TMA Newsletter, Vol 5, Issue 1

Transverse Myelitis Association
Volume 5 Issue 1
December 2002
Page 26

In Their Own Words

In each issue of the newsletter, we will bring you a column that presents the experiences of our members. Their stories are presented In Their Own Words by way of letters they have sent us. We are most appreciative of their willingness to share their very personal stories. It is our hope that through the sharing of these experiences, we will all learn something about each other and about ourselves. It is our hope that the stories will help us all realize that we are not alone. You may submit your stories by sending them either by e-mail or through the postal service to Sandy Siegel.

Mary Alica Reynolds
Dwight IL

I want to share with you what happened to me and how I am doing now. First of all, I caught TM in 1999. Within the two and half years of contracting TM, I lost my youngest daughter, grandmother, my oldest brother, my middle brother, my father and my mother. Last June 24th my youngest brother died. Yes, I have really been through it. Dealing with my losses and prison and TM has just about taken its toll on me.

I don’t know how I got TM, but maybe from having an infection in my body somewhere. I just don’t know. I woke up on November 9, 1999 with chest pains. I thought I was having a heart attack. I laid back down and fell back to sleep. I then got back up and went to go to the bathroom and couldn’t go. My legs felt wobbly and I could barely walk. It took maybe an hour and my body went numb up to my chest. My left leg went out from underneath me and my right leg was real weak.

I finally got to the hospital and was catheterized. I had a lot of doctors examining me, but they didn’t know what was wrong. First they thought it was MS, but then they ruled it out. When they took an MRI, they still couldn’t find anything. Finally, the second MRI showed some inflammation on my spine. I was then put on steroids intravenously. At that time they told me I had TM.

After being in the hospital for about a month, they weren’t sure whether I would ever walk again. I wasn’t going to the bathroom on my own and I couldn’t control my bowels. I was a real mess. I didn’t want to live that way. It has taken me a long time to get to where I am today. I started out in a wheelchair, then to a walker, then walking on my own.

I didn’t have any pain for about six months and then I had so much pain that I nearly lost my mind. I couldn’t even stand without having pain. Well, I then had to go back on my walker and start all over. I had nothing for pain, so I still walked and just dealt with it. I then got better, but I started having real bad burning sensations and muscle spasms. I was given viox, baclofen and two other muscle relaxers, but nothing helped.

I was self-catheterizing and just hoped that I didn’t have a bowel movement when I was out. Well, next came spasticity and I still had the burning. I’ve tried everything for this spasticity and stiffness; nothing has worked. I got on pamelor for the burning and I’m doing really well with that. I do have some burning here and there, but not much. I still have the spasticity. When my leg wants to draw up, when I’ve been sitting for a while and have this tightening sensation, I’ve learned just to tell my mind to relax that muscle. It takes a few seconds, but it is working.

I’ve been told to exercise my leg, but I wasn’t seeing any change in my leg. I just about decided to give up. I was getting tired of having to lay around all the time, because my legs hurt and I have a bad knee now from walking straight-legged. I got up and started walking as much as I could; pain and all. At first I thought, I can’t deal with this pain. But the more I pushed myself, the stronger my leg is getting and I don’t think about all that pain anymore. No, this pain isn’t in my head. I really was hurting, but I just used mind over matter.

The better you start walking, the more determined you will get and the less pain you’ll think about. I am walking very well now with my brace at a pretty fast pace. I can’t believe how well I’m doing. I almost walk like I used to. I don’t even use a cane. Getting your balance and watching your feet, how you step, then it is smooth sailing. I barely have a limp.

I quit catheterizing myself and started urinating all the time, only a little at a time. I was always on the toilet, but now I’m using my bladder on my own and I can even hold my bladder and not go on myself. I do wear panty liners for just in case. I can’t believe that I’m doing so well and my attitude has changed so much.

I still have the bowel problem, and I do stress over that, but I use suppositories and make myself go even when I don’t need to. This avoids accidents. I do have them every so often.

It’s been two years and I’m still getting return in my leg. I’m starting to practice going up stairs without holding on. My determination is what has gotten me doing so well. Don’t give up. And if your doctor tells you that if you don’t get return in three to six months then you won’t, well, it is not always true. I am the proof of that.

I’m really doing well and I’ve had to pull myself through it with only myself and the help of G-d and reading Sandy’s letters and the newsletters. Well, that’s the story. I hope I’ve encouraged you to keep walking, to keep your mind strong, and to trust in G-d. It works!

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