Jane Koenig wrote:
>
> Hello PD List,
>
> I'm glad to have found you. Thanks to Barbara Patterson for suggesting I
> introduce myself.
>
> My name is Jane Koenig (e-mail address: [log in to unmask]). I
> live in Marietta, GA, outside Atlanta.
>
> My father, a recent widower currently living in central Florida, has been
> (sort of) diagnosed with PD. The diagnosis process and care has been
> extremely frustrating for him and for his children. About 18 months ago,
> at age 78, he was remarkably healthy. His favorite activity was rowing and
> every week day he would take his single scull to the local lake and work
> out. A year ago he found he could not lift himself out of the scull onto
> the dock. His regular GP took until this past summer to diagnose PD, after
> putting him through a myriad of tests for possible heart and GI problems.
> He prescribed Levidopa/Cartidopa (sorry if I've got the spelling wrong) but
> there was no response. Then Doctor #1 died. He hooked up with another GP
> who immediately sent him to a neurologist. He was told to stop taking the
> medication and an MRI was done. The neuro said he has "a form of
> Parkinson's", that it would get worse, and sent him home with NO
> recommended treatment.
>
> So there he sits. His right arm (he's right handed) is almost useless. He
> does not have tremors, but shows almost all the other symptoms--shuffling,
> slowness, difficulty getting up and down and, I think, some freezing.
> Sometimes he just seems to get stuck.
>
> We are preparing for him to move near me (house on the market, etc.). I
> have read about the work at Emory and hope to get him in there as soon as
> he arrives here. Meanwhile, I joined this list as part of my research
> effort. I want to find the best possible care for him and I want to be
> knowledgeable enough to help him ask the right questions and get some
> action from the medical community. And, of course, I look forward to being
> part of this support group and benefitting from whatever advice you can offer.
>
> Any ideas for us?
>
> Best,
>
> Jane Koenig
JANE,
I have a form of PD which is called "atypical parkinsonism" , probably
something called "parkinson plus", or MSA (multisystem atrophy). I have
been told by the Parkinsons Institute in Sunnyvale CA that the only
treatemnt is supportive, i.e. they don't know what is the cause and
therefor there is no treatment for it. Your father's symtoms sound
similar to mine.
The symptoms are similar to PD EXCEPT:
1. the gait problems sre usually first rather last as they are
in PD.
2. there is little or no tremor
3. there is little or no response to Sinemet
If these conditions are true, one should suspect atypical PD. At this
point there is no clinical test, one simply has to rely on symptoms for
diagnosis.
Best wishes,
---Milo
--
Milo V. Anderson, Ph.D. Knowledge is free at the library;
Box 417 bring your own contianer.
Angwin, CA
94508
voice 707 965 2508 ODE TO A METAPHOR
fax 707 965 3148 Ilustrations are useful,
e-mail [log in to unmask] Or what's a meta-FOR.
