Informational Video I found–wanted to share

    • Anonymous
      June 2, 2007 at 12:18 am

      If you don’t understand what this doctor is talking about you should have another window open and jump to it and Google some of the things he talks about and learn,as you will hear their is a lot of unanswered questions about GBS, Also that 97% of GBS in the USA is of one variable. God Bless –Dan

      http://video.google.com/videoplay?docid=4240163006476883695

    • Anonymous
      June 2, 2007 at 12:58 am

      Quite dry and technical but shows the complexities in making a diagnosis.
      My mom has been ill since mid March and in hospital since mid April. The doctors are still wavering on a solid diagnosis and have given her not treatment other than some OT.

      Bc, Canada.

    • Anonymous
      June 2, 2007 at 8:56 am

      Thanks Dan. Good information.

    • Anonymous
      June 2, 2007 at 10:41 am

      Wheelchairdan great video here is another dealing with children

      [url]http://video.google.com/videoplay?docid=-3931160019778160710&q=CIDP[/url]

      Sue

    • Anonymous
      June 2, 2007 at 10:42 am

      dan,

      great find. notice dr. jack griffin the chair of neurology at johns hopkins says erarly treatment helps prognosis. this is a statement all should bring to their docs who do not act immediately. this is not a disorder that warrants observation. quick ivig is needed. take care. be well.

      gene gbs 8-99
      in numbers there is strength

    • Anonymous
      June 3, 2007 at 8:13 am

      I think this is a good pic for GBSers to see as it shows the axon also and cell body and dendrites, I beleve the dendrites are the ones that will grow out new ones to make up for the ones that were killed off in the original GBS attack, This only happens when there is axon damage during the GBS,with the reserch I’ve read all GBS variants have Axon damage but the ones like AMAN which I believe involves a lot of the Axons. God Bless Dan

    • Anonymous
      June 3, 2007 at 8:14 am

      [QUOTE=wheelchairdan]I think this is a good pic for GBSers to see as it shows the axon also and cell body and dendrites, I beleve the dendrites are the ones that will grow out new ones to make up for the ones that were killed off in the original GBS attack, This only happens when there is axon damage during the GBS,with the reserch I’ve read all GBS variants have Axon damage but the ones like AMAN which I believe involves a lot of the Axons. God Bless Dan[/QUOTE]
      Sorry–Here is the Site–DUH
      [url]http://www.webmd.com/hw-popup/Neuron[/url]

    • Anonymous
      June 4, 2007 at 12:21 am

      I know most of these mayhave been seen by you all but here they are if interested. God Bless –Dan

      [url]http://www.angelfire.com/home/gbs/[/url]

      [url]http://www.jsmarcussen.com/gbs/print/residual2.htm[/url]

      [url]http://www.geocities.com/CapitolHill/4277/me-restore.html[/url]

    • Anonymous
      June 8, 2007 at 4:03 pm

      [url]http://www.nature.com/nm/journal/v6/n7/full/nm0700_738.html[/url]

    • Anonymous
      June 8, 2007 at 5:16 pm

      Dan,

      I have never seen the nature.com article before, I started reading it, but my brain wasnt taking much more in towards the end, so I will carry on a little later. Thank you for that, It is very interesting.

      (Do you get ‘The Communicator’ newsletters? Have you read the “Whats in a Name?” article from last year?)

    • Anonymous
      June 14, 2007 at 1:19 pm

      [QUOTE=ali]Dan,

      I have never seen the nature.com article before, I started reading it, but my brain wasnt taking much more in towards the end, so I will carry on a little later. Thank you for that, It is very interesting.

      (Do you get ‘The Communicator’ newsletters? Have you read the “Whats in a Name?” article from last year?)[/QUOTE]

      Hi Ali. I never saw this article,do you have it? maybe you could scan and send so we can read, Thanks–P.S. I did look on the net and did come up with this from the Communicator 2004. I’ll tell you the end part about
      Axonal regeneration sounds just like Post Polio Doesn’t it–BECAUSE IT IS THE SAME!!
      God bless— Dan

      Sunday, March 14, 2004
      GBS Newsletter – The Communicator Spring 2003
      Residual Effects Following Guillain-Barre
      Gareth J. Parry, MD Professor of Neurology, University Of Minnesota

