Living Life My Way With TM

When I celebrated my 60th birthday with a big party in April 2005, I was in excellent health. I worked full time, exercised regularly, and lead a physically active and energetic life. All that changed one year later. In April 2006, I fell on my stairs at home. While it was a bad fall, I suffered no immediate damage other than a scare, accompanied by some pain and stiffness that subsided in a day or two.

About a week later, however, I experienced some numbness in my right foot during a neighborhood walk. Over the next few weeks the numbness spread up my right leg. It then set in on my left side, starting with the foot and moving up my leg. In addition to the numbness, my legs felt heavy and it became hard for me to walk, particularly up and down stairs. I also developed problems maintaining my balance when walking.

At this point, I began my lengthy acquaintance with medical specialists and assorted tests. While no one could come up with a clear diagnosis, my condition got progressively worse. By July of 2006 I needed a cane in order to walk. Later in the year, my primary neurologist began to suspect Transverse Myelitis (TM) and referred me to the TM Center at Johns Hopkins. Sure enough, further tests at Hopkins confirmed that I had spinal lesions consistent with TM.

I had never heard of TM; most people haven’t. Suffice it to say that it’s a rare neurological disease in which areas in the spinal cord become inflamed, causing damage in those areas, disrupting normal communications between the brain and other parts of the body. The doctors called my TM “idiopathic,” meaning that it had no known cause. (I’ve always suspected that my fall back in 2005 caused my condition. However, the neurologists tell me that’s not the case. They say it may be just the opposite: perhaps my fall was a result of my emerging TM, not its cause.)

Just as doctors don’t know the exact cause of TM, the damage likewise has no known cure. The best that can be done is to treat the damage with drugs that reduce inflammation and treat symptoms such as spasms and neuropathic pain. Physical therapy also can help ease the loss of bodily function. I’ve been told that roughly one-third of TM patients get better, one-third get a little bit of improvement, and the remaining one-third may see no improvement at all. Unfortunately, I seem to be in the last category since my condition seems to have gradually worsened over the years. On the positive side, I’ve never suffered any pain from my TM. This is very unusual since I have heard that a lot of TM patients experience pain.

Over the eight years since I contracted TM, I’ve tried a number of drugs to lesson my symptoms. I’ve also done physical therapy. I get regular MRIs and other tests to monitor my condition. While my numbness and loss of strength and balance have become more pronounced over the years, I try not to let it get me down too much. I exercise regularly with water aerobics, the treadmill and a stationary bike. I get around using a combination of canes, a transport chair, and a walker that I affectionately call “Jack Skywalker.” (Hence the name of my team.) Since I retired from my job as a high school guidance counselor in June 2007, I’ve pursued a number of interests and activities. I love to travel and spend time with my friends and family. Overall, I have good days and bad. However, I’m determined to continue getting the most out of life, with the support of my wonderful family and great friends.

I hope you will support this event and my Jack’s Skywalker team. Your donation to SRNA will benefit in many ways all who live with this condition. Thanks so much!

~ Jackie Wray

Support her efforts to raise funds for the Awareness Campaign here. You can also register or start your own team on the campaign’s main page!