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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 >