- News archives 2003-
Note: Old links may be changed/dead
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December 2003: Mountaineer David Lim, veteran of over 50 alpine climbs and Himalayan expeditions, was struck down by GBS two weeks after leading the first Singapore Everest expedition in 1998.
Before GBS, he ran two marathons. Post-GBS, permanent foot damage caused a limp that requires the use of orthotic braces, and learning to run was like "running in ski boots".
The Singapore 10km mini-marathon is disabled climber Davids first since GBS, and is "a small mountain to climb in my mind". Why try? "Everyone should live the lives they want to, including doing daft things like running marathons. We should include a go-for-it attitude as an element in defining our personal success in life."
David scaled his personal mountain, shuffling over the finish line a couple of weeks ago! A week later, he spent several days climbing Malaysian Mt. Kinabalu with participants of a Community Development Youth Adventure program. [Davids case history].Have a wonderful christmas and an amazing New Year! May 2004 bring good health to you and the people you hold dear.
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November 2003: The American Academy of Neurology has recently presented new guidelines for the treatment of Guillain-Barré syndrome. Read about the implications, see 'Healthcare Professionals'.
Bonnies husband is suffering through a variety of post-GBS residuals, and badly needs information and support. Read their account of life during and after GBS under 'Case Histories'.Some months ago, little Lyndsi was recovering from GBS and her case history was shared here. Her mom, Pam has just sent me a very positive update, check 'Case histories'!
The sniffles are going around over most of the world. Are you considering an influenza jab? Make an informed decision about your health - check 'Links' > 'Vaccinations' for information about GBS and vaccinations, speak to your physician about the pros and cons.Thanks to George and Ken for this fortnights headline: Researchers in Texas suggest that American president Roosevelt may have suffered from GBS, not polio. Read more!
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October 2003: Tom Hawkins has very kindly sent me another humourous account of life after GBS. As he writes, despite having recently broken an ankle and thus in the process of making a rather painful and difficult recovery, "There was life before GBS but it has never been as enjoyable as now". Thanks Tom, best wishes for your recovery, and please do write in again soon! Readers, enjoy! See 'Case Histories'.
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September 2003: Third annual Lehigh Valley Peripheral Neuropathy Conference to be held in Fogelsville on sept 06. Speakers (all doctors), will speak on
- peripheral neuropathy (PN)
- personal experience with peripheral neuropathy (PN), including advice for handling relationships and intimacy.
- the integration of traditional and non-traditional therapies, as well as diabetic neuropathy. Read more ....
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August 2003: Jenny Murray started up the GBS support organisation in New Zealand after her sister contracted GBS. Jenny has helped hundreds of people in New Zealand and elsewhere, and has just been honoured for her work with the Queen's Service Medal for Community Services. Congratulations, and keep up the good work!!
Read about how Jenny started up a support group, and read her sister's case history, as described by Jenny's niece. See 'Case Histories'.
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July 2003: Mary survived the onslaught of GBS, Bells Palsy, pregnancy - and a car crash, simultaneously! See 'Case Histories'.
" My kids have called me 'Mr. Schedule Man' on more than one occasion. However, I didn’t prepare to be paralyzed only 48 hours after my feet tingled and my legs felt too heavy to lift..." Read a Psychologist’s Rehabilitation Memoir - see 'Case Histories'.
3 years after being attacked by GBS, Van Brown has successfully recovered. Read his honest and very inspiring account of his traumatic illness. Van offers inspiration and advice on what got him through GBS, see 'Case Histories'.
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June 2003: Robyn is among those who still suffer a great deal from residual symptoms. Read her account of what it was like to suffer from both GBS as well as Bells Palsy - see 'Case Histories'.
Send in your tips and experiences to the 'Post-GBS residual' page!A reader, Suzanne, sent in a couple of links. One is to a poem on GBS. I thought it would make a refreshing change - see 'Readers comments'!
The other link is about David Lim who was determined to climb again, and has successfully pursued his hobby after a bout with GBS. Check out 'Case histories'. Thanks, Suzanne!Zoe was only 10 when her dad suffered through GBS. The family was called in several times when it seemed he might die.... Today, Zoe's dad is fine! See 'Case histories'.
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May 2003: Mattia is a child whose life has been completely altered by GBS. This story is written by his father, Giuseppe. See 'Case histories'.
Do you suffer from post-GBS residual symptoms (tingling, pain, exhaustion, etc)? Is your medication helping, do you have tips on how to deal with these symptoms? Check out "Post-GBS residuals" - a patient-to-patient collection of information. GBS/CIDP & Sexuality is another patient-to-patient collection of information, share tips and experiences here.
Many people have sent in links or have suggested new books written by people who have experienced GBS. These have been added to the list here, check 'Links'. Thanks to all the contributors!
I was inspired by Linda's description of her life and successful career, despite the life-altering experiences of GBS and a relapse. Thank you, Linda, for sharing this inspiring and informative account. See 'Case histories'.
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April 2003: This week I have the pleasure of bringing you Tom Hawkins' amusing story of his experiences as a GBS patient. See 'Case Histories'.
Thank you for the good laugh, Tom. Readers: you'll enjoy this one!!Geri describes how difficult it was to suffer from a rare disease 20 years ago. She now uses braces but still suffers from pain. See 'Case histories'.
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March 2003: This month, I am able to offer a number of new case histories.
