

I’m going to call Mike at 10:00 this morning but before I do so, I want to read my January journal up to the last entry which was Friday, January 20^th 2017. Sometimes I can’t believe that I’ve written so much and it takes a great amount of effort… at least for me anyways. I can sit for long periods of time in front of the keyboard trying to put thoughts to words and relying heavily on the voice recordings on my phone to get me started.  If it were not for spell and grammar check I don’t think I could make much sense of what I have written lol. The journaling keeps my mind working and the exercises keep my body moving, I can’t envision how I would be without it.

I’m reminded when I talk to Mike about our challenges and giving some of this fight to the Lord, he… we can only do so much. Mike now has a home hospice nurse through the day while Pam is at work and I have my PSW for three hours a day… for now. It’s troubling to hear that he is progressing more quickly than me, but that’s the nature of PSP… not affecting any two people quite the same way at the same time.

We talked for close to an hour, but that’s what you can expect when you think, move and speak at a sloth’s pace lol. Mike shared a story, incident… whatever, with me and I asked him if was okay to mention it in my journal and he’s okay with that. Mike got a hospital bed just over a week ago at the suggestion of his hospice nurse. I know that was a difficult decision for him, it would be for me too… we have already surrendered so much to PSP and FTD.

Anyways, this bed has a memory foam type of mattress which is great while he’s sleeping, but it can be difficult trying to get out the bed on his own… because of the sleep depression on the mattress. GROSS ALERT! The other day felt like vomiting and struggled to get out of the bed. He did puke a little but tried to keep it in his mouth I don’t think anyone of us hasn’t done that at one time or another trying to make our way to the porcelain throne. Pam came and kept asking him what was wrong, but he couldn’t open his mouth without blowing chunks on her… I stopped him right there and told him that I could picture that in my mind’s eye. We both had a good chuckle over that… you gotta’ see the humour in that.

I asked him how he managed during the state of emergency the Georgia governor declared a couple of weeks back because of an anticipated winter storm. He laughed that infectious southern drawl of a laugh and told me the story behind the governor’s declaration. Apparently back in 2014 the southern states were hammered by an unexpected winter storm which dropped about 5 inches of snow. Not a big a deal for us in South Western Ontario, but in a state that has rarely seen that type of winter weather it created havoc and shut everything down. Not wanting to be unprepared this time, Governor Deal declared a state of emergency. I asked Mike if the governor had the National Guard on stand-by, he laughed and he laughed even harder when I said “could you picture the Guard standing there, having traded in their M4 Carbines for snow shovels”. Apparently they were supposed to receive 2 inches of snow, but ended up with rain lol.

Mike has yet to have breakfast and Pam is in the kitchen making pancakes and it takes him longer to eat them than it does for Pam to make them. It’s time to say goodbye for now and that saddens me a little, but my spirits are always lifted after talking with him. There’s another bit of consolation also… it’s just as cold in his part of Georgia as it here in Ayr right now, but they have had more sunshine than us.

I always make some time for prayer and reflection each and every day, regardless of how I’m feeling. I’ve been struggling to remember some very poignant words from this morning’s church service. As a rule now, I would normally take out my phone and record whatever it was that I considered important or had inspired me. Obviously, that would be most inappropriate so I’m left to my own memory and you all know by now just how good that is… not lol. Try as I may… they’re gone, just like so many other thoughts, bloody aggravating. I was having contractions in my right arm as well during the sermon which only added to my aggravation.

I recall reading somewhere some time ago about why answers to some very difficult questions are hard to find. Here’s a favourite… why is a strong and decent man cut down in his prime? Why do we continue to experience… often through the news, wars and conflicts that never seem to end? Why do we continue to hear about such tragic occurrences committed by one man against another? Why do evil people prosper? Why are you here? These are but a few questions we continue to ask ourselves and of others. We may never know the answers to all the questions that continue to arise, but God does. Take these questions and more, as well as whatever it is that’s troubling you to the Lord in prayer. How many of us had thought we had prayers gone unanswered, only to later have an ah-ha moment and realized a prayer was answered? God answers all our prayers, but always in His own time and in His own way.

I woke up to the news this morning only to hear about an attack on a mosque in Quebec… 6 dead and 8 injured. When will this insanity stop? I posed the question just yesterday… why do we continue to hear about these tragic occurrences committed by one man against another? More stiffness and soreness 7/10 than usual along with the tragic news out of Quebec does not make for a good start to the day.

