Mississippi Support Group

Hello, TM Family. My name is Joyce and I have had TM since September 1992. I had just turned forty-two years old when it caught me. I have begun a support group in Mississippi for all of the TMers, their families, caregivers, and friends to come together and be able to discuss our problems and needs with someone that really understands. We have a web page on The Transverse Myelitis Association site; just click on the link for the Mississippi Support Group. Our support group meets once a month; please check our web page regularly for meeting times and locations.

My journey started on September 17, 1992. I had been having problems with numbness in my right hand and arm for a few weeks. I went to the ER, and doctors told me I was tired and stressed out. I worked as a waitress and had been working twelve to sixteen hours a day, seven days a week, because we were short of help. I assumed the doctors knew what they were talking about. Then the numbness started traveling down the right side of my body. In the meantime, the doctor decided it might be carpal tunnel syndrome. I was trying to tell him that the numbness was getting worse and no one would listen. The doctor was setting a date for my carpal tunnel surgery.

I was living in Jackson, MS, and no neurologist would take me sooner than three months. My husband, with whom I was separated at the time, lived in Greenville, MS. I called him and told him I needed a place to stay for a few days to see a doctor in Greenville. I called a neurologist there, and he worked me in within a week. I went to Greenville a few days early, because the numbness was traveling faster down my right side. My appointment was for September 21, 1992. On September 20, as I was walking across the floor, my feet literally quit working. I panicked.

I went to the hospital, and was immediately put on liquid steroids. The doctors started doing many tests, and I was scared half to death. I had never been sick a single day in my life. I kept telling the doctor just to give me something to fix it, that I needed to get back to work. By then I was paralyzed from the breast down with some numbness in my hands and arms. My doctor was a superb doctor, but he had no bedside manner. After several days of tests he told me, "I have good news and I have bad news. The good news is that I know what you have, and it is called Transverse Myelitis. The bad news is that if the steroids don't start working, as quickly as this is progressing, you'll be dead within six months." He had labeled me a T7-8 paraplegic incomplete. He had determined that I had TM based on the spinal fluid. I remember something about him saying that a normal level is four and mine was twenty-one. I did not have a MRI done, but medical technicians did the Nerve Conductor Test, many x-rays, blood work, and some I have forgotten. In the hospital they started physical therapy. On October 1, 1992, I left the hospital with a wheelchair, potty-chair, and a walker to either get better or die.

Nothing worked right. When I tried to eat, I missed my mouth. My coordination was so off that I wore more of my food than I ate. I had to give myself steroid shots in the muscles; plus, they started me on a lot of medications. The doctor decided to send a physical therapist and nurse out to see me at my home. The nurse had to check the levels of medication in my blood, which meant blood work every week. My physical therapist was one of the sweetest young girls I've ever encountered. I was really angry, but she had the patience of a saint. She encouraged me. With her help, I got to the point of being able to get up on a walker and get around my house.

One day, when I was six months into TM, my husband looked at me, sitting in a wheelchair, and very calmly said, "Joyce, I'm sorry, but I can't handle this." He was nice enough to wait for my disability subsidy to begin. I knew it was time for a change, so I moved. After a time, he came to me and wanted to try to work out the marriage. I guess the shock was a bit much. We tried for several years, off and on, but it just did not work. Finally, in 1995, I divorced him. Today, we are good friends, but we could never be husband and wife again.

I have gone through many neurologists, trying to find one that understands TM. I found one that took another neurologist's MRI and saw something. She sent me for a new MRI and found I had lesions not only at the T7-8 level, but also at the C4-5 level. That finding explained the numbness in both hands. In the meantime, I had had double carpal tunnel releases done. Most of the neurologists I saw continued with the same thing the one before him had been doing. Mississippi does not have a lot of people with TM that know about each other nor doctors that have even heard of TM.

Today, I can walk short distances. I can manage in my home on my feet most days, because there is something near to grab on to if I start to fall. I have to use a wheelchair to go out for any length of time or to do major shopping. I am one of the very fortunate ones, though. I do have some limitations, but I can live independently. I have not been able to work since 1992. I tire easily, and I live with chronic pain 24/7. My balance and coordination are off, and I have to concentrate when I am walking, making sure where my feet are and in which direction they are facing. Otherwise, my feet have a tendency to go where they want and usually end up putting my body on the ground. These difficulties are easy to deal with compared to some of the concerns others have to deal with. Until lately, I managed with a cane for short distances. I have just recently had to go to a back brace and the double arm crutches to be able to walk short distances. These devices help relieve some of the pain that walking with the cane seemed to enhance. With the cane, I seemed to walk leaning more to one side and had less control of my feet. As I write this, the use of these accessories is all new to me. This change in walking devices was another low blow to my ego. Like all things, I get over ego trips and get on with living.

My family and friends have had trouble accepting that I have anything wrong with me, so my support system hasn't been very understanding. I am the youngest in my family, and they want me either 100% OK or totally an invalid. They are extremely good to me and will do anything to help me, but they just don't understand what I go through on a daily basis. I never knew exactly where I fit in -- disabled or "normal," so it was hard to make them understand. I never felt I was one of "them" -- the handicapped. I felt this was temporary, and the doctors would find a way to make me well. For ten years I lived this way. I am in counseling today to learn to accept my limitations. All these years, I kept telling myself I would return to "normal," but I have to learn to accept that this is my normal.

I am back in physical therapy, again. I started having a few problems with my feet burning; my legs are banding more, my balance is off more, and I do not have a lot of energy. My neurologist feels this new round of physical therapy may help. I have to go back for physical therapy about once a year. For some reason, I have more muscle spasms, as well as pain. This condition gets better, and then it gets worse. I have a tendency not to exercise as I need to. I realize this has a lot to do with the muscles getting weaker and my having more spasms. My weight has fluctuated back and forth a lot since I was diagnosed. I gained a lot of weight through the years, but then without trying, I began to lose weight. I found that some of the medications caused me to want to eat more. Another problem for me was depression, and I was not even aware of it.

In the first few years, I trusted the doctors and never questioned anything. Today, before I will take a new medication, I want to know all about it. I have learned through time and trial and error that knowledge is the best tool you can have to help yourself. Exercising is important; keeping one's muscles built up helps the body more than anything else. The old saying, "if you do not use it, you will lose it" is very true.

I do not let myself become discouraged. Life is too short to waste time worrying about what one cannot do. I have a good sense of humor and a strong faith in God. I feel these two traits have helped me to get to where I am today. I have learned that if I cannot do something the way I used to, I should try to find another way. If it is something I just cannot do at all, then it cannot be that important. It can wait till someone else can do it.

I have tried to return to Hinds Community College for the last five years, and I am fifteen hours away from my associate's degree in preparation for becoming a social worker. After that, I have at least two more years to complete the bachelor's degree, and for me it will probably take longer. I have managed to keep good grades and remain a member of Phi Theta Kappa, an international scholastic honor society. I have had to drop out of school many times, because of a minor setbacks (extreme pain or other physical problems), but I will continue until I become a social worker. The most important lesson I have learned is to listen to your body. It will tell you when enough is enough. I may have to give in to some of the symptoms I have from time to time, but I will never give up. Everyone has a purpose in life. We each need to find it and live our lives to the fullest.

Please get involved in the Mississippi TM Support Group. I will look forward to hearing from you.

Joyce Boothe
jboothe[AT SIGN]myelitis.org