It was in the autumn of 2000. I was working as a headteacher of a primary school in the county. And I was finding it more and more difficult to put the heavy box files I had on the shelves in my office. I put it down to kind of getting weaker in the menopause I suppose. But also at the same time I developed a shake. In the mornings my hands would shake and really throughout the day. And also I was getting quite a few coughing and choking fits. And in my mind I put that down to an allergy to dairy products. So I was trying to be realistic and think what it could be. But of course nothing serious entered my mind at that time.

I was also getting a bit fed up with being a head teacher. I’d been it for ten years and I loved the job, I loved the children and the adults, but I was getting fed up with the government targets. So with my husband being fifteen years older than me, we decided I’d take early retirement, which I did in 2001. And I started working part-time supporting other schools. But by then my symptoms were getting worse. I was getting a lot of cramp at night. I had quite a lot of pain in my neck and shoulders. I was losing weight, and my arms were continuing to get weaker. I went to see my GP and he put it down to stress. This was understandable because a close family member had developed a mental illness at the time and there was a lot of stress in our family. But as the time went on his symptoms were being well managed, but my symptoms were increasing.

Well when I was, when I was working my dad said, ‘What’s wrong with your hands?’ because I was struggling to do up my shoelaces. So that was the first symptom of it, what was it, was it? Then I was getting the shakes like, like holding stuff with the drill and like and I was finding it harder to pick things up, like bricks and that, and that was, that was the first symptoms like. And then I was waiting a year then to get seen. So I went and seen my doctor and then the consultant like, took ages to try and get me a bed in hospital. So really it just took a year like from there on.

It’s difficult to know exactly what was wrong at first. I think the first symptom that I felt was that I would wake up in the morning and the muscles, mainly of my left arm, which was odd again, because that wasn’t where my first real symptoms occurred. But my muscles of my left arm would feel as though they were of cement, hardened. And it would take me a minute or two to start moving the arm. And it didn’t happen every day, it happened occasionally, and I sort of shrugged it off as old age or something. And then in the summer, looking back on it now, I didn’t know at the time, I was away on holiday, staying in Uppsala with my wife’s family. And I was completely relaxed, absolutely relaxed, and yet I felt as though I had sort of butterflies in my tummy all the time, which I presume was probably the fasciculation that you get, I don’t know what it is, the sort of muscular shivering that you get. And I again didn’t think any more of it. I just thought it was rather odd that I was feeling nervous, because I didn’t feel nervous.

The first time I went to the doctor with any related symptom was in the October of 2001, and I went because I was getting cramps. Again cramps as I knew were something I’d experienced in childhood, so it wasn’t unusual. But I seemed to be getting cramps in unusual muscles. Normally you get it in your toes or in your calf muscles when you’re tired. But I was getting it all over the place. Not regularly, not at any kind of point that I could diagnose, it wasn’t after exercise or anything like that. And of course the doctors laugh this off, because there are about a hundred causes of cramp, and they basically say, ‘Come back if you get anything worse.

Then in the November, a month later, I started finding it difficult to operate the remote control that opens the doors of the car. And that was quite a stiff little button to press. And I obviously had lost some strength between the fingers and the thumb in my right hand, because when I was trying to press this button it didn’t always work. After two or three weeks I sort of got slightly worried that I was losing strength in my hands. So I went to the doctor’s just on the off chance. And the doctor I suspect knew a lot more than he said at the time. And he said, oh, that he would send me to the [city hospital], because it might be a trapped nerve. I think he thought it wasn’t, looking back at his expression, and I know my wife thought it wasn’t either.

It started off really – I was in front of the telly pract-, you know, lifting some weights and I found that oddly for a right-handed person I could lift more weight with my left hand than I could with my right. My right arm was weaker than my left, which seemed strange. But I was still able to lift weights, just not as much or as often. And it seemed weird. It went from then, I went to see the doctor. They were unaware of, of what it was from the Gps. It didn’t get any better. In fact it got slightly worse. It then reached a stage where I couldn’t, couldn’t lift my arm straight up in front of me, you know – put my arm out in front of me and then raise it from by my side, straight out forward, as a straight arm. I couldn’t lift it above my head like that. It, it all seemed really quite strange. It was, it was more restrictive movement. I got referred by my GP to see a – now, I always get confused with this – a specialist in muscular and bony issues, whatever that is. Anyway, he couldn’t find anything, carried out several tests, couldn’t find anything wrong with me. Brought me back in for further tests and said as far as he was concerned he thought I’d, I’d got some kind of virus. That was the initial thought. I had a, a virus much like a flu that affects the nervous system, and it’ll right itself in about six months. But before going too far down that route he’d just like me to see a, a neurosurgeon. No alarm bells rang at the time. It didn’t seem – it was just odd. You know, there was no pain involved in it. Had I have suffered pain, I would probably have felt more worried and more concerned. But because there was no pain I, it just seemed odd. I couldn’t get to see a neurosurgeon for months on end.