      Guillain-Barr~ syndrome is a disorder whose excellent prognosis is invariably emphasized. Widely accepted figures suggest that 75%-85% of patient make a complete recovery. However, many of my patients have complained to me of minor but annoying persistent symptoms continuing for years after the initial paralytic event. Although I have made no systematic study of the proportion of patients with these residual complaints it is certainly more than the 15%-25% that the figures in the literature would suggest. The great majority of studies of the ultimate outcome in GBS are based on telephone interviews or retrospective chart reviews and seemingly minor complaints may have been missed or disregarded. Thus, patients are often asked if they have returned to their previous work or other previous activities but they may not have been asked whether they have more difficulty performing their former activities. A note of caution was sounded in one small study from Dr. J. McLeod and his colleagues in Australia (J. Neurol Sci 1976; 27:438-443) who objectively evaluated a small group of 18 recovered GBS patients and found that half of them had objective residual neurological abnormalities. Even then the residual abnormalities were considered to be significant in only four patients. A recent important paper from Dr. I.S.J. Merkies and colleagues in Holland (Neurology 1999; 53:16481654) has established that residual effects from both GBS and CIDP are much more common than has been generally reported and that seemingly minor neurologic abnormalities may still result in annoying disabilities. The study used a validated index of fatigue severity to assess residual disability. It included 83 patients who had suffered from GBS an average of five years previously. About 80% of these patients experienced fatigue that was considered severe enough to interfere with their life despite the fact that the majority had normal strength or only minor weakness. They noted also that the fatigue did not seem to improve over time; the fatigue index score was the same in patients in whom many years had elapsed as it was in patients whose acute illness had occurred only 6-12 months previously. This paper provides sound scientific support for the validity of the observations of my patients who regularly complain of fatigue even when they have returned to all or most of their former activities and who are working full time at their former jobs. Although their strength may be normal when they are examined in the doctor’s office they are clearly unable to sustain the same level of physical activity that they had performed prior to their GBS.
      A second under-appreciated symptom that may persist for many years is pain. Certainly, severe disabling pain is very rare. However, a number of my patients complain of persistent discomfort in their feet. The discomfort may take the form of annoying paresthesias (tingling) or there may be a vague aching discomfort. Occasionally there is more severe burning or stabbing pain. The symptoms have the same characteristics as typical neuropathic pain in that they tend to be worse in the evening or at night and are particularly annoying following days during which the patients have been up on their feet a lot. The discomfort is not particularly responsive to analgesics but usually does respond to antiepileptic drugs such as gabapentin, or antidepressant drugs such as amitriptyline, drugs typically used in the treatment of neuropathic pain. However, these medications have to be taken on a daily basis to be effective and one problem with deciding whether to treat this residual symptom is that the discomfort is usually rather mild. Thus, patients may be daily irritated by their symptom but be reluctant to take a drug every day for a symptom that significantly bothers them only once or twice a month. I have seen no mention in the medical literature of this phenomenon. It is possible that I see a highly selected group of patients in my practice who had initially been more severely affected and that the prevalence of this annoying residual symptom is much higher in my patients than in the usual population of recovered GBS patients. I would be most interested to learn whether the group of patients reported by Merkies and colleagues also suffered from minor persistent discomfort.
      The basis for both of these seemingly minor residual symptoms (fatigue and pain) is probably axonal degeneration. During the acute illness the predominant underlying pathology in most patients is segmental demyelination, a completely reversible phenomenon. However, some degree of axonal degeneration is almost invariable and in some patients it is severe. As recovery occurs function is restored by a number of mechanisms. Axonal regeneration of motor axons probably plays very little role in restoration of function except in the more severe cases. Rather, surviving axons send out small branches called collateral sprouts that restore the nerve supply to those muscle fibers whose nerves have been damaged. This process of collateral sprouting is very effective at restoring strength to a muscle but the efficiency of the muscle suffers the muscle must work harder to achieve its goals. Thus, fatigue may result even when there appears to be full restoration of strength. On the sensory side, even a small number of damaged sensory axons may be sufficient to generate spontaneous discharges that are registered as pain or discomfort.
      It is entirely appropriate that the good outcome of GBS should be emphasized during the acute illness. During this time, the patient is losing control of many motor functions, sometimes including life-preserving functions, and constant reassurance from the attending physicians plays a vital role in the recovery process. However, it is equally important to be aware that residual problems are experienced by “recovered” GBS patients. Acknowledgement that such residual problems exist will go a long way towards helping patients deal with the frustration of their incomplete recovery.
      More research is needed to discover an effective treatment for the residual fatigue. In addition, since these persistent symptoms are probably related to the degree of axonal damage that occurs at the time of the initial attack, we also need to continue to strive for earlier and more effective treatment of the acute stage of the disease so that these residual problems are minimized.

    • Anonymous
      June 14, 2007 at 2:35 pm

      Dan,

      I typed the article out as soon as I got the news letter, it was later added to the anglefire website ….. soooooo, i will paste the original one I typed and add the anglefire website after 😀 .
      (It seems to be the article that I post everywhere lately, I’m sure some are getting sick of me posting it – however, it does explain what some are going through)

      [QUOTE]

      [B][FONT=Arial][SIZE=5]What’s In a Name? Important Differences
      Between GBS, CIDP and Related Disorders[/SIZE][/FONT][/B]
      [SIZE=2][I]__________________________________________________ ______________________

      David S. Saperstein, M.D., Phoenix Neurological Associates, Phoenix, AZ[/I][/SIZE]

      [FONT=arial][SIZE=2]This article will discuss the differences between Guillain Barre Syndrome (GBS) and related conditions. Recently I have seen cases where misunderstanding of these concepts led to less than ideal management. I have also frequently observed confusion about terminology among patients and physicians.

      [/SIZE][/FONT][FONT=arial][SIZE=2]GBS may also be referred to as acute inflammatory demyelinating polyneuropathy (AIDP). This emphasizes the acute nature of this disorder: symptoms come on abruptly and progress rather quickly. Symptoms stop progressing, often within 2 weeks, and usually not more than 4 weeks. After a period of weeks to months, patients then begin to experience improvement. Although the majority of patients with GBS will do rather well, not all patients will recover fully and may experience chronic weakness, numbness, fatigue or pain. Once symptoms stabilize, there is rarely any further deterioration.

