Hello, Rita. And thanks for your message (below). Much appreciated.

   I do hope that Susan T.'s Mom -- whom Susan has said is in the hospital
and not doing well -- improves soon. Having been in a similar situation when
my Mom was in hospitals in critical condition, I can't hep but empathize
with Susan and feel that SOMETHING must QUICKLY be done to assure that her
Mom gets the BEST medical care, including by a good Movement Disorders
Specialist and a good Infectious Diseases Specialist. That it seems that
Susan's Mom may NOT be having such persons on her case, and that the
neurologist has said (as Susan wrote) that he will NOT be visiting, bothers
me -- and I can only hope that my concern is unwarranted and that her Mom is
indeed getting the best of conscientious care -- which is indeed possible.

Yes, I do live in a major city -- New York City -- and even here, it took
some hunting to get a good Movement Disorders Specialist for my Mom, but we
did happily get one that we were very pleased with; and fortunately for us,
he was part of Mom's hospital here too.

It is amazing that, as you say, there are NO such specialists at all in
Nebraska or the Dakotas, and that perhaps there truly are none for miles of
Susan's locale in Canada.
Maybe there is no way to get an M.D.S. to her -- but then again, I think
that *usually* (although maybe not *always*) "where there's a will, there's
a way". Or so I hope.

I wonder, what about seeing if the nearest M.D.S. -- even if he/she is some
distance away -- could be persuaded to visit Susan's Mom, even if the cost
of the M.D.S.' trip is financed, if necessary, by Susan (perhaps jointly
with her relatives, to share that cost)?

Or perhaps the National Parkinson's Foundation, or the APDA, or similar such
agencies, might be persuaded -- in this potentially life-or-death urgent
situation -- to find a good M.D.S. and fly him.her out there?

Or, for a "long shot",  what about the possibility of Susan -- or her
relatives or good friends acting on her behalf -- contacting her local
Assemblyperson, or State Senator, or Member of Congress, and seeing if that
official's offices might "get on the compassion bandwagon" and arrange for a
good M.S.D. to visit? It's the kind of help that these elected officials are
supposed to be there for -- and, as election-campaign TV ads often
illustrate, for an elected official to have actively intervened in a
healthcare situation to potentially save someone's life is great
ublicity  -- publicity that can bring in votes -- for that official.

Along those lines, maybe the health-reporters or consumer-reporters at the
local newspapers or TV stations would want to do a piece on the very
situation that you described and that Susan may be up against -- e.g., no
Movement Disorders Specialists in the entire state or province, while
Susan's Mom is thereby consigned to be unable to receive the expertise (of
this type) that her critical condition demands. Isn't it unconscionable that
this problem should exist? This situation, with its very real and personal
aspect, may be perfect for immediate media coverage -- and maybe that
coverage, if it happens, could stimulate someone or some organization to
sponsor getting a good M.D.S. out to see Susan's Mom fast.

I'm not dreaming -- I've seen this kind of coverage fairly often on local
newscasts.

I wonder too if it might be reasonable -- and safe -- to make a decision as
to whether or not the hospital that her Mom is in is indeed the best
hospital for her Mom, and to perhaps see if it might make sense to consider
moving her Mom to a more appropriate hospital -- one which perhaps DOES have
access to the required specialists? (However, this option, I'd guess, is not
feasible -- it could be risky to move  someone who is in critical
condition -- but I thought it might be worth mentioning.)

Whatever the case, I can only say that it is my opinion that when someone's
actual survival may be at stake, this is no time to NOT do everything
possible to reverse that situation and get whatever care & experts as might
be needed to make things better.
If that means making big changes -- or giving the current doctors one's full
support, if they really seem to be doing what's right -- I think that that's
a decision that only Susan (and perhaps her Mom, if feasible) can make.

I do understand that this entire situation is an awful and stressful burden
on Susan or anyone in her position, and that even trying to simply "be
there" for the patient,  especially when it's her dearly loved Mom, can be
almost more than one can handle, even in terms of time, let alone in terms
of emotional stress. I went through this sort of situation myself when my
Mom was in the hospital recently for 6 weeks, and two years ago when she was
in 3 hospitals for about 8 months straight -- and I can guess how rough this
must be on Susan now. Although we've never met, my thoughts and prayers are
with her.

Maybe my ideas are not feasible, who knows? I can only suggest in an effort
to help.

And that sparks another thought: Perhaps someone on this PD Listserv,
reading of her situation, might be able to "pass the word" about it on to
their OWN MD's or M.D.S.'s or neurologists (etc) to see if THEY have any
contacts or ideas that could quickly be acted on to help Susan's Mom.

I wonder too if perhaps there is a Listserv, or similar contact-point, on
the internet, that is devoted to and accessed by MD's, Movement Disorder
Specialists, etcetera. If there is, perhaps someone could post a request for
help there too, or at least cull some good leads from that site.

Well, I hope that this is of some help. And I wish my best too to Susan and
her Mom, as I suspect we all do.

-- SJS
   [log in to unmask]
   11/7/98

**********************************

(COPYING:)

-----Original Message-----
From: [log in to unmask] <[log in to unmask]>
To: [log in to unmask] <[log in to unmask]>
Date: Saturday, November 07, 1998 12:20 PM
Subject: To sjs


>Hi,
>Just read your very well written post "re Your mom's condition" and believe
>you have some excellent ideas.
>
>However, in reading your comments I assume that you are near a major
>city.....and I think this scenario is taking place in Canada.....and
>availability of these specialists that you describe may not be possible.
>
>I live in Nebraska, and would you believe that our state is 700 + miles
from
>east to west and there is NOT a movement disorders specialist in the state!
>That Iowa, North and South Dakota do not have MDS!  Calling in an MDS for
>consult is not always as easy as it sounds.   We travel 800 miles one way
to
>an MDS in Memphis Tennessee, because he is available for consultation (and
>used to practice in NE so knows many of the GPs and neuros here.)
>
>The strategy may be there, but the obstacles may be more than those of us
>accustomed to major medical centers ever dreamed.
>
>Rita Weeks 54/9
>