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Fight rare neuro-immune disorders. Together.
October 12, 1997. It was a week of celebration: my 50th birthday and our daughter’s 16th, all culminating with a trip to NYC to see the play, Les Miserables.
I woke up that morning with a strange feeling in my hand, I had difficulty closing it; and by mid-day, a tingling down my leg. Although there wasn’t anything new about aches and pains, pulled muscles and pinched nerves, this somehow felt different — with an additional feeling of ‘banding’ across my upper chest creeping into the symptoms.
We went to the play; and during intermission, my ‘feelings’ were increasing, now becoming troubling. By the end of the play, I could barely get up and had enormous difficulty getting to the car.
My wife drove me to the ER where they did a brain scan. They saw a ‘shadow’ but weren’t sure of the results, so I had to wait for an MRI in the morning. When I was scanned in the morning, they saw a spinal lesion C3 through C7. My doctor, having had a relative with Transverse Myelitis, immediately diagnosed it and put me on heavy steroids. At this point, I was completely paralyzed mid-chest down. While the steroids eventually allowed me to regain some sensation, it was obvious that more needed to be done, because I appeared to be relapsing. I was then given immunoglobulin and, in time, was sent to rehab to try to regain use of my legs. After several weeks, I began to gain some muscle use, but remained with neurogenic bowel and bladder, necessitating catheterizing several times a day, along with assisted voiding.
I was one of the lucky ones. I was correctly diagnosed relatively early in the game. While I never regained full muscle strength and was left with a neurogenic bowel and bladder, I am able to walk, and was able to eventually go back to work for a few more years until my retirement, and am still able to enjoy my family, and now my grandchildren.
Having never heard of Transverse Myelitis before my diagnosis, finding the TMA online was a God-send. Communicating with other people with TM, finding fabulous doctors at Johns Hopkins, having up-to-date information at my fingertips, and just feeling like I’m not alone and supported, gave me the strength to move forward during the difficult times.
Now, 19 years later, TM makes aging muscles more difficult to maintain, but I’m still moving. While I have to alter what I would like to do, I realize now, more than ever, that I have to ‘listen’ to my body. I still catheterize and void with assistance. I am blessed by a well-informed medical community, supportive friends and family, and the TMA family that is always there if I need them to provide critical information and support.
Yes, life is different than I had ever imagined it would be, but it’s good – and blessed.
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