      [/SIZE][/FONT][FONT=arial][SIZE=2]Chronic inflammatory demyelinating polyneuropathy (CIDP) produces manifestations similar to GBS, but there are important differences. Symptoms tend to come on more slowly and progress for a longer period of time. Patients may stabilize and recover, but then experience a return of symptoms in the future (this is referred to as the relapsing form of CIDP). Alternatively, patients may experience progressive CIDP wherein there is slow, continuous progression without a period of stabilization. By definition, if there is progression of symptoms beyond 8 weeks, the patient has CIDP. Patients with CIDP often need sustained treatment, but many experience complete remission or at least improve and stabilize on medication.

      [/SIZE][/FONT][FONT=arial][SIZE=2]A less well-appreciated disorder is subacute demyelinating polyneuropathy (SIDP). SIDP is defined by a progression of symptoms for more than 4 weeks but less than 8 weeks. In other words, the time frame falls in between that of GBS and CIDP. This is an uncommon but interesting group of patients. It is necessary to identify these patients because there can be important considerations regarding their treatment (see below).

      [/SIZE][/FONT][FONT=arial][SIZE=2]The most important reasons for distinguishing between GBS, SIDP and CIDP are to help anticipate outcome and to determine the optimal therapy. Patients with GBS are usually treated with a course of either of two therapies: intravenous immunoglobulin (IVIg) or plasma exchange (PE). IVIg and PE are equally effective (and there is not an advantage to using both treatments). Typically, a single course of treatment is given, usually as soon as possible after diagnosis. The goal of treatment is to hasten improvement. Patients with GBS will improve without treatment; IVIg or PE just accelerate recovery. As discussed above, the full extent of recovery will not occur for many months (or even years). This is an important point that is often not appreciated. Some GBS patients certainly do improve quickly and dramatically after being treated with IVIg or PE. However, most do not. Therefore, repeat courses of IVIg or PE or treatment with a different therapy are typically not indicated.

      [/SIZE][/FONT][FONT=arial][SIZE=2]A number of GBS patients will have permanent symptoms. These symptoms are from nerve damage. IVIg and PE treat inflammation of the nerve, but do not help with nerve recovery. Nerve recovery can occur, but takes time. Persistent symptoms do not mean a person has CIDP. CIDP is diagnosed when there is continued [I]progression[/I] of symptoms (not continued [I]persistence[/I] of symptoms).

      [/SIZE][/FONT][FONT=arial][SIZE=2]In contrast to GBS, CIDP patients are treated with repeated courses of IVIg or PE (or daily doses of other medications such as prednisone, azathioprine, cyclosporine or mycophenolate mofetil). Without sustained treatment, patients with CIDP will usually relapse and continue to worsen. Over time, the amount of medication can be decreased in many patients and, in some patients, treatment can be discontinued entirely.

      [/SIZE][/FONT][FONT=arial][SIZE=2]Finally, we come to SIDP. Treatment is usually as for GBS: a single course of IVIg or PE. This will be sufficient for many of these patients. However, some SIDP patients are actually CIDP patients who got treated before they could declare themselves by progressing for 8 or more weeks. If they are not watched closely, patients with SIDP can quickly deteriorate. These patients will need more sustained treatment, as in the case for CIDP.

      [/SIZE][/FONT][FONT=arial][SIZE=2]Now that I have defined the syndromes, I would like to give some examples of how incomplete appreciation of these disorders can lead to misunderstandings regarding therapy. I have seen several patients with SIDP diagnosed with GBS and treated with a single course of IVIg or PE. That is appropriate, but then when these patients subsequently worsened after a few weeks or months, they were either not re-treated or they were repeatedly treated with just a single course of therapy. They would improve and then worsen again and again. In such cases, continued treatment is needed to stabilize these patients (such as IVIg administered every month). A different error is to give a GBS patient IVIg or PE to treat chronic, stable, persistent symptoms. These treatments will not help. Recall that the persistent symptoms are due to damaged nerves. At the current time, we do not have therapies to restore the damaged nerves (but there are medications that can be used to help nerve pain).

      [/SIZE][/FONT][FONT=arial][SIZE=2]Hopefully this review has helped clarify the distinctions between GBS, SIDP and CIDP and illustrate the differing outcomes and treatment approaches for these disorders. [/SIZE][/FONT][SIZE=2]
      [B]
      Article from the Summer 2006 GBS Newsletter[/B][/SIZE]
      [/QUOTE]

      [URL=”http://www.angelfire.com/home/gbs/whatsinaname.html”]http://www.angelfire.com/home/gbs/whatsinaname.html[/URL]

    • Anonymous
      June 14, 2007 at 6:27 pm

      This is great stuff gang!! Thank you so much. I feel well “armed” for my visit to the rheumatologist on Monday. “Fibromyalgia” my #$%&. 🙂 I may even drop off a little packet to my current PCP though am planning to change anyway….

      Thanks again for all the research!

    • Anonymous
      June 14, 2007 at 7:01 pm

      Was just wondering Ali & Dan, do you know where these research docs find their patients? Do they ever come here to this board to find people? I would love to be poked and prodded if it meant some sort of better understanding and treatment of long-term symptoms…. Have any of you ever contacted any of these researchers?

    • Anonymous
      June 14, 2007 at 8:43 pm

      Dan,

      This video is facinating! I learned so much from it. Dr. Griffin is a very good teacher/speaker. Thanks for sharing it.

