A message from John, who has PSP.

This beautiful article was sent to us by one of our community, John Royer, who has PSP. Thank you John, for sharing these words. 

PSP is a shortened version, an acronym for Progressive Supranuclear Palsy. It’s a tough name to say. PSP is easier. It describes what I have.

The life span from diagnosis is anywhere from a few years to seven years. Of course, some people live longer than seven years.

It is a very annoying disease but like anything else it can be laughed at with impunity. So let me tell you my story.

2014

We were on vacation. We were following the tour guide when suddenly I started to lean to my left. I could not straighten up for fifteen minutes. I had to depend on my wife to hold me as I tried to walk upright.

One day, on one of my walks I was proceeding down a steep hill when I started to accelerate. I could not control my walking. I could not stop and I could not slow down. Eventually I fell and managed to struggle to my feet and get home.

Ironically, a man a few feet from me saw me fall and immediately went into his house. He did not come out again.

Go figure…

I went to my doctor and got a diagnosis of Parkinson’s disease. Wonderful, I was going from bad to worse. He prescribed something called L-Dopa. That was disaster personified. The medicine gave me a psychosis that made me feel that my wife was running around on me. That was pretty funny since, in retirement, we were always together plus we were in our early 70s and we had been married since 1968 without any issues of infidelity. I quit taking it on my own and the psychosis disappeared.

My wife was relieved because she was really getting sick of my stupid ideas.

I felt like a jackass.

2015

I started to have falls at home and could not get up without the assistance of the ambulance corps. The police helped also. This necessitated a trip to the hospital followed by CAT scans which showed that there was nothing wrong.

When my wife and I took short walks she would ask me to look at something to the left or right and I would get annoyed. She thought I was being rude. I told her that when I looked left or right I started to lose my balance and feared falling.

I started to notice that I had a new problem which was hard to explain. Standing up became hard and balancing as I stood up was just as aggravating. Either I was getting heavier or the force of gravity had increased. Knowing the laws of physics I decided that that wasn’t the problem. The earth remained the same. My weight was the same so it wasn’t that either. I was at my normal weight of 215 pounds. I used to be 5 feet 10 ½ inches tall but gravity had shrunk me to five feet 9 inches. Gravity could do that due to spinal disc compression but it couldn’t account for the fresh problem of standing up and keeping my balance.

I wished I was Sherlock Holmes so I could account for this anomaly.

I was most annoyed.

I noticed the same thing happened when I mowed the lawn. One time I got on my knees to adjust the height of the wheels and found that I couldn’t stand up. I looked around to see if anyone noticed my dilemma. Luckily there was no one outside. I tried to use the handle of the mower to stand up. It was very difficult to do because as soon as I leaned on the handle, the front of the mower tipped upward. I had to lean on the front of the mower and the handle in order to get to a squatting position. Then I had to slowly stand leaning slightly on the handle so that it would not tip the mower. Eventually, I stood up only to see the building in front of me spin vertically. Everything in front of me was going down. I had to stand for a few seconds until the world stabilized.

I must have looked like a real idiot.

Looking up after looking down became a fearsome experience. I tried an electrolyte drink and drank half a bottle before cutting the grass and half a bottle before cutting the rest. It seemed to work. But it did not last. I went to my doctor and he suggested taking an antihistamine before I started the lawn. That helped a little bit but it didn’t continue to aid me. I ended up going to a neurologist who suggested that it was my diabetes. That didn’t make much sense to me. I continued the same way and life became very confusing. Perhaps it was my circulation. Perhaps it was my old age. I didn’t like that idea. I started to pay someone to cut the grass and agreed to have him do the snow when it came in the winter.

It seemed like Mother Nature was playing a joke on me.

I decided that Mother Nature was a jerk.

My Doctor now told me that I had an inner ear problem and I went for vestibular therapy and started taking Meclizine. That didn’t help either so I stopped the medication. The therapist also said that my inner ear was fine.

My dizziness upon getting up and turning my head rapidly got worse. Double vision when I looked left and right started up and really messed up my attitude. I had never taken illegal drugs and I don’t drink so that wasn’t it. Perhaps I was going nuts. I decided that driving was not a good idea and gave it up.

I told my wife that I didn’t want her to worry because I saw two of her when I looked to the side. When I looked at her to the right or left I saw two of her, one above the other. She asked me which one looked better, the top or the bottom one. I told her it was the top one.

