I’ve recently been posting inspirational stories of Guillain-Barre Syndrome survivors from around the world. With a southern African twist to this site, I’d love to share YOUR stories of recovery. If you feel you have the power and strength to write to me about your experiences to post on this site, please do so to evanrothman@gmail.com. The story may be as long or as short as you wish it to be. I’ll post a brief story of my experience with GBS in the next week to hopefully motivate you to put your thoughts to paper.
Keep strong, friends!
G.B.S Survivors' Network Southern Africa 
I thought I would respond to your request for personal stories. Mine began in 1963, when I was 24 years old. In my doctor’s wisdom, he determined there was nothing wrong with me. He told us it is “all in your head.” Thankfully, he went to his lake cottage on the weekend so when my husband called again to say I couldn’t do anything, the doctor who was taking his calls came out that evening and said it was “polyneuritis.”
That began a four month stint in two hospitals, an acute care one for a month, and rehabilitation hospital for three more months. I was to discover that there were actually fourteen patients, ranging in age from five years to seventy-one years of age.
Having this many at once bordered on an epidemic, and gave us some insight, and them a chance to do some research studies looking at severity, length of illness, as well as factors affecting how long it might take to recover. In those days, I actually believed that everyone would recover. Now, 48 years later, I have learned that most people have residuals, directly related to GBS.
For about 25 years, I thought I had recovered. I learned how to windsurf, entered a “for fun” running race, which I won, and wondered many times why I got so tired. I wrote to the International Foundation to see if there was a “post” syndrome with GBS, because I had had polio in 1946, and it appeared as if this disorder might have a similar set of symptoms attached to it, after time passed. That was 1991 and they said there was “no such thing. I decided to see if I could start a support group here, in the hopes that someone might come who had GBS as long ago as I did. That didn’t happen!
Our support group is now almost 20 years old, and it’s still going strong. In 1997, the Foundation asked for volunteers to assist them in their work with patients and families. I volunteered at that time, and got the shock of my life when I was invited to a meeting in Philadelphia. After 13 years of Volunteering, I have retired. It was necessitated by the changes I have experienced as the years have passed. I have very little energy, especially as the day wears on. Travelling to meetings has become very onerous so it was time to find a new representative from Canada, which I did last fall. In the meantime, the Canadian group got organized, formed a Board of Directors, registered as a charity and set up its own bylaws.
To conclude, I have gained in so many ways from my experience with GBS. In the midst of it all, I would have been angry at anyone who suggested some good might come from such a bad situation. Now I know – I “roll with the punches,” and adapt easily, though not always quickly or willingly, to changes in my life. I have friends all over the world; I have been able to “help” others through calls and visits, and in my working life, which ended when I retired 12 years ago, I spent 13 years, as a social worker, working with people with a variety of disablities. Understanding what challenges can occur makes it so much easier to empathize with others, or to find a solution for a problem. I wouldn’t trade any of it for anything! I use a manual chair when I’m out, if I go to a mall or a park, but I also can make use of a walker if I venture into only one or two stores. I have done mall walking, a neuro-fitness class and swimming for people with disabilities. What a joy! Because I thought everyone got better, I never gave much thought to what I might not be able to do. If I could go back to the first 25 years after I had GBS, I might discover I wasn’t as “better” as I thought I was. Oh, well!
Thank you for the opportunity to express what I feel, and to let others know that there is always the possibility of good things coming from a not-so-good time in one’s life.
Maureen Kachmar
This is amazing Evan, thanks so much for doing this. Bee x