Journal Volume 1 - January 2006
Article 34
In Their Own Words In each issue of the Journal, 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. We are particularly grateful to those people with Acute Disseminated Encephalomyelitis who wrote articles for this publication of the Journal. You may submit your stories by sending them either by e-mail or through the postal service to Sandy Siegel. Please be sure to clearly state that The Transverse Myelitis Association has your permission to publish your article. The Island Gardener: Charles Rhodes
My name is Charles Rhodes. I grew up in Michigan, but escaped the tundra for the sunny climate of the tropics. In 1982, at the age of 35, I began to have a terrible pain in my lower back. My doctor thought I might have a disc problem, and sent me home with some valium and codeine. Then it hit the fan. Over the period of a weekend, I lost use of everything south of my waist. I was hospitalized at Good Samaritan Hospital, in West Palm Beach, given IV Demoral for the pain, and cathed with a Foley catheter. Every infectious disease doctor and neurologist in Palm Beach County had a look at me, and they isolated me, just in case. One week later, they transferred me to Jackson Memorial in Miami, still in isolation. After spinal taps, mylograms, and a horrible EMG, they gave me IV steroids, took me off painkillers and started physical therapy. Three weeks later I transferred to Munson Memorial Hospital in Traverse City, Michigan for 13 weeks of PT and OT. I remember that they spent two weeks with me just getting me to roll over. Eventually, I went through the process of regaining my vertical self; the tilt board, the parallel bars, the walker, crutches, stairs, curbs, and self-cathing. Another six months of PT in Palm Beach and I became a walking paraplegic! The four big reasons I was able to make the transition were: my injury was incomplete, I was very healthy at the onset, I was very determined, and I had access to a swimming pool. In the 23 years since my attack, I was able to get off the catheters, thanks to digital stimulation. I had many bowel accidents, but I was able to work. The biggest change was when my urologist introduced me to papaverine. I was able to function as a man! For about ten years I continued to improve by pushing my body to its limits with long distance swimming, walking, and biking. The pain and spasms were always a problem, but stretching and exercise were a big help. Then pain became more of an issue and bladder infections were becoming more frequent. NSAIDs and daily antibiotics helped with those problems until about five years ago when I found Baclofen, Klonopin, and narcotics. I have been on oxycontin, morphine, and now use duragesic fenanyl along with two anti-depressants, Trazadone and Cymbalta. Because of the drugs, along with the neurological damage, I take Magic Bullet suppositories every two to three days, and Lactulose solution daily. With the aid of the painkillers I am still able to work which helps me keep my sanity. Please feel free to email me any time. Surviving Transverse Myelitis: What I have learned so far. The world is full of victims and habitual whiners these days, and I try not to be one of them, though it is hard not to go there. Tully mars. Charles Rhodes |