A new article from John Royer, our PSP correspondent, our man on the inside, questioning the causes of PSP.
It is June 16, 2017.
I start today with the same Frankenstein movement and dizziness as on every other day.
In other words, I am a mess.
As the day progresses my dizziness diminishes and my gait improves. It remains unexplainable as to why this happens every day.
Today is an exceptional day and I am amazed
We go to a farmers market/antique store in the countryside for some fresh produce at excellent prices. We do this every now and then to save some money and also to have a nice country drive. When we get there my wife starts to open the trunk to get the wheelchair out and I say to leave it, that I will walk. She looks very skeptical but acquiesces to my request. As we go inside and walk around looking at the various displays and food stands, I find that I am walking normally, although not as fast as anyone else. My wife keeps watching me to make sure that I don’t fall. I manage quite well and am quite pleased with myself.
When we get home, I notice something extraordinary. I am walking perfectly and at a normal rate without having to think about it. In the farmers market, I walked okay but I still had to think about what I was doing. This had happened a few times in 2017 but it was rare and I appreciated the fact that it was another one of those days when things were going right.
I know that the next day will probably be as all the others but for now I am enjoying normality in walking.
Enough of that subject.
Now it is the next day, June 17.
I was correct. Today is another bad day, the first of four. Yesterday was a fluke.
I get to thinking about my past illnesses and wonder if they might have caused this despicable disease.
Please let me relate my early life and you decide. Do you think that general anesthesia sets the stage for PSP?
I was born on November 15, 1945, the year of the first nuclear explosions.
I started out in life in a sad state. I was blue.
I don’t mean that I was sad.
My middle brother told me that when I had been born I had been a “blue baby.” That means that the umbilical cord had been wrapped around my neck and I was bluish in color due to lack of oxygen.
I started life in sad shape and I will end my life in sad shape. What a development!
Later, I also developed something called “Baby Asthma.” I don’t remember the age that the asthma kicked in but the number four seems to stick in my head. I remember waking up at night gasping for air with the room spinning. I had to immediately sit forward to relieve the pressure on my chest.
It was a unique experience because I got to taste whiskey for the first time in my life. My mother would make hot tea and put a teaspoon of Vicks in it, followed with a small amount of whiskey. This was a home remedy and was the only thing available for asthma. You have to remember that this was in the late 40s and early 50s. There was no asthma medicine. I got small sips from a teaspoon. I remember that my father’s father would carry a flask of whiskey with him in case he had an asthma attack.
And no, he was not an alcoholic.
I cannot remember how I felt from the whiskey and I wish I could.
It was probably great.
I could breathe again and feel silly at the same time.
Later in life, atomizers were invented that had epinephrine in them and would clear up the asthma attack quickly. Later I would have the shakes from the epinephrine but it was better than choking.
Life was a lot better after the invention of the atomizer.
Later on, I went to the typical litany of the flu, measles, “German” measles, mumps, and a lot of colds.
I also had whooping cough. It almost wrecked my mother physically. My father made a wooden framework and put plastic on top of it. My mother would run downstairs to boil water and come upstairs and put it in my “steam tent.” I don’t think she ever slept.
I don’t remember getting any whiskey and that’s a shame.
I survived once again.
In third grade, I got an appendicitis and had my appendix removed while under general anesthesia, the first of many.
But a blockage developed.
Amid much annoyance on my part they shoved a very small balloon up my nose and down my throat to try and pull the blockage out of my intestine with a pump. Each day, they shoved it in an inch or two farther into my intestine. After so many days, the doctor said that the next day he would have to operate and because I was so weak the chance of my survival was slim. There were a lot of tears from my parents and my two brothers. Luckily, that night some drainage started to come through the tube in my nose into a container that was clear. It looked awful. I was spared another surgery.
I was saved once again.
That same brother told me later in life that my father had to put the house up for mortgage in order to pay the hospital bill of approximately one month. My father never told me because he didn’t want to put pressure on me for being sick as a kid.
My father was quite poor and my mom was a housewife so the mortgage was a terrible financial burden
My parents were very caring people.
