Guillain Barre in 1996
By Ann Brandt
Things in the world of GBS have changed since my adventure in 1996-97. I had been grading papers all afternoon, rubbing my neck and right shoulder every few minutes. Thinking I needed some exercise and time away from my desk, I set out on a brisk two mile walk. The pain only intensified. That night I woke up with searing pain in my shoulder and back. No amount of Advil helped.
The next night, my husband took me to the local Emergency room where I received a blessed shot of morphine. And so the routine began, going from doctor to doctor and to the ER in a desparate search for answers. And for relief. Neither were forthcoming. At the end of three weeks I had amassed a supply of strong pain killers from three different doctors, none of whom had answers regarding this pain. My legs were becoming unstable as well and I slogged through the days in a semi-conscious state. I dreaded the night when all was still and I was left alone with the searing pain.
After the first couple of weeks my husband had taken to sleeping downstairs while I waited for the dawn upstairs—two flights dividing us. One night everything came to a head. In my sleep deprived state, I must have taken a large dose of everything in my home pharmacy. All was still until I heard a thumping sound, followed by a loud bump. Then I felt myself being lifted up, and put in the car. At the ET—again—white-coated figures, a needle jab, and someone asking me silly questions: What year is it? Who is the president? The white coated figure seemed to be more out of things than I was; my answers were less than polite. That earned me a black mark in patienthood. I still have the hospital report that recorded me as “Narcotic Overdose” and aggressive. I was 64 years old at the time.
Eventually, just before Christmas we found a neurologist familiar with GBS. He consulted and left. After some persistence, I was admitted to our University Hospital through its Emergency Room just before midnight on Christmas Eve. I would have no attending physician. Treatments during my twelve days in hospital were maintenance only—just enough medication to keep the pain from rocketing out of control.
Upon my release early in the year 1997 I received a brochure in the mail. Guillain Barre Foundation International, it read. All of the family had been researching, praying and keeping track of my travails.
My experience with GBS did not include dependence on a ventilator, thank God. After reading the experiences of Sue Baier and others I know how fortunate I was. Recovery went well and I went back to teaching in August, eight months after that first pain presented. No one should ever have to go through something like this –no diagnosis, no treatments, no one to talk to. In 2001, I and some others held the first support group meeting in the Denver area. Sixty people attended—patients and their friends and families.
For nine years, I visited patients, listened to their stories, organized meetings, procured speakers, wrote news releases in an attempt to bring awareness to the public. The greatest pleasure was seeing the look on a patient’s face when I walked into his or her room and stated, “I had what you have.”
I am 81 years old now and still write a bit about this odd disease. People want to know how GBS affects us in later years. I answer that everything that happens to us brings scars of some kind. We should wear these scars proudly because we are survivors.