Living with Guillain-Barre Syndrome

It was St. Patrick’s Day 1987 and several friends and me were enjoying this very “green” holiday. However, I noticed my toes were tingling something fierce. This was a Sunday, and by Friday, I was weak, couldn’t lift my arm to wash my hair, and dropped things constantly.

After leaving work early, I visited my doctor’s office. Since this was not a planned visit, I saw the Physician’s Assistant. I had reflexes, no fever, and didn’t look ill, at all. He pawned it off to “working out too hard, without proper stretching.” Hmmm, I wasn’t convinced!

Saturday morning I could barely walk, couldn’t swallow, and felt absolutely horrible. Sunday was worse. I managed to get into the bath tub, but couldn’t get out. Monday morning I went back to the Doctor; this time I saw my regular physician. Immediately, he said, “you have Guillain Barre Syndrome.” We need to get you to the hospital.

At the hospital I heard various nurses having inappropriate conversations about me. “Maybe she has m.s., do you think she had her polio vaccine?” At 22 years old I was scared, but not terrified. It’s that age where you think your invincible. At least I thought I was.

About an hour later, a neurologist walked in and asked me to stand. He helped me up, and I leaned on him. He asked me a few questions and then said “we need to get up to ICU.” You are going to get worse before you get better.” He then said “+you have Guillain Barre Syndrome.” My questions were, in this order:
1. Is it fatal
2. Is it contagious
3. Will I recover

His answers were:
1. No
2. No
3. Yes (95% recovery rate)

Although I just met him, I trusted him. By week’s end, my breathing became very labored, and I couldn’t swallow. When I arrived at the hospital I was126 lbs. By the end of the week, I was 119 lbs.

Because my breathing was weak, they transferred me to another hospital where they could preform a treatment called plasmapheresis. Apparently, plasmapheresis doesn’t work on everyone, but they wanted to give it shot. Basically, the treatments consist of sitting in a dyalisis chair, spinning your blood, thus removing the virus. After the first treatment, I was exhausted, which according to the medical team, was normal.

By the end of the five treatments, I could roll over in bed….it took five minutes, but I did it! Next, they began simple physical therapy procedures, such as range of motion.

It is now mid-April and I am back at the original hospital for rehab. I left Sister’s Hospital on April 29 and began out-patient rehab three times a week.

By Memorial day 1987, I was walking, and had most of my strength back. I weighed 110 lbs, and just missed trying out for cheerleading for my favorite NFL Football team–In 1989, I became a Buffalo Bills Cheerleader, a Buffalo Jill.

What did I learn through all this? A lot..Never take anything for granted, because you can lose it quickly. Live each day as it may be your last, strive to succeed, and go for it!

God gives us these life lessons to see how strong we are—This one made me a fighter!