Journal Volume 3 - June 2008
Article 40
Canada: Montreal Quebec My name is Kimberley Kotar and I was born and raised in Montreal, Quebec. I am a 38-year-old female that was struck with sudden paralysis and power loss in both of my legs, but predominantly the left one in March of 2006. This was devastating at the time as I was training to complete the Ottawa International Marathon later that year. I ended up in the emergency room of the Montreal General Hospital on March 14th and on March 17th an MRI of the spinal cord showed that there were in fact two demyelinating lesions that spanned from T10 to T12. I can remember being in the doctor’s office and receiving the news, and later leaving the hospital feeling helpless and that my future was very uncertain. I was told I would probably never be able to complete another marathon. I felt like my life was over. Upon giving me the diagnosis, my neurologist told me to take two weeks off from work and to go home and sleep as much as possible. Two weeks later some of the symptoms got better, but I was still left with horrible neuropathy in the legs in the form of pins and needles, a strong burning sensation, and a slight bit of paralysis remained. I went back to the neurologist and told him that some of the symptoms remained. I was told that I would get used to it and to get on with my life. I couldn’t believe that was it; no treatment, no diagnosis and no answers. It was horrible. I turned to running to help me deal with the emotional devastation and feeling of helplessness. The more I ran, the less some of the symptoms appeared and before I knew it, in September of 2006, I ran the Montreal International half marathon. I went on to run 8 half marathons from September 2006 to September 2007, finishing in the top percentile of every race. While I would like to say that it was easy and painless, it hasn’t been and there were times during a race where the power loss in my legs was awful, but I was living my dream. Day-by-day over the past 21 months, some of the symptoms have decreased and some of the things I lost have returned and others got worse. But most of all I had managed to create a new life for me that can be as gratifying as my old life. In January 2007, I found a new neurologist and I finally received the diagnosis of acute transverse myelitis. While no one knew much about it, at least I had a name for the culprit that stole my life. Again, I left the doctor’s office with no treatment plan and was told to stay active, keep running and to keep doing what I was doing. During the past 21 months, I have had extreme difficulty in finding physicians that have any kind of knowledge about transverse myelitis so that I could receive the best medical advice and treatment. Transverse myelitis always appears to be something they have heard about, but don’t have any idea how to treat or recognize the symptoms. I also had difficulty dealing with the symptoms and the physical disabilities I have been left with as a result of the lesions’ damage to my spinal cord. As a result of the difficulties I have faced, I decided to form a support group as I knew I could not be the only one who felt lost at times and had trouble getting the medical help needed. I also know that our friends and families do not always understand what those with transverse myelitis go through on a day-to-day basis as hard as they try to. My goal is to form a support group where transverse myelitis patients can come together to share their experiences, help each other deal with the devastating diagnosis and the accompanying symptoms and to encourage those affected to find strategies to rebuild their lives as I have. Transverse myelitis has taught me a lot about myself and those around me. I am stronger than I ever knew and I take great pride in how far I have come with little or no treatment. I have also come to know that there exists a “fighter” in all of us; we just need to find it in ourselves. If I can give one person with transverse myelitis hope or inspiration that one day it will get better, then I will consider the group a huge success. There is no doctor with a magic wand to make it all go away. Sometimes in life I believe that we just have to create our own magic! My group is in the very early stages of development. If you are interested in joining the group and meeting on a monthly basis to share your experiences or hear the stories of other patients, please feel free to contact me. I believe together we can conquer anything we choose, one step at a time, one day at a time. Kimberley Kotar |