This article by John Royer, our dear PSP correspondent who sadly passed away in September, is the last PSP article he wrote. John’s insight and ability to voice the experience of having PSP has brought comfort and solace to many facing the same journey, and he is dearly missed.
August 28, 2017
I started to think about how PSP had started and I came to the conclusion that the onset had occurred a lot earlier than I had thought. On or about 2005 I remember starting a shuffling which I thought was just a lazy habit of dragging my feet on the smooth tile floor of the school where worked. I thought it was kind of cool for some stupid reason and only really noticed it when the right front tripped and I almost fell a few times.
That would have really looked stupid, tripping and falling on a tiled floor of a school building.
I went happily on my way until my wife started to notice that I was dragging my feet as we went for a walk. She could hear the grit on the sidewalk or the street being moved as I walked. She told me to lift my feet or I would fall and why did I do it in the first place? I said that it was just a bad habit and I would be more aware of it in the future.
I started to notice a slight blurring of vision on the left and right when I moved my left or right eyes. It wasn’t until after retirement, and its subsequent traumatic shock of not having a job, that I noticed a distinct double vision on the left and right. I never paid any attention to the drifting foot but I certainly paid attention to the vision problem. I decided not to tell my wife because I didn’t want her to worry about an old age problem.
Around 2013, I told her about the vision problem and totally ignored the walking problem. We went to a neurosurgeon and she said that it was my diabetes acting up.
In 2014 it came to a head when I cut the grass the first time and noticed that when I looked up the world was violently rotating in front of my television whenever I stood up from mowing. This was so bad that we agreed that mowing the grass and snow-blowing the snow was out of the question in the future. We started to get really worried and got a diagnosis of Parkinson’s disease from my general practitioner, he gave me L-Dopa and it gave me a psychosis, something that commonly happens with Parkinson’s disease medicines. I stopped taking it and we ended up at a neurologist optometrist who diagnosed PSP and sent us to the University of Pennsylvania for a definitive diagnosis. I set up a regimen of reading about PSP and was definitely in for shock. The only good thing that happened was that I discovered CurePSP and its good works.
I now had found the reason for the shuffling and the vertigo and the left-right problem and the problem with walking to the left or right when walking and tending to lose my balance. All of this intensified after my open-heart surgery in 2015 and the rest is history from my articles. I apologize for not having a regular chronological list of events but I can only read out my facts as I remember them.
Now back to the present day, August 28, 2017.
Here are some things that I have found out in my dealing with the federal government and Medicare. Never buy anything of a mechanical nature from them and present the bill afterwards. They will find any excuse that they can for not paying it. Is over six months since I purchased a handicap chair. It has an electric lift to help you get up and down. It cost about $500, less actually. It is over six months and I’m still fighting with them to pay for the electric chair motor. One person actually lying to us and told us that it was paid for and that a check would be forthcoming. My wife waited a month and called and was told that that was not true. We went to our congressman and he went to Medicare in Philadelphia and they said that a form had not been sent. The medical suppliers sent it back and Medicare came back and said that a date was wrong. The revised day was submitted and my wife waited another month and was told that it’s in the process of being reviewed. It is now the end of August and the chair was purchased at the beginning of February. If you go for a wheelchair or scooter that is electrical don’t buy until you have approval from Medicare or you may get burned. Our taxes do not necessarily go to where you think they do if you get my meaning.
Sounds like the Veterans Administration, doesn’t?
I know of a lady who was a claim adjuster for an insurance company who shall be remaining unknown. She said that her standing order was to reject all claims and hope that they go away. She wasn’t supposed to give the reason for the rejection. I will not use the name of the company because I do not wish to get the woman in trouble and I do not wish to get sued by some high-priced lawyer.
An insurance person who I know also said that during a far-reaching event there are two adjusters. The first one gives you a low settlement amount. You have to contest it. Then you will get the real adjuster will give you the truth. We actually were through this and experienced what the man said would happen.
Is this funny?
Is it laughable?
I wonder how the people in Texas are working out with their adjusters. I hope that everything has been corrected and that people are being honest in the insurance and construction industries as these people face their futures in a state of dismay.
Back to PSP.
My recover at the time from my stroke on June 23 is progressing at a good rate and I hope that this article is reflective of that.
As far as PSP is concerned, my walking is the major issue. I struggle from one thing to another in the morning when I get up and most times have to get on the transport chair to maneuver from the bedroom to the kitchen. This requires fighting with a pair of sneakers which I need for traction. Feet and socks do not work well on hardwood floors. It appears sneakers are the only way to go. The only problem that I find is reaching things. I am so glad that Mary is often up before I am so that she can set the things for breakfast up for me. I don’t know what I would do without her. I get little better as the day progresses but I still am looking for something to grab ahold of as I stagger around the house. I’m glad that it is a small rancher but I will dislike it when anything gets moved. Those of you already in wheelchairs know exactly what I’m talking about. I’m glad to have hardwood floors rather than a rug because of the transport wheelchair difficulty of movement. I will glad to have an electric wheelchair. I will have to maneuver the same path around obstacles as with the manual wheelchair but at least it will be easier to do.
So except for walks, or rather staggers and falls, PSP is letting me alone. My eyesight remains the same. I do not have pain in my eyes, neck, or legs. I am not bedridden in a body that will not move. I can still look down, I can still read, I can still use the computer, I could still speak, and I can still think.
I think, therefore I am.
I don’t remember who said that but it makes a lot of sense to me.
Funny is still good.
The monster PSP does not like funny. It does is not find it good.
The monster chops at me and chops at me but instead of getting huge chunks of me it only gets small pieces and for that I am glad and revel in the fact that the monster is getting a good fight right to the very end.
Dear monster, remember this old saying:
You can kill a person but you cannot kill an idea.
FUNNY IS GOOD!