Rambling On

I had another visit from the stranger called sunshine today. It stayed around until went I down for my nap, but now that I’m up, it has since disappeared. I received a suspicious text this morning claiming to be the CIBC (bank) claiming suspicious log in activity on my account… I reported it. Then, there’s the other techno scams using your voice pattern to access your accounts. How it works, is that you are called to complete a survey or questions about an account that requires simple yes and no answers. Then by using voice recognition technology they capture your voice patterns and use it to access the account(s) by using your voice.

The next few paragraphs have really nothing to do with PSP… indulge me. I’ve said this before, and I will say it again… technology is a good thing when used for the proper applications, but all too often it is being used against us. Mankind is outsmarting itself, and why… because we can and some business or person(s) will always profit from these “new innovations”. Innovations and increased efficiencies to remain “competitive” almost always lead to workforce reductions. Labour cost is the single most controllable expense in business… I know, I’ve managed and had my businesses over the years. It is a very competitive world today especially in manufacturing, and it is now a global market place. Every business wants to be “the last man standing” when the smoke has cleared and market volatility has eased.  CEO’s, COO’s and CFO’s today, are making obscene salaries and are further awarded performance based bonuses often in the form of stock options, or other creative forms of remuneration.

“Performance based” is a bit of a misnomer, all too often most of the cost savings come at the expense of the company’s workforce and sometimes through real innovation as well. I know that in the business world there is always a new reality… it can change from day to day. Business, like life is simple… people make it complicated. Whatever happened to the premise of controlling all costs… not just labour, such as management salaries, materials costs, utilities, insurance etc. and ultimately growing the business. Maintaining expenses both controllable and fixed with growing the sales will result in a better bottom line… simple, don’t make it complicated.

Picture a time in the future where all business has reduced its workforce by… let’s say 30-50% and that’s not a stretch, it’s often the target. They do this so that they may remain competitive in the market place specific to the product they’re manufacturing or selling. Who will be their customer, certainly not 30-50% unemployed group. If you’re not working then you’re not likely to go out purchase anything other than the necessities. This is where the “last man standing” mentality comes into play, the fewer the competing businesses… the more share of the market place. The fewer the businesses, more of the labour pool not working, not working… the fewer people spending.

There are business leaders out there arrogant enough to say that we have 100% of the remaining available business… and they would be correct. The question then becomes how do you grow your business… you can’t, because there is no new markets. Business is profit driven the best way to improve the bottom line is to reduce costs. Labour is a controllable cost and is always the focus of cost reduction this has never changed and never will.

So, business has reduced its labour costs by… lets’ say by another 5%. It hasn’t grown its sales any, but has possibly realized a 5% increase of its bottom line down the road. I say down the road because there are generally higher severance costs initially when it reduces its workforce. Now you have a 30-55% group of unemployed workers, this same group that will most likely not be buying whatever said business is manufacturing or selling… makes perfect sense right?

When the greatest astrophysicist and perhaps the smartest man alive Steven Hawking, warns about the dangers of advanced technologies, artificial intelligence and the effects it will have on our lives and that includes work as well, I think we should be listening. Thank you for indulging me, I’ve wanted to say that for a very long time and before I would forget it to dementia. That’s my rant for today, the sun has come back out and River wants his dinner.

This last day of January hasn’t particularly started off well for me. I took two cups out of the cupboard for my one cup of coffee… forgot that I had taken the first one out. I then reached into the fridge for cream and grabbed the kefir. I know from before that kefir is not a good substitute for cream. Fortunately Trish was standing there and watching the whole time… duh! My body feels like its’ being lit up like a pinball machine, I think that’s a new slot on the Brain Game Roulette Wheel… two games in one lol. First the pain is in my left hip then my right leg, next it’s my left hand and then the head pressure… perrrfect! Later on at lunch I’m preparing Matt’s breakfast… yes breakfast and went to put his refrigerated medication in the cupboard… nice catch Luba, I would most certainly caught hell for that later on lol.

Well, January 2017 is behind us and it has been the beginning of a new year like no other. The American voters have sent a very loud and clear message to Washington that they are fed up with the same old same old… it needed a shake-up. U.S. politics will never ever be the same in fact… the world will never be the same. Reaction to the new U.S. political reality is fluid. It continues there and abroad, senseless acts of violence abound, financial markets are up… then they’re down. In times like this, we need real leadership of the divine kind and prayers for a world that doesn’t look or act the same as it did towards the end of 2016.

