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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 >> >