Incidentally, that was first time that I had general anesthesia, the first of many times. Just a thought to remember.
Along came grade 6 and, along with it, came Rheumatic Fever. This involved at-home care by my mom once more and daily visits from the doctor. My brother never mentioned it, but this probably involved another mortgage because I was flat on my back for almost a month. I survived and tests later showed that I had not developed a bad heart, something that sometimes happened after rheumatic fever. Once again I don’t think that my mother ever slept more than a few hours at a time.
Luck seemed to be following me once more.
After that I had my tonsils and adenoids removed under anesthesia. That was the second time for anesthesia and I was not yet in junior high school.
I have to also mention that for both illnesses, nuns came to the house to tutor me when I was at home. Because of their efforts, I never missed one grade in grammar school.
Finally, in grade 11, I got a case of Pleurisy. Once again, I managed to get that out of the way without anything lasting except, I think, scar tissue on my left lung. Life progressed and I was happy.
In my early 40s, I developed Type 2 Diabetes. I started pills and everything seemed to be going well. My sugar was under control once more and I was content Around. Many years later I had to go on insulin but I handled that without any problem. In the meantime, the good thing was that I went from 250 pounds to 210 pounds, a weight that I maintain today.
However, finger pricks and insulin injections are not my cup of tea.
Then I was under attack once more in the early 80s. A cough sent me to my general practitioner, then to a dental surgeon who saw white spots on the underside of my tongue on the right side. He gave me a light anesthesia (more of that stuff) and took a small sample. I woke up and he got me to walk into his office and sat me down. He looked white and told me that it appeared that I had a form of precancerous growth called Leukoplakia. I was rather stoic and told him that he looked worse than I probably looked. He was very young and said that it was the first time he ever told this to someone and he felt terrible about it. I assured him that I would beat it. I was used to be beating things of a medical nature. He sent me to a general surgeon.
Anyway, the new surgeon gave me general anesthesia (there’s that word again) and gave me a more extensive biopsy. I got to talk to him afterward. He said that I didn’t have cancer and that the white spots, the Leukoplakia, would possibly go away and that I should go home and keep a watch on it.
That was a totally unacceptable answer so I talked to my family physician and he mentioned a surgeon in New York City who specialized in unusual mouth and neck problems. This was in 1985. This guy was so internationally known that I had to be interviewed by his nurse on the phone in order to find out if he would take my case. The clincher was when I told the nurse that I was a teacher. She relayed the message to him and he said that he would take me as a patient. She also told me that he had turned down heads of state and wealthy men and women because he decided who was worth more to society and he evidently thought teachers were worthwhile. I told the nurse that I was humbled and she said, “You should be.”
We went to see Dr. Conley and he was in a building right by the Museum of Natural History. Central Park was across the street. We had to push a button and identify ourselves before we would be admitted to his office.
Strange. New York was different than the Lehigh Valley.
We sat for a while and after a while a man walked in looking like a Scottish Lord in his plaid clothing and hat. He looked like a real character and my wife said, “I bet he’s the doctor.” She was right and when we talked to him we realized we were speaking to a highly intelligent man who was quite sure of himself. He had a sense of humor and we felt at ease with him. We made an appointment for surgery after a brief examination of my tongue.
On the established date, my wife and I arrived in New York and checked in at St. Vincent’s Hospital. It involved a lot of trust on my part because the doctor was in his 80s but didn’t sound like it or look like it.
The first thing that we saw was a man tied to a wheelchair being wheeled down the hall and escorted my four really big dudes. We were amazed. A nurse later told us that the man probably had snuck into the hospital to steal drugs. He was to be delivered to the New York cops. Because of our surprise, she said it was obvious that we were not from New York City.
No kidding. We were Hicks from the Lehigh Valley of Pennsylvania.
We asked about a big guy sitting by a closed door and were told that there was a person of note inside who did not want any reporters to be pests. He looked like a very serious bodyguard.
