--------------- FIDO MESSAGE AREA==> TOPIC: 230 POST POLIO Ref: D5L00001 Date: 05/16/96 From: TOM MCKEEVER Time: 12:50pm \/To: JIM ALLONBY (Read 1 times) Subj: Elist Greetings, Jim!! While you were muttering to Tom Mckeever, <05/15/96>, you spake thusly: JA> Greetings! JA> Monday May 13 1996 20:29, Tom Mckeever wrote to Jim Allonby: TM> Greetings, Jim!! TM> While you were muttering to Tom Mckeever, <05/12/96>, you spake TM> thusly: JA>> Greetings! JA>> I was just wondering if you sent in a new Elist entry yet. TM> Yup - Third time yesterday.. THIS time I talked to him and TOLD him it TM> was en-route.. Awaiting acknowledgement now!!(Wow - All those calls to TM> Vancouver BC.. :-(. . . ) JA> Since you are in internet you could have sent it that way. Take a look n JA> the Elist files for instructions on how to do it. It is, by far, the JA> cheapest way. Yeah - probably should have - will do next time.. However, it "TOOK" this time!! JA> Thanx Thank YOU!! :-) Take care!! Tom.. (tom.mckeever@mit.com) (ksc_admin@ids.net) SPACECON/BRAVEHEART BBS (1:374/22) (407) 459-0969 452-8969 453-5393 (1200-28800 Baud) (Home of INFOLOG, OTVIEW, & POST_POLIO and CARDIAC Echoes!!) OUR WC5 BBS: HTTP://spacecon.net or TELNET/FTP spacecon.net * WCE 2.1G1/2037 * I don't have a solution but I admire the problem. --- WILDMAIL!/WC v4.12 * Origin: SPACECON Med/Disab. BBS - Home of ye POST_POLIO ECHO. 1:374/22.0) --------------- FIDO MESSAGE AREA==> TOPIC: 230 POST POLIO Ref: D5P00000 Date: 05/12/96 From: BACKBONE OPERATIONS Time: 12:17am \/To: ALL (Read 1 times) Subj: Expired Listing Hello. The listing in the Zone 1 EchoList for this echo has expired. The Zone 1 Backbone only carries echoes listed in the Zone 1 EchoList, so it will be necessary for someone to assume the moderatorship and list it if it is to remain on the Zone 1 Backbone. There is a three month grace period to accomplish this. During the first month only the old moderator can list the echo. After this, anyone can list it. If the old moderator is gone, then perhaps now is a good time to hold an election to choose a new one. For more information please consult these files: BOFAQxxx.TXT and ELISTxxx.ZIP, where "xxx" is the version number. They are available from most hubs or can be requested from 1:1/200, 1:1/201, 1:283/120 or 1:396/1. If you need assistance, please contact Marge Robbins, 1:283/120. Regards, Zone 1 Backbone Operations --- Harvey's Robot v6.00 * Origin: Southern Star - V.32b/V.FC/V.34/ISDN - 504-885-5928 - (1:396/1) --------------- FIDO MESSAGE AREA==> TOPIC: 230 POST POLIO Ref: D5U00000 Date: 05/24/96 From: WARREN KING Time: 07:34am \/To: ALL (Read 3 times) Subj: G.I.N.I. Hello All! There has been some discussion on the internet post polio list about trying to attend the G.I.N.I. conference in St. Louis next year. Anybody here planning to attend? It would be great if some of us could meet there. I am going to see if there is any way that I can do it. Unfortunately, it falls on the same time period that another conference I like to attend does. Hard to get off work that much time. :-) Regards, Warren --- * Origin: HandiNet B B S, Virginia Beach, VA (804)496-3320 (1:275/429) --------------- FIDO MESSAGE AREA==> TOPIC: 230 POST POLIO Ref: D5X00000 Date: 05/27/96 From: MAURO@CHELSEA.IOS.COM Time: 02:48am \/To: TOM MCKEEVER (Read 2 times) Subj: FDR MEMORIAL ARTICLE NOTE: This message was originally in conference "INTERNET - E-MAIL AREA" and was copied here by Tom Mckeever. From: Robert Mauro To: Multiple recipients of list POLIO Date: Mon, 27 May 1996 08:12:02 -0400 Subject: FDR MEMORIAL ARTICLE Curtis Roosevelt, a relative of FDR, does not want FDR shown in a wheelchair. He is the FDR family member on the board. There will be one, maybe two, photos of FDR in a wheelchair at entrance of monument. U can write to the commettee in Washington, DC. Here's an article I wrote on this subject: REMEMBERING FDR IN STONE By Robert Mauro In Washington, DC, the memory of great Presidents has been memorialized. Washington, Jefferson, Lincoln, and now Franklin Delano Roosevelt. FDR will finally have his own 54-million-dollar memorial on 7.5 acres of land beneath the cheery blossoms and near the Tidal Basin in our nation's capital. It will take two years to build. Completion is set for 1997. But something will be missing. FDR's disability. According to the wishes of his descendants and FDR himself, the FDR Memorial Commission, established in 1955 by Congress, will not show Roosevelt as a person with a disability. Senators Daniel Inouye and Mark Hatfield, who co-chair the bi-partisan congressional commission to erect the memorial, have said to me in long letters that FDR never referred to his disability in public, nor did anyone else ever mention it in his presence. Both senators have told me Roosevelt's disability was to the thirty-second president a "private matter." Nevertheless, the memorial commission and Roosevelt's