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
Welcome to the list, Jane. This is a good one for us. My mother has
Progressive Supranuclear Palsy (one of the relatives), and this list
has been a godsend to my father and I over the last three weeks I've
veen on it. It has everything: new site leads, and humor! The list
has been infinitely more help than my mom's neurologist who said that
she had diagnosed the PSP, and there was nothing that would help, so
go away..! You should consider scanning the archives, also.
Mary Helen Krane, daughter of
George (80) and Sarah (72, 2/no more sinimet)