      BTW, Kazim Sheik, one of the neurologists discussed in the video is the Johns Hopkins doctor who diagnosed my GBS which had puzzled the 3 neurologists I consulted prior to seeing Dr. Sheik.

      Suzanne

    • Anonymous
      June 19, 2007 at 4:45 pm

      [url]http://www.ncbi.nlm.nih.gov/sites/entrez?Db=pubmed&Cmd=ShowDetailView&TermToSearch=17351693&ordinalpos=7&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_RVDocSum[/url]

      [url]http://books.google.com/books?id=L2TJDwy0l_0C&pg=PA41&lpg=PA41&dq=renewed+weakness+axonal+guillain+barre+syndrome&source=web&ots=3dIESe6lXE&sig=vMgFvRJVLnm2ho0J0w7Trez1gk0#PPP1,M1[/url]

      [url]http://www.ncbi.nlm.nih.gov/sites/entrez?Db=pubmed&Cmd=ShowDetailView&TermToSearch=11328201&ordinalpos=33&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_RVDocSum[/url]

      [url]http://www.ncbi.nlm.nih.gov/sites/entrez?Db=pubmed&Cmd=ShowDetailView&TermToSearch=17290096&ordinalpos=11&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_RVDocSum[/url]

    • Anonymous
      June 20, 2007 at 10:54 pm

      Thanks for Google video, Very informattive and well presented. Do you know where I can esearch to get more information on GBS and MG (myasthenia gravis}? I have both autoimmunes and another, pernicious anemia.

      Peggy

    • Anonymous
      June 26, 2007 at 10:53 pm

      [QUOTE=peggy80]Thanks for Google video, Very informattive and well presented. Do you know where I can esearch to get more information on GBS and MG (myasthenia gravis}? I have both autoimmunes and another, pernicious anemia.

      Peggy[/QUOTE]
      Hi Peggy, I think the best way to research is to GOOGLE The form of GBS you have and maybe together with the MG, Good luck researching and God Bless

    • Anonymous
      June 26, 2007 at 10:55 pm

      Understanding Guillain-Barré syndrome and central nervous system involvement

      Schoool of Psychology, Massey University, Palmerston North, New Zealand. [email]MaryGregory566@hotmail.com[/email]

      Guillain-Barré syndrome is a rare neurological disease that causes paralysis and may necessitate hospitalization for some patients in its acute stages. It primarily affects the peripheral nervous system, though recent research has shown that for some patients, the central nervous system is involved. The acute phase often requires intensive care services. Recognition is growing that recovery is not as smooth and free of symptoms as previously thought. Following “recovery” some people endure long-term residual symptoms, such as fatigue and pain. Nursing input can be of value by providing support, information, explanations, and empathy to reassure patients and families. A greater understanding of the nature and course of the disease and its ramifications can lead to more effective nursing management and a faster rehabilitation process.

      PMID: 16175926 [PubMed – indexed for MEDLINE]

    • Anonymous
      June 26, 2007 at 11:01 pm

      How Guillain-Barre patients experience their functioning after 1 year.

      Department of Neurology, Jeroen Bosch Hospital, ‘s-Hertogenbosch, the Netherlands. [email]r.bernsen@jbz.nl[/email]

      OBJECTIVE: To analyze how the patient himself perceives his physical and social situation 1 year after Guillain-Barre syndrome (GBS). MATERIAL AND METHOD: The Dutch patients who participated in an international multicenter trial were asked to complete a self-administered questionnaire containing questions on their physical status at homecoming and at 12 months, as well as questions dealing with various aspects of their social condition. RESULTS: Ninety patients participated. Up to 72% had sensory disturbances and loss of power in part of the arms and up to 89% in part of the legs at homecoming. At 12 months, a significant improvement had occurred, but residua were perceived in 36 and 67%, respectively. The residua ranged from irritating to seriously disturbing in up to 49%, and only 33% felt completely cured. Furthermore, 32% had changed their work due to GBS, 30% did not function at home as well as before and 52% had altered their leisure activities. CONCLUSION: One year after the onset of GBS, a considerable number of patients still perceived a decrease of power and sensation with an often disturbing effect. GBS had an evident impact on daily life and social well-being. Copyright Blackwell Munksgaard 2005.

      PMID: 15932357 [PubMed – indexed for MEDLINE]

    • Anonymous
      June 26, 2007 at 11:07 pm

      Impairment in Guillain-Barré syndrome during the first 2 years after onset: a prospective study.Forsberg A, Press R, Einarsson U, de Pedro-Cuesta J, Widén Holmqvist L; Swedish Epidemiological Study Group.
      Centre for Rehabilitation Research, Orebro, Sweden. [email]anette.forsberg@orebroll.se[/email]

      OBJECTIVES: To provide a comprehensive description of impairment in patients with Guillain-Barre syndrome (GBS) in Sweden during the first 2 years after disease onset. METHODS: In this prospective multi-centre study, 42 patients, mean age 52 years, were evaluated at 2 weeks, 2 months, 6 months, 1 year and 2 years. Evaluations made use of validated, reliable measures of muscle strength, grip strength, finger dexterity, balance, facial-muscle function, respiratory function, gait, motor performance and sensory examination, and included patients’ own assessments of pain, fatigue and paraesthesia. RESULTS: Mechanical ventilation was required in 21% of patients. At 2 weeks, 1 year and 2 years after GBS onset: 100%, 62% and 55% of patients had submaximal overall muscle strength; 98%, 38% and 31% subnormal grip strength; and 38%, 14% and 12% affected facial-muscle function. At the same time points, 62%, 10% and 7% of patients were unable to walk 10 m independently; and affected sensation was detected in 93%, 55% and 52%. CONCLUSIONS: Recovery occurred mainly during the first year after onset. At 2 years, motor impairment and sensory impairment were each still detectable in more than 50% of patients. We conclude that residual impairment is significant, somatically widespread and, likely, persistent.