 

 

 

 

The PSP Chronicles

 December 2016

 

The beginning of December has found me very tired and running in circles as the Wheel continues to spin. It started out stiffness and soreness in my lower back, which was replaced leg pain… more in the right one so far. As the day went on I began to experience the head pressure again and more fatigue. It got to the point where I just went up to bed at 9:00 pm, missing tea time with Trish. It wasn’t even two hours into my sleep when I woke, and I mean wide awake. I thought about getting out of bed but I know that would wake Trish, so I lay awake for at least an hour and a half before finally falling back to sleep… fifteen minutes before I heard Cooper’s woof.

I’m sitting here in front of my lap top this afternoon, having gotten up from my nap just a short while ago. Luba told me something over lunch earlier today and I wrote it down, but it doesn’t make much sense to me at the moment. I have a communication book that is there for the PSWs to make notes or comments in for Trish to review later on. There’s a recurring comment in about the soreness and weakness in my legs that they’ve seen over the last little while, and today is no different. I think I’m confusing what she told me and what I actually wrote down… “brain is sending message, but legs are not listening”. As I look at this again, I think what she intended to say was your brain is sending the signal to your legs to move. There must be some static along the way, or as a text that did not send would say Failed. Either way, it’s like the lights are on… but nobody’s home, or as sometimes in my case the sign reads “Vacant Lot” lol.

Bottom line… because of the weakness, stairs are becoming much more of a challenge. As I re-read this some of it still doesn’t make sense, but I’ll leave it alone because I always write down the first thing that comes to mind. There’s no sense in dressing it up or down for that matter, as it’s intended to be a glimpse of what’s going on in my mind and body at that moment in time.

Trish took me to Michael’s craft store in Guelph again this weekend. I needed to get some supplies for a similar project that I’m just finishing up and a few copper couplings from the hardware store for the faucet replacement on the en suite Jacuzzi. Everyone who has done home repairs knows that there is really no such thing as a simple job, every time you start something you discover more work that needs to be done… Trish says that’s just a male thing lol.

Matt was finally able to tag up with a friend… which really means Trish went and picked the guy up in Kitchener and brought him back to the house and would have to take him home. The visit went well enough and Matt seemed to be happy just the same. I don’t remember all that much… there’s been a little more of that lately. I do remember having a large piece of the Blizzard ice cream cake from the DQ. I did do some work on the carving project which probably accounted for a good part of the day, but the rest is a bit of fog to me now.

We had a different minister at church this morning, we’ve had her a time or two before and enjoyed her worship service then, as we did today. I started on the plumbing repair after my nap and had to open up the wall a little more than I would have like to… ugh! New faucet and tub snout installed, I then went to replace the shower head and with one half turn the extension arm broke… you gotta be kidding me!! I guess that must be the “male thing” she was talking about. That repair will have to wait, that’s even if it can be repaired with removing the whole shower… it’s one of those acrylic formed showers, plus the fact that I can hardly move from being in such a contorted position from the faucet replacement.

The beginning of a new week, my legs are feeling weaker. The soreness and stiffness in my lower back hasn’t gone away… probably didn’t help it much by doing the bathroom repair. I have a massage appointment tonight… I’ll get the RMT to do some extra work on the trouble spots.  Come to of it, we had to drive past the DQ and didn’t stop… don’t know how I let that one slip by me. I’ll have to settle for a bowl of ice cream at home when I sit down to watch The Curse of Oak Island. I noticed that the PVR recorded it… cable company must be having a promotion we haven’t had the channel since we dropped the “bundles”.

I’ve been experiencing some confusion this morning. I went downstairs to start my exercises, got out of my pj’s and put my work out clothes on, then proceeded to get undressed again and put my pj’s back on. I wonder if that meant I was supposed to go back to bed… don’t know, this will make it to the Stupid list. I must be infectious Luba did or forgot something… I don’t remember what it was, but she commented that it should be on a Stupid list. I asked her if she wanted me to start another column… one for her and one for me lol.

 

It’s my granddaughter Emma’s 4^th birthday today, my son and daughter-n-law can’t believe how fast the time goes by. That statement is true to be sure, as I laugh and think to myself… try seeing it from my view, she is my baby’s baby. We had a Skype session where I was able to wish her happy birthday from Nana and Papa… Trish is babysitting the other grandchildren tonight.

