Monday, June 2, 2008

Guillain Barre Syndrome (GBS) Story in Ottawa

 &Travellers Golf Day

 

Guillain Barre Syndrome is an affliction that suddenly and without warning attacks the body's peripheral nerves and usually results in partial or total paralysis, sometimes within 24 hours. In many cases and after some time, the nerves slowly begin to heal, but the healing process can take a few months to several years depending on the severity. Some patients never recover from their paralysis, some only partially, while others recover [almost] fully. Rarely is a patient left without at least some residual effects. 100% recovery is extremely rare. There are no known/confirmed causes but it is widely held that GBS is linked to vaccines, flu shots, or bacterial attacks.     

 

My late mother had been stricken with GBS in her later years and spent 14 months in hospital before being able to return home, but permanently in a wheelchair in her final years. Unlike in the USA, there was no funding in Canada at that time to assist patients.

 

FIRST GBS CHAPTER FORMED IN OTTAWA IN 1997

In Ottawa, there were no GBS support/information groups and there was nowhere for patients or their families to turn for information or help in understanding this virtually unknown illness. Typically, doctors and neurologists would have little time to fully explain the illness and its consequences to families, or, because of its rarity, to give a confident prognosis.  

 

In 1997, the first GBS chapter was established in Ottawa where patients could share information and assist each other with this devastating condition. An astronomical 51 current and past patients, young and old, showed up at the 1^st GBS meeting held in Ottawa in 1997. Several annual and bi-annual meetings followed. Some patients went back over 30 years. One patient was a 3-year-old girl with a severe case and whose desperate parents attended all the meetings to try to learn from other patients what they could do to help their daughter. For whatever reason, statistically, the Ottawa area had an inordinate number of GBS patients over the years.

 

NATIONAL HOCKEY LEAGUE CONNECTION

About the same time as we were forming the first Ottawa area GBS Chapter, Rockland native and 1^st-round NHL draft pick of the Florida Panthers, Serge Payer (later played with Ottawa Senators), came down with Guillain Barre Syndrome, I believe just prior to what was to be his 1^st NHL season. Luckily, his was one of the milder cases, but he had became partially paralyzed and lost almost 50 pounds. I was in contact with Serge during his recovery period and he attended one of our Ottawa Chapter meetings. He went on to become a major contributor to the later-to-be-established national-based GBS Foundation of Canada. Serge also runs a much larger annual GBS charity golf tournament in the Ottawa area, with proceeds also going to GBS Canada.

 

WHAT OUR ANNUAL $600+ GOLF DAY CONTRIBUTIONS MEAN

Even though the main purpose of our golf day is to get our hockey playing friends together in the summer for a fun day and a few pops, it is important for everyone to know that your Travellers golf day contributions, even though they may appear to be small contributions individually, are very significant when added to proceeds from a number of similar so-called smaller GBS tournaments and events that take place annually across Canada. Together, all of these smaller contributions add up to a lot and assist greatly in keeping the Guillian Barre Syndrome Foundation of Canada going. The result is that new GBS patients in Canada and their families have somewhere to turn for help.