We both laughed. We were so stressed that we had to do something silly to diffuse the tension.

We got an appointment with a cardiologist and I stopped taking walks. I got a cardiac catheterization test. He called the next day and told me that the test that he had given me was terrible and asked me to stop in. He told me that I had severe blockages and that I needed open-heart surgery the next day. This was of course an unsettling experience. But I went ahead and had the operation. It was an awful experience which I will not be discussing here.

They sent me to cardiac rehabilitation and I felt that I could barely walk so I got a walker from them. I progressed superbly and after about a week was sent home with a walker.

All the previous problems got worse. My unknown ailment had increased, something that I understood happened sometimes after open-heart surgery. My current disease exacerbated. It went with the territory because open-heart surgery was an extraordinarily severe surgery.

After arriving home, my serious illness got worse and I went to a wheelchair. Eventually I ended up at an eye doctor who specialized in unusual problems and he suggested that I see a doctor down at the University of Pennsylvania who specialized in weird problems.

An M.R.I. was performed. The Penn specialist read it and from him I heard the fateful words. “You have Progressive Supranuclear Palsy (PSP) and it will kill you.”

He even told me how to spell it.

I was overjoyed.

Most people don’t know how they are going to die but I did.

Falling was an interesting experience. One day I was trying to use my walker. The wheelchair would have been better. This was a bad idea but I am a stubborn guy. The police/ambulance corps was called many times to pick me off the floor and get me on to a stretcher. The ambulance rides were always interesting. I got to meet new people and get a free ride. Then it was off to the CAT scan room because I usually hit my head when I fell and had to be checked out.

Lots of falls.

I joked a lot with everyone because it lightened the mood.

2016

However, another MRI scan showed that I had had a stroke at some time unknown to them. Eventually I started to get flaky and used irrational words on my wife. That really got me down. In February I decided to end it all. My insulin would do the trick, I thought.

Dumb idea.

Another ambulance ride got me to the hospital and I stayed a week in the psych ward and was treated for extreme depression and despondency. I was told that the odd thoughts were caused by the stroke.

This was fun.

I had a new problem.

Life was grand.

I started working out at a rehabilitation gym that has helped me greatly. I started with a week of official rehabilitation and then graduated to the gym on my own. It is a great place with lots of friendly people some of which are in worse shape than I am. I walked around staggering from machine to machine and worked especially on my legs to help with my walking. I can use 400 pounds on the leg press machine that has strengthened my legs tremendously. I still have my terrible times in the morning when I get up and get dizzy and I stagger but I manage. I can even get my own breakfast now before my wife gets up. It is a real joy staggering from countertop to countertop but somehow I manage to do it.

Some days I can’t wait for Mary to get up and get my breakfast for me.

Life is much easier that way.

Eventually, I no longer needed the wheelchair except for long visits to the store with my wife. Short excursions necessitated the walker. At home, I just walked and I look like Frankenstein’s monster with my bad gait. PSP gives you really stiff legs when you’re walking. Your knee barely bends.

I tried eye therapy but I soon gave it up after a few months. I can only say that it is a waste of time but it is interesting to see that the things that they have tried to use for PSP on a computer screen can be fun as well as work. Beveled lens glasses can correct the left and right double vision but when your vision changes, as it will, you have to spend more money for new glasses.

Not a great idea.

2017

The University of Pennsylvania requested that my regular doctor send them my medical progress probably because of my unusual ailment and their research needs. I agreed because if I can help in the conquering of this miserable disease I shall.

In the meantime I have to joke about the double vision. It is the funniest part of this disease.

For example, seeing two cars on the left or right coming toward me. That really convinced me that I cannot ever drive safely again. My wife was my chauffeur permanently. I will not risk our lives and the lives of innocent people because I think I’m tough enough to overcome my disease and its consequent double vision.

At least I can still read and I am a voracious reader. Straight-ahead vision gives me no problem and for that I am grateful. I also can use the computer as I’m doing right now which is super.

Not bad for a 71 year old guy with PSP and diabetes.

A good thing is that Mary is a retired nurse and my best friend. She is a great wife with a super sense of humor.

I hope you have enjoyed my narrative and I hope you have laughed now and then. My purpose for the interjection of humor is because it is futile to spend the remainder of your life feeling sorry for yourself.

Funny is good.