GBS 42 Years Out

I was in the 8th grade (age 13) when I was diagnosed with GBS in 1962. The diagnosis was made after weeks of tests in the hospital. My arms and legs were seriously involved but not my swallowing or breathing. We were told at the time that they only diagnosed a half dozen or so cases in the Northeast each year.

At 59, I swear short leg braces, have some weakness in my hands and lots of tingling in my feet which tend to be painful. It was actually a relief to me to find out that many people have residual effects from GBS. In the sixties, I was told that residual effects were not the norm and that made me feel inadequate sometimes.

My parents were great – they never acted as if there was any doubt I could do what I wanted to do (short of running a marathon). I’ve have a master’s degree and a managerial position in academia. My husband of 32 years is a “gentle man” who had no hangups about marrying someone with a disability. We have two children, both in their twenties now.

Plenty of challenges along the way of course – some of them due to the effects of taking large doses of prednisone which was a standard treatment for GBS in the 60s. Mistakes – I definitely spent too much time focusing on my education and career while often ignoring my fitness level. That’s come back to haunt me though I’ve improved my activity level in recent years. Right now my major challenge is the fact that my husband is 80+ and increasingly fragile (parkinsonism).

I guess my advice would be to treat GBS as a fact of life but not the controlling one and keep up the PT.