- News archives 2006-
Note: Old links may be changed/dead
Archive 2005
Archive 2004
Archive 2003
Archive 2002
Archive 2001
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April 2006: Power suits are a whole new cup of tea in the new millenium: Hot on the heels of the previous month's articles on brain-controlled devices, a reader sent me this newspaper article (11th May 2005, South China Morning Post). Power suits have just got a whole lot smarter and are now designed to help the disabled. Check it out for yourself (PDF file: Power suit)!
And continuing our theme on devices that will change life as we know it: The robotic sports suit that will help the physically-challenged to scale mountains! Check out the pictures published in Today, April 4, 2006 (PDF file: Power suit2).
Most GBS sufferers know the benefits of exercise during rehab and after discharge from hospital. However, many find working out in a traditional gym intimidating! The FeelGood Factory in Honley, UK, is a gym with a difference, offering assisted exercise machines. A user has suffered from GBS - read more [article]. We're hoping that this initiative paves the way for more gyms of this kind!
Retired nurse Kay started a second career as Klynky the Clown after her husband survived GBS, and later died. Humor is healing, and clowning around and teaching clowing classes has become her way of offering humor and compassion to the sick. [article]
Occasionally, a surge in the number of GBS cases occurs in a geographic area, alerting authorities. In June 2004, Royal Children's Hospital in Australia saw an unusually high number of cases of GBS. The reasons for this was unclear and no virus was implicated [more].
Debbie Romero wants to increase awareness of GBS/CIDP in society. This being the goal of this website, we decided to join forces. Over the next weeks, you will find real-life CIDP case histories detailing symptoms and issues that plague sufferers and the treatments they undergo with varying degrees of success. These stories provide insights into life following a diagnosis of chronic GBS, and we hope they will help and inspire other patients and health professionals all over the world. The first case history sent in by Debbie comes from Tony Flores - see 'Case histories'.
Meanwhile in the Philippines, recovering GBS-sufferer Harris Fama found himself wrongly branded as 'contagious' by a news broadcaster. GBS is not contagious at any point, and such comments will only isolate sufferers and their families at a time when they badly need support and help from the community. [article]
The GBS Support Group of New Zealand are holding their 2007 conference on 27-29 April in Wellington. More details from Jenny Murray. Check the archives or use the search box top right for details of the previous conference, which proved very entertaining and extremely enlightening for all those who attended!
Families with teens suffering from GBS will enjoy this article: 18-year old Rachel got GBS after the flu but fought her way back to normalcy despite weakness, headaches and nausea. She gradually increased her school load while working her way back to pitching. Read about the power of motivation in the recovery of a teenager [more].
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March 2006: Had Joe Shelleman not suffered from Guillain-Barré syndrome in 1981 in Korea, he and Sandy Trombetta would not have started up what has now become the world's largest winter-sports gathering of disabled veterans: the annual National Disabled Veterans Winter Sports Clinic. Now in its 20th year, the next clinic is due to be held in Grand Junction, US, early next month.
Trombetta's belief in recreational therapy being a big part of rehab led him to find unorthodox methods of getting Shelleman back on his feet. These included holding Shelleman up "by the back of his britches" so he could play golf, and helping him wobble down ski slopes using 2 skis and 2 crutches with skis on them. Disabled vets attending the event this year include amputees, spinal cord injuries, vision impairments etc. They will participate in downhill and cross-country skiing, sled hockey, snowshoeing, snowmobiling, rock climbing, fencing, trap shooting ...... isn't it time you checked with your physiotherapist about having more fun?! [more]Bobbie's 12-year old daughter was suspected of having MFS (miller-Fisher syndrome). The diagnosis was never confirmed. Read about the roller-coaster of emotions parents go through when their child contracts this mysterious syndrome... see 'Case histories'.
At long last! Singaporean researchers develop the brain-controlled wheelchair and other brain-controlled devices. George, a reader, loves the idea of brain-controlled devices that will empower even paralysed patients. He sent in this link to an article about a computer controlled by thought alone that has just been demonstrated in Germany. This is how it works. Thanks, George! Anybody have comments or ideas - email me!
Heads up physically challenged dance lovers: Canadian Compagnie Marie Chouinard's Body Remix/Goldberg Variations is a stunning work that incorporates the use of harnesses, prosthetics, bars etc. Check their calender to find out when they are in your area!
Read about how a high school basketball team learned about the uncertainty of life and that they can make a difference that far outweighs any trophy. The sudden paralysis of a teammate became their inspiration to do their best on as well as off the court [more].