      PMID: 15546603 [PubMed – indexed for MEDLINE]

    • Anonymous
      June 26, 2007 at 11:42 pm

      [QUOTE]We conclude that residual impairment is significant, somatically widespread and, likely, persistent.[/QUOTE]

      Pardon my French, but no $#*& Sherlock.

      Now could someone tell the rest of the docs please?

      Thanks for all your great research input Dan.

    • Anonymous
      June 27, 2007 at 3:28 am

      What Is the Long-Term Outlook for Those With Guillain-Barre Syndrome?

      Guillain-Barre syndrome can be a devastating disorder because of its sudden and unexpected onset. In addition, recovery is not necessarily quick. As noted above, patients usually reach the point of greatest weakness or paralysis days or weeks after the first symptoms occur. Symptoms then stabilize at this level for a period of days, weeks, or, sometimes, months. The recovery period may be as little as a few weeks or as long as a few years. About 30 percent of those with Guillain-Barre still have a residual weakness after three years. About 3 percent may suffer a relapse of muscle weakness and tingling sensations many years after the initial attack.

      Where Can I Go for More Information?

      The National Institute of Neurological Disorders and Stroke conducts and supports a wide range of research on neurological disorders, including Guillain-Barre syndrome.

      For information on neurological disorders or research programs funded by the National Institute of Neurological Disorders and Stroke, contact the Institute’s Brain Resources and Information Network (BRAIN) at:

      BRAIN
      P.O. Box 13050
      Silver Spring, MD 20911
      (800) 352-9424

      Ali, Maybe you should call this institute and ask what takes place with this 3% of post GBS people and if this is the same as what happens with Post Polio people and maybe get something in writing for your presentation this fall. God Bless

    • Anonymous
      June 28, 2007 at 1:33 pm

      Well informative. But one thing is certain….. too much reading at a time is soooo tiresome for me, I have to retire in between from reading…. and this is a residual effect of GBS.

      Thanks for pains taken by all of you for searching the information.

    • Anonymous
      July 2, 2007 at 1:51 am

      Late effects of other disabilities

      An article, Post-Everything Syndrome, appeared in the American magazine, New Mobility (September 2000). Author, Bonnie Moulton, discusses how polio survivors have raised medical and community consciousness about the late effects of all disabilities. She writes, We should give credit where credit is due. Polio survivors – inarguably the largest, most vocal and most politically active disability group in history – have fought to get health care providers, insurance companies and policy makers to recognise that for millions, the experience of polio didn’t end with recovery from the initial illness. The model of self advocacy they created has extended far beyond any single disability. She goes on to describe how survivors of spinal-cord injury, cerebral palsy, spina-bifida, Guillain-Barre syndrome, long term amputation and other physical disabilities considered to be static are experiencing late effects that seem like early ageing. As you will recall from the Network’s booklet Helping polio Survivors Live Successfully with the Late Effects of Polio, some polios develop post-polio syndrome which would seem to be unique to polio survivors. Most polios develop late effects due to the wear and tear of living with a compromised body. It is this that causes problems for people with other physical disabilities. Whatever the causes of their symptoms the different groups’ experiences are often remarkably similar. Pain tops the list, followed by increased fatigue, decreased endurance, increased spasticity and new muscle weakness … protocols that have helped polio survivors, including a transition to a ‘conserve to preserve’ lifestyle may be equally valuable to someone with spinal cord injury or spina bifida. It means that people with Guillain-Barre syndrome have every reason to print out an article from a post-polio Web site and tell their family care physician, ‘This sounds like me! Let’s try some of these things’. The stories in the article will sound familiar to polio survivors. Ken, aged 51, with cerebral palsy, says, You slowly, or sometimes quite suddenly, realize that you can’t do things you used to do easily. Then you realize that you’re not really THAT old. That’s the frightening part. Steve, aged 59, who has spinal injury was told by his physiotherapist ‘You have two speeds now, slow and stop’ … I can’t do six things in one day anymore … As I’ve grown older I’ve learnt to make sure that I don’t make too many demands on myself. As I get better at doing that, I’ve begun to be at peace. The author argues that people with long-term disabilities are more alike than different so they should be a community rather than a collection of enclaves. To have access to services and supports we’ll need as we age, we need to build coalitions. Moulton has much to say about the failure of medicine in handling chronic conditions. She quotes one doctor who recommends that people with late effects of disability consult a specialist in rehabilitation medicine or in sports medicine, Why sports medicine? Once you’ve had a disability for 30 or 40 years, the analogy that you’re doing a marathon (every day!) doesn’t seem that far off. For this we pay a price. ‘There is no doubt that the presence of a disability causes a person to expend more physical, emotional and mental energy every day than a person who does not have a disability’, confirms Renee Kirkby, an amputee for 30 years

    • Anonymous
      July 2, 2007 at 3:01 am

      Hai.Dan,
      Thanks for the info ur sharin………..its really a good work done by u. i really learn a lot by this, carry on with the same.

