I was so pleased that my out-of-the-blue call to Sandy in March 2013 paid off. As member of TMA, I receive the quarterly newsletters and opened up the Jan. 2013 edition to see a picture of participants from the 2012 TMA Family camp. In addition to having TM since 1972, I work for U.S. Paralympics (www.usparalympics.org), a division of the United States Olympic Committee, and I knew our organization needed to reach all those attending the camp.
About The TMA
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Entries by The TMA
Most young girls spend their time riding their bikes, playing soccer, doing cartwheels, and other fun activities. Sarah Todd Hammer from Georgia and Jennifer Starzec from Illinois were no different. That is, until they both became paralyzed from the neck-down from an autoimmune condition called Transverse Myelitis (TM).
Many of my patients tell me that they don’t exercise because, “they don’t know what exercises to do.” This is a curious problem. On the one hand not exercising is a safe solution, after all, if you don’t know what the proper exercise is then maybe you will be hurting yourself if you push yourself to exercise, especially if you have a chronic condition like transverse myelitis (TM).
Without making it a sob story, I wanted to share a bit of my history. A lot of people have illnesses or things happen to them where the only choices are to succumb to it or to work hard in order to have a life as well as you can get. The Paralympics events have shown us that people are consistently overcoming disabilities or illnesses to be successful in different areas of life.
Fatigue is a pervasive issue in individuals who have been diagnosed with transverse myelitis and other rare neuroimmune diseases and often is responsible for large changes in lifestyle, family time and work schedules. It can be one of the most disabling issues that patients deal with, yet is often not addressed in an aggressive fashion. At our clinics in Dallas we take a three-step approach to dealing with fatigue.
It all started with a sharp shooting pain across my upper back and going up to my neck. Following that, I felt a tingling sensation running up and down my right arm, like ants crawling . It was uncomfortable but not painful, so I did not pay much attention to it. This feeling carried into the following week and my right arm grew weaker. I lost my appetite and also began to feel tired for no reason.
As your child prepares to begin the new school year, it is important to make sure that his or her educational needs are met. Demyelinating diseases, like TM, NMO, or ADEM, often present unique challenges to students and schools alike. Because of the rare nature of these conditions, most school personnel will not be familiar with your child’s medical condition or understand his or her unique needs.
I never really got behind the idea of support groups. I could see how they might benefit others, such as grieving spouses or recovering addicts, but I never thought it would be comforting to tell my woes in front of a group of strangers. In fact, in my mind, it would be discomforting. I didn’t want to listen to the whining and complaining and declarations of victimhood of others, and I didn’t want them to listen to mine.
You’d think that after nearly seven years I’d be used to it – the terrible burning, stinging sensation in my hands, the tight banding feeling in my arms, the stabbing pain in my legs and hips. I’m not though.
I don’t want to be drugged out of my brain, that’s the trouble. I want to have a quality of life – I can still work part time and really feel as if I’m being at least partly useful.
In early November 2000 Nick started becoming ill. He was just done eating dinner when he vomited across the kitchen – I was shocked. Up to this point he was a healthy twenty three month old who was active, talking and above average in his skills and was never sick a day in his life. After vomiting, he started having a fever of 103.5 that would not go away even with an antibiotic. He was checked for infections by the pediatrician but they found none – we were told it was just a virus.