False alarm and PSP awareness, by John Royer

Categories: Support News

This article, was written in August by John Royer, our beloved and cherished PSP correspondent who sadly passed away on Sept. 10, tells us about the progression of PSP, but still contains that indelible spirit we have come to love.

False alarm and PSP awareness


It is Tuesday, August 1, 2017 and I have just finished another round of time in the hospital. The doctors thought that I had had another stroke. Let me tell you how the events started.

It was a beautiful Sunday morning in late July.

The day started out as an average day and my wife said that we should go to a small park in Allentown and we could do some short walks.

Once I managed to get out of the car I had trouble walking into the park and asked my wife to take her laps and I would sit on a park bench and feed squirrels. We had brought along some bread and some slightly outdated cherries.

I had used up the bread and decided to start the cherries. Mary had returned to the park bench at that point. One squirrel in particular took a liking to the cherries and quickly ate off a few, which was quite an accomplishment considering the size of his stomach. My wife commented that he was going to have gas later in the day.

Picture leaves and branches erupting from a hollow hole in a tree amidst a rocket propelled squirrel flying through the air.

We noticed that it was a nice day but families were glued to their cell phones.

Two old gentlemen were chatting as they walked laps.

At least someone was attuned to nature.

One nice young lady and her child did say hello. That was nice.

Back on subject now.

I was leaning to the right and my wife suggested going to the emergency room of the local hospital. We thought I had had a stroke similar to the one on June 23.

I quickly had a brain CAT scan and a chest x-ray. Other than the pronounced leaning to the right they could find no other symptoms so they asked me to stay and get some extra tests because of my recent stroke in June.

This went over like a ton of bricks.

The people in hospitals are really nice but another time in the hospital was always boring and not anything I look forward to experiencing.

Needles were not to my liking either.

The MRIs were done on Monday afternoon.

I had a lousy roommate who was not very talkative. When I said hello to him, his face looked like it cracked in four different places. I was glad when he left.

The second was a rather nice chap.

I enjoyed speaking to him.

On Monday, around 9:30 at night a neurologist came to speak to me. I thought this was an odd time to have a doctor coming to see me but times change. In any event, he was a nice guy and asked an awful lot of questions about PSP which I did my best to answer. He established that he wanted to do a lot of physical tests and I agreed. I got the distinct impression that he was as mystified as I was about PSP. It is, after all, an extraordinarily rare disease. He impressed me and I told him so and he was happy to hear that. He even agreed to talk to my wife on the phone when I told him that I trusted her memory better than my own because of my stroke. He had a nice chat with her. I would say that the whole interview lasted a good half hour. It was nice to see that degree of interest in an ailment that was practically unknown.

The MRIs showed that I had not had a stroke. The leaning cause was unknown and would remain so. It was considered a fluke of having PSP, a disease that does its own thing on its own schedule. After the MRI, a gentleman from the company that made this thing that had been surgically inserted in the skin under my chest skin in June arrived to check the operation of his device. It showed that I had not had any a-fib. I think it is spelled Arterial-Fibrillation.

I think I spelled it correctly.

Don’t ask me what that means because I don’t know. I was told that if it occurs it can indicate that a stroke is imminent or has happened, according to the current theory.

Sometime on Tuesday morning another neurologist arrived with two young ladies who appeared to be interns. He was also quite nice and conducted a lot of tests and asked a lot of questions. He also appeared to be quite competent and he was also learning all he could about PSP.

This was now four neurologists in two days.

PSP was definitely on their radar.

I was glad to have been involved in their interest in this deadly disease. I mentioned CurePSP to all four of them and told how to get access on the Internet.

I’ve given the name of the neurologist’s organization to CurePSP in order to show them as a resource for victims of the monster disease.

I told the doctors that I wouldn’t take their time if I leaned to the side again and they responded that if I saw strong indications of an ailment, like not being able to read in June, that I should immediately go to the emergency room.

They agreed that PSP must be an arbitrarily variable type of disease. At least PSP was finally listed as a possible source of my symptom. Progress was advancing in the recognition of the dreaded disease, the monster!


I wonder how far the squirrel went before he hit the ground.


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