living descendants all agree that they must and do respect the feelings of the many Americans with disabilities who have written or spoken to them urging that FDR be shown in or with his wheelchair. One promise the commission does make is that FDR will not be shown standing alone unaided. However, the Roosevelt family and the commission have respectfully disagreed with disabled activists and citizens who would like to see Roosevelt with his wheelchair. FDR's oldest living grandson, Curtis Roosevelt, has said that never was anyone, including himself, allowed to refer to his grandfather's polio. David B. Roosevelt, who sits on the memorial commission, concurs. In fact, there are over 125,000 photos of FDR in the FDR Presidential Library in Hyde Park, NY, but only 1 of those photos shows Roosevelt in his wheelchair. There is a possibility that that one rare photo might be displayed in the entry building of the FDR Memorial. Although the memorial will have a number of sculptures of FDR, none will show him in his famous personally-designed wheelchair. Instead, he will be shown, for example, sitting behind a desk delivering a fireside chat, and there will be one of him in his famous cape, sitting in a chair beside his dog Fala. The only actual acknowledgement of FDR's disability will be carved in a granite time line. It will state: 1921, STRICKEN WITH POLIOMYELITIS - HE NEVER AGAIN WALKED UNAIDED. Some of us with disabilities, especially those of us with polio, have hoped that more emphasis would be placed on Roosevelt's disability. We had hoped that if the average citizen could see FDR as he really was, a man first, but a man who just happened to have a disability, that countless visitors to this great memorial would come away thinking that even men or women with disabilities could accomplish great things. Of course, there is another side to this view: not every man or woman with a disability had FDR's wealth, family connections (President Teddy Roosevelt), and non-disabled head start. In ways, perhaps FDR knew this. He also knew that in his day the average citizen might not accept a man in the White House who sat in a wheelchair and who needed help dressing. So he hid his disability, never letting the press photograph him being carried from his car to his wheelchair. And when one new press photographer photographed FDR being carried, the veteran press boys and secret service grabbed that film. This is all reported in Hugh Gregory Gallagher's excellent book FDR'S SPLENDID DECEPTION. Franklin D. Roosevelt was a man just like most men. He had his insecurities, his vanities, and his fears. His greatest fear was being trapped by fire. He worked hard, teaching himself how to crawl from a room in an emergency. His sons promised never to leave him alone. Someone would always be with him. FDR hated what he felt was the loss of the privacy and independence he had enjoyed before his disability. Of course, today many of us who are disabled do enjoy privacy and independence. FDR was ashamed of his "withered legs," but only around nondisabled Americans. At Warm Springs, where the children with polio called him Doc, Roosevelt often swam with these disabled kids. At picnic with them, the President wore his braces outside his pants. He felt free, totally accepted, and just like anyone else. The cold-hearted Stalin admired Roosevelt for his fairness and strength of character. Churchill said he felt a great feeling of relief when he had confided to FDR about his fears of German aggression on the brink of World War Two. Calling the President at 3 a.m. London time, Churchill could not go to sleep until he had talked to Roosevelt. It is still unknown exactly what Roosevelt told Churchill, but whatever it was, Churchill came away assured he would not be alone in his fight with Hitler. Churchill said of FDR, "He is the greatest man I have ever known." In the 1940 presidential race, a reporter asked Eleanor Roosevelt if FDR's disability had affected his mind. Yes, she said. It had made him more sensitive to the needs of others. In her book NO ORDINARY TIME, historian Doris Kearns Goodwin tells how FDR always "acted upbeat, so as not to disappoint the expectations of everyone around him." How sad that Roosevelt, who was often depressed, had to put on a happy face to his public. And in ways, so has his memorial. FDR died on April 12, 1945, from a sudden a cerebral hemorrhage. His last words were, "I have a tremendous pain in the back of my head." However, according to Doris Kearns Goodwin's book NO ORDINARY TIME, FDR's daughter, Anna, moved into the White House in mid-1944, to work with her father and be with him while Eleanor was out on her many trips. Anna began to notice her father looked very ill as she worked close to him that year. He was pale, had frequent headaches, trouble breathing, and couldn't sleep well at night. Eleanor attributed this to stress. She denied