I completed one of my carving projects tonight, and the other one is near completion. After that, it will be going south to Georgia for my dear friends Mike and Pam. We’re expecting more snow overnight which means that I’ll need to breakout the motorized walker aka snow-blower. I expect that Trish will be getting home late tonight, so I’m going to sign off on the journal now… noting that I have a few more aches and pains in my left arm and shoulder.

The new aches and pains are still with me today… damn Wheel. I won’t dwell on this, I know it can, and will get worse. I managed to get the snow blower greased and gassed up in time for a soon to arrive heavy snowfall… if you can believe the weather station. The driveway is covered with a couple of inches of light snow from overnight. A shovelling will suffice for now and I should be able to manage that… albeit very slowly.  Question: What does a snow plow and a sloth both have in common Answer: They’re both slow moving lol… yes? no?… tough crowd. The next time I’m out, it will be behind the snow blower. Trish has asked me if I had a name for my motorized walker aka snow blower. I have one for my regular walker I call him Willie, I hadn’t but I do now… it’s Sid. Just like Sid the sloth from the movie Ice Age and my Facebook profile picture.

We got up late this Sunday morning and there’s no way that I’m going to be able to get ready for church on time, so we’ll have to sit this one out. It might be just as well, my lower back and legs are really bothering me this morning… about 7ish on the scale. I thought the pain and stiffness might have eased up after I went down for my nap… not so much. I’m going to have a sauna later on and see if that will help any. In the meantime, I have completed the second carving project. I’m not completely happy with either of the projects but I know that I don’t have the same abilities or eye for detail as before, that and the fact I can’t sit too long for any period of time without my body seizing up.

I’m on a bit of a roll… too bad for the Wheel lol. In between blowing out the driveway twice… no thanks to the weather channel who actually got the forecasted snowfall right, I started on a third carving (I of 3) project that I will donate to a CurePSP fundraiser for Mike. The event won’t be held until the spring but I’ll try to them completed before my PSP goes further south. Trish has had to go out to rescue Jack, who was on his way home from work and sort of got his car stuck after trying to climb a hill on the roadway. It seems that when he got his new rear wheel drive Dodge Challenger in the summer complete with sport tires, he never considered or had the foresight to consider how his car would handle winter driving… now he knows.

I have two appointments today at the Cambridge hospital and another for some blood work. My first testing was a CT scan. I thought it was going to be one of the brain, but I was wrong… it was of my chest. The second appointment that got bumped up was actually two tests, an EKG and another set of pulmonary (breathing) tests like I had in August with an additional test for breathing and muscle function.

I thought that this testing would take me well into the afternoon, but because I was able to get “squished” in earlier at the hospital and went to the lab in Paris for the blood work we made it home by noon. Naturally I had to blow out the driveway again, but thanks to Sid I got it all done within half an hour which left me time enough for lunch, meds and a nap.

Given all this snow, I thought about putting tire chains on Willie’s (my walker) rear wheels and skis on the front. There is actually a wagon winter kit that mounts plastic skis on the wheels, why not a walker lol. I started working on another carving for a PSP fundraiser for Mike. I’m sorry to say that I don’t have the same interest in wood carving as I did before. Some might ask then why start a project whether it’s for a fund raiser or something else the simple answer is… I have to finish it.  The wood carving is a good distraction whether I’m into it or not.  Especially when the Wheel stops on blahs and some weeks it’s often.

My back is still bothering me today and I’m having a massage tonight… that’s something to look forward to. Massage is great the problem is that it’s only temporary relief. It’s getting on now in the evening and sleep is calling me… no that’s the phone, probably one of those aggravating telemarketers lol.

I experienced some dizziness this morning… fortunately Trish was right there had I begun to fall. The stiffness and soreness in my lower right side of my back is slowly moving over to the left side as well.  I’m beginning to experience some burning muscle pain in my left forearm and more cramping in my legs. This the first time that I’ve had any burning sensation, the other soreness that comes with rigidity is tolerable for the most part. I know the disease is progressing again it was a nice plateau while it lasted… I’m hoping there’ll be more ahead of me. Apart from the obvious benefits of my exercise routine, I also use it as a gauge to test my physical capabilities. After the first year into the PSP, I had to modify the routine to accommodate the physical changes. I’m hoping to maintain the same level of exercise in order to stay ahead of the disease… at least that’s what I keep telling myself.