I noticed in about June last, last year that I was walking a bit strangely, but I couldn’t put my finger on it, I couldn’t understand what I was doing. And it was as though I’d forgotten how to walk properly. And I didn’t tell anybody, I just kept trying to make my foot go the right way. And then I went to a flower show with my daughter, and the car park was quite a way from the flowers. And we were walking and she said, ‘You’re walking very strangely, mother. And I said, ‘I know. I feel as though I’ve forgotten how to walk. And she was laughing and I was laughing. And that was it really. And that was in the July. And then in the August it was my husband’s big birthday and we’d got a big party at my daughter’s house. And I was all right, but I was stooping. And I found if I stooped I could walk more easily, sort of propelling myself forward. And a friend said to me after a while, ‘What’s the matter with you? You’re stooping. I said, ‘I know. I feel I can walk better if I stoop. And she said, ‘You need to go and see an osteopath. Promise me you’ll go. So I said, ‘Oh, all right then.

Well with hindsight you can look back about a year and say, oh well he used to go a bit unsteady on his feet, I think he fell over once. His, his walking changed so that he was sort of flat-footed like a robot – instead of doing heel/toe he was shuffling, shuffling along, but then he was old. I mean it’s very difficult to distinguish between what is getting old and what’s unusual. I suppose he got a bit clumsy, because his fingers didnt hold cups, and things but again you, you didnt really notice that. And he seemed to get a bit more tight-lipped in the way he talked but because he was a Yorkshire-man that’s not unusual either.

Well, I’ll talk about retrospectively in a moment, but initially the first signs that anything was not right was I’d been on holiday in the July/August and I came home, and I was very, very fit, so I would go running quite a lot. And I went running – now, how many years ago is that now? December – that’s 2005, 2003 – about 2001, about August 2001. I went running and I was running along the road and my left leg, to put it crudely, wouldn’t do what I wanted it to do. It just seemed to have a mind of its own and I couldn’t control it properly. So I stopped running and started walking. I walked for a few hundred metres, and then started running again and it seemed okay. But I had to repeatedly do this, stop and walk, and then run. And over the next few months when I went running the problem got worse. Now, I did trip up a few times but I didn’t attribute that to anything. I just thought that was clumsiness. I remember once tripping up a kerb and landing in a pile of horse’s pooh [laughs], and thinking, ‘Oh, that’s a bit annoying. And looking back on it, it was obviously because I had the foot drop and I was tripping over. Now the problem with my leg got so bad that I actually couldn’t run any longer, and then I had to take up power walking. And then I really couldn’t go out at all. So I ended up going to the gym and I would power walk in the gym on the treadmill, where at least I could control what I was doing. And then this, this went on for, well, it was well over a year. And about the following October, so like fifteen months later, I decided that it was such a problem that we would go down to my stepchildren down in [town] and they would go out for walk and I’d say, ‘Well, I’m sorry I can’t go for a walk because I can’t walk very far. And they’d sort of look at me as if I was weird and, ‘Why can’t you?’ ‘Well, I’ve got this funny leg. And I think people thought I was a bit, sort of, of a hypochondriac.

In the autumn 2005, I decided to find out about flying in the aeroplane, learning to fly in the aeroplane. My aim was to learn towards a pilot license. In January 2005, I passed a very stringent medical in order to start the course. And the course because of the weather, the course instead of being every week, was on average once a fortnight. I finished the course. I was assessed in order to take the second course and I was told I couldn’t do that. But I told the assessor I was leaving for February and March because of the weather but that was not my reason [inaudible]. I had what could be described as a floppy leg. It was already floppy, no pain and I became suspicious. I went to see my GP and asked, ‘MS?’ She said, ‘No, you’re too old for that, too old for MS. So I said, ‘What about lower motor neurone?’ And she said, ‘No. But she was extremely quick in referring me to a neurologist and on the 16th March I walked out of the outpatients with a walking frame, just as a precaution, I did not need it, but with the diagnosis of motor neurone disease.

OK. It was in probably June 2004. Mike was coming home from work and, and asking whether I’d noticed that he was slurring his speech at all. And I hadn’t, I didn’t, didn’t see anything. And he questioned a couple of guys at work and they said the same thing. And then July, the following month, in July we went on holiday and we went down to have a drink after, after dinner. And I noticed that when we were talking to some people that we’d met, one of the guys was saying, was, couldn’t understand what Mike was saying. And that was really the first time I think that I’d really thought that maybe there was something wrong. But we didn’t really think anything about it, you know, we just – I thought maybe he was tired or, or whatever. In the September, I went away to work and Mike went over to a conference in Manchester. And on the, when I get, got back from working, Mike picked me up at the airport and he said that he’d had a terrible day. He said that he’d been on the stand at the conference and somebody had accused him of being drunk. So that was the, that was the, the, the trigger, really, to say, ‘Right, there is something here. Because this was at 9 oclock in the morning and there’s no way that he would be drunk at 9 oclock in the morning.