there was anything physically wrong with FDR. But Anna wanted her father examined by experts. He was. It was found that his blood was poorly oxygenated. His lips and nail beds were blue, and he was frequently fatigued during the day, occasionally nodding off. One doctor said he had congestive heart failure. Other specialist disagreed. Could this have been Post Polio Syndrome? No one around FDR, but Anna, would admit to Franklin's illness. Most attributed his fatigue and exhaustion to his hard work. But had this been PPS? Had his heart begun to fail because of his poor oxygenation? It sure looks like all the symptoms to me. Now Franklin Delano Roosevelt is now going to be memorialized for the ages. His great memorial will sit near those of Jefferson, Lincoln, and Washington. If you would like to express your opinion on the FDR Memorial, I urge you to write to U. S. Senators Mark O. Hatfield and Daniel K. Inouye at the FDR Memorial Commission, 825-A Hart Senate Office Building, Washington, DC 20510. Or call 202-228- 2491. You can FAX the Commission at 202-228-1010. Urge both Senators to be certain that that one rare photo of FDR in his wheelchair is displayed proudly and prominently in his memorial. Then everyone can feel upbeat and uplifted when they visit this long-awaited memorial, everyone including this country's 49 million Americans with disabilities. Bob, Mauro@Chelsea.Ios.Com -------------------------------------------- | The PeopleNet DisAbility DateNet Home Page | | "Where People Meet People" | | http://chelsea.ios.com/~mauro | | CHECK OUT OUR DISABILITY BOOK SALE | -------------------------------------------- --- WILDMAIL!/WC v4.12 * Origin: SPACECON Med/Disab. BBS - Home of ye POST_POLIO ECHO. 1:374/22.0) --------------- FIDO MESSAGE AREA==> TOPIC: 230 POST POLIO Ref: DA100000 Date: 05/31/96 From: LD WALKER Time: 04:56pm \/To: ALL (Read 2 times) Subj: fatigue, recovery Sorry, I've been lurking again! Well, acutally I have been lurking a few minutes today; h --- GOMail v2.0 [94-0125] * Origin: H-E-B BBS Help!!! get me out of here!!! (1:130/901) --------------- FIDO MESSAGE AREA==> TOPIC: 230 POST POLIO Ref: DA100001 Date: 05/31/96 From: LD WALKER Time: 05:13pm \/To: ALL (Read 2 times) Subj: fatigue, recovery Well, I've been lurking again, actually I've been lurking for the last few minutes. Have been too busy to even log in and lurk for the past several weeks. I see there is some activity, but light, sure miss the old crowd that was here. Guess as Tom says, most have migrated to the I'net list. I'm sure it is a good way to communicate (I do use it) but the group here seemed to be more close knit and better aquainted. I would like to hear from others about their experience with the fatigue and recovery process encountered when a victim of PPS. I'm curious if others experience the same routine I do. When I have become fatigued, it seems that even though I have slept for ten or more hours, I may remain fatigued for several days or more. Something strange seems to occur when I recover my stamina. I will have aching in my legs, a trembling feeling (although the trembling is not visible), and a weak feeling in the legs. Within about a twenty to thirty minute period, the symptoms just disappear. This may occur in the afternoon after feeling ugh all morning. (I still am working full time, although I'm not sure for how much longer) How about it? Does anyone else have this seemingly (at least to me) strange routine of fatigue and recovery? Tom, please cross post to the I'net list if you would like, I haven't found the time yet to learn how to post there. Thanks for any info L.D. ldwalker@why.net P.S. Tom McKeever what is the location of your I'net home page? I found it once, but can't seem to locate it again. --- GOMail v2.0 [94-0125] * Origin: H-E-B BBS Help!!! get me out of here!!! (1:130/901) --------------- FIDO MESSAGE AREA==> TOPIC: 230 POST POLIO Ref: DAB00000 Date: 06/05/96 From: CORAM@AOL.COM Time: 09:40am \/To: TOM MCKEEVER (Read 2 times) Subj: Letter to CDC NOTE: This message was originally in conference "INTERNET - E-MAIL AREA" and was copied here by Tom Mckeever. From: Coram@AOL.COM To: Multiple recipients of list POLIO Date: Wed, 5 Jun 1996 15:20:06 -0400 Subject: Letter to CDC Walter, as you requested here is a copy of my letter to the CDC in re. the polio vaccine. It's based on information posted by Eddie Bollenbach that I hope I have interpreted correctly: >>> Gloria A. Kovach Committee Management Specialist CDC (16-4346) 1600 Clifton Road NE Mailstop D 50 Atlanta, GA. 30333 Dear Ms. Kovach: As a polio survivor of the 1950 epidemics I would strongly urge your committee to recommend use of the killed (improved) Salk vaccine first, which will provide a level of immunity before the Sabin live vaccine is used. As I'm sure you are aware the only cases of polio in the U.S. for the past several years have been caused by the live Sabin vaccine and it is unconscionable to subject anyone to the horror of polio and Post Polio Syndrome for the sake of convenience much less the marginal profits of a large corporation. Thank you for your consideration. Richard Coram >>> I hope this is what you had in mind and I am posting it here to the List in case you would like to offer corrections to others who haven't written yet. Take care, Coram in alabam coram@aol.com --- WILDMAIL!