Update from John Royer, PSP Correspondent

Categories: News, Volunteer

This is article seven from John Royer, a man living as humorously as possible with PSP.

Last night I was wondering about a cause for PSP.

I thought about the fact that since I was born in 1945 I have been inhaling radioactive dust along with everyone else alive today. I also considered other factors. There are preservatives, genetically altered food and organisms, byproducts of radioactivity, living longer than ever before, genetics, and a higher incidence of x-rays, CAT scans, and MRIs. There is also the possibility of plain old CHANCE.

For every effect, there is a cause. The problem with neurological diseases is that a cause is elusive if not impossible to find. So far, a cure has been impossible to find as well.

This morning, I had a tendency to fall forward and decided to use the transfer wheelchair and feet to safely move around the house. Even though I fear falling, I have noticed one thing. I don’t get hurt except for a bruise but the furniture gets destroyed.

To date I have demolished two wooden TV trays that have my sleep apnea machine on them. Luckily the machines were not damaged.

On a good note, I get to meet lots of interesting people, a ride in an ambulance, another CAT scan (good or bad, I don’t know), and lots of tender loving care from the nurses including my wife. So it’s not all bad but it’s hard on my wife.

My family isn’t very crazy about it either. Nothing funny here, unfortunately.

Why is this tau protein not doing what it’s supposed to do? It was fine all my life but now in the last few years it has gone crazy (if you can call a protein a living entity that has sanity in the first place). There has to be a cause and in all honesty I have to say that I do not consider it a result of chance. Someone considered that it might be and mentioned it to me but after due thought I considered that to be possible not at all.

To my knowledge, there has been a cause discovered for every disease. Therefore, there must be one for PSP. The cause and the cure have to be found.

There I go again, getting too technical.

Mary will hate proofreading this article and offer to slap me on the head.

She says it often but doesn’t do it.

So all I can do is deal with the effects of PSP. The University of Pennsylvania and others are trying to come up with a cure and I applaud their efforts. Perhaps they will succeed…

…and I will stop falling and breaking furniture.

I’ve taken to wearing a patch over my right eye and the bird sleeps on the right side when we watch TV at night.

I look like a pirate walking on a rolling deck as I walk across the living room.

The reason for the eyepatch is that I can see the screen better. The sofa is off to the right so I get a double vision of the TV screen. When I have a patch on the right eye, on my left I can see the screen perfectly. It takes some getting used to because my right eye projects a bit of the vision of the eyepatch.

I often wonder what I look like to someone walking by who happens to look in the window. The pirate with an eyepatch and a parrot.

Ironically there is a large model of a sailing ship, the CUTTY SARK, on the window sill.

Speaking of birds…

I have to watch when I walk down the front ramp because sometimes birds perch on the railing and poop. I have to look ahead and beware of having a crappy outcome.

Birds can be most annoying at times.

Concerning going to stores…

Always take a good book because sometimes the electric wheelchairs (if there are any) in the stores are taken and I have to hobble back to the car and start reading. Never being charged is another problem with them. It’s kind of funny when you think about it. You can’t drive a car but you can wheel around an oversized contraption the size of a lawn tractor in confined spaces. When I do use one I fear running into someone and always move at a very slow rate with my wife in front of me so I don’t lose her.

These electric carts make you feel different about life. Shelves are suddenly higher. I feel like a groundhog poking his head out of the hole that he lives in. Backing up is dangerous because you have no rear view mirrors. The constant beeping is annoying but it is a good idea for pedestrians because they know you’re coming back.

Staying in the car and reading a book is safer but it’s lonelier. I like seeing people and for the first time in my life I like seeing things on shelves. Shopping is a way of getting out of the house and giving your wife some freedom. She could take the wheel chair out of the back of the car but I avoid asking her to do that because it is very heavy and I prefer the store’s machine or a book in the car.

All this nonsense because of a stupid disease called PSP. I feel like PSP is a living organism and is an ogre.

A good thing about PSP, if there is such a thing, is that it shows the innate goodness of people. Sometimes my wife takes the wheelchair out of the back of the car and helps me to get into it. It is amazing the smiles and the help that you get at a door that does not automatically open. I’m glad that I help people feel good about what they’ve done. And I feel I’m more connected to strangers. People walking through the store look straight ahead and really say hello. When someone holds the door they always have a greeting and a smile as do I.

Just as there are two ends of the magnet, the positive and negative, there are two sides of PSP, both good and bad. It’s good to think of the good, hard as that may be.


More CurePSP News Here