Friday, May 20, 2005

My uncle Donn has Parkinson's disease. My dad has a touch of it, too, but Donn's case is pretty acute.

A few weeks ago he underwent a new treatment. To make a complicated procedure overly simple: the doctor placed a wire on his brain that short circuits the tremors. Then they had him stop taking his medication. He did real well for awhile, then suddenly his tremors came back with a vengeance. So, I emailed Cousin Steve to see how he was doing.

Steve has a simple, direct style that often cuts through all the bullshit. And sometimes he says something so clearly that I am in awe. Here's his (slightly edited) reply:

I checked in with Dad after his Dr.'s appointment on Wed. He was too tired to come to the phone. I completely understand.

As a result he and mom came by yesterday and he looked as good as he had been since the surgery, but they increased the dosage on the medication where before they decreased it, and he was having a real rought time controlling the other tremors in his body. Again this is a result from a withdraw sympton from the Parkinson medication.

For the first time my Dad put it in perspective yesterday and let us know the real deal in front of my mom who made the comment that Parkinson's isn't just shaking, dad said: "Yeah, it also makes you feel crappy...."

Dad had told me that Parkinson's not only affects tremors etc., it affects the way he thinks. He had a procedure to correct the tremors and was also taking the medication that controls this part of the disease. As with all medications you adapt and as a result have to increase the dosage which runs risks of addiction etc. (Now you know why they banned ephedra from the health/fitness market, it wasn't the ephedra it was the fact you had to keep taking it after adapting and run the risk of heart failure.)

Which brings me to the point of this email: My Father, You Uncle and friend and family member has Parkinson's disease. To this date there is not a cure, but with the help of Deep Scan Brain Stimulation, drugs, my mother and everyone else in the family there is no reason why he can't enjoy his life. But Parkinson's will always be in the forefront that is something my mother reminded me this week that we all have to accept. All of us wanted him to be cured with the DBS procedure, all of us want something to make the pain go away and all of us also hope we don't get it.

This is not the case with life and we deal with it the best we can. Dad has been struggling but he looked great yesterday, I'll take him like that anyday. I will also take him when he is shaking and when things are bad (it truly does not bother me to see him that way except that I know for some reason he is embarrassed by it). I love to see him wearing his watch on his left hand, I love seeing him having a conversation, I love seeing him being able to play tennis or work on his computer, things he loves to do. Regardless of Parkinson's I love seeing him, if he is shaking or not. I don't mean to get too mushy but when he was at my house yesterday these were the feelings I had that I wanted to share with you. In my opinion, he has good and bad days, but he is doing just fine. I'll take him either way.

I light of all of this, Please stop by The Michael J. Fox Foundation and give them a ten spot.


Blogger Stormwind said...

My forty-something brother-in-law has Parkinson's (several years now).... his manifested with an increasing lack of ability to move and the appearance of a stiffness in his gait and motions, rather than the usual tremors as the first step. It grows worse as time goes on. I work in the rehab field and know what the possibilities are for the next stages and all the different ways it could continue to change his quality of life. It is a difficult disease to live with for any individual and heartbreaking to see a loved one deal with. But we love them no matter and only wish the best for them. Thanks for posting a link to Michael J. Fox's org. They and others like it, have great links and will hopefully push the right folks to find a cure. Good luck to you and yours.

1:44 PM  

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