Living with Guillain-Barre Syndrome

It all started Feb. 23 2005. I was only 24 years old. I just graduated from college with my master’s degree in speech-language pathology. I was on top of the world. One day I woke up and my feet felt tingly. I ignored it and went to work. By next morning it moved up my shins/calves. I thought for sure I had had some kind of stroke

I went to the hospital. By the fourth day I was in ICU. I was on a ventilator and heavily sedated. It was the worst time in my life. I couldn’t move or control anything. I couldn’t even roll over in bed. The doctor wanted to do a tracheostomy if I didn’t show any signs of breathing on my own. Although I was sedated, I could hear what was going on. By God’s blessing, I was able to get the tube removed and used oxygen and PAP machines for a while.

My recovery was the toughest. I was so scared and more so, loosing my independence killed me. There were several times I spoke with God and asked “why me?”. Yet, I pressed forward. As a speech patholgoist, I knew how critical it was to do as I was told by therapists and doctors. My gains were small, however I embraced each one. I went from complete paralysis from my nose down to an almost complete recovery. I used a wheelchair, then a walker, then a cane, and now NOTHING!!!

I can eat a regular diet now with no difficulties. And best of all I can roll around in my bed all I want. My limbs to get that “tingly” feeling frequently. It terrifies me every time. I’ve read that this is a residual symtom of GBS and may last years. So, I take one day at a time. To those of you who have experienced this disease first hand, or know someone who has it; please remember that the fight is not over. That your mind is still intact and you WILL get better. I know it’s a long frustrating road, but hang in there and be gracious enough to look at the glass half full…..God Bless