Living with Guillain-Barre Syndrome

Back in 1981 when I was five years old, my legs began hurting and I started walking with a strange gait.

Many doctors and two spinal taps later, I was diagnosed with GBS From the start to diagnosis was weeks. Things were going very badly for me by that point. I could hardly walk, and my muscles had atrophied to the point where my mom and grandma were afraid to let me sleep alone, for fear I would choke.

Back then, there was no such thing as using plasma to treat GBS. In fact, there was no treatment at all. I never spent a night in the hospital, and would go twice a week to have blood tests taken. I lost so much weight that I was a skeleton, and too weak to do anything. Again, they didn’t have the knowledge back then that they do now.

Throughout, I did have a physical therapist that came twice a week. In addition to her, my family bought blow-up type pool toys that I would sit on and rock back and forth. This helped me rebuild muscles and of course I thought it was great!

It took a full two years to recover from GBS, and I have never regained the reflexes in my knees (think little rubber hammer), but otherwise am just great!!

Back when I was diagnosed, I started receiving letters from adults all over the country who were living with GBS. The common theme throughout the letters was that they had given up and would face their lives in wheelchairs. I know that to this day, the reason I made a full recovery is because at the age of five, I wasn’t about to give up! I was too young to know what that meant!

So please, stay strong and know that things will get better! If I came out OK in the “dark ages” of GBS, I know many of you will fare wonderfully with today’s technology!