In Their Own Words cont.

My Encounter with
Transverse Myelitis
Ann Moran
Ireland   September, 1998

On the morning of 3rd May 1990, I was busy working at home. I had a business designing and making bridal wear. I went to take a break and get changed to take my daughter to the doctor's, and as I raised my arms to change my sweater, I got the most awful searing pain in my groin area. I could not sit down and even standing was almost unbearable. I have a recollection of having slight lower backache earlier in the day. Also, about a week earlier, I had backache, but put this down to gardening.

A neighbor helped me to get to my doctor who was unable to examine me as I was in so much pain. She thought that I had slipped a disc. She gave me a morphine injection in the thigh and told me to go home and lay on a hard surface and that she would come and examine me after her surgery time. I did this. I lay down on the floor, and after a short time, felt that my feet were very cold. I asked my daughter to bring me a cover. Then I fell asleep for approximately one hour from the injection and when I awoke, I found that I could not move at all. So when the doctor did arrive, she was flabbergasted, and could not understand what had happened. I found out later that she had never come across TM before.

I was taken by ambulance to our local hospital. The hospital was eleven miles away. This was at 6 PM in the evening. They also did not know what was wrong and I was very cross that I had been left in the casualty department for six hours and did not see a consultant, only a trainee doctor. Well, eventually they decided I had to be transferred to another hospital, which would have better equipment to do tests. So, at 12:30 AM I was transported by ambulance to Galway and a hospital, which is approximately fifty miles from my home.

Here I was given a mylogram, and they sighted some small clots of blood on the lower back area from waist upwards. So they operated straight away to remove them, but found that this was not the cause of my paralysis. They were only on the surface. There had not been any pressure on my spinal cord from the clots. I never heard the word "paralysis" used once until the next stage of my journey with TM.

The next stage of my journey, DAY 2, I was taken by helicopter to Dublin, almost 200 miles away from my home. On being admitted, this is where I first heard the word "paralysis" mentioned, and it scared me to death. I just could not believe it. I thought what was wrong was something like pins and needles and would go away after a while. I had never heard of anything like TM before.

Little did I know what a long journey I had to face and all of the difficulties I would encounter. I had several tests done in Dublin, which included MRI and CAT scan, and a brain scan, lumbar puncture - which I will never forget until the day I die! Unfortunately for me, I had a trainee doctor doing the lumbar puncture. Several blood tests were also done. MS was mentioned, but ruled out. Nothing could be found in the way of cancer. So, the final diagnosis was TM.

I was put on steroids as from day 3 in the Dublin hospital. I think that I continued to take these for three months. I have requested my records but have not received them yet to check on this. I also started Physiotherapy and was put on a tilt table each day starting for five minutes and building up to 20-30 minutes. I had completely lost my balance and could not sit myself up in bed or turn over. I had to be turned every two hours, day and night. After two months, I was transferred to the rehabilitation hospital also in Dublin. Here I had to stay for six months and learn to live without my legs. I had no movement at all in my lower region. It was very frustrating. Then one Saturday evening, after being put to bed, (we had no choice, we were put into bed after teatime and that was that) -- I always tried to move my feet or legs, which only happened in my brain. But one Saturday, I managed to move my big toe, very slightly. This caused great excitement on the ward, and I had everyone, including the nurses, coming to look at "my toe."

Each day we did Occupational Therapy in the morning and Physiotherapy in the afternoon. Learning to transfer from my wheelchair onto a bench, and as I had lost my balance, I was terrified of making this move. Many times I cried at these therapy classes from fear and from the loss of the use of my legs. It was a long ordeal, but gradually I did get stronger and learned to transfer. But even up until the day I returned home, I could not do this by myself. I had to have help. I can't say that I had any severe pain in my legs. It was more like a severe burning sensation. At first I could not bare to brush crumbs off my lap. This hypersensitivity is still there. I find that I am "switched off" to it most of the time, but it has eased a great deal. I only have these feelings around my feet and ankle area now.

Toileting was a huge burden for me. I had had a catheter fitted the evening of the first day while in the hospital in Castlebar, and when I started to get sensation back, which was about three months after the onset, I could not bare the catheter and had to have it removed. From there I had to learn to use the intermittent self-catheterization, which I did for several months. Eventually, I was able to use the toilet normally. By the time I was going home, in December 1990, I was fine, but had to make sure that I visited the toilet about every two hours, or regulate it as to what drinks I had. Up until today, my bladder problem is the worst part of my TM. For me, everything else I can cope with and, of course, the more sensation and normal feelings I am getting back, the more problems with my bladder. They tell me that my bladder shrunk with the paralysis and so the capacity is not so great. There's talk of doing surgery for a by pass, but I am not really keen to have this done, so I am battling on and coping with it. I never had any real trouble with my bowels, except in the first two or three months. Then they returned to normal.

