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.

I just recently found out about the TMA while I was doing some research on an existing problem. I was delighted to discover the TMA. While sitting at the library reading all that I could, I suddenly realized, G-d didn't only do this to me, but to others, as well. I didn't feel all alone. In 1975 I was told I was the only person in the USA to have TM.

I just received my first issue of the TMA newsletter and my membership directory. I was so excited that someone other than myself and family knew anything about TM. I immediately had to write, and say, "Hello, I'm Tammy and I'm another victim of TM."

Well, this is my story, but please excuse me if some of the details are not clear. In November of this year, it will be 26 years that I have suffered from TM and its everlasting affects.

It started a few days after Thanksgiving in 1975. I was eleven at the time of the onset. I remember feeling like I was getting the flu, along with a horrible headache. I didn't go to school that entire week. I was still feeling terrible at the time, but this is something I'll never forget. My family and I were watching television in the living room; we were watching All in the Family. I began to have pain in my back. At first I didn't think too much about it. I thought it was a flu-like symptom. However, the pain became more severe. I thought if I lay on the floor, maybe it would relieve the pain. It did not! The pain was getting worse. My Mother gave me a pain reliever and I went to bed. The pain continued throughout the night. In the middle of the night, I started noticing a numbness feeling around my chest and back. Then my left foot and leg was becoming extremely weak.

The first thing Monday morning, my Mother called our family doctor and they said, "bring her in immediately." By this time I could barely walk; my left foot and leg was completely paralyzed. My Mother had to carry me to the car. On the way Mom stopped at my Grandmother's house for some help to carry my lifeless body into the doctor's office. By the time we arrived, I was totally paralyzed around my chest and back, both legs and feet (excluding my arms and neck). My bladder was so full, it would have burst if I had arrived any later. I had no sensation that my bladder was full; granted I was only eleven years old and I didn't understand what was happening to my body.

The doctor had no clue what was wrong other than my bladder needed to be emptied immediately. He called an ambulance and they took me to our local hospital. I was there two days. Plenty of tests were taken, but no one had any answers. Then on December 3rd I was transported to Riley Children's Hospital in Indianapolis, Indiana. When I arrived, there was a team of physicians waiting for me. I only can recall just a few of their names.

I had spinal tap after spinal tap and test after test. Twice daily I had shots given to me in my legs; and I don't remember the reason for these shots. The team of doctors still didn't have a clue at this point. When all of my tests came back, they had to send them to California for more 'testing.'

Meanwhile, I was taking intense physical therapy twice daily and occupational therapy three times a week. I clearly remember the PT. At first, I despised my PT; she would make me so mad at times for forcing me to get my legs in use again. Now, looking back, I'm immensely grateful to her for keeping me focused on my outcome, which was to walk again.

When the test finally arrived, the team of doctors called my family in for their 'three' inconclusive diagnoses. The doctors 'suggested' it 'may be' MS or muscular dystrophy or Guillian Barre. When I saw my Mom cry, I knew it was something awful. Being only eleven, I really didn't know what MS or muscular dystrophy or Guillian Barre were. Then the doctors told me that I would never walk again. I 'never' would comprehend the fact that I would spend my life in a wheelchair. I was 'determined' to walk and to prove the doctors wrong. However, they didn't know any more than I did!

Although I disliked my PT, I decided to use my anger against her in a positive manner. My 'only' focus was to walk again and to go home. I asked my neurologist at the time, if I could go to the PT four hours a day instead of two hours per day. He reluctantly said, yes.

As the days went on, my legs began getting stronger and some of the numbness was somewhat starting to diminish. Then my legs started to jerk uncontrollably (but at least they were moving). I took it as a sign from G-d that 'I will' walk again. That gave me more ambition and faith. I 'am' going to beat this horrendous disease.

Christmas was only a few days away and all I wanted was 'not' to be in the hospital on Christmas and I desperately wanted to go home. Granted I was not 'ill.' I was 'disabled' and getting somewhat stronger. So, I pleaded with my attending physicians to let me go home for two days. After doing a lot of praying and pleading, he gave me approval, but with one stipulation. That my parents drive me to our local hospital twice daily for those 'unknown' shots in my legs.

I flew in that wheelchair like a bullet, getting to the phone to call my dad and have him come and get me. If I can correctly recall, he had already been to visit that day, as both my parents visited every day, even though we lived about forty miles one way. Within a couple of hours, Dad and his best friend finally arrived. Luckily, his friend had a van for my wheelchair and I.

It was a great Christmas except for the four unwanted wheels I was affixed to. However, I was thankful and happy to be home with my family that had taken remarkably good care of me. And to this day, my family is caring and understanding when it comes to my health.

Meanwhile, back at Riley, I continued my strenuous PT. It was finally starting to help.

I distinctively recall one particular evening. I had learned the routine of the nurse's duties down to a science. After lights were out, I decided to see if I could attempt to walk to a chair, which was about four feet away. I quietly sat up and put my legs over the side of the bed. I remember saying, "I can do this!" My legs were very heavy when I placed my feet on the floor. I started to lift myself up, my legs began to tremble, but I was not going to give up. Slowly, I made it to the chair. At the same time, a nurse passed by the door. I was so happy that I had done it that I didn't hear a word she said while she was scolding me. Although later that evening she said, "Good job!"

The next morning, I could not wait to show and tell my PT. For the next few weeks, I was getting stronger and stronger everyday. I was slowly but surely starting to walk again. Finally, after all the prayers and my determination to walk, it happened.

By this time, the doctors determined that it was TM, and that was when I was told I was the only person in the United States to have this disease. I was released but continued to have problems. And still do have problems due to TM.

Then at the age of 14 I was diagnosed with severe scoliosis and was the first person here in my hometown to have the surgery; just my luck. That was also a horrible experience. If any of you have ever experienced being on a Striker Frame, you will completely understand. Also, wearing a non-removable full body cast for nine months. Then I wore a removable body cast for nine months, twenty-three hours a day. I understand the surgery is much more advanced. I hope so, anyway; although that was a long time ago, 23 years. I would never want anyone to ever go through that unforgettable treatment.

Meanwhile, I have had a pretty long period of "decent" health, except for the everlasting affects of TM. No one has yet to help with these problems, because most neurologists know little or nothing about TM.

I started to go to college at the age of 33, and began having severe lower back and buttocks and leg pain. I eventually had to drop out of school, and had to break down and apply for Medicaid. And as of July 2000, I was diagnosed with spinal stenosis. I had surgery in September. It seemed to ease the pain at first, but now the pain is worse than ever. But I'm not going to give up until I'm out of pain, if ever. I'm awaiting an appointment with a neurosurgeon in July. Hopefully, he can help.

Well, that's just a fraction of my story. I realize that I am very lucky to have come this far. I hope my story has somehow helped or inspired you and your family. For those of you with TM that have not been as fortunate as I was, my prayers are with you all. Remember, you are not alone - like I thought for the past 26 years.

In closing, I will do whatever it takes to help the TMA, especially getting TM awareness out to the public. Also, I will help with fundraising for the TMA. I would also like to thank Dr. Levy and Dr. Lynn for their remarkable efforts and for actually knowing about TM. Thank you!

I would like to add that I have applied several times for social security disability benefits. I am fighting for something that I am legitimately entitled to, along with all others with TM.

Your TM friend,
Tammy Morrison