In Their Own Words

My Journey
Isobel (Bel) Forster
Western Australia

My journey begins in November, 1958. I was 11 years old. Prior to November, 1958, I recall only twice, on different days, (and how far apart I don’t remember) shooting pain up and down my spine. I didn’t even mention it to my parents. I ignored it, because at school we were practising for the faction sports. I loved running, and I wanted to beat my friend who was always a bit faster than me. I wanted the gold ribbon! On this particular day, after school had finished, my friend who lived next door, asked me to go with her to the local butcher shop for her mother. It wasn’t far, only about 3 blocks, so we walked. I remember getting this terrible pain in the middle of my chest, and then “underneath” each rib cage. Thinking it was just “stitch” or “indigestion,” I kept going. In the butcher’s I sat down, and remember doubling over; the pain was so bad. When I got home I told my Mum who told me to go and lie down until dinner time and she would see how I felt then. This was now about 4 PM. The next thing I remember is when I was called for dinner and I said, “I can’t walk and have no feeling in my legs!” My eldest sister naturally thought that I was playing games, and, unbeknownst to me, pinched my leg. Of course, I didn’t respond! I was paralysed from the waist down.

I had no other symptoms, only the odd two pains in the spine, the “stitch,” and then the paralysis. My parents called our local doctor who came and advised that I should be taken to The Princess Margaret Hospital for Children as it seemed serious. That night is a bit of a blur. I do remember, however, being given a spinal tap to ascertain whether it could have been poliomyelitis, but as I had the vaccines at school, it was not. The spinal tap was very painful. After that, I remember lying in bed with screens around me, and lots of doctors and nurses looking, talking, asking questions, prodding and poking! It was frightening and horrible. After the first day, because of the paralysis, I couldn’t urinate. So, I had to have a catheter. Gosh, how embarrassing that was for an 11 year old! Sometime over the next few days, I had x-rays taken, I guess to see if I had any spinal cord damage or if it was broken. Being totally paralysed from the waist down, the examinations over those first few days and week were continual. I was like a guinea pig on display, with viewing and tests, more viewing, more tests! All they knew was that I had nerve damage. So, they called it “polyneuritis.”

I don’t recall how many days after the tests, but in their wisdom, the doctors decided to put my legs in half plaster casts from behind the knees to the ankles! Supposedly, this was done to keep me straight and to avoid any spinal damage! This meant, of course, being sponged often to avoid any bed sores. To a young child this was all bewildering, unnecessary, and inconvenient. Who wants plaster casts? I wanted to go home! After a few weeks, the doctors decided that the casts were of no benefit, so they were removed.

The weeks ticked by, and it was heading towards Christmas. I was still paralysed with no feeling in both legs. I still had this “tube” draining into a bottle under the bed and all the embarrassment and inconvenience that comes when you can’t use your bowels normally. I wanted to go home, even for the day, but the doctors refused. So, I spent Christmas in the hospital away from my parents and family, and my dog, Suzie. Oh, don’t misunderstand me, I remember the staff doing their best to make it a happy and great day, but it wasn’t the same! My parents were wonderful though, trying not to show how worried they were. My father never missed a day’s visit. He even used to come to see me during his lunch hour, catching the train to the nearby station and walking up to the hospital just to make sure his “baby” was being looked after.

Six weeks had now passed, and then one day, when my school teacher, Miss Fletcher, came to visit, I moved one of my right toes! She had been asking me all these questions, and I said “I can’t move” (demonstrating that I couldn’t lift my legs). Then, low and behold, I wriggled my toe! Great excitement was instant and the nurse was called. Another demonstration was done! Wow, I had some movement; finally, tiny, but so significant. From what I recall, progress was happening, but slow at first. As the days passed, I tried desperately to wriggle a few more toes. Forcing and willing myself, more toe movement and then very slight movement came in the right leg. Movement in the left toes and leg then began to happen as the days passed. This was encouraging for not only me and my family, but the nursing staff was excited, too. Following that simple movement, I gradually was able to stand for a few moments. But I had no balance; exactly like a baby learning to balance and walk for the first time. I still had lack of temperature sensation, and only the faint feeling of touch to my legs and feet. But this meant now I would start physiotherapy, which would hopefully help towards some sort of recovery and home. Now I longed to go home, to be with my parents, sister and my dog, whom I thought may have forgotten me by now!