/WC v4.12 * Origin: SPACECON Med/Disab. BBS - Home of ye POST_POLIO ECHO. 1:374/22.0) --------------- FIDO MESSAGE AREA==> TOPIC: 230 POST POLIO Ref: DAB00001 Date: 06/05/96 From: BOLLENBACH@COMMNET.EDU Time: 11:14am \/To: TOM MCKEEVER (Read 2 times) Subj: ATTENTION: MARCH OF DIMES UPDATE! NOTE: This message was originally in conference "INTERNET - E-MAIL AREA" and was copied here by Tom Mckeever. From: Eddie Bollenbach To: Multiple recipients of list POLIO Date: Wed, 5 Jun 1996 17:46:59 -0400 Subject: ATTENTION: MARCH OF DIMES UPDATE! List Readers: This is to update everybody about the work Ron, Tom, and I have been doing over the past coupla 4 weeks to try to get the March of Dimes to provide more accurate and helpful information on their Web page. The strategy was to approach them in a non-threatening way, at least until we found out what we wanted, which was the name of the person or persons who have authority and responsibility for the Web page. Ms. Greenup is this person, and I have spoken to her, although not about polio. She informed me that science writers interpret the scientific literature and write the information on the page. She also told me that they are now in the process of updating information because "the stuff on the page is old". Ron did an excellent job analyzing one paper they used (Ramlow). Dr. Laporte was a co author and Ron contacted and spoke with him. Tom spoke with Dr. Bruno and both he and I helped with the editing and strategy. Anyway, the following letter tells them what we want and puts them on the spot a bit. It remains to be seen what will happen, if anything. I invite the comments of Ron and Tom and anyone else who wishes to add. We don't know what the next step should be. I have been told that they (MOD) get rather defensive when the subject of polio comes up. I had a rather pleasant phone conversation with Ms. Greenup about how scientific stuff gets changed on their information pages. She invited me to send suggestions. And, she said, they welcome new information from researchers. I'll bet she was real surprised when my name showed up on the following letter with the other two stiffs listed. I guess dinner and dancing are out now, Oh well. The text of the letter we sent follows. Eddie ______________________________________________________________________________ Ms. MaryAnne Greenup May 29, 1996 March of Dimes Birth Defects Foundation 1275 Mamaroneck Avenue White Plains, New York 10605 Dear Ms. Greenup: We are individuals with Post Polio Syndrome (PPS) who became acquainted on Internet groups related to PPS. There has been some discussion in these groups of the March of Dimes World Wide Web Page which gives information about PPS and Post Polio Muscular Atrophy (URL cited below). It is our opinion that the MOD PPS Page seriously understates the problems created by PPS. As currently written, the Page contains erroneus statements and gives a falsely optimistic projection of the problems of PPS. Information like this can discourage polio survivors who are experiencing new symptoms from consulting with physicians, from obtaining informed and effective care from physicians, and from making the lifestyle changes that are necessary to minimize the disability that can be caused by PPS. PROBLEMS WITH THE WEB PAGE AS CURRENTLY WRITTEN: The information on the page is primarily taken from Ramlow et al 1992, an epidemiological study funded by MOD (2). Ramlow et al claim that previous clinical studies had overestimated the frequency of PPS among polio survivors. We will not dispute this point; determining the true frequency of PPS is problematic due to widely varying definitions and information sources. Our criticisms come from two sources. First, the MOD PPS page misstates the findings of Ramlow et al, making PPS seem less serious than the article reports. Second, the Page uses Ramlow et al as a source of information not only about frequency of PPS, but also about the severity of the symptoms of PPS. While Ramlow et al may be right in criticizing clinicians for their epidemiological conclusions, it is clinical (not epidemiological) studies which are best able to estimate the degrees of disability which are caused by PPS. The questionnaire survey used by Ramlow is a crude measure of severity of disability, even if it had been summarized correctly. SPECIFICS WHICH SHOULD BE ADDRESSED: First, the MOD Page states that "the incidence of [PPS] symptoms peaks at 30 to 34 years after the initial polio