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Fight rare neuro-immune disorders. Together.
I was born in 1943 without the lower portion of my left arm from just below the elbow. Growing up, this fact never seemed to bother me all that much. I got used to the stares from people. Unbeknownst to me, since I never had that part of my arm, I grew up doing what others at my age did, learned how to do what came naturally. I never thought of my limitations as compared to other “fully able-bodied kids.” I played baseball with only one arm and maintained a very high batting average and could catch and throw the ball as good as anyone else. I made the All-stars! To me, I was just a normal kid, and knew no difference. I had to do chores the same as my older brother with no special considerations being given. I worked my way through college and ultimately obtained a law degree. I never thought I was any different from anyone else, mostly thanks to my parents for not treating me differently. So, I went through life never thinking about not having my left arm. How can you miss something you never had in the first place? I hunted and fished and enjoyed life like anyone else, and was driving a car at age 14.
At age 52, I was brushing my teeth one morning and dropped my toothbrush. I discovered I was unable to pick it up because my “good arm” was not wanting to work for me. My wife drove me to the hospital ER and they had no idea what was wrong, even with MRIs, CT scans and X-rays. Later that evening, I noticed I was limping favoring my left leg and had a difficult time urinating. I was kept for observation and later that night, I awoke with extreme pain in my sternum and both arms and was given Darvocet for pain. I woke up the next morning not being able to move and needed to urinate, but could not. My wife called a doctor friend of hers and he referred her to a neurologist who came to see me in the hospital. He came to my bedside and told me I had Transverse Myelitis at the T-2 level and suggested I leave the hospital I was in and go to the Houston Medical Center. I did. I was given IV steroids, plasmapheresis seven times and was informed what Transverse Myelitis is and that I was paralyzed from the chest down.
After 30 days in the hospital, I was admitted to intense rehabilitation for 90 days and told by the neurologist that I would probably walk out using a hand walker. That never happened and I remain paralyzed from the chest down and use a power wheelchair for mobility. After two years of home therapy on my self-built walking, collapsible, hand rails with leg/ankle braces and electro-stimulation, there was no improvement at all and it has been that way ever since.
For 22 plus years of being paralyzed, together with all the usual associated issues, I realized my having grown up with only one arm allowed me to more easily adapt to my new circumstances and face challenges by resolving hurdles with solutions because I learned how, growing up with one arm. Mostly, I am a survivor of TM due to my loving wife and daughter standing beside me and encouraging me. I feel sad sometimes when my 8-year-old grandson, who used to love to ride in my lap, says he wished I could walk, then I say, “we still have fun, don’t we?”, and we go on having fun playing catch, baseball, fishing or whatever. We do not dwell on it.
My Hopes are too many to list. We are all an inspiration for each other and have our own story to tell. I wish to thank Jim, Pauline and Sandy, Deborah, and Dick and Deanne Gilmur as well as the many-many others, who are too many to list here, that have and are making the TMA what it is today. NEVER LOOK BACK, BUT LOOK FORWARD.
Bob Cook
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In Memory of Nickie Garrigan
April 1980. My daughter, Nickie Garrigan, developed Transverse Myelitis. I wish she was here to tell you her experiences with TM. Since she cannot tell her story, I will speak for her.
I was a healthy 2-year-old and had just celebrated my birthday when my parents noticed my left foot slightly turned in when I walked. I had recently received routine immunizations and had a slight cold. I then developed a stomach flu that did not respond to doctor’s care and was hospitalized for three weeks. These occurrences have been suspected of causing TM. During that hospitalization, I became weak and was in severe pain. I never walked normally again. I left the hospital with a diagnosis of juvenile rheumatoid arthritis. The first specialist I saw advised that I would be in pain and, I needed to get used to it. Not satisfied with that advice, I started seeing specialists at Children’s Memorial Hospital. During the summer of 1980, I received a tentative diagnoses of leukemia, degenerative muscle disease, and a brain abnormality. It was several months until I received the TM diagnosis and was told it was a one-time occurrence. I soon found out I actually had Recurrent Transverse Myelitis. MRI’s were not available yet and an orthopedic specialist diagnosed TM on the basis of damage to the spinal cord. I often had many mini episodes where I became weak, and oral steroids restored function many times. When I was 10, I had an episode that did not respond to oral steroids and was paralyzed from the neck down. That began my introduction to IV steroids. Christmas day I was able to wiggle my toes and limited function returned. I also learned I had Lupus. After a long recovery, I was able to walk again and tried to resume a normal life. I got my driver’s license at 16. I graduated from an all-girls high school shortly after having my first spinal fusion, and that summer drove to Florida with my friends. I was still having physical therapy at Children’s Memorial when I met a young mother whose daughter had TM. It was the first time I met another person with TM and it was my introduction to the TMA. I am forever grateful for the hope and support I received over the years from the TMA. The TMA made me into the strong woman I became in spite of my physical limitations. Complications continually occurred thru my 20’s and worsened in my 30’s. I attended every Symposium and made lifelong friends. I was planning on attending the September 2013 Symposium. By August of 2013 I could no long transfer in or out of my wheel chair but my brother, Russ, came every day to help with my transfers. He was also with me before my last ambulance ride. I told him I loved him and we didn’t know that we hugged for the last time. I still fought but the TM side effects caused a stroke and blood clots that were too much for me to overcome. I lost the battle on September 5, 2013. Please help support the TMA so that other families will not need to experience the loss my family has endured.
Nickie was a fighter. She never allowed either TM or Lupus to define her or to limit her. At the age of five, she won the Scout Halloween Costume party dressed as a ballerina with her long metal braces attached to hard white shoes. She wanted to become an Olympic gymnast; her family encouraged her to pursue her dreams as a swimmer. The day camp award for achievement and effort always went to Nickie. She received the highest awards in Girl Scouts and became a Girl Scout Leader. In April of her senior year of high school, she had spine surgery and managed to walk down the aisle to receive her high school diploma in June. Nickie became a TMA support group leader in Illinois. She lived in Chicago. When she was able, she held support group meetings at a local hospital. Although she was not able to continue these meetings, she frequently received phone calls from new TMA patients and shared experiences. Her courage inspired her family and friends and she is missed by everyone who knew her and cared for her.
Fran Garrigan
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