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Interlaced response... read on... ---------- From: Parkinson's Information Exchange on behalf of NYDadBear Sent: Friday, December 12, 1997 7:13 AM To: Multiple recipients of list PARKINSN Subject: Re: PD List as PD Treatment... Hi Barb, Hi Yerself, Tom... Thanks for that great post. I've gotta tell you ... you're good medicine for me and I'm sure for lots of others as well. Awwwww... <blushing>, and just think... ya don't hafta belong to an HMO to get any of that "good medicine." <grin> (no negative side effects, either) <'nother grin> I've gleaned from your writings that your PD symptoms are far more devastating No, no, noooooooo, Tom! All things considered, I'm doing Ok. HONEST! My PD symptoms were really awful BEFORE I had a unilateral pallidotomy in Oct. or '94. Well to ME they were awful, I knew many who have it SO much worse than I did or do, that I'm almost embarrassed to talk about my own symptoms The pallidotomy was an outstanding success and I had about a 95% recovery of motion and a return to "normal" movement for my entire right side. The few tiny symptoms I had on my left side at the time of the surgery completely disappeared when the operation was over. My worst complaint at that time had been stiffness, loss of balance and dyskenesia.... little or no tremor. And much of that had disappeared! During the first two weeks of July, '96, I hadda pinched nerve from being rear ended by a van while driving and was given the drug Tegratol for the nerve problem. BIIIIIIIG mistake!!! THAT triggered the PD on my left side (and I'm a Southpaw, with all the virtues and talents that come with the blessing of being born left-handed) <smile> (read THAT as being VERY creative and artistic) This means for about a year and a half, my left side has slowly become involved once again with PD symptoms - but there are STILL no symptoms on the right side at all! <Barb leaps up outta chair and dances wildly with joy 'round her wee office> Oooops.... somehow the following got reformatted and I can't get it to return to the original settings... I have INTERNAL problems (breathing, swallowing, vision and speech problems) with PD.... and they're more of an aggravation from late afternoon thru mid-evening than anything else at this point. The worst symptom is great fatigue and even THAT can be worked around... if I kinda play a game of "fool-the-disease" with myself, 'cause once I DO force myself to go out in the evening, I have an enjoyable time. The fatigue is like being inside a blob of jello with huge weights tied to my arms and legs.... but once I've struck a deal with myself (one part of me always says to the other, "Oh heck... it's easier to stay home and not bother getting all gussied up to go out," and the other side says "HEY - you're SUCH a babe when ya get all dressed up! GO FOR IT!") <giggle> One of the biggest problems I have had with the PD is that it's not visible to others! (this is like the "good news and the bad news") Even when I'm feeling pretty yucky my PD isn't that visible to most folks. And every time I go to a doctor's they simply don't BELEIVE I have it! When I finally convince them I DO have it (usually all it takes to do that is to remind 'em I had VOLUNTARY brain surgery for the &@%#^ disease and ya don't USUALLY do THAT without one helluva good reason!!!). they dont' seem to comprehend the way the disease affects ME. They only picture PD as being lots of tremors. Period. than mine or a lot of folks, but you maintain humor and optimism and clarity through it all. Yes.... I have been able to maintain my sense of humor and optimism, but only because I'm not comfortable with the alternative. I feel we each have options to be positive or negative, and I've made my choice. Still.... once in a while I permit myself to feel down about the PD for an hour or two... I don't want to live with my head in the sand acting like if I ignore it won't be there. I just don't wanna beat myself over the head with my PD all the time. As I occasionally look ahead to where this "condition" might take me and my "faculties" I am completely inspired by your spunk and vitality, when I KNOW PD is working to suck that out of you. M'friend, I think this is something each of us fears. The options aren't in our hands tho so I strongly urge you to mentally tuck THIS kind of thinking away into the far reaches of your mind. Keep up on what's happening in the world of PD/medical research, tho, 'cause "THINGS ARE HAPPENING" there, and they're very positive! There may not be a cure or a fix for PD tomorrow, or even next week... but DAMMIT.. it's out there! I can feel it waiting to be born! An we WILL benefit from it! You're about the best feature on this List for me!! <MAJOR blushing now> Thank you... Ya made my day! <BIG smile> Huggles... Barb A fan, Tom