Hi Nancy,
>i have been progressing very rapidly and have many problems and am in a
>wheelchair. i had a pet scan in march and the diagnosis read
>"consistent with multiple systems atrophy" which i think is one of the
>parkinson plus diseases. it is all confusing to me.
>
>does anyone else out there have this or know of someone who does?
My mother had MSA, although that was some years ago.
There's a UK charity for MSA which may have some information:
http://glaxocentre.merseyside.org/msa2.html
>one problem i have is my feet are twisting and my toes curl under making
>it painful to stand much less get shoes on. if i could stand pain free
>i could walk with assistance. the next most anoying problem is my top
>lip curls under making my mouth very dry. my lip gets stuck on my gums
>and teeth making it difficult to speak along with lip muscles not
>working well to enable me to say certain letters like b and p etc. i
>guess incontinence is next. the rest of my problems i could live with.
>any solutions?
With Mum, we massaged & mobilised any particular area which was having
problems, including her face. We also found that if any part of her body
was tense, other parts would go into spasm - it was worth the time sitting
comfortably, calming down, spending time to make sure everything was
relaxed.
She also got some benefit from Accupuncture and Yoga (there was a local a
"Yoga for the disabled" programme).
We found Apomophine to be very helpful, and were lucky to participate in
the drug trials in the UK. I don't know what the current drugs are though.
Simon
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Simon J. Coles Email: [log in to unmask]
New Information Paradigms Work Phone: +44 1344 753703
http://www.nipltd.com/ Work Fax: +44 1344 772510
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