    • Anonymous
      July 3, 2007 at 4:29 am

      Health officials convinced the Chinese to rename the bulk of their polio to Guillaine Barre Syndrome (GBS). A study found that the new disorder (Chinese Paralytic syndrome) and the GBS was really polio . After mass vaccination in 1971, reports of polio went down but GBS increased about 10 fold…….In the WHO polio vaccine eradication in the Americas, there were 930 cases of paralytic disease—all called polio. Five years later, at the end of the campaign, roughly 2000 cases of paralytic disease occurred—but only 6 of them were called polio (41). The rate of paralytic disease doubled, but the disease definition changed so drastically that hardly any of it was called polio any more.”—Greg Beattie

    • Anonymous
      July 7, 2007 at 2:58 am

      [url]http://www.samcstl.org/mayo/parsexmldisplay.asp?xd=MM00374[/url]

    • Anonymous
      July 7, 2007 at 3:07 am

      I hope these are helping some. God Bless

      [url]http://www.youtube.com/watch?v=h641luMEu8Y[/url]

    • Anonymous
      July 7, 2007 at 3:17 am

      [url]http://www.youtube.com/watch?v=-CB8aIxQVu0&NR=1[/url]

    • Anonymous
      July 18, 2007 at 2:06 pm

      Hello all, This Video is a personal story that we should all see –it shows how family and God play a role in recovery.
      I think it is very important that family be there everyday–even every minute with someone with GBS especially if they are Totally Paralyzed and on a vent for this is a time they need support the most and this is a time you can watch the treatment that they get and make sure they are not being abused by the hospital staff–sadly this does happen more than you may think and in my case 30 years ago in a VA hospital while on active duty I with the help of the Swine flu Shot they gave me was in this Paralyzed State and was abuse BADLY evrything from Verbal, Physical, and yes Sexual, RAPED while paralyzed so don’t think it can’t happpen, keep a close eye on your family member or friend with this disorder or others disorders that can leave them Paralyzed.

      [url]http://video.google.com/videoplay?docid=-5742062471201007689[/url]

    • Anonymous
      July 20, 2007 at 4:15 pm

      Dan,

      I have been trying for two days to think of what to say about the abuse you suffered while in hospital ……. All I can say is that my heart goes out to you!! I am so sorry you had to live through such an awful trial. It is so very sad that there are those whose very job is to help the sick and helpless, yet they take advantage in the most awful way.

    • July 20, 2007 at 8:47 pm

      Dan I am so sorry that those awful things happened to you. It is good that you can talk about it, good for you and good for others. You are an amazingly strong man! I admire your courage and thank you for your service to our country. I value all of the men that have served for our country! God must have put you on this earth to help others in all sorts of capacities, Serviceman, advocate to others on this site with your helpful information, and a survivor of abuse willing to share his story for the good of others.

      Respectfully,

      Dawn Kevies mom 😮

    • Anonymous
      July 22, 2007 at 5:31 pm

      Thanks Ali & Dawn,
      It took years of treatment for me to talk about the abuse, I live with the thoughts more now that I am Totally Disabled from this GBS renewed weakness–all those thought came rushing back–BIG TIME.
      I know you say thanks for your service to me but I don’t rank that–not by a long shot, See back then when I enlisted it was during peace time–No wars going on– also I received a OTHER THAN HONORABLE DISCHARE–because I went AWOL from the medical unit I was in after I got out from the VA hospital, I fought my own WAR and that was the GBS and the Neglect and Abuse but being a teen in the Army and having a messed up head from all that crap I took off and went home because I hated them ALL, I was gone for about 80 days and tried to committ suicide by smashing up my car– As you can see I didn’t succeed but anyway I tuned myself in at that time and was put in jail for No insurance while waiting for the MP’s, After returning they offered me a OTH discharge and I signed myself out with that–yes It cost losing all my benefits, I went on with life and like most after GBS went back to work and I left it all behind me–but after being hit with this Renewed GBS crap I had to give up my job I held for 24 years straight, Had to Cash in all my savings-401k-Kids Collage–and almost lost my house, Now I live off my SSDI–Thank God I was able to work long enough to get enough to skim by on now with SSDI, I did get ahold of the VA and they said they would give me Medical Help ONLY so they gave me a Electric hospital bed and a wheelchair but no money. I use my wifes Insurance because I can’t stand going into the VA hospital–I go into a panic attack. Well I spilled enough of my guts for everyone to see–I better stop–Thanks again–Dan

    • July 23, 2007 at 9:00 am

      Dan,
      You signed up and were willing to make a commitment, it is not your fault you were mistreated. You were willing to serve and that is a serviceman if ever I saw one. You have gone on to be of service to others in a much greater capacity! Keep being strong! You inspire me! So many of you inspire me on this site, I wish I could be half the person all of you are! I see it in Kevin as well, he is now such a compassionate sweet person. This disease does seem to build a strong compassionate people at the very least! God bless all of you!