Pam Graf writes about her baby Lyndsi's encounter with GBS. Lyndsi recovered quite quickly and is doing well today, less than 6 months later.
Bill recounts what it was like to suffer from a strange illness 30 years ago. As with many other GBS patients then and today, he was suspected of being a kook but fought to recover.
Peter Nørlund did not recover fully from GBS. 10 years later, he relates how he copes with the aftermath of a disease that crushed his future and his dreams. A must-read. See 'Case histories' for all these stories.'Research & trials' is an area of interest to many with GBS. Read about the findings of researchers all over the globe who're studying the syndrome and working towards a cure. Clinical trials are necessary to improve treatment, check which trials are recruiting patients.
The GBS chatroom is now also available to non-Danish visitors. Chat with other patients, exchange experiences and tips.
'Links' has been updated with more books on GBS. Have you read these? Feedback would be appreciated by other patients.
Finally - Alex' story has just been updated. This teenager is recovering beautifully from suspected MFS, read his progress report under 'Case histories'.GBS-UK has scheduled its annual GBS conference for 12/4-2003. Speakers include Prof. R.A. Hughes, renowned for his work in GBS/CIDP. [Details].
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February 2003: Simon suffered from GBS/CIDP as a 12-year old, apparently triggered by a vaccination. Read about the terror he suffered due to the motor symptoms, and how treatment finally led to recovery. See 'Case histories'.
Has GBS/CIDP/MFS/... caused any sexual changes in your life? Let's pool our information and experiences and highlight poorly-described problem areas that reduce the quality of life of GBS/CIDP sufferers. Let's begin with an area of significant impact: "GBS and Sexuality".
Email about the problems you've experienced, solutions you'd like to share, aspects that deserve more awareness, etc. Please note that this is a patient-to-patient resource, and my role is solely limited to publishing emails received. I will respect requests for anonymity, but your name, address and email address HAS to be sent in to ensure the email's veracity, or else your email gets tossed. No porn. [more]Would you like even more information, more reader-to-reader contact, perhaps even a Q&A forum with a health care provider? I'd like to offer these without having to resort to annoying banners and popups, and I need YOUR help. Running this website has real costs involved, and your donations to support this free support service is appreciated. Every dollar, pound, yen counts!
Please note that donations are not tax deductible.The New Zealand support group is holding its first international conference 25-27.04.2003. Key Speaker is Dr. Gareth Parry, known for his work in GBS. Registration deadline: 20.02.2003. Please contact Jenny Murray for information and registration.
Right on the heels of the news about Wieghorst being ill (see January), came an email pointing out that he was made captain of the Danish team! So - if you are a GBS patient desperately seeking a story with a positive outcome, check out the links here and in the archives, to articles relating the course of his illness and his victory over GBS!
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January 2003: Danish fans are in a tizzy over reports that Morten Wieghorst and a couple of teammates are victims of the Thai equivalent of Delhi-belly. Yes, GBS may be triggered by diarrhoea caused by Campylobacter, and yes, recurrences, although rare, do occur. Trainer Morten Olsen says, however, that this stomach infection is not food-related, and blames jetlag and the heat.
I keep receiving links to old articles relating to Wieghorsts GBS, even though he is now successfully recovered. I include them here, hoping they will inspire other patients to fight for recovery. More. Note the incorrect references to "brain bug" - GBS does not affect the brain.These links were sent in by Ken Sawyer, some time ago. Thanks, Ken. Liverpool player Marcus Babbel has been recuperating from GBS for the last 15 months. Babbel's comeback finally occurred in November 2002. Read about his progress in the archive here.
English Grandmother recovering from GBS backs hospital trust's campaign to buy expensive physiotherapy equipment. Read more.Angela May made a very speedy recovery, and would like to encourage the newly-diagnosed not to think in terms of the worst case scenario. Read her heartening story under "Case Histories". Thank you for writing in, Angela!
The annual redesign of this website has just been completed, and I've received positive feedback on the changes made. Let me know if you find stuff that doesn't work right!
Use the search engine found on the right side on each page. It searches within the english area of this website. To search within the danish-language website, use the engine on a danish page.
Two years ago, today, I launched this website. I was driven by the fact that Scandinavia had absolutely no source of GBS information available to patients and their families, in an accessible language. Little did I know what I was letting myself in for!
Many requests led to the english version, and to other languages. Phone calls and emails from all over the world began pouring in, requesting information and support. Simultaneously, I found myself singlehandedly undertaking a number of other initiatives, all with the goal of increasing the information available and providing support. Relocating away from Denmark several months ago made it imperative I find others to take over my work there, and my efforts finally resulted in the formation of GBS Support Group Denmark.
What's in store in 2003? Well, for starters, I'll be expanding the website to include subjects not well described in the litterature, but of great interest to patients, their families, and health providers. So please send me your suggestions and experiences!
To those who feel their experiences are too mundane to share: every single case history contains invaluable details that add to the information available here to patients and health providers. Many aspects of GBS are as yet unknown, and a mere detail may prove invaluable to someone else. So write in!- - - - - - - - - - - - - -
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© Copyright 2001-2007 S. Marcussen. All rights reserved.
Jsmarcussen.com/gbs takes no responsibility for any errors, omissions or misinterpretations. These pages should be used for information only and you are strongly advised to seek professional help particular to your circumstances. For more information, please visit the website http://www.jsmarcussen.com/gbs or e-mail jsmarcussen@mail.tele.dk