In Their Own Words cont.

Twenty-four Years Ago Today
Larry Throne
Oklahoma

I had been working for a construction company for just a couple of months. I was eighteen and it was my first really good job. We were building a power plant in southeastern Oklahoma. They were behind schedule and had us working seven days a week, twelve hours a day. I was young, healthy and making good money. I thought I had nothing to worry about.

It had been a wet rainy summer and everyone on the crew had been fighting a summer flu. I was just beginning to feel the aches and pains on Friday morning when I went to work (Hmmm). On Saturday I just felt terrible. My head was pounding, I had no energy and I was perspiring profusely. I went on to work but shortly after lunch I had a fainting spell. My boss sent me home. I went to bed at 2:00 PM and slept straight through to Sunday afternoon when my father came in to check on me. It was after 5:00 PM. When I awoke, I couldn't urinate, my bladder was distended and I had a fever. Dad took me to the ER and I was catheterized. The ER doctor sent me home and told me to return the next day for testing. The next morning our family doctor was calling, he had talked with the ER doc and was concerned. He wanted me there at the hospital ASAP. Over the next 24 hours, everyone at the hospital in Ada, Oklahoma had poked, prodded and examined me. I think the janitor even had his turn. They did a spinal tap (those sure are nice, aren't they)! When I woke up the second day, I was paralyzed from the waist down.

I was transferred to St. Anthony Hospital in Oklahoma City. In the next four weeks, I went from being a strapping 190lb construction worker to a 130lb paraplegic. The first week or two, I was really sick. My fever got so high they packed me in ice to attempt to break it. I remember coming in and out of a coma and the pain was unbearable. It felt as though a spike was being shoved up my spine. Luckily, I don't remember everything from that period. Everything was getting dark and I remember telling my brother something was sitting on my chest. I just couldn't breath. I vaguely remember having the respirator placed on me. I remember the fear I had of not knowing what was happening, and not being able to see or speak.

Late that night, an overwhelming feeling of comfort and reassurance came over me. It was God telling me to trust in him and everything would be okay. I was totally blind and on a respirator for the next 10 - 12 days. Then one day there was a flicker of light! For the next four days, as if a large hand were drawing back a curtain, I was getting my sight back. I remember focussing on my mother. She was so happy and worried at the same time. The paralysis started moving back down my chest. They took me off the respirator and eventually the paralysis stopped at T-5. I had been in the hospital for almost four weeks before I heard anything about TM. A doctor from Mayo clinic was visiting St. Anthony and he diagnosed the TM. I never did get his name, nor do I remember seeing him.

The next year was filled with endless hours in PT with little spurts of progress like the time I first moved my big toe. You would have thought I'd jumped up and danced a jig the way we were acting. That was the start. In the next year (year two), I went from walking with leg braces up to my chest to walking with a single cane. I still have the leg spasms, lack of complete sensation and the back pain some of you have. Also my bladder control could be better. But hey, I'll take anything I can get! Ten years after I was diagnosed with TM, I was in an airplane crash (whole nuther story by itself). I cracked my pelvis and broke some other bones. That has really slowed me down. While in the hospital over that episode, my doc showed me x-rays of my knees. I was wearing them out by locking them back to walk. He told me if I want to keep walking, I had better start riding in my chair, at least for when I go for long distance walks.

A couple of years ago I fell down and almost ripped the cartilage in one of my knees. Once again, my doc told me to take it easier on my knees. Today, I use my chair more than I ever have. Only walking around the house and keeping a real close eye on how I do things. I also suffer from the fatigue some of you have complained about. It makes life hard when you feel like you're running on empty all the time. Today, I'm married to a wonderful girl and we have two children and two grand children. I manage a mental health clinic specializing in working with children and families with emotional problems. I am working on a second masters degree in social work at the University of Oklahoma.

In the past 24 years, I have traveled over most of this country and to many different countries around the world. Sailing has been my release valve. I have sailed at most of the locations I have traveled to. I have taught sailing to over 100 people, including 29 emotionally disturbed kids I taught last summer. It was great! I have had plenty of bad times and good times. I've been able to go on with life. TM has slowed me down a little, but I'm probably a richer person because of it. I've learned to enjoy and appreciate what is in front of me. I see the beauty of the smallest flowers as I've struggled past them, when most never notice. I've smelled the fragrance of the spring days, the warmth of the summer sun, and the sting of a winter's breeze and understood the significance of it all.

It's been a long lonely trail in the past 24 years. I have only met, conversed with or heard of about 10 or 11 people with TM. Finding this group (the tmic) has given me a sense of belonging. I feel as though I've found my family. Only you guys can fully understand the fears, frustrations, and yes, the fortunes of having this disorder. It is great to have found my home.

Larry Throne

Eileen Prevatel
Wappingers Falls, NY
September 16, 1998

I am in receipt of your newsletters and must commend all those involved in this very informative publication. In just a short two year period your association has become international...what a wonderful effort. Belonging to a support group and receiving information concerning your rare disorder is the beginning of feeling better about yourself. You are not alone. I have Gullian-Barre Syndrome and not TM. However, these two or many rare diseases are difficult to differentiate. I am writing now so that you will know that you have a lot of company in your pain, discomfort and frustration.

At the age of sixty, I had just completed my third New York City 26- mile marathon in November 1994. A flu shot and a chest cold in December .... then completely paralyzed from the neck down on January 18, 1995. I have been there and done that, from full failure of bodily functions to the entire scale of tests and treatment. The first few weeks were the worst, the depression unexplainable as well as the pain of even a sheet on my legs and feet. Still unable to stand on May 12, 1995, I went home with a wheelchair/slide board/ tub-chair and a commode. Needless to say, my husband became my nurse and full-time caregiver. My son moved home for two months and took charge of my rehab, by August I was walking with braces on both legs and a cane. In September I started Aquajogging at the YMCA and continue that course of exercise to the present time.

After three and one-half years my hands are still numb, as well as my legs from the knees to my toes. Walking in ski boots; not feeling if my feet are hot/cold or wet and the balance problem all continues to be a problem. Most of all the depression and frustration of not being the person I use to be is the hardest .... But we all know that there are so many others worse than we and must make the most of what we have. With a positive attitude, we can hope to have a full recovery.

Swimming seems to help me the most. I am in constant pain and discomfort with leg spasms but have discontinued all medications in fear of side-effects. I do take vitamins and with bone-thinning, 1200 mg of calcium daily. I plan to start acupuncture therapy. I encourage suffers of any disease to seek second and third medical opinions and treatments.

My AFOs/braces are restrictive; uncomfortable; inconvenient, but necessary for longer walks. Will be helping at the finish line of the NYC marathon for the fourth year in November, aiding the disabled runners of the Achilles Track Club of NYC. Our son runs with blind and/or wheelchair athletes and expects me to join him in the next race. So-0-0 watch for me .... I just may make it. Thank you for allowing me to share with all of you.

Eileen Prevatel