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Old 09-27-2006, 02:46 PM
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reverett123 reverett123 is offline
In Remembrance
 
Join Date: Aug 2006
Posts: 3,772
15 yr Member
reverett123 reverett123 is offline
In Remembrance
reverett123's Avatar
 
Join Date: Aug 2006
Posts: 3,772
15 yr Member
Default here's another i got by email

This one was forwarded to me due to problems posting:

<BEGIN>
I was intrigued to say the least when I read the posts on banding last night. I am visiting a friend in AZ and could hardly wait for morning to ask her for an ace bandage to cut up! Just a tiny background- pd- 11 years, downward spiral the last two or so months, I believe due to stress, my sister-in-law passing away, the sadness of it all, trying to be a support system to my brother, realizing this weekend that there are many life experiences I need to grieve that have surfaced due to my current situation. I have been stumbling, falling, etc, in addition to my regular pd symptoms. One fall on concrete on the back of my head, no blood but scary, numerous daily falls, near falls- liken to a 300 lb. tiptoeing ballerina!, slamming into walls, falling to my knees etc. Last night when I read the banding post I was thinking. “ Oh please, oh please someone say it helped with balance”, although I will take any help I can get. Ahh- morning came and I first tried a wrapping
above each wrist and ankle----nothing, I took them off and thought about what to do next. My first meds (one Sinemet 25/100, one Mucuna 75 mg.), had worked, my 2nd was not working and I was edging around the room holding onto countertops, etc. to keep from falling, I finally gave in and took my 3rd dose an hour early hoping for relief and went to the living room floor to lay down, try the child’s yoga pose, breath, wait and see. I did get relief from the third dose, however, I was still having to use the walls as my guide to walk as I have on and off over the last 2 months. I then tried one band halfway between each knee and hip on each thigh as well as one around my head- here is what I know;
1. It was four hours until I took my next meds, which hasn’t happened since the early sinemet days. When I did take them I wasn’t sure if I should or push it even more, sometimes I suffer some very ugly dyskinesia / drug withdrawals if the wait is too long.
2. I haven’t had to hold onto a wall or any surface since I applied the second bands. I did feel unstable when I took a quick shower and removed them, and they were the first things to go on-when dry.
3. I have not tripped or fallen today! I cannot even begin to explain what that means to me, I have been able to do little if anything with my 15-month old grandson for weeks. I have been unable to help my friend with her baby or daycare. I have been extremely depressed and hopeless. I have at times not been able to walk across the room with something as insignificant as a telephone, or cup of water because it throws my balance off.
4. I believe there is something very real happening. I have been a quiet reader for years and admire and respect the knowledge and information base Brain Talk has provided. The intelligence here never ceases to amaze me. I wasn’t aware of the politics involved until recently, but I won’t go there, I just appreciate your brains- 1 or 2. I am starting to feel dyskinesia and dystonia of my left hand and foot, so I will close and maybe take off the bands and hope for a recharge, if not that is ok too. I am so thankful for a fall-free day, of course some will say, “placebo” but I simply don’t care.
Now this is A-M-A-Z-I-N-G! When I get to the end of my medicated day, sometimes last meds work sometimes they don’t- today was a “don’t” day. Whatever time this occurs I normally take a Valium(10 mg) and a Soma (350) mg) to make it through what is almost a convulsive state of my left leg and foot as well as a painful cramping and arching of my left hand lasting anywhere from 15 minutes to 2 hrs. I took off the bands and stumbled into the kitchen, I took the v and s (okay I admit I always wash it down with a half-cup of Chardonnay) - (well it says, "alcohol may increase the effects of this drug" well-YEAH!) and put the band back on the left thigh and added the previous right thigh band to my left arm above my wrist and doubled it, I also put my head band on and announced my usual scenario,” I’m going to lay down”, instead my left hand is resting calmly on my left leg which is not even twitching except for an occasional toe movement which is now still. It is impossible that
the narcotics started this as it was less than 2 minutes post intake. I am typing w/ my right index finger. I am thinking purple wristbands and who knows what on my head. The main point is I am thankful and you can count me in! By the way while I was editing I began to type two-handed, unheard of for me at this time of the day.
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__________________
Born in 1953, 1st symptoms and misdiagnosed as essential tremor in 1992. Dx with PD in 2000.
Currently (2011) taking 200/50 Sinemet CR 8 times a day + 10/100 Sinemet 3 times a day. Functional 90% of waking day but fragile. Failure at exercise but still trying. Constantly experimenting. Beta blocker and ACE inhibitor at present. Currently (01/2013) taking ldopa/carbadopa 200/50 CR six times a day + 10/100 form 3 times daily. Functional 90% of day. Update 04/2013: L/C 200/50 8x; Beta Blocker; ACE Inhib; Ginger; Turmeric; Creatine; Magnesium; Potassium. Doing well.
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