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.

I am a 70-year-old physician and cardiologist from the UK, but I am also a patient of TM. I had read about TM during my student days. I listened to lectures and lectured myself during my stay at the university on this subject, but had never seen one case during my professional career. I never thought I would see one, let alone become a victim of TM.

I retired early at age 61 and continued to work six to eight months a year helping my friends. I enjoyed my work and had a good life. My wife, Beryl, and myself spent a lot of time with our three children and eight grand children spread over three continents. Life was good and I was hoping to continue to work for a few more years and continue visiting friends and relatives. Just before my 68th birthday on the 31st of January my whole life was going to change. I had two attacks of bad cold in the months of Dec 97 and Jan 98 and I also had taken the Flu Vaccine in Oct 97. I was working that Saturday and returned home after a busy ward round. I have been a health and fitness fanatic, strict with my diet, regular exercise in the gym and yoga. I also played golf as often as I could. In spite of a busy day, I had been to the gym and done yoga that morning. I was going for a quick game of golf that evening and my wife thought I should take it easy. I had not passed water since noon and all my efforts failed. My wife wondered why I was visiting the toilet so frequently. I told her the problem and thought at my age, enlarged prostate was the usual problem.

Beryl drove me to the hospital at midnight and it was thought that there was a slight enlargement of prostate with retention of urine. A self-retaining catheter was put in and I was admitted for observation. The next day the urologist came and said I could have the catheter out the next morning and go home on some tablets and he would assess me in the next week or two. That morning I observed that the slippers were shooting off of my feet every time I tried to walk. I thought it must be the loose slippers. Beryl observed that I was a bit unsteady when I tried to shower; we thought maybe because of the previous late and restless night.

I was sitting on a chair all the evening watching TV and at midnight when I tried to stand up, my legs became numb and wobbly and I fell on the floor. I thought it was numbness due to sitting too long on the chair. I did not call the nurse or any body else. I just crawled and then climbed on to the bed. In the early hours of the morning, I found I could not move my legs and they were numb and heavy. I felt as if it was like the trunk of a big tree. I thought all sorts of things and finally scratched my legs with my fingernails upward towards my tummy. There was dulling of sensation up to mid-chest and pain around at that level. Then I realized I must be having an attack of transverse myelitis and called the nurse and told her my problem was neurological and not urological and it was an emergency. The surgeon came to see me and after brief examination, managed to get a neurologist within the hour. They all agreed with the diagnosis of TM. As the hours went by, I was getting weaker and weaker and now my arms were also numb, weak and unsteady.

I was transferred to a teaching hospital in London where I had a MRI of the spinal cord which showed some patchy signal change in the dorsal region which enhanced with gadolinium. There was no meningeal enhancement. A MRI of the brain done the next morning was normal with no abnormal enhancement. Lumbar puncture showed 82 lymphocytes, pressure normal and proteins slightly raised at 675m.gmper litre. All blood results were normal; viral studies normal. The neurologist thought that it might be tuberculous in origin, as I came from India and have had some temp off and on for few weeks (whether it was due to severe attacks of cold). If I agreed, they would start me on anti-tuberculous therapy. By that time I was too ill to think, agree or disagree. In retrospect and with further results in hand, we agreed at the follow up, it was not tuberculous in origin, however it was worth continuing the treatment for the whole year as it involved only oral therapy, which I did.

This was the third day in the hospital and I was going down fast. My wife and children were told that they should not expect much and, at the most, I would be in a wheelchair in a year's time. You can imagine the distress this caused. From that day I started meditation, more or less all the time, when I was without any audience. I visualized my brain, spinal cord and peripheral nerves and started sending signals asking the cells to regenerate. On the 7th day, I was bed-bound and could sit in a wheelchair with help. The body was limp, legs were weak and numb, arms were weak and there was no coordination. I could not sit or stand and my hands could not hold anything. I needed help to empty my bowel and bladder. Overnight, from an active professional man, I had become a vegetable almost.

The nursing staff was ignorant of my condition or indifferent to it. I had a different nurse every few hours, mostly agency nurses and there was no continuity of care. I was never given a face/mouth wash before breakfast. I was too ill to walk to the wash hand basin. Food and tablets were left on the table and I was asked to get on with it. When I spilled or dropped a tablet, I was told off. Beryl was worried about my back and nothing was done to prevent bedsores. Beryl was a nurse, so she brought the necessary things and took care of my back. This 7th day, it took two physiotherapists and a helper and my wife to get me up and sit and they had to hold me and without support I would fall back into bed. They tried to make me stand with help and made me do some exercises. After they left, I tried doing the same every hour.

Next morning, I was feeling a little better and I was taken to the physiotherapy department where I had some more physiotherapy and I practiced it every hour in my ward with help of my wife. Next day, I was a bit stronger and was able to walk in parallel bars. I returned to the ward and practiced with the wall railings. Following day, I had more walking practice and this day with a stick. By this time the hospital routine was getting me down and I asked if I could go home for the weekend as nothing much was going to happen with physiotherapy. They all agreed. I was going to my daughters and the bedrooms were upstairs and I had to use the stairs. The physiotherapist asked me if I would like to try the stairs and I said yes, and we did. I became more confident. I went to my daughters and I went to the nearby church with my grandchildren and then to the supermarket with my wife and managed to walk with a stick. My daughter's neighbors had heard I was seriously ill just a few days ago and now to see me walking, they just could not believe it.

I went back to the hospital on Sunday night and after further lumbar puncture, blood tests and more physiotherapy over the next three days, we returned to our own home. I had more physiotherapy locally and was told that I was doing fine and that I could continue at home. Now I needed to empty my bladder with self-intermittent catheterisation four to six times a day. I continued meditation, added yoga bit by bit and even went to the gym.

Everyone says that I look great and my physicians say that I have done very well, but I feel that a small fuse is missing somewhere. However, with continued improvement, we decided to go on a cruise to Norwegian fjords. After our return, we went to see our daughter, son-in-law and two grandchildren in LA. While in LA, my daughter and son-in-law wanted me to see an acupuncturist for the urinary problems. I did see one and I am not sure if it helped. I did start passing water myself, at times, which has slowly improved. I continue meditation and exercises. I feel this has certainly helped me.

When I was seriously ill, all my family, friends and even the classmates of my grandchildren requested their teachers to put my name on the sick list to be mentioned in the daily prayer for blessings. I am sure these good wishes and prayers helped me too.

Right now, I am independent, self-caring, and need intermittent self-catheterisation a few times a day (if I am home, I can manage without it). I still travel a lot, planning to add yoga and restart gym. We have been around the world by air visiting daughters and family in the USA and Australia and son and family in India. While I look well and generally feel well, the little fuse somewhere is still missing.

Dr. C. R. Rao
18 Daryngton Avenue, Birchington, Kent CT7 9PS UK
ram.rao[AT SIGN]btintemet.com