      Dawn Kevies mom 😮

    • Anonymous
      August 12, 2007 at 3:02 am

      [url]http://video.google.com/videoplay?docid=-6473048817782768299[/url]

      I think I will make mine and I’ll post it on here also.

    • Anonymous
      August 12, 2007 at 9:34 am

      I just love Martin’s sense of humor through his whole ordeal! Thanks for posting this Dan, I hadnt seen this one yet.

    • Anonymous
      August 12, 2007 at 11:28 pm

      Recurrent Guillain-Barré syndrome following influenza vaccine.Seyal M, Ziegler DK, Couch JR.
      Two patients recovered from an attack of Guillain-Barré syndrome and then had a second attack of this disease, with a shorter latent period, following monovalent influenza vaccination. These cases suggest that an attack of Guillain-Barré syndrome may result in greater risk of future episodes of the syndrome in conjunction with exposure to influenza or other vaccinations.

      PMID: 566873 [PubMed – indexed for MEDLINE]

    • Anonymous
      August 12, 2007 at 11:38 pm

      [url]http://www.renewamerica.us/columns/janak/070722[/url]

    • Anonymous
      August 13, 2007 at 12:31 am

      [url]http://content.lib.utah.edu/cdm4/item_viewer.php?CISOROOT=/ehsl-shw&CISOPTR=37&CISOBOX=1&REC=8[/url]

    • Anonymous
      August 13, 2007 at 11:53 am

      Dan,

      I copied the url about Gardasil vac onto two other threads in “Vaccine Reactions”. Thank you for the info!

    • Anonymous
      September 12, 2007 at 2:47 am

      Notice in this video how being tired can worsen symptoms,this is very true with us with Post GBS symptoms also. God Bless you all

      [url]http://content.lib.utah.edu/cdm4/item_viewer.php?CISOROOT=/ehsl-shw&CISOPTR=29&CISOBOX=1&REC=15[/url]

    • Anonymous
      September 12, 2007 at 3:10 am

      I guess we need to watch out how well we cook our chicken. Good video to share with new people of what GBS does. God Bless

      [url]http://www.youtube.com/watch?v=LHmE26S6tkk&mode=related&search=[/url]

    • Anonymous
      September 12, 2007 at 3:32 am

      Diet could help,My doctor has me on a diet much like this one–BUT like most I break the rules, Check it out and God bless.

      [url]http://www.youtube.com/watch?v=BVn-jmCi4zI&mode=related&search=[/url]

      [url]http://www.youtube.com/watch?v=InwsLaTvhzY&mode=related&search=[/url]

      [url]http://www.youtube.com/watch?v=vnGNZ6RDjlg&mode=related&search=[/url]

    • Anonymous
      September 22, 2007 at 12:21 am

      The insufficient reinnervation sounds just like studies of POST POLIO–GOOGLE IT AND SEE!!

      Muscle Nerve. 2005 Jan;31(1):70-7. Links
      Electrophysiological signs of permanent axonal loss in a follow-up study of patients with Guillain-Barré syndrome.Dornonville de la Cour C, Andersen H, Stålberg E, Fuglsang-Frederiksen A, Jakobsen J.
      Department of Neurology, Aarhus University Hospital, Nørrebrogade 44, 8000 Aarhus C, Denmark. [email]lacour@akhphd.au.dk[/email]

      The neurophysiological mechanisms for persisting impairment of motor function after Guillain-Barre syndrome (GBS) were assessed in 37 unselected patients 1-13 years after diagnosis. For evaluation of reinnervation and axonal loss, macroelectromyography (macro-EMG) including measurement of fiber density (FD) was performed. Data from neuropathy symptom score, neuropathy disability score, nerve conduction studies, and quantitative sensory examination were ranked and summed to a neuropathy rank sum score (NRSS). The isokinetic muscle strength at the ankle was measured. Signs of axonal loss with increase of either macro motor unit potential (macro-MUP) amplitude or FD occurred in 76% of patients. The macro-MUP amplitude correlated with muscle strength and with NRSS. Patients with evidence of residual neuropathy had increased macro-MUP amplitude and FD as well as decreased muscle strength compared to patients without evidence of residual neuropathy. We conclude that axonal loss takes place in a substantial number of GBS patients and is associated with permanent muscle weakness caused by insufficient reinnervation. Possible patterns of pathology are discussed in relation to the macro-EMG findings.

      PMID: 15543551 [PubMed – indexed for MEDLINE]
      God bless Dan

    • Anonymous
      September 22, 2007 at 12:27 am

      Check this study out–My doctor told me the same thing and said watch out for meds that affect the central nervous system–They gave me Meds after my gall bladder surgery that affected my CNS and thet almost lost me in recovery, I spent 6 days in the hospital.

      Rehabil Nurs. 2005 Sep-Oct;30(5):207-12.Links
      Understanding Guillain-Barré syndrome and central nervous system involvement.Gregory MA, Gregory RJ, Podd JV.
      Schoool of Psychology, Massey University, Palmerston North, New Zealand. [email]MaryGregory566@hotmail.com[/email]

      Guillain-Barré syndrome is a rare neurological disease that causes paralysis and may necessitate hospitalization for some patients in its acute stages. It primarily affects the peripheral nervous system, though recent research has shown that for some patients, the central nervous system is involved. The acute phase often requires intensive care services. Recognition is growing that recovery is not as smooth and free of symptoms as previously thought. Following “recovery” some people endure long-term residual symptoms, such as fatigue and pain. Nursing input can be of value by providing support, information, explanations, and empathy to reassure patients and families. A greater understanding of the nature and course of the disease and its ramifications can lead to more effective nursing management and a faster rehabilitation process.