While we walked the hallway we saw that there were signs by closed doors that said that entry was not permitted without a facemask. He asked about that and we were told that it was a patient inside the room who had AIDS. Boy, was that a shock! Everybody thought that you could get AIDS by being in the same room. This was 1985 and AIDS was terrifying.
Back to the room we went.
And stayed there.
We were told that Dr. Conley had a whole floor reserved for him.
He also worked at Columbia University.
What kind of guy was this?
Dr. Conley arrived and told me that the white spots would not have just gone away. They would have turned into cancer. He told me that cancer of the tongue spreads quickly throughout the body but that he would cut the pre-cancer out and save my life. He smiled as he said it and I immediately trusted him. As luck would have it, he told me that a local anesthetic was all that was needed. I was to be spared general anesthesia and I was happy about that.
The next day, I was giving a sedative to calm my nerves and wheeled into the operating room. The doctor acted like a general, giving orders right and left. I was impressed. His assistant was a Major in the Army and he worked at Walter Reed Hospital and was training under Dr. Conley.
Now I was really impressed.
He injected my tongue with a local anesthesia.
If you have never had that done, believe me, it is a fun experience.
A few hours later he came into the room and talked to me at bedside, my wife sitting aside of me. “You did well, John, and you’ll be fine. If it ever comes back, come see me again and I’ll cut it out.” He explained that he did the research and wrote the books that the surgeons in the Lehigh Valley read and learned from.
On a funny note, my wife took walks over the few days that I had in the hospital (I had contracted a fever and I had to stay until it receded). It’s located in the Greenwich Village area of New York City. On one of those days she walked into a local market and saw four guys who were Japanese and wore leather caps like the ones that the World War I pilots wore. They each bought one apple. She figured there was a movie set somewhere.
I wondered where the airplanes were.
Security was tight and she had to check in just to get through the front door and come upstairs to visit me. I was in over New Year’s Day and remembered distinctly hearing some car coming down the street far below with its occupants yelling “Happy New Year.” Suddenly a voice screamed “Shut the hell up. I’m trying to sleep.”
Such was New York.
Then in 1995 the white spots, Leukoplakia, came back along with red lumps, Squamous Cell Carcinoma, which were erupting from the skin and burned when I ate certain foods. I learned that Dr. Conley had retired and went to a local oral surgeon and told him my story. He assured me that he had read books by Dr. Conley and knew how to take out a small section of my tongue without taking out a third of it which had been common practice years ago. Being a teacher I needed the ability to speak and I was too young to go on disability. I went under general anesthesia (again) and he cut out the red lumps and the white spots. I went home and he called me the next day and said that he didn’t quite get it all and that I would have to wait a month and come back. I did and went under general anesthesia (again) and he did some more cutting and told me that he got it all. I could still speak and had at least 95% of my tongue intact and I could still taste as well as before.
I’d like to add a footnote. After all these tongue surgeries, it hurt like hell to try and chew anything. I got soul wrenching pain whenever I moved my tongue around and the pain pills didn’t help all that much.
A strange thing happened.
I learned to like baby food.
I could swallow it right down without chewing and believe me, it really does taste good.
Then came PSP.
I told my wife that in the stages of PSP that I would enter later I would appreciate baby food rather than puréed food because I had a pleasing encounter with it after my tongue surgeries.
For the story of how my PSP got started, go back to my first article and you will be able to read about it in great detail.
Ironically, on Thursday my Neuro-ophthalmologist told me that my eye movement had improved greatly since I saw him two months ago. He told me to forget the two month schedule and come back in four.
Go figure! Why? Magic?
Perhaps I will be lucky once again and a cure will be found for PSP before I die of old age.
My eldest brother is 86 and going strong. My middle brother is 80 and doing well.
I would like to beat their current records and live to be 100. I am 71.
Longevity is a very good word.
Today is June 20, 2017 and I have a question for all of you who are reading this.
Do you think that it is possible that the general anesthesia that I received so many times possibly contributed to my PSP?
Or is it possibly the radiation that currently floats through the air all around us?
What is it that produces this deadly disease?
Was it because of my past illnesses?
I refuse to believe that is it is purely chance.
For every effect there is a cause.