Thread: What to do.....
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Old 08-08-2007, 01:06 PM
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stevem53 stevem53 is offline
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Join Date: Aug 2006
Location: Rhode Island
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15 yr Member
stevem53 stevem53 is offline
Senior Member
stevem53's Avatar
 
Join Date: Aug 2006
Location: Rhode Island
Posts: 1,221
15 yr Member
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Thanks for this thread ol'buddy!

Im still somewhat in the beginning of this mess, and I've learned more here from you folks than I can list..Getting an education from the voices of experience has paid some great dividends, and has given me some good tools to work with in dealing with this disease

I got out of the rat race and on SSDI ASAP, and I am thankful for that..Now I do what I can do, when I can do it, and find satisfaction and enjoyment in it..Its alot easier, and less stressful when you can move at your own pace, and the bills still get paid

I try my best to avoid stress..I avoid stressful situations like the plague, because my pd symptoms are the most vulnerable to it, and I feel like I have 10 yrs of progression dumped on me when I am upset

This has been a bad week, and I've put myself to the best of my ability in the 'This too Shall Pass" mode, to get through it

My boat went into the shop for outboard repairs..Not a big deal..I planned on it weeks ago..But then I was heading to my girlfriends house this past Saturday, and my truck broke down on the hi-way, about 50 miles from home..I called AAA and got towed home, only to find out that the engine blew..I just bought the truck last Nov..If that wasnt enough, there was a man who drowned at the beach in the bordering town..and come to find out it was a man from my YOPD Support Group, who was training for a Triathelon, who has had pd for 15 years..He was my contact to initially get involved in support..He was also the guy who showed up at Congressman Jim Langevins Press Conference to give me some support, as I was invited to it because of my PAN position, and was shaking in my boots in front of the TV cameras..His sense of humor was what broke the ice for me..Im sitting here now, waiting for a call back from a cheapo car rental agency, so that I can get to Don's wake tonight.This is the week from hell!!..I normally live a day at a time, but I'll tell ya..Im looking at next Friday with a passion right now, when hopefully all will return back to normal..

Im not an expert on DBS by a long shot..But Ive seen miracles, and Ive seen not so good results..Charlie is obviously one of the miracles..There is a guy in my support group who had it done last Dec, with remarkable success!..He walked into the meeting like a new man, and he did have a great deal of success with the fatigue problem that had been plaguing him..There is a woman who had it done recently who did it in the early stages of pd..(dx about the same time as myself).. because she couldnt tolerate the meds..She hasnt been programed yet, so Im looking foward to seeing her results..Most of the folks Ive met have had good results with DBS, and like I said, Im no expert, and dont know all the details of their case..But I guess my point is..is that I look at it as hope
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