Physiotheraphy commenced at the hospital, and after becoming mobile enough to stand unaided and to take a few simple steps, I was allowed to go home. I still had the bladder and bowel problems, but that was nothing we couldn’t handle and worry about at home. Let me out of here! Naturally, I had to attend the hospital for regular physiotheraphy. I still had numbness in my legs. I was beginning to get some more feeling back; I could tell the difference between sharp and soft pin pricks, also to touch and some sort of difference between hot and cold. Even to this day, this sensation is not normal and my feet are super sensitive. Weakness of bladder and bowel remains.

My recovery, once I got home, was good. My parents had an old pram, and I used to be taken out in the back yard by my dad. I would use the pram for support and slowly walked up and back the pathway. Strange, this pathway led to the outside toilet we had in those days! Up and back every day until, eventually, I could let go and walk by myself. Progress was so good, that when school commenced in February, 1959, I was able to ride my sister’s two-wheeler bike to school! This was close to three months from the onset of the illness to being able to walk unaided; almost normal, if you like, but I couldn’t run at all. No gold ribbons! Still had a bit of a gait, but what the heck, I was walking around. However, school had its problems. I was in my last year of primary school (year seven here in Australia). The girl’s toilets were so far away and I couldn’t always make it. I remember leaving a puddle under my chair one day in class. Of course, the other children thought this was funny. Not me! I also had to leave school on certain days when the hospital bus would pick me up and take me to physiotheraphy. High school was better, because my parents sent me to a private girl’s school, and the girls and teachers were more understanding. Recovery by now was good. I went to work, married and had two children. I even got my manual driver’s licence.

Strange though, my parents never came forth with any suggestions, nor did any medical person, as how best to handle the bladder and bowel problems. I don’t even know if in those days there were incontinence pads. For several months after I went home, my parents toted me from one doctor to another, to see if there was any cure. But, of course, there wasn’t. I learnt to live with it, with all its inconvenience, frustrations and embarrassment.

Fortunately, since I made a good partial recovery, I can tell if I need to go to the toilet. Straightaway though; no waiting! Being young, too, perhaps worked to my advantage in my recovery. I could control my bladder for a minute or so, which gave me time to make it most times to the toilet. However, my bowel doesn’t work in my favour that way. When the sensation comes, I have to “hightail” it. I have always carried a bucket and loo paper, etc, in the car for emergencies. I used to be able to do “my business” in the back of the car, in the middle of a crowded car park, and no one was the wiser! You learn some tricks and how to cover up when you have lived with it for so long. With my back now, that is not possible.

The biggest achievement came after I was married. We were living in a small country town and I was asked to join the tennis club! I couldn’t. I couldn’t run; how could I play tennis! The ladies said that’s not a problem. As long as I played doubles, they were happy to run all over the place and get the extra exercise! How good was that? So, I got my mum’s old wooden tennis racquet and was away! Over time, I became a good tennis player, played on the net and developed quick arm reflexes. I also played badminton until about 8 years ago, but gave both away, because I found being at the back courts too far from the loo! I took up bike riding to stay active and keep my legs going. This activity I enjoyed. But 12 months ago I had to give that away, too, in case I fell off, because my legs are getting weaker all due to my spine.

There has never been another case, as far as I know, here in Western Australia and up to November 2003. I had never come across anyone who had this “polyneuritis.” Most people don’t have a clue what I am even talking about when they asked me about my illness. In all the 45 years not one of my family doctors looked or queried my illness any further, or suggested I see a neurologist! Also, because I made such a reasonable recovery and knew that there was no cure, I never pursued it further myself. I finally asked to see a neurologist because I was having problems with my arms and my left leg and foot on cold days. They felt like ice. I knew this was from lack of circulation, but I thought there maybe another problem. I have always had the sensory touch syndrome, and the problem with balance. I can trip over my own feet. It’s a wonder with all the falls over the years; I did not break my kneecaps or a leg. I was never able to run, and my walk has always been with a gait, because my left leg was weaker than the right and a bit shorter. I suffer with the nerve twinges or pricks; not constant, or every day, but I do have them.

