Living Life to the Fullest with TM
By: Sonia Lima
Name: Kim Harrison
The next morning her left foot was asleep as well. It started on a Wednesday and it took until Sunday to diagnose Harrison.
"The doctor came in on Sunday and said the good news was that I didn't have Multiple Scoliosis," says Harrison, "the bad news was that I have transverse myelitis, and walks out."
Harrison looked up Transverse Myelitis on the Internet, and realized websites make it sound scarier than what it is. "You look it up on the Internet and it's devastating," explains Harrison. "Your life is never going to be the same. You're going to have all of these problems. It's hard to read those diagnoses on the Internet, and it's taken a lot to read other people's stories."
Harrison took a look at her file and saw the word "paraplegic" on it. "I was like, ‘Whose file is this? This isn't me! We need to change this, that's not right."
Transverse myelitis (TM) a neurological syndrome caused by inflammation across one segment of the spinal cord. Estimates of incidence per year are 1,400 and 33,000 have some type of disability resulting from transverse myelitis. TM symptoms develop rapidly over several hours to several weeks. The causes are not known and recovery is very unlikely if there is no improvement within the first three to six months.
At the time, Harrison had a respiratory infection and the autoimmune system was trying to fight it, but attacked her spinal
cord instead. The brain is talking to the nerves but rejects the information to the muscles.
Harrison still has feeling in her legs, but doesn't have control of her muscles. "I feel hot, cold, sharp," explains Harrison. "If I put my feet on the ground I can feel the heat or the cold. If someone was to spill something on my leg I can feel it. I look down at my leg and tell it to move but it won't."
No socks or shoes
Harrison is not able to wear socks or shoes. "People ask me all the time if my feet are cold and why I don't put shoes on," laughs Harrison. "You think I would be out here when its thirty-five degrees with no shoes if I had a choice? I can't have anything touching my feet. I have to keep my feet out of my bed or a pillow under my ankle."
Harrison feels uncomfortable and pain when wearing them. "It feels like an Indian burn," explains Harrison, "like when someone twists your skin one way and then the other. For the most part I just dangle my feet; I don't even touch the foot pegs on my wheelchair."
Harrison has gone to the Shepard Center's Therapeutic Recreation in Atlanta, Georgia, where she was featured on the front page of their brochure. "I was awestruck! Of all people that was me," explains Harrison. "I was very touched."
Harrison went to a camp for people with disabilities for the first time in May of 2005. She was able to go jet skiing, climbed a rock wall, canoe, kayak, go four-wheeling, and water skiing. "I remember thinking that these were activities that I had never done before when I could walk," laughs Harrison. "I thought it was humorous that I had to be in a wheelchair to have all of this fun!"
"There is still life to be led," says Harrison. "There is still more adventures out there. I want to go skydiving now. It's a little different, but you still get the enjoyment out of it."
Harrison is in a support group in Atlanta for people who have transverse myelitis, where she seems to be the adventurous one out of the bunch, jokes Harrison.
Harrison is also in an online support group, where she gives information or advice to people who are new to the disease.
Harrison started to read some of the stories on the Christopher & Dana Reeve Foundation website for inspiration. "Reading those stories made me think that my story is nothing compared to them," remembers Harrison. "It's hard to go from being very active everyday, to the next day not being able to move and you don't know why."
"If some people who are injured can do a marathon or other activities, then why can't I?" says Harrison about the stories she reads online. "Christopher Reeve still led a full active life, was an activist, and kept spinal cord injury in the limelight. He opened so many doors for people."
Harrison does face challenges everyday but tries to stay positive.
"Before you just wanted to get in your car and go to the grocery store," says Harrison. "Now, it's the process of loading the wheelchair, finding a spot, getting into the store, getting the cart, trying to map out how you're going to shop so that you're not burning extra energy. Utilizing the store from beginning to end, so that you're not backtracking. It's getting the groceries out of the car, getting into the car, and getting back home. What used to take half an hour to 45 minutes, takes two hours now."
Harrison doesn't see herself any different, it's just the way she does certain tasks that have changed. "I admire someone who can do something with what has been given to them," says Harrison. "We don't have a choice in life sometimes, but we have to deal with it everyday."
Learn about transverse myelitis in our Paralysis Resource Center.
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Camp Attitude in OregonA non-profit that provides a positive camping experience for disabled folks.
CareCure CommunityCareCure Community features a SpinalNurse bulletin board with informed comments on matters of the bowel, and all issues of paralysis.
The Cody Unser First Step FoundationA not-for-profit corporation raising research funds to fight paralysis and to build awareness of TM. Named for Cody Unser, who was 12 when diagnosed.
Clinical Practice GuidelinesRecommendations for assessment, education and management of the neurogenic bowel.
Easter SealsWebpage provides parents guidelines for selecting an accessible camp
ALS Association Site is rich with news, research support, resources and connections.
Local Transverse Myelitis (TM) Support GroupsLocate a local TM support group by clicking on an area via the TM web site page for support groups.
Muscular Dystrophy Association CampsEach year MDA supports some 90 summer camps across the country.
KidsCamps.comSearch by state, country, camp name, you name it. This site allows you to search using a number of criteria for physical disability camps.
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NICHCYThe National Dissemination Center for Children with Disabilities publishes this page on
Post-Polio Health InternationalOffers information for polio survivors and promotes networking among the post-polio community. Publishes the quarterly Post-Polio Health, the annual Post-Polio Directory, and The Handbook on the Late Effects of Poliomyelitis for Physicians and Survivors.
The Transverse Myelitis AssociationFeatures news and information for TM, facilitates support and networking.
Paralysis Resource Center The Reeve Foundation Paralysis Resource Center Information Specialists are reachable business weekdays, Monday through Friday, toll-free at 800-539-7309 from 9:00 am to 5:00 pm ET. You may also schedule a call or send a message online.
Reeve Foundation Online Paralysis Community Connecting people living with paralysis, families, friends and caregivers so we can share support, experience, knowledge, and hope.
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