The position I am in today is that I am making progress even though it is very slow. I have normal feelings from my waist to my knees, and sensitive to touch from my knees to my toes. I do some standing every day and I am able to walk a few steps with a rollator walking frame. I do make an effort to do these things every day to try to strengthen my legs. It is my knees that give me trouble. It's as if they have not "thawed out" yet. After standing a while, my knees collapse. I rely on my wheelchair to get around the house and to go shopping, etc. In addition to all of this, I have had to face having a partial mastectomy for breast cancer in December 1996. Thankfully, to date, I seem to be keeping well.

I note from other people's letters that they use leg braces. I must enquire about these to see if they would help me. I did purchase some "legs" called a "walk about." I heard about it on a program called Beyond 2000. It was a man in Australia that invented it. But because my legs and feet, in particular, are still very hypersensitive, I have been unable to use these "legs" as when I try them on, they cause my feet and ankles to go into spasms. I am working along with a personal assistant that does my physio and we are using massage and aromatherapy on my feet and legs and I find that this is helping. My legs are not so sensitive at the moment.

Through all of the years I have been unable to walk, I have kept busy being involved in several things. I found that this has helped me "stay sane." I learned to drive using hand controls. This was a big stepping stone as it means that I am not confined to the house, and as I live in a rural area, it is essential that I am able to get out and about independently.

I have been Chairperson of our local branch of Irish Wheelchair Association. And I am currently Secretary. I am also involved in a group called The Centre for Independent Living which was started up with the help of a lady from Berkeley, California, in Dublin back in 1991 and 1992 and came to the West of Ireland in 1995. My job was Leader Coordinator, which meant visiting all the people with disabilities in the Mayo region who were involved with CIL. This does not mean that all the people with disabilities in Mayo were able to have the PA service. CIL helps people to find Personal Assistants for the disabled and gives guidance on how to work with a PA and also on living independently. But because CIL relies on the government community employment schemes to fund the PA's, there are certain criteria, one of which I came under this year. I had been on the scheme for three years and so had to take a six-month break. My time is almost up now, only to find that the numbers that are allowed on the scheme are covered. So, I may have to wait until next year to get back on the scheme. In the meantime, we will continue to lobby government for permanent funding for the Personal Assistant service.

Maybe the fact that I will not be working with CIL is a good thing. I could concentrate on TMA, and try setting up a support group with your guidance here in Ireland. I have not done anything like this before, but would be very interested in doing so. I know how I have felt all these years. Feeling so isolated, not knowing anyone else with the same problem. I did meet three other people when I was in the rehabilitation centre that were diagnosed with TM. I will try to get in touch with them through the disability magazines here and maybe if I write to the rehabilitation hospital, they would pass my name on to patients past and present.

I will look forward to hearing from you.

Regards, Very sincerely,
Ann Moran
Derrygorman Westport
Co. Mayo Ireland
098-26469

Doris Ballou
Melbourne Beach, FL
November 6, 1998

My bout with Transverse Myelitis began on May 5th, 1998 as I was flying home from Rome, Italy. My roommate on the trip through Italy had caught a bad cold about three days before we left Italy. Soon after we were airborne on our way from Italy to Florida, where we live, I began to feel ill.

I thought I was catching my roommate's cold so I tried to relax and drink plenty of fluids. Before long, my chest felt like someone was squeezing it and my head was splitting with pain. I took two Tylenol tablets, but they made me nauseated. I asked the steward for ice for my head. I never have a headache, so I thought the cold germs hit me full force. The steward took one look at me and said, "you need a doctor. Can you believe there are 54 doctors on this flight going to a convention?" I told him not to bother the doctors, that I would be all right. In no time, four doctors were around me questioning me about my aches and pains. They asked the steward to clear a middle aisle row of seats so I could lie down. When I was stretched out, the stewardess brought a tank of oxygen and the doctors checked my vital signs. They evidently thought I was having a heart attack, because one of the doctors would check my blood pressure every few minutes. One of them had the airline captain order an ambulance to meet our plane in Philadelphia. I was transferred to the hospital there, given antibiotics, many tests and kept for four days until my fever broke and I was able to head for home.

When I landed in Orlando, Florida, I tried to stand to walk to the door of the plane where a wheelchair was waiting, but my legs were completely numb. I told the stewardess my legs were asleep and I couldn't move them. She helped me to the door and to the wheelchair.

My son met me and drove me to my home in Melbourne Beach. I saw my pulmonary specialist the next day to check on what was diagnosed in Philadelphia as bronchitis. I was wheeled into his office in a wheelchair. When I told him my legs were numb, he checked the circulation and thought my leg pains were from the trauma of my illness. He gave me more antibiotics and sent me home.

After another day of misery, not being able to even stand on my legs, I called the doctor, went back to his office, and he put me in the hospital to undergo tests from the vascular specialist, the cardiologist and the neurologist. The second neurologist who saw me diagnosed my problem as Transverse Myelitis, after he ordered a MRI and a spinal tap. I was given prednisone by IV and kept in the hospital for a week, then sent to a rehabilitation hospital.

