hi edith.
can u explain what u mean by PD+ ??Parkinsons disease plus, atypical PD,
multiple system atrophy?? shy drager? or SND? or opca?

thanks:)
nancy

"Edith S. Love" wrote:
>
> Dear Sassy,
>
> Count ME in! Now how do I explain it? I've had RLS since childhood. It just "triplified plus". Along with that, magnified leg cramps in the calf area of both legs that have now spread up the legs and thighs. This dystonia was also extremely rough footwise. My toes would just stand up to salute! My neuro was so impressed, she took slides, and my feet became "historified" for medical training. My pain tolerance is high, too, but, for some time now I have realized that when you pinch me I hurt!
>
> No matter how many times I have to get up at night, at this point I have no difficulty returning to slumberland. However, from midnight on I have company. RLS and dystonia awaken. They insist that they keep me company. We struggle from one side to the other. They just hate to see me alone! What results is so painful that I can only keep covers on for brief periods. In between I sleep.
>
> I can no longer get out of a chair, sofa, even my car, etc. without extreme difficulty, without a boost. Sometimes I can use my hands for a lift.
>
> Like you, I asked my neuro. She doesn't know what it is. I even asked Dr. Lieberman. He said to ask my neuro. You can tell how far we've progressed!
> I, too, plan a consultation elsewhere when I can manage it.
>
> During one appointment before the pain hit the fan, Advil was suggested for any pain I might experience. Talk about useless! And like you, my threshold for meds is like my threshold for pain. That's when I graduated to PD+.
>
> If my attempt to explain this to you seems comedic or facetious, it has to be for me. I am in my fourth year, and, mind you, I've cried out to Quality of Life in an effort to discover where it has gone. Perhaps, one of these days I'll get a postcard! Right now, Sassy, I have to keep telling myself how lucky I am. For now it is my way to tomorrow.
>
> When I moved, somehow I lost my meditation cassette tape which was a tremendous help. Do you know, I have been unable to locate a similar tape! Even Amazon.com and A. R. E. don't seem to have them. I would gladly accept assistance here.
>
> I'm with you as are so many others. I have discovered something about This List. There's bantering. There's bickering. Most important, through it all there's INTENSE CARING. We don't sit/stand alone!
>
> Thank you, Simon and Janet, for all of their efforts. You have connected the world and are doing fabulous jobs.
>
> E
> May we all walk in the headdress of the sun.
>
> At 01:29 AM 9/16/2000 -0700, you wrote:
> >>>>
>
>      Good early morning List family,
>
>      I am interested in knowing how many plwp's are having difficulty with pain management. This could be pain of any kind. In reference to myself, I have pain from rigidity. I have pain from the extreme dyskinesias I have. During these dyskinesias I can get charlie horses. I have pain from the offs. I feel like the tin man on the wizard of oz at times. In my situation I have an extremely high threshold for pain. Plus a high threshold to drugs. I am finding my local neuro reluctant to treat the pain. I have another neuro at the teaching facility at the Bowman Gray/Baptist Hospital at Wake Forest. I believe I am going to seek him out. This could be a very serious situation. It is already affecting my quality of life. Anyone willing to share...Many thanks in advance...
>
>      Sassy/
>      Sandy Norris 40/28/20
>      "Faith is the daring of the soul to go farther than it can see."
>
> <<<<