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Hi. I’m John.
My wife is Mary.
My Motivation When I got TM, the first days were awful. I was afraid, confused, ignorant. Paralysis was pretty freaky, miserable. My neurologist, Karin, told me “It’s not going to be this way.” That was all she could say, because the progression of TM can be so different for each of us. I don’t want that fear to happen to others. That’s why I’m here. If I can help someone through those first days, I’ll feel great. The primary purpose of this support group is to give you someone to talk to, whether you have TM or you are a caregiver or someone you care about just gave you the bad news. I started “supporting” some time ago, just emailing and calling those on the list. I had never spoken with another with TM. I connected with Robin first. She had never connected either. Then Abid. Same deal with him. Wow. None of us had ever talked with a fellow traveler. Robert has had TM for 18 years, and when I called it was his first conversation with a person with a TM diagnosis. 18 years! The conversations are always good, and welcome. My Story It started above the Snake River Canyon. I was flying my paraglider in wind that was too strong for me to handle. Crash landing. Crushed back. Spinal cord damage. Pain. Morphine pump. I accommodated rapidly, and climbed from 0.7 to 25 mg/day. That level of morphine may have been the trigger.
I was nude in the bathroom, ready to turn on the shower. I started sinking toward the floor, very gently. I just laid down on my back. I was entirely paralyzed and numb below my chest immediately. The pain from the spinal cord injury was completely gone, but so was everything else. Mary was home. I just called to her. What if it were Monday? Anyway, we called 911 and off I went again. I was scared stiff. Well, not exactly stiff. I was mostly limp. You know what I mean. The ER doc didn't have a clue. He called my pain doc who said over the phone "Oh there's nothing wrong with him. Send him home" WHAT! ARE YOU NUTS? He didn't want it to be his fault. He had cranked up the morphine, after all. OK, checked in, nobody has a clue, and then they called Karin, a neurologist. She knew immediately that it was TM. We removed the morphine
pump, thinking it was a cause. Wrong. We tapered the IV morphine too fast, so
on top of the rest I had withdrawal for 3 days. Awful! I had the steroids for
3 days, but it was much too late. We need to teach the doctors! After the MRI, she told me that it's "probable MS". No, no, no! I started on Copaxone right away to prevent a recurrence. I went to the Mayo Clinic: same diagnosis. Well I've decided I don't want MS, so I refuse to have it. I'm sticking with TM! I went home after a month, barely able to walk. That terrible pain was still gone. I figured out to cath every 3 hours, then a Foley at night. I was like a puppy being house-trained. I hated those accidents, bladder and bowel. I felt so broken, humiliated. Little tickles started in my feet. No problem. Then more and more tickles which finally grew into severe pain. I held completely still, didn't even talk, to avoid it. This pain was not as bad as that before TM, and at least I could lie on my back. After several tries, I found a pain doc who was willing to keep trying things. We tried LOTS of treatments, lots of drugs. When we found one that stopped one flavor of pain, I kept it and continued trying others. It's been 6 years. Now I can move around the house in my wheelchair, we are still trying, and it's working. That's the trick with pain: never give up. Then I discovered TMA. I have a home. I have a "job". I have a new circle of friends. Life is looking up. I'm going to make it.
My Details
Please contact me. |
Our dog is
Sundance, and the cat is
A year and a half after the
crash, on a weekend morning, I was getting ready for a shower. I had noticed
strange symptoms for a week: abdominal cramping, eyes wouldn't track together,
walking gait was goofy. Then that morning I was having NASTY spasms in my
abdomen.