A physiatrist directed my care at the rehabilitation hospital. I continued the prednisone orally until I was weaned off of it. I had four hours of therapy for my legs each day for ten days. I was able to go home and have visiting nurse and physical therapist care three days each week for six weeks.

I now exercise on my own and see the neurologist and physiatrist from time to time. I am taking neurontin twice a day. I go to an aquarobics class two or three times a week. I was doing this before I contracted Transverse Myelitis.

My progress the first two months was outstanding. I went from totally immobile legs, to getting around in a wheelchair, to a walker, then to a cane. The last four months I can not see any progress, although the doctor says that the damaged nerves in my legs are healing. He says that I may take eighteen months to recover but encourages me with the hopes that my legs will be fine again.

I had MRI's two days this week. The doctor says that they show my condition is stable. The lesion that has been affected in my spinal cord is T10 and it has not changed.

I continue to work toward the goal of overcoming this Transverse Myelitis or developing the strength to live with it and keep doing the pursuits that I enjoy - serving the Lord through his Church in teaching and serving others. I am a retired Director of Christian Education, a teacher and a short-term missionary. I enjoy gardening, painting and other hobbies. I am a widow and I enjoy my family, four sons and their families, including six grandchildren. Many faithful friends are a blessing, too.

I am grateful to find the Transverse Myelitis Association on the Internet and thankful for Deanne Gilmur, Sandy Siegel and all of the officers. I appreciate communication with other TM patients and the encouragement from case histories in the periodical.

Anonymous
Arizona

I was inflicted with TM at T-12 in June 1991 at age 59. I was admitted to an ER as a paraplegic and remained so for about six weeks while being medicated and treated through physical therapy (PT). After eight weeks I was discharged from the rehab center as a wheelchair outpatient with minimal ambulatory skills. I remained an outpatient for two years while undergoing PT at home and at the center. My ambulatory skills were reacquired through the following stages: physical therapy on the mat, acquiring transfer skills from bed to wheelchair, halting steps on the parallel bars, practice with a walker, graduation to walking with two canes, then one cane, and then no canes. I still utilize a cane for safety purposes, and to assist me over curbs and up flights of stairs.

Initially, the whole process was painless, but pain increased gradually as I reacquired mobility. In short, now if I were to walk ten miles per week, you would need to administer morphine about once an hour to relieve the pain. My pain (leg and groin pain) is minimal if I walk exactly one-half of a mile per week in three separate days, and I do not overdo sitting and standing.

It is my experience that acute TM is a very manageable disorder if one experimentally develops a strict regimen tailored to one's own case. I think it is a good idea to keep a detailed diary as to PT, medication, pain levels and character, and general notes. Presently, my own regimen is as follows:

1. Exercise Monday, Wednesday, and Friday including stretching, walking (on grass or on a treadmill) 1.5 miles per week, and lifting weights on a fitness machine which covers all major muscle groups.
   
2. Hot tub therapy every evening for my legs.
   
3. Daily medication including Darvocet and Baclofen for pain, and aspirin for blood thinner.
   
4. Vitamins C and E.
   
5. Lots of sleep including about seven hours per night and a two-hour siesta. I have found that my most therapeutic position while resting is lying on my left side in a prenatal position, and on a firm mattress, I might add.
   
6. I work with my computer lying on my back on a bed.
   
7. My diet consists of fruits, cereals, some soups, and mainly fish and chicken with rice every evening. I utilize prune juice and light doses of Correctol to maintain regularity.
   
8. I do not use caffeine or alcohol, or much sugar.
   
9. My only vice is puffing on a good cigar or two every day.

I cannot travel by air very conveniently, because I have a continence problem. Accordingly, I travel by car and never stray too far from a restroom. I also carry a urine bottle, which I rarely need to use. For safety, I carry a cell phone in the car because I sometimes travel in remote areas or in large, unfamiliar cities. In accord with my exercise and diet program, my bowel movements are very regular but require digital stimulation for initiation. I still lack some sensitivity in that area. My social life is near normal. However, I cannot sit and talk for more than about an hour because of excessive pain accrual.

My occupational therapy consists primarily of working with the computer, including professional writing and personal financial management. After coming to terms with TM on the basis of a strict regimen, which had to be developed experimentally with the help of my doctors, my life in retirement might be called "normal".

However, in 1996 I was diagnosed with having incipient Parkinson's Disease (PD), another neurological ailment. I am currently being medicated for PD with Permax and Carbodopa that seem to be working to offset the advancement of shaking of my right arm. I have been told that my longevity should be normal and that the PD will not be fatal. There are a number of drugs being developed for PD, and I expect the disease will be mitigated in my case. Unfortunately, PD is often accompanied with growing depression. I am now experimenting with low doses of Prozac to offset this effect.

I hope that this information will be of use for the TMA and its members. You all need to be convinced that there are intelligent means to handle TM. I know it requires a comprehensive approach and a regimen tailored to each case.

Very truly yours,
"Anonymous in Arizona"