In 2007, I experienced an attack of Guillain-Barre’ Syndrome (also known as GBS). I carefully picked the word “experienced” as I am a “poster boy” for the full recovery from this debilitating disease. After a long hospitalization including 14 days on a ventilator, I emerged totally paralyzed from the neck down; I could barely move my head.
GBS is an autoimmune disease. The body’s immune system----which usually attacks foreign material and invading organisms----begins attacking the nerves that carry signals between the body and the brain. Specifically, the nerve’s protective covering (myelin sheath) is damaged and this interferes with the signaling process, causing weakness, numbness or paralysis. An analogy is an electric cord with its insulation being the myelin sheath. The immune system somehow eats holes in the sheath causing the electrical cord to short out.
The frustrating part was that my brain did not realize that there was a problem; it sent instructions to my hands, arms and legs to move and assumed the instructions were followed. I was surprised when nothing happened. The good part is that other than trying to move, I was thinking clearly. Also, there was absolutely no pain because of the nerve damage.
I was sent to the Level 1 Rehabilitation Center at Good Samaritan Hospital in Baltimore Sandeep Singh and his terrific team of doctors, nurses and therapists, I slowly regained control of my limbs and I walked out on my own after eight weeks. I spent another four months in intensive outpatient therapy.
During this experience, I encountered many people who had another disease that would ultimately prove fatal, a chronic condition or injury from which they could not hope to recover, or a condition much more painful than mine. I could always look around and see someone who was worse off than me. I was blessed as I fully recovered from GBS and now can look back on it as an experience and not an ongoing battle. God certainly had ideas about my future.
After my recovery, I was in much better physical shape than before the GBS. I went back to work and was hired to help manage a large show booth for a technology company at a large trade show in Orlando
In October 2008, I started experiencing pain and numbness in my legs. By January, the problems had spread to my arms and the doctors decided that I had CIDP, the chronic version of GBS that only effects the arms and legs and not the respiratory system. I was one of 1% of GBS patients who get it a second time. High daily doses of Prednisone, a steroid, were prescribed. I was also taking large quantities of Vicodin for my pain.
In mid-May, two new problems occurred almost simultaneously. I started having severe hip pains and I started slurring my speech. By July, I could hardly walk, and an MRI showed that the Prednisone had killed the blood flow to my left hip causing avascular necrosis. My doctors blamed my slurring on the Vicodin; they said that after I stopped taking the Vicodin my speech should return back to normal. The doctors weaned me off the Prednisone over a three month period and on November 2nd, I had my hip replaced. I had an absolutely painless recovery and never took another Vicodin. After four months of outpatient physical therapy, I was, and still am, walking as strong as I was after my recovery from my initial bout of GBS.
Periodically, my physical therapist gives me tests of my strength and stamina; my last test in October 2010, showed that I was stronger and had more stamina than I was after my recovery from my initial GBS experience. I mow the lawn with a walking power mover. I have been renovating the house in Waxhaw: climbing ladders, painting ceilings and walls, tearing out and installing new closet shelving, etc. These are things that my doctors say I should not even be trying to do.
Again, God has seen me through another health problem. He has plans for me but so far I haven’t figured out what they are.
However, my speech did not return to normal and slowly deteriorated. I also developed swallowing problems. My doctors at Johns Hopkins tentatively diagnosed my speech and swallowing problems as a form of motor neuron disease and treated me as if I had ALS. However, they said that I am not a typical ALS patient because my legs and arms should be deteriorating rather than getting stronger.
In January 2011, an EMG test confirmed that I have ALS; and I have been accepted for treatment by the ALS Clinic at Charlotte ’s Carolina Medical Center
I don’t think it was a coincidence that my hip started hurting and my slurring started at the same time. I think that the Prednisone did a job on my mouth and throat also.
The good Lord has tested me with GBS and CIDP. I see ALS as just another of life’s challenges. GBS was a terrific "boot camp" for ALS. I can still look around me and see people who are a lot worse off than I am.
Well that's my story.
