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Hello. My name is Susan Hopp. I'm in Minneapolis. I've been browsing for a few weeks and am thrilled everyday when I check my mail and see all the compassion and desire to share knowledge that shows up on my screen. Thanks to all of you! My father, 79, has PD and until I found this list I've felt pretty helpless. All the news about pallidotomy got me more proactive. It's been interesting reading all the coorespondence about it, and everything else! I'm learning so much and I've been forwarding a lot of this info to my parents. My mother, 78 and incredibly healthy, is primary caregiver and has done a great job. But now recently as Dad's health is noticeably getting worse, it's becoming harder. I've asked Mom to compose an intro letter, since she's much more familiar with his day-to-day condition. It seems to change all the time! Here's her letter: ------ My husband has had PD since 1986 and was still playing tennis two months ago. He abruptly had a nervous reaction , encountering sleepless nights, Restless Leg Syndrome and Akathisia. He cannot tolerate most medications and is on 1/4 of 25/100 Sinimet and 1/4 of 2mg of Artane every 3 hours. Trazadone was prescribed but that left him unable to raise himself in bed and did not help the insomnia. It left him tired the following day. Xanax made him a zombie. Last night he tried Tylenol PM and had the best night yet. We hope that works. Has anyone found a way to better utilize the Sinimet as it becomes less effective? That is a big problem. And has anyone found certain foods or vitamins to be helpful? ---------- Back to me, Susan. Other issues I'm concerned about are: > his feet are swollen (1 doctor thought it was a nutritional deficiency. Although Dad eats well, maybe there's a supplement that he should take?) > He's getting really thin! 6'2" and now about 135#. He's trying to drink those put-on-weight drinks (Ensure??) but he's not very hungry. > I've been reading here about these blue glasses. Where does one get them? More info? > I've suggested a cane for stability. Are they used? Seems logical. and the list goes on. That's enough for now. I'd appreciate any comments/suggestions/helpful hints/encouraging words to any of this. Also, I'm a graphic designer and thought this might be a good cause for me to volunteer my talents. I've now become aware of the need to make PD more visible to the public. Any suggestions as to how I can get involved? Thanks for reading this long letter. I hope this goes through - it's my first posted message. And I'd certinly hate to have to retype this! >>Last minute addition: my Mom just called with another question: Why do the restlessness symptoms show up more at night? (Tylenol PM hasn't seemed to work lately.) At night, Dad just can't get comfortable and so has to get up to walk the floor. He tries to sleep in bed and sometimes sleeps some, but then is up again, and then sometimes falls asleep in a chair. He seems uncomfortable with his head down. He isn't feeling that restless during the day, and tends to nap (in a chair) alot. Any comments? Thanks. Best wishes to all, Susan Hopp [log in to unmask]