PSP and a Stroke Make Things Interesting

Categories: Support News

The latest article from John Royer, as he thinks about the effects of PSP on his body and mind.

It is July 8, 2017 and I have absolutely no idea of what to talk about.

The only thing that can rectify that problem is to let my mind wander and see what it will come up with at random. Let’s see, the first thing I think about is a candy bar.

No help there.

Now I think of writing about a short description of my recovery from my second stroke and then some random opinions about PSP.

I’ve gotten back to writing but have to check my work a lot. Having a voice recognition system helps a lot because it takes care of spelling for me. Spelling has been a problem for me since my second stroke.

On Wednesday, July 12, I start speech therapy and that should be interesting. I felt that I could recover on my own but my doctor insisted that there are methods that are used that I am not aware of. I respect my doctor and will take his advice. I ask you your indulgence in forgiving me for any errors that I may make. I will rewrite this but I cannot guarantee that it will be perfect.

Okay, let’s look on to the other subject that I mentioned, PSP.

Let me now refer to things you have mentioned in the comments that all of you kind people have given to me over the last few months. I started to read about CurePSP when I was diagnosed years ago but only got personal in the last few months since I started writing my little articles/stories.

Here are some of my summaries, my completed thoughts based on friendly commentaries from so many of you from many countries. One person who is furthest away is from New Zealand. People who speak Spanish have communicated to me as well. They come from South America and Mexico and the United States.

I have noticed a number of common problems, that occur because of PSP, among the people I have communicated with. I will try to remember some of them correctly as well as I can. I consider them all to be friends in adversity.

There is a guy who has PSP who cannot read at all and yet he can drive a golf ball. Because of his eyesight disability, his ability to putt is terrible. In my case, I can read although with difficulty of coherence because of my difficulty in making any sense out of a sentence. He also has pain in his one eye but I have none at all in either. He can also walk properly but my gait is terrible. Two guys with different eyesight and gait problems. PSP is indeed a variable disease.

So many ideas, so many thoughts.

So many prayers.

I appreciate prayers. They help a lot.

One of the things that I have noticed is that the longevity of a person with PSP varies greatly from a few years to many years. The reason for that is a mystery.

Some people have irrational fears about nothing or about something that is just barely troublesome. I admit to my having the same feelings at times. Medication helps and is mild.

And no, I do not take marijuana.

I don’t even drink except for diet soda, milk, coffee, and water.

I am a very boring type of fellow.

The majority of people have sad stories and talk about their family member who is in the end stage. This is hard for me to read and I think often about my own future. I hope that I will die of something like heart trouble in my sleep.

But, in the midst of all this, there still is humor

PSP has never given me a problem with words. I am grateful. My stroke has really done a number on me but it has also given me an opportunity to laugh along with my family.

No kidding, it really has.

Here are some examples.

My wife is sitting at the sofa and I went to ask her if she would like to sit on the chair. What comes out is “do you want to step on the floor?”

Similar situation. I ask her if she wants to sit on the chair. What comes out is “do you want to sit on the char?”

These chairs are very weird things.

Go figure.

But to go back to the PSP…

Some of my pen pals have a lot of trouble when we get things missed up. Luckily we have a lot of empathy for each other.

Many people say that their family member has swallowing difficulties. They use something called puréeing. From experience with tongue cancer in 1985 and 1995, I learned that baby food is already puréed and actually tasty. Tongue cancer cuts create very much pain when you try and eat. With baby food you can just let it slide down. I strongly recommend it if you have difficulty swallowing. They have a large variety of products so you can avoid the irritating of lack of flavor. I hope that has been of value to you and I know that I shall do it when the time comes for me with PSP.

Having recently spent some time in the hospital starting June 23, I have to make the observation that hospital beds stink. It is hard to get at the controls if you have any difficulty of movement. I have an adjustable bed that I paid for and it is great. The control is like a TV control and you can easily see everything on it without contorting yourself to get to the control on the hospital bed. Medicare doesn’t pay for it but I prefer it to the type of hospital that I have. It doesn’t have sides but I don’t fall off so I’m not worried about that.

I would like to see more comments if possible from the victims like myself. It’s nice to be able to commiserate with a fellow victim of this terrible disease. From what I understand, not many victims like to express their feelings or have the ability to do so. Perhaps caregivers could simply write down or copy what the person is saying. Of course some victims will not be able to do that and I expect I will be in the same position eventually. Therefore I heartily recommend the following comment: funny is good.

Funny is always good.

No matter what.

The primal feelings still work even though the intellectual process has been affected. I saw this in my mom when I used humor to get her out of the shell of silence that she had gone into. It was a risk but I had nothing to lose. The risk turned out to be a victory and for a short period of time she was happy. She wasn’t exactly happy from an intellectual point of view but she was happy from a primal point of view. For a short period of time life was good for both of us. The difficulty is in inaugurating the humor and knowing that the victim cannot initiate humor. It is a worthwhile endeavor as far as I am concerned.

I have related all of these ideas to my families and hope that they will remember to use this knowledge when I seem unable to communicate intellectually.

I do not have any fancy decrees in psychology or psychiatry and all I can order on the menu is what I have already said.


Funny is good!