Volume 5 Issue 2
Page 49
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Southwest Virginia TM Support Group
I am Drema O'Dell. Even though I have met others with TM in the past, and even some people from our local community, this day was a dream come true for me. The meeting was attended by four members who have Transverse Myelitis. They were accompanied by family members and friends. We ran the gamut from weakness to paralysis in the acute phase. Each person took as much time as they wanted to tell their story or ask each other questions. No matter how much time has passed since TM entered your life, retelling your story remains so overwhelming. The newest to TM was a 30-year-old mother of two who was diagnosed in November 2002. The remaining three of us are older; suffice it to say, around 50! Two of us had very acute initial attacks with chronic ongoing residual effects. One woman in our group has recurrent TM. She also has probable MS. There are several other people from this area of Virginia who contacted me, but were unable to attend this meeting. We hope that they are able to make it to the next. We plan to hold our next meeting in Roanoke, Virginia. I came to know about Transverse Myelitis on November 20, 1989. I was at the peak of my career in direct sales. I was responsible for a five-county area and with 36 dealers working with me. I had a good income, along with company perks like a minivan and travel awards. Suddenly, it was over. I went to bed around midnight in good health and no preceding virus. I was over-worked and stressed to a small degree. I had a flu shot three weeks prior. I had surgery six months earlier and did have a nagging area of gripping in my side, with some numbness of the skin in the area. I also had a mild case of shingles about three months before. I had a very severe whiplash injury in a car accident a couple of years before. At 3 AM, I woke up with pain in the center of my chest, across my shoulders, and down my left arm. I used a heating pad and took hot soaking baths a few times. I ended up in a recliner with the heating pad and a bottle of ibuprofen by my side. I was just in so much pain. My husband got up to leave on a hunting trip. I convinced him that I had the world's worst case of bursitis and he should go ahead. The pain had eased some by the time my daughter got up and she went on to school. Just as quickly as the pain in my chest, shoulders and arm eased, it moved down my back. It didn't occur to me that I had not gone to the bathroom for many hours. My right leg began to jerk all around in violent movements and I had strong pain. My daughter arrived home from school and insisted that I go to the doctor. I got up! I could bear weight on my jumpy right leg, but my left foot was drawn up from the floor and hanging in a droop. My left hand was drawing also. The ER experience took hours. Since the pain started in my chest, I was placed on a heart monitor behind pulled curtains. My leg continued to jerk around. It was ignored. After four hours, my 16-year-old daughter was asked to get me back home and take me to my family doctor in the morning. When they assisted me off the table, I had no legs to stand on. Back on the table, they decided to admit me. When I arrived on the floor, I was in the room less than five minutes when my neurologist who treated me for migraines and whiplash came in the room. He tried to stand me up. No luck. He then did pin pricks to determine my level of sensation loss. Nearly collar bone. He told me they did not have the treatment options there I would need and I was being transferred to Roanoke. IV's were started while I waited for the ambulance to take me away. Steroids in the drip plus an extra injection for good measure. In Roanoke they told me that the steroids probably kept me off of the ventilator! I had one good arm. Everything else was affected; bowel and bladder; no walking; no movement of my legs at all. My left arm had movement, but my fingers were drawn inward and the whole arm was so weak I could not really move it. I could rotate my trunk some in the bed. Three weeks later, I got back small movement in my right big toe. I was denied entry into their rehab hospital. Four and one-half weeks in the hospital there and I was sent home in a wheelchair. As movement gradually returned with intensive therapy, I graduated to a brace for the foot drop, knee braces, walker, and a back brace. I eventually traded the walker for a quad cane. I walked with the braces and quad cane for about three months. I used the foot brace for two years. I walked with a limp full time for much longer, even though I did not realize it! Others did. I am so fortunate to have had such a great recovery. Yes, I have those wonderful residuals. Bowels that would never move without extra motivation. Urinary incontinence. Back pain! Leg spasms. Spasticity when cold or overtired. Leg torment at night. Toes that draw under. Reverse hot/cold sensation. My right side has loss of skin sensation. Left side is weak. Burning and freezing and tingling sensations. I have had several periods of deteriorating symptoms. I have done PT off and on for 13 years. I am currently in a great cardio and strengthening program at the YMCA. My weak leg gives out without warning and I usually can expect to fall several times a year. I never sleep much, because of the pain and spasms. Right now I use baclofen and clonazepam. I have used Neurontin. I have been evaluated for MS. Not proven. I have been to Dr. Kerr at Johns Hopkins twice. He is so nice and works so hard for all of us. I want to go back again soon. I did not have access to a computer until about 1995. From 1989 until then, I only had limited access to information. I was given the name of Deanne Gilmur through NORD at the time she was getting started with the TMA. I wrote her and received what information she had through the mail in a few days. Still very confused and frustrated by my doctor's belief that I did not have all the problems I knew I did, I called Deanne up on the phone. That conversation has changed my life! What a relief to know I was not a crazy hypochondriac. I have been to every national meeting the TMA has offered. I have made lifelong friends and learned so much. Deanne, Dick, Sandy, Pauline, Paula, Myk, Debbie, Jim and everyone I have met through the TMA - you are so important to me! I am excited about the research for the future. But to me the most important thing is supporting each other. How great it is that new patients and their families do not have to wait years to get accurate information about what has happened to them. Local support groups are needed to allow us to talk to others who know what we need. I was stunned to hear another lady at our meeting tell of a strange gripping pain in her side that is relieved by holding her arm above her head. I have the same problem. I have literally been laughed at by my doctor when I have told him. But I know - and so does Lois! If you live in this area of the country, please get involved in our support group. You can contact me by email, by mail or by phone. I would love to hear from you! Drema O'Dell
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