Another weather system moved in overnight, dumping another 15 centimetres of snow…ugh! Have I ever said how much I don’t like the white stuff? My dislike of snow is right up there with hemorrhoids lol. My snow blower Sid and I will get a good workout this morning… just to need find a spot where I hang my cane on it. I have a dentist appointment this afternoon after my nap… broke a tooth on one Trish’s famous peanut and chocolate clusters but it serves me right, that’s what I get for sneaking one or two… or more.

Just before going down for my nap, I stopped Trish and put one ear bud in her ear and the other in mine. I pressed play and my all time favourite song Unchained Melody by the Righteous began, and we slow danced to most of the song before my leg began cramping up… damn. I miss the snuggling time we enjoyed together… a CPAP machine, face mask, hose and  night time medication are not conducive to romance… neither is this disease. I miss my wife and I her love dearly… I hate this PSP.

I spent an hour in the dentist’s chair as he x-rayed and placed a new filling… more like rebuilding the troublesome tooth. I’m glad it’s done though it was starting to become sensitive to hot and cold. The cramping in my legs that I had experienced earlier during our spontaneous dance made its presence known again, as well as the other rigidity when I tried to get out of the dentist’s chair. Ugh, like I really needed to be reminded… thank you for that PSP.

I continued on with my latest carving project after dinner, it’s a work in progress… just like me. Ah! I stand corrected… I’m a work in regress lol. Anyways, I’ve made some changes along the way… really there mistakes but the work is still close to my original idea. If I can remember to, I’ll post a picture along with December’s blog. I’d put a message on my phone/recorder but I can’t remember where I left it, maybe it’s with the ketchup… don’t ask lol. Had a fall tonight… tripped over the dog, couldn’t see him at my feet. Good thing for muscle memory and break-falls… saved me from a face plant.

I got up this Sunday morning to get ready for church, first feeding the dogs and cats and then having breakfast myself. The time was getting on, so I went upstairs to wake Trish and came back down to the kitchen and started to empty the dishwasher when I was struck with the worst back spasm I’ve ever experienced. It felt just as bad as the episode I experienced on my left side, a couple of months back… on the stiffness scale it was a 12 out of 10. To make matters worse, my tree stump of a leg(s) felt like they were being pulled in opposite directions. I slowly made my way back upstairs and to my bed, where Trish set up the heating pad and helped me into bed. The combination of heat, rest and a Tylenol seemed to have helped but there is still some lingering soreness. This episode was a little concerning for me, but Trish is visually upset.

We went over to Chris and Liz this evening… it’s his 35^th birthday today and it was a great chance to see our grandkids. The Curse of Oak Island that airs on the History Channel has begun its 4^th season a little while ago. You may recall earlier on in my journal that I talked about reading an article in Reader’ Digest about 50 years ago that caught my interest. The series is a great distraction from my issues, which allows me to remember a much simpler time as a 10 year old boy wanting to go on a quest looking for treasure. Over the years the quests have changed, they’ve come, they’ve gone. Only this time now, the hunt is not about gold and riches, this time the quest for treasure is in finding a treatment or a cure for PSP and all other neurodegenerative diseases buried deep within the brain.

This week hasn’t started off all that well for me. There are lingering effects from my back episode on Sunday and my legs are beginning to tire out after going up a few stairs instead of a flight of them. It’s been a bit of a back-asswards day, putting things away in the wrong place, some confusion and oh yes… I forgot to take my meds at dinner time. Trish was out to dinner with her co-workers and I’m normally good about taking them without prompts, but this time I forgot…oops.

The day wasn’t all that bad though, I finished up the relief carving of “The Whimsical Chef ” theme projects for a PSP fundraiser that I’ve been working on for a while now. I’m happy enough with the results given the challenges I face. I took a stroll down memory lane (40 years at least no short cuts… I’d get lost lol) to a time when I worked as a student in a local hospital’s Dietary Dept. I remember the Executive Chef, an Italian fellow whose name was Fred. Anyways, Fred was a happy fellow, always singing, whistling and even danced a little bringing enjoyment to everyone who worked with him. Our baker often called him whimsical, a name that stuck with him… the whimsical chef.

