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Posted by Bruce on September 08, 2000 at 00:38:52:

In Reply to: Re: Personal Story of Hope/Darrell posted by CC on September 07, 2000 at 12:05:58:

: : : : I want to share some wonderful moments I am experiencing lately. For those who don't know my history, I am a 47 yr old woman with PD (since I was 31). My worst symptoms were tremors on the right side, and my medication protocal was starting to cause more problems than benefits. I had STN Brain surgery in May of '99 on both sides (two electrode implants were placed in the subthalamic nucleus). I was also having problems with rigidity, slowness, balance and dystonia. Still, the tremor was the most bothersome and if I tried to take more meds to control it, I just got worse with dyskinesias (I was a manic, lip licking, spazzy crazy woman!) I had a malfunction in one of the implants, and had a second surgery in March of 2000 to replace one of the "computers" in my chest. Since that time, after several adjustments of my meds and stimulators, my life has just blossomed. I quit my stressful teaching job 5 years ago, but was working too hard helping my husband at his business. We've decided that I do best out of the stress as much as possible. I am at home most of the time now, have taken up walking my dog (and swinging my arms!!), and rejoined a health club so I can take gentle yoga and Tai Chi and do some weight lifting again. The amazing thing (to myself) is that I just finished is painting trim work with a hand that couldn't hold a cup not too many months ago. I'm standing back, admiring my stress-free environment (most of the times) and decided I should share with you all on the boards. If you have a chance to go for this surgery at some time, then find the funds, the courage, whatever it takes, and GO FOR IT!! Life is better now, even though I still have PD. This disease has enabled me to expand my life into areas I never got to try before. Sure, some venues have been closed, but for every one closed, another door has opened. I am sincere in that, not just repeating platitudes. Take heart, any who are sad or not accepting their diagnosis. I believe there is help available, and you must find within yourself new strengths, new talents, new awareness of what IS possible. Courage to you all, you princes and princesses of PD, you Kings and Queens of the World (a little "borrowed pap" there!!)
: : : : Carole

: : : Carole,
: : : Did the implants help with the rigidity, slowness and balance problems?
: : : I'm glad you are doing so well. I'm 49 and have had PD since I was 35, I feel I can relate to you.
: : : Reducing stress and focusing on what IS posible is so very important. This board is a source of inspiration.
: : : Good luck and thanks.
: : =============
: : Darrell,
: : Yes, they did help! There were people in wheelchairs who could no longer walk who were up and walking (we had a brain surgery reunion in April!). I really felt the befores and afters when I experienced the malfunction. My IPB (compuyter box) had developed a small leak and my benefits were down to half and I had become very Parkinsonian again, in more ways than I had remembered. Getting fixed up and switched from Tasmar to Comtan with the Sinemet CR50/200 made all the difference. I still do the best in the mornings and I get tired if I feel TOO good and do too much. It's nice to know I can take a nap if I need one, which isn't always now. Pre-surgery, I was passing out from fatigue. I still take the meds because my body can only take so much stimulation, but between the two treatments, life with PD is surprisingly good! (NO STRESS, positive attitude, exercise, keeping your mind exercised and out of your own problems are all benefits.) I take only the two PD meds sometimes 2 xs a day, sometimes 4 xs a day. I let my body tell me what I need.
: : Carole
: : ==============
: correction: the IPB (above) should have read IPG - Implanted Pulse Generater.

To any one who isn't always in the "on" period: unlike Carole I am still waiting for the surgery. The point I am trying to make is you can still do a lot more things then you might not be aware of. This afternoon I suddenly realized I was getting into the off period. After resting a few minutes I loaded up the walker and drove to a drug store. With the aid of the walker, I purchased what I needed and walked back to the car using the walker. Of course, I didn't look to impressive and was offered help from two different people. Actually,even though I couldn't walk a step without the walker, I had no problems during the trip, I was slow, but I wasn't in a hurry any way. So if you have problems walking don't be afraid to venture out if you make sure everything will be safe. It does wonders for all those depressing thoughts you might have in your brain. Bruce

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