Dear Sharon,

What, ANOTHER "SJS"?! I'm honored!

But to avert confusion, I prefer to continue to be the one identified
formally as "SJS",
as I have been doing since I first logged onto this List a couple of years
ago, if that's okay with you. Besides, your name "Sharon" is a beautiful
name, please keep using it!

Anyway, thanks too for the compliment in your note (below). And, you know
something? It's true -- my motto IS "Never give up!". And -- although  this
one is a bit tougher to win at -- "Failure is NOT an option!".

Now, a bit of LENGTHY elaboration:

(1) First, as to your question as to whether it might be a good idea for us
all to e-mail Susan's mother's hospital, to support Susan in her efforts to
help her Mom:

I suppose it might work -- but I think first that this would be something
about which Susan should first give us her thoughts. Would an e-mail
"campaign" serve to support her -- or would it possibly disturb the hospital
or the doctors involved, particularly if they are the types who might resent
"outside interference" or "publicity"? Or would they welcome it? I don't
know. And would the e-mails stimulate them to make better decisions, or
scare them into doing only the "most conservative" type of treatments, for
legality's sake, rather than going for more ingenuity in designing better
treatment? ...

I'm only posing the questions, because I think the answer depends on the
character of the doctors. BUT, perhaps, to e-mail them with positive,
constructive, well-grounded medically-based suggestions that they might
respect, well, that might be useful -- but I wouldn't think it right to do
ANY of these things without first consulting with Susan.

Actually, I think that the best thing to do, for those on this Listserv who
are interested, is to continue to post hopefully-helpful ideas here for
Susan, to allow her to make the choices that she feels are most appropriate.

Having said that, I would also add that if no one writing about her
situation on this Listserv objects, I see no reason why she shouldn't be
able to print whatever comments from this Listserv that she believes might
be useful, so that, if she wishes, she can show the printouts to her Mom's
doctors (or potential new doctors) herself.
.
(2) Second, as to my intense sense of commitment and the need to fight
relentlessly in favor of life -- especially the life of someone we love,
much as I'm sure that Susan loves her mother:

There is one thing I learned over the course of these recent years as my
wonderful Mom went through H*ell and, thank God, came back -- at least, she
was "back" until this April, when, thanks to what I believe were actions at
the hospital that should never have happened, ... her life as a physical
human being sadly and unpleasantly ended; it still tears me apart, and I
think that it always will. And maybe that's part of why I push so hard here
to try to support and encourage Susan (and anyone else who might feel that I
have thoughts on this matter worth considering) to take ACTION. and to NOT
be cowed by ANYONE in that effort!

As I used to joke with my Mom, especially when she was feeling down &
despairing during these times, "Non illegitumus carborundum est!" -- e.g.,
"Don't let the bastards wear you down!". (For those who might object to this
phrase in the current context, please be assured that this phrase -- while
it does have a point -- is meant generically and in good humor.)

I think that it's a worthwhile motto. Especially in a case such as the one
that Susan appears to be facing.

Each of us has (usually) only one mother & father; they are ours -- they are
NOT the parents of, or necessarily beloved by, the doctors or nurses or
aides or hospital administrations. Our Mom or Dad (or son or daughter, or
grandparent, or other close relative or loved one) does NOT mean the same to
the doctors, etcetera, as to US. Yes, some medical/hospital personnel are
compassionate and absolutely will "pull out all the stops" to help a patient
survive and get well; and those particular medical/hospital personnel are
truly gems to be supported and prized. Even so, that "patient" may be OUR
Mom or OUR Dad, while to the medical personnel and the hospital
administration personnel, generally speaking that person is, above all, "A
PATIENT". And that, in my experience, CAN generate a significant difference
in the weighting of priorities, to say the least.

Patients live or die, they come and go, and there are always new patients to
take their place. But for us, there is only ONE mother, ONE father, and so
on, and NOBODY can replace them.

Keeping that difference in mind -- if you agree with my premise -- who would
YOU want making the ultimate life & death decisions about your parents,
children, other loved ones? If YOUR loved one was critically ill, would YOU
say to him or her, "Now that I've seen you this once, I have other things to
attend to, so I'm leaving now and I have no plans to come back -- If you
need to report anything, have someone phone me"?

For years, having initially gained great richness in spirit and courage from
the tremendous courage & spirit so powerfully & innately held to by my Mom
(even though she wasn't necessarily consciously aware of these of her
qualities) as she suffered brutally at the edge of the end of life when she
was in the hospital 2 years ago, I have striven to live by the above mottos
of "NEVER GIVE UP!" and "FAILURE IS NOT AN OPTION!".

In support of my Mom, I singlemindedly followed those precepts, realizing
that even if that included, as it did, coming up against some of the most
repulsive egos and making myself disliked by certain medical/hospital
personnel (which I wish hadn't needed to happen), then so be it -- my
relentless activism was absolutely necessary to assure my Mom's hoped-for
survival. She -- not their disturbed egos or  other drawbacks -- was my top
priority.

