Transverse Myelitis Association
Volume 4 Issue 1
March 2001

Page 16
In Their Own Words

 

In each issue of the newsletter, we will bring you a column that presents the experiences of our members. Their stories are presented In Their Own Words by way of letters they have sent us. We are most appreciative of their willingness to share their very personal stories. It is our hope that through the sharing of these experiences, we will all learn something about each other and about ourselves. It is our hope that the stories will help us all realize that we are not alone. You may submit your stories by sending them either by e-mail or through the postal service to Sandy Siegel.

Sandy Smith
Scotland UK
mmsmith[AT SIGN]freenet.co.uk

 

As one of the minority of TM sufferers who experiences recurring episodes, I hope my story helps others.

I had been in the Parachute Regiment for eight years prior to working as a deep-sea fisherman and suffered from back problems as a result of a parachuting accident in 1968. But nothing prepared me for the devastating effects of TM.

It was 3 June 1988 and I was painting the cabin of the fishing boat on which I worked, when I suddenly felt a pain in my right leg and it began to feel numb. I had visited my doctor a week earlier complaining of cramp-like pain in my right leg, which he thought was caused by circulatory problems. But the cramps had gone and on that particular Friday morning, there had been no pain at all. The numb feeling in my leg got so bad that I knew I had to get off the boat quickly. I found someone to drive me home. By this time my right leg was completely useless and I literally crawled upstairs on my hands and knees to bed and called my doctor. Within three hours the numbness had spread throughout the whole of my lower half. My doctor couldn't find a pulse in my right foot and I was rushed to hospital by ambulance. By now the pain in my right side was so bad, I was punching the sides of the ambulance (and to think a doctor had once told me I had an exceptionally high pain threshold!).

The following day, I was transferred to a more specialised hospital in Edinburgh for tests, which included a lumbar puncture, two myelograms, and a CT scan but the doctors could find nothing wrong. I was given steroids for the first week, which is still a bit hazy. During that first week, I had absolutely no control over my lower half. My right leg was totally paralysed but my left leg was liable to shoot out and kick whoever sat on that side of my bed. My wife and sons bullied me into concentrating every ounce of energy into making my toes move and when my big toe finally moved about a ½ inch, I had to be propped up to see it move as I couldn't feel anything and wouldn't believe them. From then on we were all determined I would walk again.

The next few months were spent doing intensive physiotherapy. As movement gradually returned to my legs, I had muscle spasms so fierce I was yanked out of bed at three o'clock one morning, pins and needles in my legs, and then several months of the weirdest sensations imaginable. For days on end my legs would feel like wet concrete setting, then for no reason my whole bottom half felt like it was encased in broken glass. There were times when any movement made the inside of my legs feel like a wet cloth being very tightly twisted or my feet felt like big sponges. Sounds crazy, I know, but I felt these sensations even though I was completely numb. It was extremely uncomfortable.

I think that during this period, all my energy was taken up with coping with what was happening to my body so I had no interest in anything or anybody. Fits of depression were common place and I would slink off to my room and talk to no one for possibly a week at a stretch. Then came what was probably the worst time of all when I was hit with bouts of white hot pain, mostly in my right side and leg, lasting for up to 20/25 minutes and which caused me to black out. The strange thing was, when I regained consciousness, the pain had always gone. This was when my Physiotherapists refused to treat me as 'they couldn't cope with the pain I was having' so it was back to hospital for another month but still no answers. Electrical tests showed that the nerves from my brain to my feet were intact but something appeared to be stopping the messages getting through. No one could explain why.

It was around this time (six months later) that the words Transverse Myelitis appeared on a Medical Insurance Certificate. We asked what it was and were told it meant nothing really. It was simply an expression used by doctors when there was inflammation in the spinal column and no one knew why. We were to spend the next eleven years thinking this!

By February 1989 I was able to drag myself along with elbow crutches. A consultant then told me I would probably never walk and would always have to live with that pain. I went home and cried but I hadn't reckoned on my wife's stubborn determination. She decided that if there was something there that was bad enough to stop me walking, the doctors should have found it and if they didn't, she was determined I would walk again and nothing was going to alter that. We decided not to tell our family but just to say that the doctors hadn't painted a rosy picture. We didn't go into detail and thankfully they didn't ask.

We found a private clinic and mercifully acupuncture reduced the pain levels to a more manageable level so that I no longer passed out. I still had no feeling in my lower half but with endless exercise, I slowly began to walk. I spent hours trying to walk to the beat of singing nursery rhymes and this helped improve my co-ordination. I progressed to using a personal cassette player thinking that while I attempted to walk in time to the beat, the music would take my mind off my legs. It helped. Not content with walking indoors, my wife insisted on taking me out for a walk every single day. Sometimes I could only manage to the bottom of the garden path but we both felt it was important to walk outside as this helped my confidence as well as my ability to walk. There were still times when I found it difficult to make my legs work and was forced to lie in bed for several days at a time.

My first major relapse came in 1994. I just couldn't move my legs at all and my back felt like a block of wood. My doctor couldn't believe it when he ran his pen across the sole of my left foot and instead of my toes reacting, my hip joint rotated and my foot turned inwards; something he'd never seen or heard of before. Back to the hospital again but this time a very high dose of steroids had me on my feet within a week. I continue to have periods where, for several days, my back seizes up which prevents my legs from working but steroids and bed rest usually gets me mobile again. I attend a chronic pain management clinic and acupuncture helps keep the pain at a manageable level. And like other TM sufferers, I endure problems with bowel and bladder. There is still no feeling in my lower half, except for pain, which means when I sit in a chair, my top half feels like it is floating. But no feeling doesn't mean no movement, so I can walk for short distances.

