This is just a short excerpt from Gil’s memoir, chronicling how he and wife Betty adjusted to new expectations in the light of his diagnosis. After a career in the Air Force, Gil had a successful career as an engineering lecturer in traffic control systems. Once their three sons were grown Betty often used to join Gil on his lecturing assignments abroad. In around 1990, Gil started to notice a slight limp in his left leg.

“At this time I was still leading a pretty active life, partly with work but also in my spare time. We always had enjoyed walking, and used to go for long walks of 12 – 15 miles. I was keen on cycling as well and when I could I always cycled to work. Bit of a fair weather cyclist though, I couldn’t see any point in arriving at work wet through, unless, of course, Betty wanted the car!

“We also had a large garden to look after, which took a lot of time and physical effort, can’t think of how many times we reshaped the garden but it was fun and we enjoyed the results.

From this you can imagine that Betty and I had a pretty good life style and were able to do most things we wanted. Work got in the way of enabling us to do all of the things we wanted.

However, things were about to change, things that were going to have quite a dramatic effect on the rest of our lives. I first noticed that I was having a bit of a problem with my left foot. It was as though I had started to wear a flipper just on that foot, in that as I walked my left foot started to flap down as I moved it forward. I never paid much attention to it until one day one of my colleagues said to me ‘Was that you clumping along the corridor.’ I replied ‘What me, you know I always creep everywhere.’ There was no carpet along the corridors. This now worried me because I thought that if I was a bit late the boss would hear me coming and so I couldn’t sneak in quietly! I thought it was something that would go away and so never mentioned it to Betty at first.

I went to the doctor and was referred for tests, but still travelling for work. One of the best-ever trips was Hong Kong where Betty and I stayed for two months. One of the highlights was going to the Peak and see the lights of Hong Kong coming on, it would be difficult to describe it any other way than ‘magic’.

The first diagnosis was that I had something called Transverse Myelitis. At this point we were relieved as we had a name for the problem, and it wasn’t Multiple Sclerosis (MS) or MND - both had been ruled out by tests at this point.

Changing Mobility

I got to a point where I was having a bit of a problem driving a car with a manual gearbox. We changed to a lovely automatic Toyota, probably the best car that we have ever had. Betty was a bit nervous about driving an automatic but she soon got used to it and would never go back to a manual car now. Another good thing was that I told my boss I could only drive automatic cars and, as a result of that, when I had a hire car for travelling for work I always got top of the range and big cars. Were my colleagues jealous!

About this time I had to give up cycling as my balance was beginning to go a bit and if I stopped and put my leg down on the ground I sometimes felt unbalanced. That was a serious blow as I really enjoyed cycling and had not long ago treated myself to a new bike. Because of the problems with balance and walking, I had to see my GP again and we decided that it might be worth having some physiotherapy.

My first sessions were carried out before I had to use a walking stick regularly. On my first session I was watched whilst I went through various walking activities. The comment I got was, ‘Oh! I think we will have to teach you to walk properly.’ It was said in good humour. I always felt that the physiotherapy did me a lot of good and built up my confidence.

It was during these sessions that I got my walking stick. I thought I might as well have an NHS one. They had a limited supply so the one they initially gave me was too long, and I’m 6 feet tall. I thought it was a shepherd’s crook.  They cut it down to size for me.

My colleagues at work were surprised the first time I went into the office with a stick. ‘What’s this,’ they said ‘trying to get light duties!’ I laughed and replied ‘I brought it in so that I can nudge you lot if you fall asleep at your desk.

I still had more travelling to do with my work. On one trip to Liverpool, I went by train. The hotel was too close to the station to warrant a taxi but with my poor balance, walking problem and difficulty getting up steps without something to hang on to; it took quite a while to get there. Mind you, for anybody who was watching, it was probably quite comical as each time I got to a kerb or step I would put my bag down, hold onto something, step down or up, pick up my bag and carry on walking.

Leisure

By 1993 I’d given up cycling and walking, tried golf and had to give that up, and had to use a wheelchair on occasions. I couldn’t do much in the garden either. Things were going a bit downhill. I needed to find something to do before I became too depressed and started to find excuses not to do anything outdoors. We found the answer at Dorchester Indoor Bowls Club. We’d started to play indoor bowls before moving to Dorset and still had all the equipment. We tried it out and enjoyed it so we decided to join the club. At the beginning I was managing with a special stick to gain my balance but I was slow getting up and down the rinks. To overcome this I started using a specially made wheelchair (buggy). I had found something, which gave me a new lease of life just when I needed it and also we made a lot of new friends. I’m not a great believer but maybe somebody was watching over us and helped when we were beginning to need it. We still play bowls and still enjoy it as much. We play in leagues, friendly matches and competitions, though we may cut out the competitions next year as they tend to be played at inconvenient times, like Sunday morning! That’s a day for a lie in! I once got to play in the qualifiers for the Nationals for wheelchair bowlers. I lost by 1 point.

The Right Diagnosis

In April 1999, after a week of tests I was told I had a condition known as Primary Lateral Sclerosis (PLS). That meant nothing to me but I now had a name for my condition. I was told it was a rare, with slow progression, that there was no effective treatment but that some drugs might alleviate some symptoms. I wasn’t told that PLS was a rare form of MND.

As my speech deteriorated, eventually I got a Lightwriter from the NHS, via my speech therapist. It was a device that I could type into and people could read as I typed, if they had the patience! It would also play back what I had typed, in an American voice. I could also choose the voice. It had the facility to store pre-typed sentences, which was handy as all I needed to do was select the memory location and then play it back.

Very few people knew of these and, needless to say, were much impressed. It certainly helped to make life easier as talking was becoming quite an effort and would make me tired. Regardless of that I would talk as much as I could, and still do. The problem is now quite frustrating as sometimes Betty, and other people, can understand me on some days and have no idea what I’m saying on others. I think to myself ‘what’s the matter with these people, I can hear what I’m saying so why can’t they?’