In the UK, research suggests that undamaged nerve fibers may cause long-term pain. Up until now, the focus has been on the damaged nerves, but research indicates the opposite: That the damaged nerve fibres cause inflammation that triggers nearby undamaged nerve fibres that send pain signals to the brain [more].
While on the subject of pain, a group of researchers in the US has located a "Master genetic switch" for chronic pain. Mice in which this switch was eliminated exhibited a lack of response to most kinds of pain including neuropathic pain [more]. It is believed that both findings will have implications on pain therapies. For more information on neuropathic pain, check out "Focus on Pain".
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February 2006: The case-history database is growing, thanks to contributors, and is a huge source of inspiration to patients and healthcare personnel all over the world. An anonymous sufferer (name known, ed.) has sent in a case history that illustrates yet again how rapid treatment can help patients recover speedily. See 'Case histories'.
The EC has approved 10% IVIG (Kiovig, made by Baxter Healthcare SA) for use in the EU, Norway, and Iceland. [more]
Need a quirky take on GBS? Try this novel on the litterature list.
Regular updates include new information and links added to each page. Do check for new information that can benefit you!I first saw Ron Clingin's story in the NZ support group's newsletter. Ron was on a skiing trip in America with his daughter when he developed Guillain-Barré ... I loved Ron's way of describing small everyday occurrences in a way that heightens the reader's understanding of the many challenges GBS sufferers have to deal with 24/7. A must-read! [Ron's story]
According to the Methodist Rehabilitation Center in Flowood, USA, 5-10 people in the Jackson metro area come down with Guillain-Barré syndrome every year. Having 6 GBS patients at the same time is quite startling. There is uncertainty about the cause of the cluster and whether it is a random, local phenomenon [more].
A GBS sufferer is suing a restaurant alleging that he was served undercooked chicken, and that Campylobacter jejuni bacteria in the chicken caused illness that triggered the GBS that caused temporary paralysis and has now left him unable to do many daily activities [more]. Read about how the bacteria triggers off GBS, and make sure your chicken is served very thoroughly cooked!
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January 2006: Happy new year, dear reader, and may 2006 bring you good health! As well: A very happy and prosperous new year to the readers celebrating the Lunar New Year!
Let's begin 2006 on an inspirational note. Ever heard of Serge Payer? This Canadian hockey player was downed with Guillain-Barré syndrome followed by mononucleosis. It seemed like hockey wouldn't be in Payer's future. Payer took the sports world by storm as he made a spectaular comeback.. [more].
The list over books written by former sufferers of Guillain-Barré syndrome keeps growing. Many offer great inspiration and amazing insights into how to overcome the various issues that crop up when dealing with this syndrome.
These books also help patients and their families explain the syndrome to their friends and communities, creating awareness and allowing people to help constructively. Check them out [books]!Elsewhere, Marge urges people to protect themselves again West Nile virus, after this triggered an attack of Guillain-Barré syndrome. "Cover yourself, spray yourself with a product containing Deet - even if you're just going out to empty the trash,"she says [more].
Meanwhile, in California: "If God has me here, it must be for a reason”, says Maria, as she struggles to recover from Guillain-Barré syndrome. In her case, the syndrome caused acute pain and paralysis [more].
We are increasingly reminded to take responsibility for our future by managing our pension plans and taking out appropriate insurance. As Guillain-Barré sufferers, our needs are somewhat specialised and come at inopportune moments few have prepared for. So it was with dismay I read that the National Organisation of Rare Disorders (NORD) warns that rare disorder patients have begun to experience the first negative effects of increasing restrictions on specialty pharmaceuticals by private insurance. According to NORD, if these changes are left unchecked, they could adversely impact patient health status and lead to even costlier problems [more]
Over time, readers have sent me links relating to pain, which is a symptom Guillain-Barré patients with sensory symptoms tend to suffer from. These links have now been collected on a dedicated page 'Focus on Pain'. Links include diagnosis and treatment of neuropathic pain, alternative therapies, psychological issues and research. If you know a superb link that has not been included, do please email me! Tips on dealing with pain during and post-GBS will also be of much inspiration - keep them coming!
Just when you thought Hurricane Katrina could not possibly be blamed for anything else, I found that much research has been destroyed. Check the 'Research & Trials' page for more!
New books out on patient encounters with Guillain-Barré syndrome - visit the Litterature List for more news on these!
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