The Whimsical Chef  theme began as an idea that I came across in a carving magazine using old wooden objects you could find around the house. My first attempt was with a wooden rolling-pin, a gift that was intended for my dear friend Mike in Georgia. That piece was challenging enough… working on a rounded surface, but I was pleased with the results. It was then that I came up with a number of ideas around that theme and just waited for an opportunity to begin working with it. Mike’s daughter Jennifer contacted me a while ago about making something from a person(s) afflicted with PSP, for PSP fundraising. I am only too happy to help (while I still can) and came up with this new project, which have spurred a few more ideas around The Whimsical Chef © theme.

I took a break from everything tonight and sat in my lift chair and enjoyed a wee dram of a very nice 15 year old single malt scotch. Trish brought home an iPOD (mine is acting up) today on loan from the local chapter of the Alzheimer’s Society. I’m going to go through the playlist as I journal here. Music has proved to be a valuable form of therapy for those afflicted with dementia, the only trouble is that the 110 song playlist is hard on the battery.

This is a crazy time of year as most people know with Christmas fast approaching… 4 days from today. I feel bad for Trish as this an extra burden on the heavy load she already carries, not to mention the family dinners and all. I’m probably not helping matters any, and just like last year I’m just not into the spirit of the season or much of anything else for that matter. Cooper is still with us and in declining health we can’t seem to make Matthew understand that his beloved dog is struggling… I pray that he makes it past the Christmas season.

I have ever said how frustrating short term memory loss can be. I was bringing River in from outside through the garage when I had a thought that I wanted to act quickly on, but by the time I got up the ramp and into the house I completely forgot what it was… gone!!! Sometimes I wonder what is more challenging, the PSP with its physical difficulties or the dementia with its cerebral challenges. Either way, its’ still SSDD… same shit… different disease and I hate both of them.

It’s just a few days away from Christmas and I’m getting anxious and overwhelmed with everything going on. There is terrorism on the streets of Europe, continued threats of more violence, military conflicts in the Middle East and on and on. Then there’s Matt, who cannot seem to comprehend the price of the things that he says he needs to further grow his YouTube Channel, which can earn him money through advertising revenues and sponsors. His wants continue to grow daily and it seems like there’s no end to it.  It’s amazing that he is able to set this whole thing up in the first place and we don’t want to discourage that, as this is a learning opportunity for him and he’s picking it up quickly.

Truthfully, the Matthew matter is only part of a larger issue which is connected directly to the PSP. Mood swings and a seemingly lack of interest in much of anything do not produce good results, especially at a time of the year when you should be feeling festive. That warm and fuzzy feeling just hasn’t come knocking on my door, well at least not the warm part… the fuzzy feeling is always around because I can’t be bothered shaving. I have medication for the mood swings, but they’re times when it’s just not as effective and sleep disturbances don’t exactly help matters either.

The Friday before Christmas and all through the yard, there are sticks and doggy landmines, not quite the picture you would see, on a pretty Christmas card… that’s all I’ve got lol. For the last several years at the Wescast Christmas shutdown, I had a tradition of sitting at my fire pit keeping warm and enjoying a hot chocolate with whipped cream followed with a scotch or two… I call it my “scotch-ish” tradition. Although I can no longer work, I try to keep the tradition going and today was perfect for celebrating, which I did… it’s now officially winter.

Well, the “scotch-ish” tradition was the best part of my day. As the evening wore on that all too familiar pressure in my head has made an appearance. That, and the animal circus act is just a little too much to bare at the moment, so Trish and I are going upstairs to have our tea time and catch a show. I couldn’t tell you what we watched, but I do know I went straight to bed after that.

Twas’ the night before Christmas and all through the house, all the creatures were stirring… especially my spouse. The stockings were placed on the couch and the chair, with hopes that Santa would leave some stuff there. The clock has struck 10:00 and I must take my meds, which means shortly after I’ll be off to my bed… to be continued next year maybe lol.

I placed a call to Mike this morning down in Georgia Christmas morning to wish him and Pam a merry Christmas… as you read on, you’ll see that was one of the best parts of our Christmas day. Trish’s sisters Marg, Nancy and our niece Jodi are joining us for Christmas dinner tonight. Dinner and preparation was very busy… added extra stress on Trish. David blew us off for Christmas dinner, deciding to be with friends and my daughter Julie called and cancelled her plans to come down on the 27^th. I can’t recall a time when I’ve ever seen Trish so frazzled… I know that with all that is going on in our life is leaving her very overwhelmed. After dinner we played Jingo… Christmas version of Bingo and it’s actually “fun” to play. I think this activity, next to my phone call to Mike, was probably the best part of the day. Matthew actually came upstairs, sat a few feet away from the group and played his new Nintendo DS… that’s the closest thing to socializing for him, but we’ll take it.

