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I and my mother (Elvira David) are joining this list together.  I'll
be faxing her what you all send.  And she'll maybe ask me to write
something occasionally, I suppose.
 
My mother has a variant of Parkinsons, sometimes called Atypical
Parkinsons, or Multiple Systems Atrophy.
 
It seems to cause faster degeneration, and to be less treatable. It's
also atypical in that she has no shaking.  It seems as though it might
be an unrelated disease, but for now it's lumped together with
Parkinsons.  It's not totally clear what her diagnosis is -- doctors
disagree.
 
Her symptoms include lack of balance, difficulty walking, and constant
fatigue, vivid dreams, difficulty talking, difficulty eating solid
foods, difficulty swallowing, and poor hand coordination.
 
She has my two sisters, as well as several nice women she's hired, as
her caregivers.  She's 63 years old.
 
She's in a Parkinsons support group in Los Angeles, in the Valley, in
fact.  I'm happy to say that she was not injured in any way by the
earthquake, and did not suffer too much breakage.  One of her
caregivers is out of commission because the road between them is
closed.  But other people are filling in.
 
 
She's very interested in finding someone to do genetic study of her
family.  We think it's a most interesting case: she and 3 other 1st
cousins with a common grandfather have all been diagnosed with
Parkinsons.  So far, it has not been very easy to interest any
researchers in conducting any serious study of this event.  In
addition, some of the family members have expressed "lukewarm"
enthusiasm about participating.  This is a bit of a disappointment to
us.
 
One last thing: Simon Coles' introduction was most interesting.  I for
one am most interested in getting a test version of CANDI.  My mother
would really like to use a computer, and also is trying to find some
solution to her failing speech and the associated communication
problems.  (She has considered learning Morse code....)  Any other
advice on appropriate alternatives to the keyboard would be
appreciated.  I'll check the FAQ some day soon.
 
We are looking forward to hearing from you on this list.
 
Mark H. David (and Elvira David)