Living with Guillain-Barre Syndrome

When I was in 10th grade, my dad started having pain in his feet and legs. They also were tingling. He didn’t think anything of it, and one morning went to work. The pain and weakness progressed through out the day. My dad was a ‘go get ‘em’ guy and he wasn’t about to let it ruin his workday. Well within 1 hour it became so bad that he decided to drive himself to the ER (not recommended, to drive yourself) but by the time he got there and began to park, he started to walk to the door but by the time he got to the curb, he could not lift his legs. They admitted him right away and 2 days later diagnosed him with Guillian Barre. It was very scary for our family. He had plasma treatments daily and spent 4 months in the hospital. During that time he had the terrible task of learning to walk all over again, but he was able to learn again. He used a cane forever after that and had trouble walking around too much. He would fall down a lot too. Over the next 8 years, he lived a fairly normal life, having to surrender to his pain more then often. His pain and numbness continued, sometimes mildly, sometimes more. 2 years ago it started to get very painful again. He shared with me that he felt like he knew it was going to come back full force soon. (As you know, it is not curable, only treatable and can return.) Shortly after he told me that, he died in his sleep. Unrelated to Guillian-Barre. I believe that if he was still here today, he would have been through at least one more round of treatment. He was in a lot of pain everyday from having GBS I’m sorry this story doesn’t have a happier ending, like Kenna, but I wanted to share anyway.

One thing I can say is that the thing that got my dad through it, is literally, one hell of a positive attitude. Even when he couldn’t walk and had to learn all over again, he was laughing and smiling. Good luck to everyone.
Jennie