All about Guillain-Barré syndrome: Acute GBS with paralysis within hours

I thought I was an unlikely target for any incapacitating illness. At 62 I was in excellent health, hiked and attended aerobic classes at an altitude of 7,000 feet, neither smoked nor drank, ate nutritiously, kept my weight under control and could still count the number of grey hairs I had. All my life I was the student and worker who rarely missed a day. My husband and I had enjoyed almost two years of retirement when the nightmare began.

For about two weeks I was fighting what I thought was a common cold (no intestinal symptoms) and had been able to serve on a jury for one week when GBS hit. In the early morning hours of February 12, 2001, I found I was unable to bring a tissue to my runny nose.

Losing control
I woke my husband and told him: "I am losing motor control." By the time he dressed and my son who lives nearby arrived, I needed help walking. On the way to the hospital I kept saying: "I'm losing my voice." In addition to all my other muscles, I guess the diaphragm was shutting down. Upon arrival at the hospital (10 minutes away), I couldn't walk at all.

Fortunately for me, the Emergency Room technician said: "I think I saw this condition a few years ago in a hospital in the south. It looks like Guillain-Barre syndrome. You'll get worse and then very soon be okay." Well, he was wrong about the "very soon" part.

Treatment began immediately
My super family doctor and his wonderful neurologist colleague arrived within the hour and I was on the ventilator the same day (and for more than 5 months). I had almost two courses of the IVIg treatment.

I was in Intensive Care for 103 days and then transferred to the Sub-Acute Unit of another hospital. I began speaking with a Passy Meer valve after five months of silence. The feeding tube remained until September 11 when I went to the Acute Rehabilitation Unit.

I was discharged on November 30, using a walker and leg braces and gave up both devices in a couple of months. I immediately began out-patient therapy and still go three times a week.

Post-GBS residual symptoms
I have very little use of my hands, even after surgery on both to free up joints at the palm. I can walk and do a funny little run but have a long way to go to be satisfied with my recovery.

I have had wonderful treatment and support from caring doctors, nurses, respiratory technicians and therapists. Most important to my recovery, however, have been my devoted husband, sons, daughter-in-law and sister who were variously at the bedside. They spelled with me, suctioned my trach, painted my fingernails, assisted with keeping me clean and in good spirits, and much, much more.

If you think others might benefit from hearing from me, please don't hesitate to relay my e-mail address. Many people have helped me understand this syndrome, especially others who have been there. I still find life beautiful.

© Copyright 2001-2007 S. Marcussen. All rights reserved.
Jsmarcussen.com/gbs takes no responsibility for any errors, omissions or misinterpretations. These pages should be used for information only and you are strongly advised to seek professional help particular to your circumstances. For more information, please visit the website http://www.jsmarcussen.com/gbs or e-mail jsmarcussen@mail.tele.dk