infection." This is an obvious misreading of the Abstract of Ramlow et al, which states "The strongest determinant of post-polio _onset_ was the length of the interval following the actual illness, with incidence peaking at 30-34 years." (emphasis added.) The interpretation that _symptoms_ peak at 30-34 years is wrong. This implies that symptoms, after 34 years, are either relieved or get no worse. PPS symptoms get worse after their incidence, sometimes much worse. The Page fails to recognize or report this very important fact. Second, the Page states "PPMA is seldom disabling. ... Dr. LaPorte's study [Ramlow et al] found that only about 20 percent of PPS patients reported a need to use aids for mobility or breathing." The 20% figure seems to be a misstatement of Ramlow et al's report on changes of "impairment status." "The impairment status of more than three fourths of the cases did not change from the time of their recovery from the acute illness to the present despite the onset of late muscle weakness" (Ramlow et al p. 776). Impairment status is a very crude measure of disability. Impairment status is only changed when one _begins_ to use 1)ambulatory aids, 2) a wheelchair, 3) a respirator, or 4) stops working due to disability. A woman who was formerly able to walk 20 miles and can now only walk 20 feet, but who does not use a cane, has not changed her impairment status. By the writer's reasoning, she was not disabled by PPS. Impairment status is a very poor measure of disability. _Many_ more people are disabled by PPS than would show up on Ramlow et al's measure of changes in impairment status. In fact Ramlow et al reports a great deal of disability caused by PPS. 78% of all subjects reported at least one new symptom during the last 10 years, 42% report a new impairment in their daily living, 40% report new joint pain, 35% report new muscle weakness, 33% report new muscle pain, and 32% report new fatigue. All of these are disabling conditions. Ignoring these statistics while choosing to report the smaller "impairment status" figure distorts the facts of disability caused by PPS. Ramlow et al report that only about 21% of the above group have made new use of mobility or respiration aids (despite the reports of increased disability). In a positive tone, they summarize this by saying that 79% did not report new or resumed use of aids for mobility or respiration. Given the clinical knowledge we now have regarding PPS and the probable denervation/reinervation etiology (which Ramlow et al themselves accept) an important question arises: Should more people reporting new symptoms be making use of mobility and respiratory aids? It is very difficult for many PPS people to come to terms with their new disabilities or make timely adaptations to maintain a high functional level. Clinical studies have stressed the importance of lifestyle changes including the use of aids for mobility and respiration. Ramlow et al report the failure of many to accept those changes as evidence _against_ the severity of PPS disability! This ironic result is a disservice to the many people with PPS whose well being would be improved if they were _encouraged_ to accept such modifications rather than being informed that they weren't needed. One final factor which was overlooked on the MOD Page: For those of us with relatively severe residual disability from polio, even the most gradual increases in impairment can have drastic effects on our wellbeing. The reality of increased disability, both among severely and less severely impaired polio survivors, is unquestionable to the group with which we have been in contact on the Internet. OUR REQUEST: At a minimum we request that the erroneouus statements and conclusions be removed from the MOD PPS Page. Even more, we would like the MOD Page to be in the forefront of current clinical practice promoting the information necessary to reduce the disability and extend the functional lives of those who are experiencing symptoms of PPS. Many of us are professionals and researchers, and would be pleased to provide MOD with citations and summaries of the relevant clinical research, and/or pointers to Internet sites with PPS information. We do not doubt that MOD's intent was to support polio survivors by supplying useful and suitable information to them. We respectfully submit that the MOD PPS Page can be improved in that regard. We would be glad to help improve it. We ask that your science writers, in updating its information on the March of Dimes Page, be provided with this communication to help them in their attempt to inform polio survivors of the realities and problems faced by many of them. Thank you for your consideration. __ Ron Amundson PhD University of Hawaii at Hilo ronald@Hawaii.Edu Edward Bollenbach MA Northwestern Conn. Community/Technical College Bollenbach@commnet.edu Thomas A. Dempsey, JD American Benefit Consultants dempt@eskimo.com