Mike,

Exelon, is structured to improve mental sharpness.  See
http://my.webmd.com/content/article/1833.51014  Good Luck

Bob










----- Original Message -----
From: "Mike T" <[log in to unmask]>
To: <[log in to unmask]>
Sent: Tuesday, September 10, 2002 2:19 PM
Subject: introduction


> Hello, I've been lurking on this list for about 6 weeks now and I thought
> I'd introduce myself.  Please forgive the length of this e-mail, but I
> thought I'd share my father's story.
>
> My name is Michael, I'm 30 years old and live in the NYC area.  My father
> is 69 and was diagnosed with Parkinson's about 8 years ago.  I suppose the
> best thing about this list is hearing the stories, and seeing that my
> father's situation is not unique.  For a long time I was worried that he'd
> "slipped through the cracks" of the system, or that my family had simply
> not done enough to find him the best care.  Now I can see that the bottom
> line is simply that the medical community doesn't really have all the
> answers, or, in some cases, any of them.
>
> My father has been to five different neuros in the past eight years.  Some
> of them have been highly regarded in the field of Parkinson's.  For the
> first few years, his condition was kept stable by the usual meds (Sinemet,
> Mirapex, Comtan, etc..)  In retrospect, he was probably terribly
> over-medicated.  About 3 years ago the medications started to lose their
> efficacy (or his disease progressed beyond the point where meds could do
> any good, or he really doesn't have Parkinson's, or, or, or...your guess
is
> as good as anyone's).  He began to deteriorate.
>
> In April, 2000, he had his first bout of pneumonia.  He was in the
hospital
> for three weeks.  He never really rebounded from that.  That episode
really
> marked the turning point in the quality of his life.  He eventually
> returned to work, but really wasn't strong enough anymore, and retired
> shortly thereafter.  By the end of 2000, it was clear that the disease was
> progressing more rapidly than ever.  My mother tried to take care of him,
> but it eventually proved too much for her.  By November, 2001, we moved
him
> into an assisted living facility.  From the beginning we realized this
> would only be temporary, and 6 weeks ago we had to move him into a nursing
> home.  It was one of the hardest things I've ever had to do, but it seems
> the only safe environment for him.
>
> He just had another spell of pneumonia.  This time it appeared to be
> aspiration pneumonia.  While he was in the hospital, they gave him a full
> swallowing evaluation.  Thankfully he did not have to go on a feeding
tube,
> but he is now on pureed foods only.  He is now out of the hospital and
back
> at the nursing home.
>
> A little about his condition:  my father has never had any tremor.  His
> symptoms have always presented symmetrically.  The first few years, his
> symptoms were largely physical and of the "postural instability/gait
> disturbance" variety.  Over the past few years, his energy level has
> markedly decreased, while muscle rigidity has increased.  The biggest
> problem has been falls.  He can walk with a walker, but the nursing home
> mostly keeps him in a wheelchair.  Actually, I lied.  The biggest problem
> is his dementia.  He is only partially "with it", depending on his energy
> level, med level in his bloodstream, phase of the moon, who knows.  These
> days he is usually responsive, but can not hold a conversation, or follow
a
> train of thought for more than a few minutes.  This is largely why he is
in
> a nursing home, and why he is confined to a wheelchair, even though he can
> walk (with assistance).  His judgement is just too impaired to navigate
> through the world safely.  He's been working with physical therapists for
> over a year now.  He does fine while they're working with him, but can't
> seem to retain the information, or can't focus enough for it to "stick".
>
> His diagnosis has always been the disconcertingly vague "atypical
> Parkinson's".  One of his neuros once mentioned MSA, but I don't think
that
> was their final diagnosis.  They had done an MRI to "confirm" their
> diagnosis.  At they time, when I asked about a more precise diagnosis,
they
> mentioned a PET scan, but basically said it wasn't worth it because it
> wouldn't effect his treatment options one bit.  Now I'm wondering if it
was
> a mistake not to insist on the PET scan.
>
> No tremor, no dyskinesia, more dementia than usual, lots of balance
> problems, meds don't help anymore.  It's really a very disheartening
> situation.  I'm not sure what's worse -- that modern medicine doesn't
> really have any effective treatment, or that no one can even tell us what
> he has with any certainty.
>
> I want to thank everyone for sharing their stories and information.
Thanks
> to this list, I feel a little more informed as to what's going on in the
PD
> community, both in the "mainstream", and on the more "experimental"
> side.  Right now I'm in the process of reviewing the recent posts re: PET
> scans, supplements, etc..  The neurologist at the nursing home seems
fairly
> knowledgeable about Parkinson's and I'd like to bring some of this to him,
> and see what he'd be willing to try.
>
> Thanks again, and I wish you all the best health possible.
>
> -Mike Taubman
>
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