Personal Stories

New Hobbies

New Hobbies

Carl James
Springfield, MO

I was diagnosed with Parkinson's disease almost exactly 5 years ago. I am now 61.

My first symptom was shaking in my right hand when I tried to do something precise like use a screwdriver. I also started having trouble using the computer mouse in my right hand. I could not double click my mouse fast enough. I had had some shoulder joint problems on my right side so I thought that might be the problem. I am left-handed but was one of those people who did many things right-handed. I spoke with my Internal Medicine physician continually about my symptoms. My tremor in my right hand became more pronounced and took on a more rotating pattern. My next symptom that I noticed was a gradual loss of my sense of smell. My physician sent me to an ENT specialist and he gave me some long drawn-out diagnosis that meant only a loss of sense of smell when I looked it up. By this time I was thinking, but not wanting to believe that I had Parkinson's disease.

The next symptom that came along that my wife noticed was a slight scuffing motion in my right foot. I had had it with my doctor and pretty much demanded he refer me to a neurologist. He actually went to some computer diagnosis program which said the next step should be a CT scan of my brain. He had this done but referred me to a neurologist. I had to wait 6 months for that appointment.  Before going I sat down and typed up a list of symptoms I had experienced. This was very hard to do because they collectively lead down that path to Parkinson’s.

When I finally got to see the neurologist, He did some cursory physical tests and seemed almost absent-minded. He glanced at my list of symptoms and went out to a computer to look at my CT scan.

He came back in, sat down, (uh-oh) and said, "Do you know what you have?"
I said, "I think I have Parkinson's disease.”
"You are right,” he said, "I could tell by looking at you when I first walked in." He left me alone and I cried a little while. He immediately put me on Requip.

I went to the car and called my wife and we cried a little together. She and I went home, talked and cried, and I actually went back to work for a meeting. I guess I was at that instant formulating my philosophy for the rest of my life.

I was an architect and had left my firm of many years to take a position with another firm as second-in-command. It wasn't going very well because everyone resented a new boss and my new boss was a cold little guy. My old boss began making hints and moves about coming back to take charge of the hotel department. That had been my previous job there only on a lesser scale. He offered me a large sum to do it. I remember the day I told him about the Parkinson’s disease. He was sympathetic but told me he wanted my mind, not my drawing skills. I worked for him two years and when it got so that the stress and lack of manpower was creating an apathetic attitude in me, I asked to go on a four-day week. I tried this about three months, all the time checking into SS disability and my short-term disability policy. I had practiced architecture for 40 years and was burned out anyway. And besides, my goal had always been to retire at 60.
I left a $90,000 a year job taking the chance I would get SS disability and my short-term disability.  I was awarded both.

I had taken stock with myself after the diagnosis and had decided that I had a choice of two paths to travel. I could wallow in self-pity and ask "why me", or I could spend the rest of my life living day-by-day doing the things I had always wanted and living a quality life with my family members. I chose the latter. I was never a very positive person before but I am now because I must. I am not a religious person. I believe in no diety. Therefore, I resent no god for giving me this or letting me get it.  My feeling about myself is that I am an insignificant complex bundle of intellectual, electrical energy that is a particle in a vast mind-blowing universal intellectual energy. That gives me comfort.

I developed several creative hobbies over the years. I have been an avid photographer for many years. Nothing gives me more peace than to go out early on a soft misty morning and photograph. I am getting to be fairly well known in my home town because of my photo exhibits. I also began doing genealogy about two years ago. That has put me in touch with my extended family. And my most tentative endeavor is poetry. I loved poetry in high school and was pretty good at it. I have written several the last few years but have been showing them to others only the last year or so. My most daring venture in the final stages is publishing a photo book with a few of my poems sprinkled in it. It is called, AUX ARCS Black & White Photography of the Ozarks Region and is available for pre-order at Barnes and Noble and Borders Music and Books.

I showed my publisher my poems the other day and am beginning to think about a poetry book.
I have found new freedom because I care a lot less about what people think. I have become more politically active and write what I think to the editor. I would give most anything not to have Parkinson’s disease except I would not give up my new burst of creativity and my new-found freedoms.

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