The morning has started off sloth-like with plenty of confusion and the stiffness is 6-7ish. Trish gave me a “moist” heating pad for Christmas which provides some relief from the rigidity and soreness… what a wonderful thought but truth be known, she just wanted hers back as it was on loan to me. Karen is here today, even though Trish is here. I want to stay as close to my routine as possible while Trish is off, we have learned from the past it’s the best thing to do so I don’t get all screwed up. Chris, Liz and the grandkids were over to visit for a planned dinner and to open presents. Today was a little easier than yesterday, and it’s always good to see the kids who gave me a printed T-shirt that reads Best. Papa. Ever.

Luba is here this morning and apparently she likes the relief carving I made for her for Christmas. All the time I was working on the piece she was eyeing it and thought it was for Mike. I made two, one for Mike and one for her… I think it’s safe to say she likes it. All this aside, my legs… muscle cramping, contractions seem to be getting worse and my knees… ugh! My hands… what I really need the most, are getting stiffer so much so that I’m stretching and doing finger presses before I even begin my exercises. I’ll see how the “old” body will feel after my routine, lunch and nap are out of the way. The rest usually helps but not always… the BRG Wheel dictates that.

I messaged Pam on Facebook early in the evening to see if they had received the package that Trish had mailed for me a week earlier. She responded that they hadn’t yet, so I asked Trish to track it on-line and she told me that it arrived at its destination just before 4:00 pm today. I didn’t know if that meant it was delivered to Mike’s house or to the local post office in Moreland, Georgia. I messaged Pam back and she decided to check again and found the package, which was a special relief carving that I began and completed for them this month… I think they’re happy with it.

I woke to my alarm that I set for 7:00 am, my right eye opened up about 10 minutes later. My hands aren’t working for me so well at the moment… the typing is a bit of warm exercise. When Karen arrives, I’ll begin my exercises paying a little more attention to my hands than usual. When its Christmas time there is plenty of baking and extra treats around my house, one look at my waste-line will confirm that. So will Karen, as I read her notes in the PSW communication book suggesting that I really like my chocolate… you think lol.

I’m going for a massage tonight at 6:00 pm, so dinner and my meds will be earlier. Since I’ve already had my medication, it’s pretty much guaranteed that I’ll be asleep on the table… not much different from any other time. I’ve told Holly, the RMT about the areas that need more attention… especially my hips and legs including my knees. We have to pass Dairy Queen on the way home so naturally, I’m going to have to use my DQ gift card I received for Christmas. Some people might question ice cream in the winter, not me or the other 6-7 cars in the parking lot.

I think I left my brain at the door when we came home tonight. I was making Matthew’s protein shake that he gets at night which includes a fibre supplement. I caught myself almost adding Robitussin instead of the Metamucil, just as I had caught myself going to put toothpaste on the Dremel rotary tool with a wire brush on it instead of my electric tooth brush after lunch today… duh!  Now, before anyone asks, what was the Dremel doing in the bathroom sitting next to the toothbrush? The short answer is… I was charging it. Had I used it instead of the toothbrush well, let’s just say it would have done a better job at removing any plaque as well as gum tissue and any fillings… that’s another one for the Stupid list lol.

The snow flurries the weather channel predicted for overnight turned out to be a little more, no surprise there. We woke up to beautiful winter wonderland of fresh fallen snow… 8 centimetres worth. All that beauty is now lost on me, as I go fire up Sid and go blow some snow… ugh! Well that’s done, time to get my chores out of the way as Luba will be here soon to supervise my exercises and lunch. Nap time was a good 2 hours today, lately it’s been off.  That old PSP feeling… rigidity, sore joints, eye issues, constipation, mood swings and then some have all returned. It’s too bad that I can’t have a massage every day, that’s when I feel my best even it’s only for an hour. As the evening wears on so do the blahs, hoping tomorrow is a better day. I just want a cup of tea with Trish and call it a day.

I’m experiencing contractions in my left hand today and my left hip is sore and stiff, in short my whole left side is one big issue… ugh!  As Luba leaves today, she tells me that she’ll see me next year and I think to myself what? It took me a little bit to process that before I realized that the next time I see her on Tuesday of next week, it will be 2017.