Can you imagine, for example, a specialist -- who was called in by my Mom's
doctor, who feared for my Mom's ability to live even one more day -- telling
me on that Friday afternoon that an echocardiogram would be very important
to her survival, but that he was going to be "off for the weekend" so it
would have to wait until Monday? I immediately had him replaced. Or another
doctor, to whom I had turned for compassionate help, becoming nasty and
abusive toward me because I had dared to override the commands of a Head
Nurse by begging him to order that my Mom -- who was gurgling in frightened
agony at death's door while on a ventilator,  and terrified  beyond
belief -- be permitted to have an aide present so that she could released
from straps that were gripping her wrists tightly to the bed's edges 24
hours a day?  This battle was a lot tougher -- heart-wrenching and agonizing
in fact -- but I pushed until I was able to have an hour-long meeting with
the Head of the Social Services Department and got the decision overturned.
Or how about the nurse who was about to give my Mom a shot of HALDOL, not
knowing -- until I stopped her before she could give the injection -- that
Haldol is contra-indicated for a Parkinson's person? Even when I explained
it to her, she professed to having had no knowledge of this  fact. Or how
about when I phoned the nurses' desk late that night (or perhaps it was
another night) to reconfirm that haldol was not to be used, and they said
they'd heard nothing about it -- and a bit later, they phoned me back to say
that my request had gotten them to check, and that they found that I was
right?

... I could go on and on, but I won't. I only mention these things to
reinforce my point: I submit that it is vital to be an ACTIVIST ADVOCATE for
the one you love, ESPECIALLY in a life-or-death hospital setting.

I know that over these years, at least in terms of my Mom's ability to beat
all the odds (and those terrible predictions of nearly every one of her
doctors), my being a relentless activist succeeded.

Even she and various relatives and family friends have told me that the fact
that she was able to survive that ordeal, and leave the hospital, and get
well, and be home again, and live a good life for 2 years more than
otherwise would have been the case, was mainly a result of my personal
"never-say-die" efforts.

Of course, I certainly do not take all the credit. Various of her doctors at
that time did pretty well indeed. So did, I'm sure, God, or whatever that
beautiful power is in this universe. Plus other positive forces, which I
don't need to discuss here. And, I must absolutely say, much of the credit,
perhaps 99%, must be attributable to my Mom, her powerful spirit and her
unspoken drive to survive; everyone said -- even when she was struggling
against the worst off odds on a ventilator and with usually-fatal
hospital-acquired pneumonia, and when the predictions were all (except for
mine) dire -- "Your Mom is a fighter!".

Well, having had the great privilege to do everything that I could possibly
do to help my Mom emerge back toward life, despite all those horrible odds
and pressures, I believe that to have seen that my wonderful mother was
consequently able to escape death and disaster and to win out above all has
given me the greatest gift and greatest honor that I could ever have in my
life. My Mom was -- and in spirit still is -- the most wonderful person I've
ever known, and I'm proud and fortunate to have known her, to have been her
child, and to have been able to help her in her times of need.

Even earlier this year, I was relentless in my struggle -- more of a war,
actually -- to help her beat the odds; but I was up against too much, and,
to my great chagrin, this time... in the end, it didn't work.

Even so, the lessons I have learned from these years and these problems have
been more than redoubled in their intensity. I will forever be glad that I
quickly learned how to determine the CORRECT scale of priorities -- that my
Mom's life & survival & wellness was NUMBER ONE, and all else was SECONDARY.

Failure, I had determined in the beginning of that hospitalization ordeal,
was NOT going be allowed to be an option, DESPITE all those awful odds and
dire predictions. Even as I'd told my Mom, as she lay there in despair at
the worst times, "Never give up!", I maintained that motto as a bright
guiding light, and I'd let NOTHING and NOBODY get in that light's way!

THIS is what I mean when I recommend that Susan T. -- and anyone else in
such a situation -- try to do EVERYTHING POSSIBLE to fight for the survival
and wellness of a loved one, or even for their OWN survival and wellness,
DESPITE whatever unsatisfying statements or actions mightbe made by any
medical or hospital personnel in the case at hand.

I'm not "patting myself on the back" here -- I'm just trying to convey
something that I've learned and that meant a lot to me, in the hopes that it
can benefit Susan and anyone else who feels that there might be some value
in these thoughts.

... So: Long story, short message, isn't it? Maybe that's what I get for
starting to wrote this in the wee hours of the night, when I should be
sleeping instead. Well, now I've "done my good deed" -- not to mention that
I've enjoyed simultaneously listening to "The Oldies" on WCBS-FM -- and so
it's off to bed for me!... For a little while, anyway.

Best, and ... GOOD MORNING!
SJS
11/9/98
[log in to unmask]
*****************************


-----Original Message-----
From: Sharon Starr <[log in to unmask]>
To: Parkinson's Information Exchange <[log in to unmask]>;
[log in to unmask] <[log in to unmask]>
Date: Monday, November 09, 1998 1:46 AM
Subject: Re: Re: Susan T.'s Mom's Condition.


>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
>>>
>>
>
>