The first symptoms that I was aware of and Teresa spoke to me about and perhaps may have confused things a little bit was that she thought she had sprained her wrist. And the sprain seemed to continue for an inordinate period of time and she had some weakening. It became obvious that something was wrong in February of 2005 while she was out at her daughter’s birthday. Other people there whispered to her daughter that, ‘Has mum had one or two too many?’ But in truth she actually hadn’t had a drink at all. She was slightly slurring her speech and it came and went. The time between episodes reduced and the duration of the episodes increased.

As we started to look at what was happening we became aware from people a little bit further out from the immediate family. People who spoke to Teresa on the telephone had noticed that she had been slurry once or twice and thought [chuckle] maybe she’s taken a drink during the day and what’s wrong with that. So clearly out of loyalty didn’t say anything. ‘In February we realised something wasn’t quite right and the family made, because Teresa was a very strong and very independent person, didn’t want to bother people particularly doctors who she held in high regard.

We made an appointment for her and dragged her kicking and screaming over there. And started to relate to the GP the observations we had made to that point i.e. the sprained wrist, the slurring of speech, that the incidence’s of slurring were getting more and more frequent, lasting longer. And minor changes in Teresa’s persona. She seemed to be agitated, clearly she was feeling some frustration. She was a very capable communicator. She’s an Irish girl, she knew how to talk. It was obviously having some difficulties although perhaps she herself wasn’t really too sure exactly what those difficulties were. We were concerned because obviously we looked at what we thought were the likely causes at that time thinking, ‘Has she had a minor stroke perhaps?’ Or you know horror ‘Could there be something neurological, tumour anything of that nature?’ And we didn’t have to work very hard with the GP before she actually came in line with the thinking and shared our concern and referred her to a neurologist.

I first noticed symptoms in February 2005. I was actually partaking in a fit-ball class rather like pilates, in that it strengthens the core muscles. For years I had been suffering with muscle aches in neck and arms, mainly (I thought) due to my work. I had been part of my husband’s garden design business and carried loads far too heavy for me and suffered tennis elbow. Because of all this I had frequent treatments from a sports therapist who suggested that the class would improve my neck mobility. It didn’t really help; I found the exercises very difficult and would strain my neck to lift it off the ball. On one occasion, the last, I felt strange in my neck and jaw; it was slightly locked. When I went to speak, the words wouldn’t come out right – very slow and slurred. It was an enormous effort. This symptom worried me; it was certainly not just tiredness and I feared I had damaged a nerve in my neck.

By mid March 2005 speaking was an effort. I had to compensate all the time. Actually I was not aware that I was doing it – the brain clearly accommodated the disability; I realized this some while later. My slurred speech gave the impression I was drunk, and in fact my boss was the first to comment, when he rang into the office one day and I answered with the usual company name (with two ells in the word). He said, Sue, have you been on the bottle I was worried but tried to laugh it off by saying something had gone awry.

I went to my GP and she noticed immediately something was wrong. She guessed it to be neurological and possibly a stroke. I couldn’t see that being a likely cause, since nothing in my health would back up that theory. I was recommended to a neurological consultant, but had to wait 3 months. At this time, my mouth was very sore on one side only. Eating was starting to be arduous; I noticed when I was tired, my tongue didn’t have the mobility it should.

Well in October ’05 Bill went to his GP with two things, one turned out to be a UTI, urinary tract infection, and the other was this slight cough that he had, oh when he was eating, it was just, not even an irritating thing but it was always there when he ate food. So eventually the GP, you know, did some lung function tests. They weren’t very brilliant. In the, in the meantime, in the interval at the end of February ’06 and at the beginning of March, which is our wedding anniversary, we went to New York. Our son and his wife live there. And it was of course very cold at that time of year. We did a lot of walking around, a lot of art, a lot of museums, opera. In the opera, Bill kept falling asleep, walking around, going up three flights of stairs to our son’s flat, really he was slow. And I noticed when he was resting on the bed this ripple effect of the muscles in his legs like ripples on a, on a pond and I said, ‘God, you know, can you feel that?’ Because he’s not totally aware about these sort of things and he couldn’t feel it and when he looked of course he saw it, and I began to be quite worried because of the falling asleep, there were headaches, things like this.