Transverse Myelitis Association
Volume 5 Issue 1
December 2002
Page 37
Volume 5 Issue 1
December 2002
Page 37
 California TM Support Group Cindy McLeroy Hi, everyone. My name is Cindy McLeroy. I have undertaken the role as co-coordinator for establishing TM support groups in California. The other co-coordinator is Debbie Capen. Most of you probably know Debbie. Debbie serves on the TMA board as Secretary. She has been such a support in all the symposiums the TMA has sponsored. Most recently she worked hard on the Children’s Workshop in Columbus, OH. Actually, with Debbie we get a 2fer. Her husband, Michael, is right there to support our group. I am hoping to have the first meeting in September. Even though I have been a member of the TMA since its inception, I have never shared my story. Perhaps before I write about our hopes for California support groups, I’ll tell you how I got started on the Transverse Myelitis path. In October of 1992 I was scheduled to go to New Orleans on a business trip. The Thursday before I had a deep root canal done and the specialist advised me that after dental work this extensive I could experience “something” in other parts of my body that appeared unrelated to the root canal. He gave me a prescription for antibiotics just in case. That weekend, I went to breakfast with my parents but had no appetite and just felt like a real slug. We then went to check out the local garage sales. I picked up a heavy crock and as I stood up, it felt like some one punched me in the back hard enough to knock the wind out of me. At that point I went home and laid down. The next day, Sunday, I went to a concert in the park. Normally, after the concert, my friend and I would walk around the lake four or five times. My back hurt so badly, I couldn’t make it once around. Monday I hopped a plane to New Orleans. This trip I was staying in the French Quarter at a beautiful hotel on Bourbon Street. I made the meetings on Monday afternoon, all day Tuesday and Wednesday. I had worked with the other folks in the meetings for many years. We worked for the same company and over the years had become good friends. We would work hard all day and then spend the evenings together. Wednesday night I had dinner out at Lake Pontchartrain where I enjoyed fried calamari (some blamed this for causing TM). Sometime, not long after midnight, I woke up and felt nauseated. I got up, threw up and went back to bed. Thursday morning I was up early. About 6:30AM I jumped into the shower. While shampooing my hair, my legs started feeling weak and “squashy.” They felt like they would not be able to hold me up much longer. I quickly rinsed the shampoo out of my hair and sat on the edge of the tub. I never did step out of that tub. Those moments in the shower were the last ones I stood on my own power. I managed to get on the bathroom floor. Luckily, there was a wall phone in the bathroom and I was able to knock it off the receiver and ask for help. I was also lucky that I was able to reach my nightgown and get it on before hotel security arrived to break the locks on the entry door to my room. I was on the floor, with no movement or feeling in either leg, so I was unable to open the door for help as the latches were up high. Strangely, I was not scared. At that time I was not in pain. I managed to get in touch with one of the ladies attending the meetings and she came to my room as I was being put on a stretcher. I thought I would be taken to the hospital, given some magic injection, feel great, slip into my levis and head back to my meetings. Not to be. I was taken to Tulane University Hospital, an excellent teaching hospital. There I suffered through the numerous tests most of us have experienced. I remember having four MRI’s, two spinal taps, all the tests for MS, etc. After eight days I was told I had Transverse Myelitis. I have reviewed my medical records from Tulane and they suspected TM from the time I entered the emergency room, where, by the way, I spent 12 hours. I received very little information on TM and most of my questions were unanswered. After 11 days at Tulane, I was transferred to St. Jude’s Hospital in Fullerton, California. I arrived by way of a medical air flight. It was supposed to be on a Lear jet; instead it was a prop job. Try that for nine hours lying down with nowhere to move or unable to turn over. Not fun. I was at St. Jude’s for six weeks for physical, occupational and recreational therapy. I also had the tests repeated that had been done at Tulane. After leaving St. Jude’s, I did about three months of outpatient therapy. I returned to work seven months later. My company had made some modifications for me, mostly parking and entrance to the building, plus, of course, the bathrooms. Luckily my office was big enough for me to maneuver around in easily in my wheelchair. I went back almost immediately to 10-12 hour days. They were pretty draining, but I had found that distraction was better than any of the pain meds I had tried. I worked for seven years and finally, due to changes where I worked and also the fact that I was just so fatigued, I left the company where I had worked for 32 years. Whoa, that was a long way to get to SUPPORT GROUPS IN CALIFORNIA. Since I stopped working at a paying job, I have become involved in many volunteer jobs. I am on the board of two nonprofits and have several really fun projects I work on each year. One of the boards I serve on is for a nonprofit agency. It is the largest independent living center in California. While it is a wonderful ILC, it serves all disabilities. I have decided that I really want to direct my energy, such as it is, to The Transverse Myelitis Association. I can do this by working with Debbie Capen to start support groups in California. Debbie and I have become great friends and we have agreed to work together to start support groups in California. We both live in Southern California about 80 miles apart. Initially, our focus will probably be just the Southern California area. California is so large that any one wanting to help, please let us know. We had some spirited discussions of what folks were looking for in a support group at the TM California Conference in June. We will try to incorporate as many ideas as we can. Saturday seemed to be the best day for most people so we are trying to find a place that is easy to get to and that will provide a room on a Saturday at no charge. Originally, I mentioned that we could probably have something ready by August, but it will have to be moved to September. If you are interested, please let one of us know. I can be reached at (714)638-5493 or email at cindymcleroy[AT SIGN]sbcglobal.net. Debbie can be reached at (909)658-2689 or dcapen[AT SIGN]myelitis.org. I will also put out a notice on the TMIC list. Debbie and I hope to get to know all of you in California. |
Go to Next Page
Go to Previous Page
Go to Newsletter Index
Go to Main Page