Volume I

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 I

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.

I spent the better part of Saturday morning on catching up on emails and updating my author website and the Facebook author page. Author – Hmm? 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 (:

Volume II  Keep On, Keeping On

Just in time for the Holidays. eBook edition is now available on Amazon. The paperback will be a little while longer after the print-ready files are processed. Be sure to have read Volume I, the story picks up where it ended.

The pond clean involves a load of work but the best part of it; I finished it without knocking over the stacked rocks that formed up the waterfall.

I plugged in the pump. Nothing—nada. Checked the GFI outlet—working… hmm? I checked the electrical connection from the pump to the buried conduit and the outdoor extension cord. Still no issue with the connection, I discover a split in the cord at the rear of the pond behind the waterfall.

I can’t tell if the rocks enclosing the cord damaged it. It’s difficult to see without moving the stones. A voice inside my head said; No bloody way, my back concurred. My best conclusion is a critter has gnawed through it. The likes of the unidentifiable carcass I found at the bottom of the pond.

It took me two hours to clean and refill the pond. There is a time constraint the pump won’t be working today. Trish has called me in for lunch and reminded me not to forget to take my meds. I can’t go any further, I’ll get washed.

First, I need to get up off my knees. I’ve been on them for two hours. After a few grunting and groaning attempts, I got up off the ground. I look and feel like the Hunch Back of Notre Dame. I washed up and had lunch.

Getting up after my nap is difficult too. The same little voice who spoke to me earlier said; That’s why you have bed rails. Great! The little voice is a wise ass. I don’t need to listen to its shit, Trish is sure to give me an earful. Did you over-do it? No, well yes… whatever. After I got out of bed, I took one of those showers you never want to end. It’s safer and more convenient for me to use a shower chair – I can’t stand, instead I sit watching the muck, grime, my misery and pains swirl down the drain.

I got up early the next day to give myself enough time to repair the pump’s extension cord. The fix is complete it’s time to plug it in. Yea… it works. It’s nice to hear the soothing sound of the waterfall. One minor problem though, the running water has made me want to pee. I hope I can make it to the house. If not, I have my Depends shield – my leaking bladder fail-safe. If need be, and if it works well enough, I’ll consider writing a testimonial to its absorbency. Good news, I made it to the bathroom. Bad news, I won’t be the Depends poster boy. I’m sure more opportunities will be available in the future.