      PMID: 16175926 [PubMed – indexed for MEDLINE]

    • Anonymous
      September 22, 2007 at 5:17 am

      The cause of PPS is unknown, but it is thought to be due to a distal ….. with constant denervation and reinnervation after paralytic polio. …
      [url]www.ott.zynet.co.uk/polio/lincolnshire/library/trojan/anticholinesterases.html[/url] – 53k

      Material and methods: Eighty-one former polio sufferers were, … process of denervation and reinnervation has been assumed as the most probable cause (3). …
      pt.wkhealth.com/pt/re/obes/fulltext.00000132-199908000-00002.htm

      [QUOTE=wheelchairdan]The insufficient reinnervation sounds just like studies of POST POLIO–GOOGLE IT AND SEE!!

      Muscle Nerve. 2005 Jan;31(1):70-7. Links
      Electrophysiological signs of permanent axonal loss in a follow-up study of patients with Guillain-Barré syndrome.Dornonville de la Cour C, Andersen H, Stålberg E, Fuglsang-Frederiksen A, Jakobsen J.
      Department of Neurology, Aarhus University Hospital, Nørrebrogade 44, 8000 Aarhus C, Denmark. [email]lacour@akhphd.au.dk[/email]

      The neurophysiological mechanisms for persisting impairment of motor function after Guillain-Barre syndrome (GBS) were assessed in 37 unselected patients 1-13 years after diagnosis. For evaluation of reinnervation and axonal loss, macroelectromyography (macro-EMG) including measurement of fiber density (FD) was performed. Data from neuropathy symptom score, neuropathy disability score, nerve conduction studies, and quantitative sensory examination were ranked and summed to a neuropathy rank sum score (NRSS). The isokinetic muscle strength at the ankle was measured. Signs of axonal loss with increase of either macro motor unit potential (macro-MUP) amplitude or FD occurred in 76% of patients. The macro-MUP amplitude correlated with muscle strength and with NRSS. Patients with evidence of residual neuropathy had increased macro-MUP amplitude and FD as well as decreased muscle strength compared to patients without evidence of residual neuropathy. We conclude that axonal loss takes place in a substantial number of GBS patients and is associated with permanent muscle weakness caused by insufficient reinnervation. Possible patterns of pathology are discussed in relation to the macro-EMG findings.

      PMID: 15543551 [PubMed – indexed for MEDLINE]
      God bless Dan[/QUOTE]

    • Anonymous
      October 29, 2007 at 1:48 am

      Please share any videos I posted with others–God bless

      [url]http://www.youtube.com/watch?v=xmjX806GvV8[/url]

    • Anonymous
      October 29, 2007 at 2:06 am

      Glad Merk decided to stop push–but some goverment officials on merk payroll are pushing this vaccine–Must listen to this video. Do you have to get your children vaccinated–NOT!!!!!!!!!!!!!!!!!! Spread the word,don’t let our schools control your choices–God Bless

      [url]http://www.youtube.com/watch?v=heDVDSRhOMs[/url]

      [url]http://www.youtube.com/watch?v=heDVDSRhOMs[/url]

    • Anonymous
      October 29, 2007 at 2:33 am

      People who have had GBS are not to get this vaccine–and it DOES CAUSE GBS–This burns my ass that the military is doing the same crap to our soldiers with anthrax that they did to me SWINE FLU SHOT 30 years ago–line up and shut your mouth–we heard of soldiers getting sick, SHUT UP AND GET IN LINE or get court marshalled, So hear I sit in a wheelchair 30 years later and the VA craps on me and others like me. God Bless

      [url]http://www.youtube.com/watch?v=KhZs1pfPkJI&NR=1[/url]

      [url]http://www.youtube.com/watch?v=KhZs1pfPkJI&NR=1[/url]

    • Anonymous
      October 29, 2007 at 2:47 am

      [QUOTE=wheelchairdan]People who have had GBS are not to get this vaccine–and it DOES CAUSE GBS–This burns my ass that the military is doing the same crap to our soldiers with anthrax that they did to me SWINE FLU SHOT 30 years ago–line up and shut your mouth–we heard of soldiers getting sick, SHUT UP AND GET IN LINE or get court marshalled, So hear I sit in a wheelchair 30 years later and the VA craps on me and others like me. God Bless

      [url]http://www.youtube.com/watch?v=KhZs1pfPkJI&NR=1[/url]

      [url]http://www.youtube.com/watch?v=KhZs1pfPkJI&NR=1[/url][/QUOTE]

      [url]http://www.youtube.com/watch?v=9PQqllRISpI[/url]

    • Anonymous
      October 29, 2007 at 3:54 am

      [QUOTE=wheelchairdan][url]http://www.youtube.com/watch?v=9PQqllRISpI[/url][/QUOTE]

      [url]http://www.youtube.com/watch?v=t8W9cvCR-lE[/url]

    • Anonymous
      December 26, 2007 at 3:07 am

      [url]http://www.youtube.com/watch?v=c4lbq2bFC1Y&feature=related[/url]