SJS,  Your motto should be "Never Give Up"!  Go, Girl!!......You are my
kinda girl, (even with MY initials: Sharon Jean Starr)   ;-)))  You leave me
not much else to say, except,  I was wondering if it would help if a bunch
of us sent email or letters to the hospital?  What would it hurt?  It would
sure get there attention who would share it with the doctors, I bet.

Sharon Starr, Daughter and CG for Rae  74/50/45  (age now/age dx/age first
symptoms)
[log in to unmask]    Florence, AZ


-----Original Message-----
From: SJS <[log in to unmask]>
To: Multiple recipients of list PARKINSN <[log in to unmask]>
Date: Saturday, November 07, 1998 3:23 PM
Subject: Re: Susan T.'s Mom's Condition.


>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
>>
>