Friday, December 14, 2007

Tim, part V, Spotting Parkinsons

Spotting Parkinsons

The most important thing that Tim had taught me was how I had failed him.
I didn't know him well enough to tell him what he needed to hear and I shortened his life. He would be alive today if I had spoken up. I will never make that mistake again.
My sister Leslie and I grew up with Parkinsons disease. My father was diagnosed at 35 years old, so ALL of my memories of my dad are a picture modified with the broad brush strokes of parkinsons.
You may have noticed that people with downs-syndrome look like brothers and sisters of other downs-syndrome patients more than they look like their mothers and fathers. Well Parkinsons patients all develop the same “look”.
Leslie and I can pick out Parkinsons patients from a crowd. My older brothers can not spot the symptoms because they were already out of the house when the signs developed.
I would see Tim once in a great while at Birthdays or Funerals and it was obvious to me that poor Tim had Parkinsons. What I was too stupid to realize is that just because something is obvious to you, does not mean it is obvious to everyone else. I would see Tim deteriorate and feel sad after seeing him, but I never mentioned it to him because I assumed that he already was being treated.
Then there was the summer of funerals. All of us were getting together once a week to bury another family member and I was spending more time with Tim. I realized that I was never being asked to hold his tilted drink while he fished pills out of his pocket. Was it possible that he wasn't taking pills? Hadn't anybody noticed that Tim was aging at five times the normal rate?
I was still a wimp, so I talked to his brother Wink.
“Isn't Tim being treated for Parkinsons?”
“You DO know he has it, don't you?”
I still remember Wink looking over his shoulder at his brother Tim. At that moment, Tim was standing by himself, hunched over, and trying to juggle a plastic cup of punch while stuffing something sweet up into his mouth trying to avoid having too much falling onto the floor. Wink looked back at me with the lightbulb look. “You know, SOMETHING seemed wrong.” and we started tossing things back and forth. “I told him that Tim should get treatment immediately so that the aging process can be tempered a bit. Wink was still assembling pieces of the puzzle that explained why Tim would take five hours to do something that he used to do in twenty minutes.
That evening I received a phone call from Cousin Ann telling me that they had all discussed Tim that evening and wanted to thank me. I felt good temporarily.
Tim went to the doctor for a “test”.
The doctor asked Tim to walk across the room, Tim did, and the Doctor said “You've got it!”.
Tim started treatment, everyone adjusted to the new Tim. The rapid deterioration was squelched, but a huge amount of damage had been done. He had already skipped thirty years and he wasn't going to get them back. I want to cry when I see the porch pictures of the family hanging on walls of the cottages and comparing them. Tim ages five years while everybody else ages one. If I had spoken up to mention what was obvious to me (but not to anyone else), Tim would have not lost as many years.
During this same time period there was someone in my car club that obviously had Parkinsons too.
I vowed that I would confirm that they knew about it the next time that I saw them, but it was too late. She had a very rare, very aggressive variation that destroyed their life within a couple of years.
Since I learned my lesson with Tim I have been more “aggressive” with my amateur diagnosis.
There is a chance that I am wrong, the person finds out that they are okay and is angry at me for the rest of his or her life that I scared them so much for absolutely no reason, but there is a reason: My cousin Tim. If I spot the symptoms in someone that I know, I WILL tell them. For Tim.
What I am still struggling with is whether I should ever tell people on the street. If they already know, they don't need to be reminded by some jerk walking by, but what if they don't know?
I have never done it, but it tortures me every time.

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