I was back in the hospital after a fairly major relapse in October 1999 when a young doctor asked me to be his 'test' case. Because this condition is so rare, I appeared before about 30 senior consultants. A chance remark by this young doctor resulted in us finding the TM Association on the Internet and for the first time in 11 ½ years, I realised that TM is a recognised condition and that other people suffer from it. The relief is indescribable. I have had a long telephone conversation with another sufferer in Scotland so have proved your statement 'we are not alone'.

My consultants don't think that my parachuting accident had anything to do with my TM but I do, and nothing will sway me from that thought. I feel as if I have been to hell and back, especially during the first year, but the important word is back. I came back from hell and with the help and support of my family, I live an active life. Our sense of humour helped us through the 'black' times and I now drive a car with hand controls and do voluntary work helping other disabled people. The best advice I can give is to concentrate on what you can do and try not to think of what you can't. If you're lucky like me, you might find you have abilities you would never have known about.

My son once said, 'If you're doing a jigsaw puzzle and there's a piece missing, you won't complete the puzzle. TM is a puzzle, and the doctors need to have all the information available if they're to have any chance of solving the puzzle'. I would like to wish the TMA continued success, so please keep the information coming. Before I sign off, I would like to say to my fellow sufferers, if you look around, you will always find someone in a worse condition than you. You will laugh and you will cry, but if you persevere, you will get there in the end.


Janice A. Yoder
Lusby Maryland

 

One afternoon in 1972, when I was 11, while playing in the backyard, a pain began in my right side/back. I thought I had just pulled a muscle, but as the pain intensified, I came inside. When my mom got home from work and saw how much pain I was in, we both assumed I had pulled a muscle in my back. So she called our chiropractor. By the time we got there (about an hour later), I was completely paralyzed from the waist down. He tried to take a few x-rays, but needless to say, he wasn't going to touch me with such symptoms! An ambulance took me to a hospital that my parents did not care for, but they had no choice in the matter. At the emergency room, they performed a few simple tests (reflexes, temperature, sticking me with a pin, etc.) but could find nothing abnormal. They began questioning my parents as to whether they beat me a lot. One nurse realized I really couldn't feel anything below the waist and tried to convince the doctor to look at me again, but they sent me home.

So off my parents go with a paralyzed child! They had to get the next door neighbor to carry me upstairs to my room! My parents knew the diagnosis was ridiculous, but weren't sure what to do. The next morning they contacted my pediatrician and he sent us to a different hospital. The doctors at that emergency room assured my parents that they would get to the bottom of things and find out what was wrong. They did more extensive tests, a spinal tap and mylogram. Again, everything was normal. They reported back, "Well, we might just have to consider the possibility that her paralysis is psychosomatic." Even the nurses thought I was pretending since sometimes my foot would jump as an involuntary reflex, for example. They didn't send me home, but for about four days I just laid in the hospital bed. Finally, five days into the ordeal, a neurologist made the "assumed" diagnosis of TM; this being based on my symptoms and not on any given test. They didn't have MRI's in 1972.

The doctors told my parents they had no idea as to how much recovery, if any, I would have, and that very likely I might never walk again. The neurologist felt it best that I be "institutionalized" since he felt there was no way my parents could care for me. No rehab was suggested. The doctor said all they could do was give me nursing care. My mother insisted that she could do that at home, and eventually arrangements were made for a hospital bed, wheelchair, etc. About a week later, I came home.

Our small living room was turned into a makeshift bedroom for me. The chiropractor began visiting almost immediately and we really believe his manipulations helped. He was such a kind man. I think that in his heart he believed I could be completely cured. That didn't happen, but I did make excellent progress (considering I might never walk again). I give my mother credit for teaching me to cope with my changed circumstances. She taught me not to give in to self-pity, but to get out and about with people and lead as normal a life as possible. Around the home, as I was able, I was expected to do small chores. A year after the onset of TM, I was back in public school, although at first in a wheelchair. Each year as I became stronger I used it less and less, until eventually I walked around all day on crutches. I was never teased at school. I don't know if it's because the children knew me from before TM or what, but I got along fine with everyone.

Today, I get around with the aid of one forearm crutch. There is permanent nerve damage to the legs and, of course, the usual bladder and bowel difficulties that come with this illness. Interestingly, except for the initial onset, I've never been in any pain as a direct result of TM. A few years ago, however, the mild scoliosis I'd had for years turned severe, and that created some lower back pain. However, I've had success using magnetic therapy and chiropractic treatments to manage the symptoms associated with the scoliosis and to date have kept surgery at bay.

I lead a very active life - I drive, swim, horseback ride, etc. I often say I do most things other folks do, it just takes me a little longer. And I'd say I'm mentally well adjusted (although some may question that!) In 1991 I married Carl, my loving and supportive husband. By choice we have no children, but our lives are active and rewarding. My faith in my heavenly Father and His promises have been a tremendous source of comfort and strength to me through the years. I am in no way bitter. Sometimes we say, "Why me?" My feeling is, "Why not me?"

I have found it interesting to watch how people react to my disability. When they first meet me they notice my crutch, and they're very conscious to offer assistance when needed. But after a while they kind of lose sight of that. I'm just another person - not a disabled person. How many times I've pulled into a handicapped parking space and a friend will say, "We can't park here. This is for the disabled." And then after a brief pause, "Oh, I forgot!" That truly warms my heart and I consider it a compliment.

I recently asked my husband to check the Internet to see if there was any information on it about TM. What a surprise to find there's an Association! This is the first time I've heard anyone else's experiences with TM. I don't know how much assistance I can be to anyone since my illness occurred so many years ago, but I'm happy to help in any way I can. I'd like to extend my thanks and appreciation to all the hard-working individuals working with the Association. You're making a valuable contribution to the lives of many.

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