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.

My name is Mike Mullally, age 47. I live in Hertfordshire about 20 miles north of London in the UK. I am married to Alice and we have two boys, Kieran age nine and Daniel age six.

I was diagnosed with TM at level T8 on 29th June 1999 and this is my account of living with the condition for the first year.

On 22nd May 1999 I went for a run in the park and noticed that my left knee was out of normal alignment. On 26th May I was again out for a run and it all seemed very difficult but it was not easy to say why. The best description I could muster was that my legs didn't seem to be working properly. On 27th May I had tingling sensation on my lower stomach in the morning and I got pins and needles and some numbness in my left foot in the afternoon. The next day there was numbness from stomach to toes, more severe mid thigh to shin and varying degrees of numbness and tingling in feet. I went to see the Physiotherapist who tended my sporting injuries and he advised that it was not a structural problem. I went to see my GP who proposed some blood tests.
These were completed on June 1st and the results were "all clean" as reported on June 8th.

The next step was to find a neurologist. During that first week of June, the numbness increased in my stomach, upper legs and lower left back. Walking and driving proved difficult and uncomfortable but was possible with care. My energy levels were seriously depleted compared to normal. Then over the next ten days, most of the symptoms eased and it was possible to function normally except I could not run. On June 15th I visited my neurologist who ordered an MRI scan. This was completed on the 18th and I returned on the 29th for the results. At this time the soles of both feet felt as if they had huge lumps.

At the beginning of July I had a cold/dead sensation on the left side of my face and neck. I started to have severe back pain that had a creeping effect, first one area, then another and tingling on my abdomen. This eventually presented itself as a very tight band of cold dead flesh around my mid to lower trunk. By 10th July the pain levels were quite high, I was loosing control of my waste disposal systems and walking was very difficult. I visited my consultant again on July 13th. He arranged further MRI scans above the T8 level for the 14th and organised one of his team to be there to interpret as soon as it was available. They found a lesion about 2 cm across on the right side of the brain.

I was admitted to hospital on the 14th and had numerous tests and a lumber puncture. I was also given steroids intravenously. On the 15th both of my legs felt completely dead. I had absolutely no movement in them and could not stand. All the testing and discussions with medical staff could not identify a trigger for TM. No evidence of recent or current infection was found.

During the next week, very minor incremental movements of my legs became possible and I began physiotherapy. My left side was much weaker and slower to recover than my right. By the 20th I was able to roll onto either side as a result of the physiotherapy exercise. A member of staff on the hospital ward acquired a loan wheelchair for me and I regained a small measure of my independence. Sleep depravation was a serious problem in the hospital and I began to push to be discharged. I was allowed home overnight on the 24th and this was followed up by a visit from the occupational therapy team. Our house was not ideally suited to a wheelchair user as there were many steps to be negotiated both externally and internally. Solutions were found to the more immediate problems and I was discharged on 30th July.

During August I returned to the hospital for physiotherapy two or three times per week. The impact of these sessions was varied and often strange. Sometimes there was a burning lumpy sensation in my knees and feet while at other times my legs felt as if they were floating while being very heavy. Towards the end of the month, there was significant spasm activity from both legs. They were extremely touch sensitive but there was little internal feeling. I started swimming and found that with a float strapped between my thighs, I could attempt a reasonable front crawl. Even the movement of my legs through the water caused them to spasm. I also had some acupuncture treatment that created a pulsing sensation in my left shin. My feet were very prone to severe swelling while sitting in my wheelchair. Regular massage and exercises seemed to be a solution but this was somehow difficult. I was keen to get to the first floor of the house to use the shower. With considerable help from my eldest two sons, I was able to climb the stairs one step at a time on my bottom. We then used an old furniture trolley to get me from the top of the stairs to the bathroom. Getting undressed/dressed and transferring into and out of the shower produced some interesting problems that were gradually resolved. It was noted that my feet returned to normal size after one of these sessions.

I was assessed for a place at a rehabilitation centre and was eventually given a start date of mid October. I bought a set of hand controls for my car, fitted them and began driving again. I had to endure extreme apathy and indifference from those that administer the wheelchair system and was forced to approach some suppliers directly in order to find a suitable chair that would enable me to drive without the help of another person. My own wheelchair finally appeared just before Christmas.

During September my leg movements improved. First, I could lift my left foot and then both knees. While lying face down I found I could lift my right leg behind to 90 degrees. The sensitivity and spasm activity also increased. This had a detrimental effect on my sleep as even the touch of the bed covers caused my legs to jump about. The MRI scans were taken again on the 14th and no new areas of inflammation were discovered. Initial attempts were made to get me upright in a standing frame. These were unsuccessful due to spasm activity but a gradual improvement was obvious.

During early October I had my first experience of aromatherapy, which proved to be very relaxing. The sessions in the standing frame were also improving. I started my treatment at the rehabilitation centre. This was largely a continuation of the physiotherapy activity from the hospital. By the end of the month, I was standing in the frame for 20 minutes and swimming once a week. I spent part of my time in the pool walking while holding on to the side of the pool. I was able to recognise a wet mat under my left foot. My knee and hip joints were very stiff.

In November progress was good. I was in the standing frame for up to 45 minutes and got to the parallel bars for the first time. By the end of the month I was taking tentative steps with a Zimmer frame. My left leg was also moving more easily.

In early December I was using the exercise bike in the gym and had my first attempts at walking up the stairs. I also began using crutches and by Christmas week I was able to get to the cinema and shops without my wheelchair. On Christmas Day I completed my first walk around the block aided by my son.

January and February 2000 saw equally good progress. I moved on to walking sticks and my strength and speed improved. I was discharged from the rehabilitation unit and began to drive a manual transmission car without hand controls. I could even do some gardening. However, at the end of February my lower back was very painful and my body tended to collapse after spending time on my feet or taking a walk. My speed and strength reduced dramatically, most of the feeling that had returned to my legs vanished yet again and my energy levels hit a serious low.

I had a pre-planned appointment with my consultant early in March. He ordered a 20-day course of steroids and another MRI scan. The steroids definitely helped overcome the lack of strength but I had to concentrate much more than before when walking to avoid falling. By the end of the month my speed had returned.

At the beginning of April my bladder refused to vent and I got a urinary tract infection. I was taken to my local Accident and Emergency and they found I also had a serious kidney malfunction. This was expected to recover once I had been catheterised but for five days there was no improvement. An ultrasound scan showed no physical damage to my kidneys and about the same time they started to recover. I was discharged from the hospital on the 13th, very weak and tired but pleased. I started my walking routine again during the last week of the month.

Early in May I had another meeting with my consultant. The recent MRI scan of my back showed a 'reduced area of difference' that he interpreted as scar tissue. My brain had not been scanned. My strength and speed improved and I began swimming again. Leg co-ordination was much improved in the pool and I also had my first successful attempt at riding my bike. I did small amounts of gardening daily when the weather permitted.

At the beginning of June my lower back pain started again and I had similar collapsing sensations to those experienced in February. I also found it extremely difficult to bend forward from a standing position. My consultant has put this down as a temporary setback and not issued any steroids. I have started physiotherapy at the rehabilitation centre again. I have urology and physiology clinic appointments planned to help better manage the waste disposal systems later this month.

Mike Mullally
88 Langley Road
Watford Hertfordshire WD1 3PJ
mikemullally[AT SIGN]
langleyroad.freeserve.co.uk