When I wake from afternoon nap I always have a coffee and would typically go outside to my sanctuary for some reflection and prayer time. During the winter months I try to find some place quiet in the house for this time, and in my house that’s not always easy. Today I’m sitting in my lift chair having my coffee when my mind takes leave, and I began watching a slide show playing in my head. It’s actually more like a review over the years including 2016 and now playing is family, places and events… all the highs, and all the lows. If I had to pick the best highlight, I would say it was the PSP fundraiser for Mike at the end of April in Georgia. It was a wonderful meet and greet. My son Sean and I have never been made to feel so more at home anywhere as we did this visit… we came down as friends, and left as family.

We have the grandchildren over for the weekend, so there is sure to be Scooby Doo and Pokémon marathons to watch. The recent snow fall is the packing kind… ideal for making a snowman, snow forts etc. whatever their young imaginations (including Nana) can come up with. I purposely left out snow ball fights, as someone always ends up in tears and we don’t need to be scolded by mom and dad lol.

So, it’s the last day of 2016… not a particularly banner year. There was family, loved ones and dear friends who passed this last year. My PSP has progressed… slowly but steadily. I am thankful for that, but I also share in the sadness of family and caregivers to a number of people in the PSP community who have lost their struggle to this rare and terrible disease. This makes it even more important to raising awareness and funding research for all neurodegenerative diseases. Researchers are now taking a more collaborative position on such research, as a breakthrough for one disease could lead to a back door opening to the others.

The grandkids were up early as usual, which is fine as it was the time to feed the dogs. Both of eyes opened at the same time this morning, and other than the increasing rigidity the day is off to a good start. I’ve had the occasional bobble wobble today… no different from most days, I just don’t mention it that much anymore. As the day wore on, I had a few more cerebral hiccups… not going to go there though.

I’m praying that 2017 will be the year for a medical breakthrough for a treatment leading to a cure for all neurodegenerative diseases. The very successful social media Ice Bucket Challenge for ALS (a Parkinsonism like PSP) back a couple of years ago raised an enormous amount of that went directly to research where researchers had a breakthrough discovering a gene connected to the disease.

Celebrating the New Year to me means getting to bed by 10:30 pm. and just waking up in the morning the same way I went to bed the night before… hopefully lol. I’ve turned on the new so the grandkids could watch the New Year being ushered in around the other side of the world. But sadly again, there are reports of more acts of terrorism, military conflicts and controversy around every corner. I’m going to re-run the essay on intolerance once again as it is as meaningful now, as it was the first time I included it in the Chronicles. Intolerance by Dr. Napolean Hill * if you are familiar with this essay you’ll see that I have taken a little literary license and changed it up a bit to reflect today’s reality.

Intolerance

When the dawn Of Intelligence shall spread over the Eastern horizon of human progress, and Ignorance and Superstition shall have left their last footprints on the Sands of time, it will be recorded in the last chapter of the Book of Man’s Crimes, that his most grievous sin was that of Intolerance.

The bitterest intolerance grows out of religious, racial and economical differences of Opinion.  How long O God, until we poor mortals will understand the folly of trying to destroy one another because we are of different religious beliefs and racial tendencies?

Our allotted time on this earth is but a fleeting moment. Like a candle we are lighted, shine for a moment, and flicker out. Why can we not learn to so live during this brief earthly visit that when the Great Caravan called Death draws up and announces this visit completed, we will be ready to fold our tents and silently follow out into the great Unknown without fear and trembling.

I am hoping that I will find no Jews or Muslims, Catholics or Protestants, Blacks, Reds, Yellows or Whites when I shall have crossed the bar to the other side. I am hoping that I will find there only human souls, Brothers and Sisters, all unmarked by race, creed or colour, for I shall want to be done with intolerance so that I may rest in peace throughout eternity.

So, as 2016 comes to an end and 2017 begins, I’d like to leave you with a few lines from Come and find The Quiet Center by Shirley Erena Murray to consider or even make it a personal mantra:

Come and find the quiet center, in the crowded life we lead find the room for hope to enter, find the frame where we are freed.

Clear the chaos and the clutter, and clear our eyes that we can see all the things that really matter, be at peace and simply be.

Happy New Year…may it be a good one. Blessings

The personal account of one man’s journey of living with a rare and terminal neuroegenerative disease for which there is no treatment or cure called Progressive Supranuclear Palsy… PSP and Frontal Temporal Dementia… FTD