Volume 1

Yesterday, I read a report from my Speech and Swallowing Test from October 2015, outlining some of the difficulties I’d been experiencing and concerns that we had. Swallowing issues or dysphasia is one of the symptoms of PSP and is a real concern. Weakened throat muscles could cause me to choke and even aspirate, leading to aspirated pneumonia, two of the major causes of death in patients with PSP.

That was a difficult test to take. The thought of having the scope snake through my nose and down my throat was enough to make me gag, and worse yet, the actual procedure did. It still does, even as I think about it now. The technician ended up using a nasal mist to freeze the area to complete the exam. Before the examination began, I first had to eat and swallow several test foods prepared in different consistencies to see what I could tolerate. She had placed a stethoscope to the side of my neck and listened to my throat muscles as I ate each of the test samples, each time making notes on her chart. No choking on my part this time – good – but she noted some muscle weakness.

Now the worst part of the exam was about to be begin. The technician did a series of checks making sure the instrument was properly calibrated, the light was working, and the monitor was in the correct position, so Trish and I could see the procedure. The nasal violation began. Up my right nostril – every inch felt like a foot – and slowly down the back of my mouth. It was then I learned I had a strong gag reflex. I don’t recommend gagging with a scope up your nose and down your throat to anyone.

 

Volume 1

Thursday had seen me travelling to London for my much anticipated Botox injections… Yeah right! On my first appointment with Dr. Hyson, he explained the injection procedure… I was squirming on the inside.

It seemed to take forever, but I’m finally at his office for the first treatment. There are five injections to each eye. Three pricks on the bottom eyelid, and two on the top one.

Imagine if you will, the smell of cold rubbing alcohol swabbed over your closed eyes, the prick of a needle and then the feeling of cold hard steel going across the
length of your eye, and oh yes don’t move ugh! That’s what it feels like, and to think that I’m going to get this treatment every three months from here on out… oh joy!

Don’t get me wrong, Botox is very effective in treating the insane spasms. I had hoped that there might have been another way… nope. Guess I’ll have to suck it up and have been doing so ever since.

Future Book Excerpt

 

I spent the better part of Saturday morning on catching up on emails and updating my author website and the Facebook author page. Author – mm, literally I guessed I was, but I don’t see myself as a brand – The PSP Chronicles. At some point, I might consider writing a piece of fiction, but for now, I would have to settle for the real deal.

My focus, besides writing, was trying to come up with new ways to raise awareness, fundraising and support for PSP. Just to be clear, whenever I discuss fundraising initiatives for PSP, it also includes CBD and MSA.

It’s kind of mind boggling to me, as to what people will share on social media and make the posts go viral. Watching a parrot bobbing up and down to a beat or a cat challenging itself in a mirror are funny enough to be sure. Some of these posts get well over a million shares. I came up with a videoed fundraiser and awareness event for PSP named The PSP Triple Crown. It was a good idea that would make you pucker up, cringe and shiver.

See:  https://www.youtube.com/watch?v=06ntLIxQZJA

In the two weeks since it was posted,  it had received  fifty-nine views. No one  can donate to every cause and there are many deserving out there… I get that. All it takes is a simple click of a mouse on the Share button to make the post  go a long, long way on social media to raise PSP awareness. Sounds like sour grapes some might suggest… no, but the lemon/lime sure was (:

Future Book Excerpt

Perception

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