GBS awareness: Limitations, but not limits
May is GBS Awareness Month, designated by Guillain-Barre Syndrome Foundation International in an effort to increase awareness of the syndrome.
GBS is a condition highly personal to me. It’s something I’ve lived with for more than 28 years. It changed my life.
I’m a person in the public eye, which has shown me both the beautiful and the ugly in others. What that means is I’ve dealt with a multitude of situations from people in the public. The beautiful experiences outweigh the ugly ones, but both offer a chance to educate others. I recognized some of the same behavior during the coronavirus pandemic.
Some of you may be unfamiliar with Guillain-Barre (pronounced Gee-yhan Bar-ray). I hadn’t heard of it, either, until I became afflicted. Chances are you may have seen a person who has it and not realized it.
What if I told you former Chicago Bears star and Super Bowl champ William “The Refrigerator” Perry has GBS? Or, that multi-Olympic medalist Rowdy Gaines, actor Andy Griffith, actress Rachel Chagall and author Joseph Heller all had Guillain-Barre?
In 2003, doctors concluded that Franklin D. Roosevelt’s paralysis (diagnosed in 1921 and long attributed to poliomyelitis) was due to GBS. In a paralytic state, this man led the U.S. during both The Great Depression and World War II. Despite his limitations, he was elected to an unprecedented four terms. I believe this man is my hero! He led the country from a wheelchair.
GBS is an acute polyneuropathy, a disorder that affects the peripheral nervous system. Typically, weakness begins in the hands and feet, migrates toward the trunk, is followed by abnormal sensations or extreme deep muscle pain, then leads to dysfunction of the autonomic nervous system.
It’s a rare condition. When my neurologist told me the odds in getting GBS were 1 in 100,000, I told him I should have bought a lottery ticket. Nonetheless, it just so happened to be my luck.
GBS is said to be brought on by an infection, mostly a reaction to the flu or an upper-respiratory infection. People also may get the syndrome from influenza vaccination, although most doctors would say the chance is slim. My case was due to an upper respiratory infection. And I’m instructed never to get a flu shot.
Complete recovery is almost as rare as getting the condition, but prognosis can be positive. However, the extent of recovery depends on how deeply damaged the nerve tissue is during onset. Mind you – some people die from GBS due to breathing and lung complications (life support of ventilators may be required in extreme cases).
I sustained permanent damage to my lower extremities, requiring me to wear AFO support braces and the use of crutches for mobility. I also need to use a wheelchair in situations when walking a long distance may occur or during work to keep me from using my endurance too quickly.
I want to convey something, though. When I was sitting there nearly helpless 26 years ago, I could have thrown in the towel. I could have said no to physical therapy or not gone consistently for four years. But I didn’t. I had the loving support of my family and the drive to make the most of what was to be.
I rejoined the workforce in 1998 and later became an insurance agent. I am also proud to author this column, The Farr Side. To this day, I still get asked about my disablement. I don’t mind the inquiry. I may have gotten GBS, but GBS didn’t get me! People who see me at my workplace, a store, a concert or working in my yard, see a man with limitations, living without limits.
There’s something to be said about the human spirit. It, along with faith in God and the hope for a better tomorrow, can bring you through anything. I can attest to that.
Health awareness of any kind is important, so I’m sharing GBS Awareness Month with you.
David T. Farr is a Journal Correspondent. Email him at farrboy@hotmail.com.
This article originally appeared on Sturgis Journal: May is GBS Awareness Month
