My name is Dyllice Eastwood. I live in Auckland, New Zealand. I have had TM since 5 February 2001. Although I have been in contact by telephone and internet with other TM people, both here in New Zealand and overseas, early this year is the first time I actually met another TM person. Her name is Jennifer, and she lives only 10 minutes away from where I work. We had been in the same hospital and rehab centre, although Jennifer got TM 6 months after me, and we both agreed that if we had been told about another person who was going through the same trauma as ourselves it would have helped us a lot. So we decided that we would like to start a TM support group in New Zealand.

My Tm started very fast. Suddenly on the morning of the 5th I developed a very bad back pain. When I tried to stand up about an hour later, my right leg wouldn't move. The pain in my back got worse all that day, and my left leg started weakening too. I told myself it would be better in the morning, but of course it wasn't. So my husband took me to our doctor, he had to almost carry me into her surgery. Even now, she says she will never forget how I looked when I arrived at her surgery. She immediately arranged for us to go to Auckland Hospital. By this time I was unable to walk. I had an MRI, CAT scan, and lumbar puncture, which showed spinal cord lesion at T8 and T9 consistent with transverse myelitis. The neurologist ordered another MRI the next day because they were unsure of a blood clot at T10.

I was treated with IV Methylprednisolone and a reducing dose of Prednisone for 3 weeks. One of the worst feelings for me was the tight banding across my stomach and severe discomfort of clothes rubbing against my skin. I still suffer from banding, but it is not so severe now or as frequent.

I stayed in hospital for 11 days. I began to walk a bit, at first with a walker. The hospital staff encouraged me to move about as much as possible, and I must say that just getting to the toilet on time was an effort in itself. I feel lucky that the bowel and bladder issues have not lasted, although there are still a few problems there. The walker was replaced with crutches, and from then on I never looked back. They gave me much more mobility. I was then taken by ambulance to Rehab Plus, a rehab centre closer to home, where I was taught to walk up stairs - still with my crutches, to walk in a straight line - that seemed very difficult, and I had pool therapy which I loved very much, and gave me hope that I might be a bit normal again.

Rehab Plus had a great physio regime, and they worked strengthening my legs and torso. I was also allowed to go out for a drive with my husband the first weekend I was there, and allowed to go home for the weekend the following weekend. That was bliss. They discharged me the following Thursday, because my son was getting married on the Saturday, and I was improving. Because I had been in the hospitals for 1 month in total, I hadn't got my "Mother of the Groom" outfit, so my son arranged for the lady making the wedding dress to come to Rehab Plus and make me an outfit too. I said what colour I wanted and the style, and she arrived armed with different materials for me to choose from. The nurses and patients got involved a bit too, adding their say. Looking back, I really must have looked a sight. I was hunched over a bit, wobbling on crutches, and my hair suffered with all the medications I was taking.

However, I really wanted to walk down the aisle (without crutches) behind the bride and groom, and this made me determined to keep up walking as much as possible. Up and down the corridor I walked, and I can remember phoning my husband to say that I had walked 19 steps without any aids at all. Well I did manage to walk down the aisle, clinging onto my husbands arm, but cried my eyes out when we got outside, the effort was more than I realised.

Rehab Plus booked me into another rehab centre, Waipareira Trust, until there was a vacancy at Rehab Plus outpatients. I went there twice a week, where we did pool therapy one day and exercises, stationery cycling etc the other. I was there about 6 weeks. Then back to Rehab Plus. On the first day, my physio asked me the three things that I couldn't do now that I would really like to do. That was easy, walk better, drive the car, and get myself up off the floor without looking like a beached whale!!
So she did leg strengthening by putting weights on my legs and I would lift my legs up and down, and a wobble board for balance, and the parallel bars. By the time I left there, I could walk better - although still today I have to concentrate or else I stagger at right angles, especially if I am carrying anything, I can drive again, but I still can't get off the floor. So two out of three isn't bad.

I still battle fatigue and memory loss, and have a lot of pain, especially my waist and legs. My toes feel like they are turning under, although they aren't.

Through all this, my family have been wonderful, and I know that without their support and encouragement I would never have improved as much as I have. I am so proud of them. Especially my husband, who would spend hours at the hospital because I needed him so much, and my blood pressure was always lower when he was there, because he helped me to relax.

The worst thing was that if I had a pain or problem no one really said anything. If the doctors or nurses had said, "Oh yes, that is a symptom of TM", it would have been all right. But I started to feel they were beginning to think I was making things up. I felt very alone. So, I look forward to the support group and meeting new people, so that they don't feel so isolated.

Kind Regards,
Dyllice Eastwood
dyllice@hotmail.com

My name is Jennifer Murray and on 17th November 2001 my life was changed by TM. The onset was very quick, going from a sore back in the morning to numb legs in the afternoon and finally paralysis from the waist down by 10:00pm.

My TM was diagnosed very quickly. From my first MRI that night I was told it was probably TM (lesions at T10-12) but I was also tested for various other things, and a spinal tap was done. I was started on IV steroids the next morning. Unfortunately the steroids didn't bring much change. After 5 days I could only just wriggle the toes on my left foot so I had to undergo Plasmapheresis. No one could give me any useful information on TM, all I was told was that I would have to wait and see as far as recovery went.4 weeks later I was transferred to Rehab Plus, Pt Chev. I was still in a wheelchair, but I had some movement in my left leg and I could wriggle the big toe on my right foot. I still had no sensation or feeling from my waist down and I was still on a catheter.

I spent 3 months at Rehab as an inpatient. During that time I had to learn how to dress myself, how to self cath and try and regain some of the dignity I felt I had lost - having someone wipe your bottom for you is as about as low as you could go in my book. The hardest work of all was to strengthen the muscles required to walk again. I loved the pool therapy, you could do things in the water that you couldn't do on land. I'll never forget the day my Physio said 'now take a step'. I was so excited! So I stood there with a person on each side holding me up and I went to take a step but nothing happened! Then I realised it was because I didn't know how too. Walking was never something you had to think about. It was something that just happened. I had to ask how to take a step. So they told me what I had to do and I did it! That was 8 weeks from the onset of TM.

By the time I left Rehab I was using a walking frame. I continued with Rehab for another 4 months as an outpatient, going in 3 times a week for physio and occupational therapy. I was using 2 crutches by the time I finished there.

I was also under the Otara Spinal Unit. They tried to transfer me there but no beds available at the time. I see the urologist and consultants as an outpatient. I also received physiotherapy for another 12 months.

I now use 1 crutch around the house and 2 when I go out. I have ongoing bowel and bladder problems, muscles spasms etc.. But hey we make the most of the good days and do what we have to do to get through the bad ones.

One of hardest things through all this was the unknown. No one could answer my questions. Finding the TMA site was wonderful. At long last I found some answers. I also found a friend in Dyllice. Its nice to have someone who knows what you mean when you say things like 'I can't feel anything on outside of my legs but I can feel things on the inside'. If only Rehab had said something about Dyllice been there 6 months earlier with TM and getting in contact with her. To see someone 'walk' through the door who had TM would've given me so much hope.

I look forward to meeting new people through this support group, sharing our experiences and maybe even helping each other with tips that we've learnt along the way to make our lives a little easier.

Kind Regards,

Jennifer Murray
+64 9 834 5019
jennifermur@hotmail.com