Parkinson's Disease Tulip


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Old 05-15-2009, 10:06 AM #1
jcitron jcitron is offline
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Join Date: Sep 2007
Location: Haverhill, MA
Posts: 480
15 yr Member
jcitron jcitron is offline
Member
 
Join Date: Sep 2007
Location: Haverhill, MA
Posts: 480
15 yr Member
Default It's been awhile. How's everyone doing?

I know I haven't been around in awhile. I've been trying to "deal" with my PD and ignore it the best I can. This is a rough road to follow, but what else can I do at this point?

I came back from another storm chase about two weeks ago. We covered around 5,600 miles in 12 days. It was quite the trip and I did pretty well for most of it until the last Thursday of the trip. On that day I was quite stiff and had trouble with my balance. I ended losing my balance and falling when I got out of the van at a rest stop. I was lucky that someone was behind me and caught me as I went backwards. That same day also presented a problem when I put my luggage in the back of the van. There was a slight slope, which I was quite aware of, but when I carried my luggage, I got pulled backwards by the weight of it, and couldn't keep from falling backwards. I didn't fall, but I looked really foolish.

Anyway, travel is both a good and bad thing. The van ride wasn't so bad, but flying sucks to put it lighly. The long walks to the gate and the overall stress of the ordeal I found quite exhausting.

On the piano front, I'm doing quite well although I've noticed a big drop in my abilities from 3 years ago. The music is good for my soul and for mobility particularly with my hands and arms. If only I had what I had then now, and I thought that was bad, I'd be flying high on a silver cloud right now. But alas, this isn't the case and I have to play slower and play things with less movement to them. Such are the breaks I guess.

In the mean time, since I last posted here, I've been going for V-B12 shots again. I was quite low even though I was taking the supplements. My LPN thinks I may need shots the rest of my life. My PCP and I were discussing this. He thinks it's due to my MMA levels being too high. My folate is good though, which is a good thing.

I also went for my cognitive study and the results are pretty good. I'm not losing my brains yet. They're just oozing out slowly. Basically the doctor told me that my cognitive functions are still intact, but my speed is slowing down. I took much longer to complete the tests than normal, but I completed most of them. This of course makes me look like a twit when I'm in a meeting or a group discussion because I can't respond back quickly like I used to. By the time I can spit out my thoughts on a subject, everyone else has moved on to a new one. This is where I feel left out in live conversation, but excel online in an asynchronous environment.

Overall I'm doing pretty good on most days, with the usual good days and bad days thrown in. On the good days I feel normal and can conquer the world, but on the bad days I feel like I can't get out of my own way with the painful bicep muscles, spasms, overall stiffness, and fatigue. The minimal tremor i have is in my chin and right lip, and on the side which is most affected. I have the masked feeling on the right side and across my forehead, and feel it mostly when I'm off.

Anyhow, how are you people doing? I hope well now that spring is finally here after quite a long arduous winter.

John
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