My walking began to deteriorate very slowly about seven years ago. I was having more backaches, too. So, I started to use a walking stick for support and balance. I also use a pronged walking stick for extra balance. Then about five years ago, I found walking long distances was an effort, so I invested in a manual wheelchair. When I needed to go shopping or anywhere which involved long walking, my husband pushed me in the wheelchair. Two years ago, I was finding the pressure of any walking was putting lots of pressure on my lower back and spine, which is now shaped like an “S.” So, now to help myself, I use the wheelchair full time. I can only stand for a few minutes and then my legs begin to feel weak and I feel pressure on my back. Sleeping is also disturbed because of my spine. Rolling over in bed is difficult and I have to manually roll myself, because my legs are like dead weight. Due to the lack of circulation, I now have a “dead spot” on my left heel. This has a burning sensation when I lie with my heel on the bed. To stop it developing into a pressure sore, I wear a lambskin half boot. It does relieve the pressure, but because the outside is like “suede,” it sticks to the sheet, and I have to manually lift my leg if I am turning over. Satin sheets have been the suggestion, but at this point, we haven’t tried them. Satin pyjamas help.

I have now invested in an electric scooter to give me more independence in and out of home. I am fortunate that I can still do my own personal showering and dressing. I am able to walk up to about 12 steps with the aid of a stick. This means I can get in and out of bed and do personal grooming, etc. Simple manual chores around the home like cooking, sorting laundry, and dusting I do from the wheelchair. We have help with the vacuuming and mopping of the floors. My husband has retired and is a full time carer, doing cooking and what he can to help me in the home and shopping. X-rays of my hip and back show my spine has a bad “S.” My spine is deteriorating and basically has “had the bomb.” It is tilting forward and in time “may” pinch the nerves. I have a problem now with two discs in my neck, which gives me a burning sensation sometimes. This is an indication that a nerve is being pinched by the discs closing. This is all from years of walking with the unusual gait and the jarring from all of the falls. When I stand or walk, I am like the leaning Tower of Pisa! I swim every week, which is about the only physical activity I can do, and I have physio on a regular basis to prolong my little mobility.

Depending on my arms for support all these years, and using the wheelchair has now created problems. I suffer with sore shoulders and my wrists are showing signs of early carpal tunnel syndrome, which affects my sleep because of the numbness. Fortunately, I don’t have this problem during the day! I visited a neurologist for this complaint, and it was during this consultation he examined me further and diagnosed Transverse Myelitis. How grateful for small mercies!

After being diagnosed with Transverse Myelitis (T5), I accepted this new name for my illness and that there now was some easy description and explanation, but no cure. I didn’t pursue it any further for about three weeks, until one day I got on the internet and typed in “transverse myelitis.” Bingo! There was The Transverse Myelitis Association website and in black and white the description of the illness, the symptoms, the lot! All of these relevant to me! I couldn’t believe it and to find that I am now not totally alone with this illness. It was a bit emotional too after 45 years. I am now 56 years old. As yet, I do not take any painkillers, I have never suffered with pain as an ongoing side affect; only infrequent pain in my left hip for a period last year, and backache on and off over the years. The only medication I take at this point is Celebrex for inflammation of the joints. I use probanthene for my bladder and I take that on a need basis. When home I don’t take them, but if away or out for the day, I take them to reduce the need to constantly go to the toilet. Ask me where any of the public toilets are in town, and I can tell you! They work well but the side effect leaves you with a dry mouth, (so I carry a bottle of water and sip) and if used regularly, then you end up with constipation! I guess we can’t have it both ways!

Now it is a matter of keeping mobile for as long as possible. Taking each day at a time is all we can do. It has been great to make contact with The Transverse Myelitis Association and finally finding other people who have my illness. We all have such different stories and yet have the same illness. All TM sufferers’ stories have touched me. Lots of you have problems worse than me.

On a final note, I have received some gold ribbons, but not from running! I took up pastel painting for a hobby, and have received some prizes and sales, too. My new gold ribbon is my 14 month old grandson, watching him grow, and being with my husband, two daughters and son-in-law, who help me all they can.

I thank Sandy, the President, for encouraging me to write my story. I have made contact with Errol White, who is a sufferer himself here in Australia, Steve Alderton, whose baby son has TM, also in Australia. Hopefully, I will have contact with some of the other members, too, in the future. Have courage and do what you can when you can.