Motor Neurone Disease (MND) is a progressive neurodegenerative disease that attacks the upper and lower motor neurones. Neurones are specialised cells which transmit electrical nerve impulses and so carry information from one part of the body to another. Degeneration of the motor neurones leads to weakness and wasting of muscles, causing various combinations of increasing loss of mobility in the limbs, and difficulties with speech, swallowing and breathing. Not everyone living with MND experiences all these symptoms - for example, it is possible to have speech that is clear and can be understood throughout the illness.
There are different forms of MND; Amyotrophic lateral sclerosis (ALS), Progressive bulbar palsy (PBP), Progressive muscular atrophy (PMA), Primary lateral sclerosis (PLS), and these can affect people in different ways. There can be a great deal of overlap between all of these, so, whilst it is useful to separate the various forms in which the disease presents, in practice it is not always possible to be so specific. This is particularly true as the disease progresses.
The first signs of MND vary from person to person. Some people we talked to first noticed weakness or stiffness in their legs or feet, while others found their arms or hands were affected. These symptoms are typical of the most common form of MND, amyotrophic lateral sclerosis (ALS). For some people the first sign anything was wrong was weakness in the muscles around their throat and mouth, leading to problems with speaking or swallowing (known as bulbar onset MND). A few people noticed breathing problems early on. Occasionally people developed symptoms in different parts of the body at the same time, and a few also experienced mood swings or emotional changes ('emotional lability'). Up to half of those diagnosed experience changes to thinking and behaviour (known as cognitive change), but this is usually mild. A small number of these may develop a type of dementia called frontotemporal dementia (FTD), see our section on 'Thinking and behaviour' for more details.
Sometimes after diagnosis people looked back and realised they had other symptoms too which at the time they had not really noticed or put down to some other cause. See our resources page for links to more information about symptoms and types of MND.
Symptoms in arms and hands
Some people had first noticed weakness or stiffness in their arms or hands. Sometimes this was accompanied by aching or cramps. (MND is generally not a painful condition, but muscle stiffness can be uncomfortable at times). One man who was later diagnosed with progressive muscular atrophy (PMA) had 'twinges' in his shoulder after playing badminton and his physio noticed he had some muscle loss. (PMA is one form of MND - see footnote below about less common forms of MND). Looking back, another man had felt 'pins and needles' in his shoulder before any other symptoms appeared, although it was leg weakness which prompted him to go to the doctor.
Fine hand movements such as turning a key or picking up small objects were difficult for some people. At first people were unsure what was happening and some put their symptoms down to being clumsy or feeling stressed.
At work she began finding it hard to lift heavy files onto a shelf. Her hands used to shake, and...
At work she began finding it hard to lift heavy files onto a shelf. Her hands used to shake, and...
Age at interview: 59
Sex: Female
Age at diagnosis: 56
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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.
He found he was struggling to do up shoelaces and his hands started shaking when holding a drill...
He found he was struggling to do up shoelaces and his hands started shaking when holding a drill...
Age at interview: 24
Sex: Male
Age at diagnosis: 23
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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.
The first thing she noticed was difficulty pegging clothes on the line.
The first thing she noticed was difficulty pegging clothes on the line.
Age at interview: 70
Sex: Female
Age at diagnosis: 62
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I was diagnosed in '95. I had it a long, long time before that and I knew that there was something wrong about the middle of '92 and in as much that I couldn't bend my fingers to peg clothes on the line and also the movement of the line made me want to fall over. And so that was the start that I realised something was wrong.
Some people could feel a flickering in the muscles they could not control (called 'fasciculations').
His arm felt stiff when he woke every morning, and he noticed fasciculations and cramps. His hand...
His arm felt stiff when he woke every morning, and he noticed fasciculations and cramps. His hand...
Age at interview: 60
Sex: Male
Age at diagnosis: 56
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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.
He noticed his right arm was weaker than his left arm when lifting weights one day. Gradually he...
He noticed his right arm was weaker than his left arm when lifting weights one day. Gradually he...
Age at interview: 40
Sex: Male
Age at diagnosis: 39
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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 GP's. 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.
Symptoms in the legs and feet
Several people first noticed problems with their legs or feet. They said their legs felt strangely 'weak', 'floppy' or 'numb', or 'stiff', 'aching' or 'cramping'. Walking, exercising or climbing stairs became increasingly hard, and often people started to trip or fall. Again, they could not work out what was happening and some put it down to being clumsy or unfit, feeling stressed, getting older or having strained a muscle.
When she first noticed something was wrong it felt as if she had 'forgotten how to walk'.
When she first noticed something was wrong it felt as if she had 'forgotten how to walk'.
Age at interview: 66
Sex: Female
Age at diagnosis: 65
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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.'
Her husband thought the aching in his legs was because he wasn't used to doing physical work. She...
Her husband thought the aching in his legs was because he wasn't used to doing physical work. She...
Age at interview: 59
Sex: Female
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Jack retired about three years ago. And I should think about six months into the retirement he started having pains above his knees and he was very uncomfortable. He did go out for one or two days with my son [helping to fit bathrooms] and it was physical labour and my husband put it all down to the fact of physical labour. But the walking then started to get very unsteady. He then put this down to the fact of the hernia. He needed this hernia operation, he said. And he was in a lot of pain with it so he started to walk with a stick.
We went to Ireland last April and while we were in Ireland I noticed many things. I noticed that he would forget where we were going. And one day he went right past my mother's house. And he would laugh at anything. It was very strange. Another day we were out and we were going to a garden centre and he had forgotten where the garden centre was, even though we had been there many times before. So this really started getting me worried. And I thought actually he was a brain tumour or he was Alzheimer's. I really thought that. And then there was this weight loss. He'd lost about two stone. So Jack again, being Jack, just kept putting it all down to the fact that he was doing physical work with the weight loss, and that the walking was due to the pain from his hernia.
But as I said, there was something I wasn't quite happy about. So we go to see our doctor, our GP, and the GP was convinced that there was something else wrong with Jack but Jack wouldn't have it. 'Just wait until I have my hernia operation and I will be fine.' He had the hernia operation and he wasn't fine. And the walking got worse and worse. So we go back to our GP, and it was I think a Friday we saw him, and by the Friday afternoon Jack is in the hospital having tests.
Looking back her father had several symptoms before they noticed something was wrong. It was hard...
Looking back her father had several symptoms before they noticed something was wrong. It was hard...
Age at interview: 49
Sex: Female
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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 didn't hold cups, and things but again you, you didn't 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.
Some people developed 'foot drop', where one foot drags or drops and gets in the way of walking. This could be especially noticeable for people who enjoyed sports or fitness training, including one woman with PMA.
One day when out running she noticed she couldn't control her left leg. She began tripping over a...
One day when out running she noticed she couldn't control her left leg. She began tripping over a...
Age at interview: 54
Sex: Female
Age at diagnosis: 52
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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.
He first thought something was wrong when he noticed muscle twitching when playing golf. One time...
He first thought something was wrong when he noticed muscle twitching when playing golf. One time...
Age at interview: 73
Sex: Male
Age at diagnosis: 68
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When I first knew something was wrong, I was a golfer, and I started to get, my muscles in my legs started to twitch, as they do normally now. When I'm laying in bed my legs are doing this, you know, where the nerves are jumping about. Anyway, I went to the doctor's. And he said, 'I don't like that. I'll send you to see a specialist', which is what I did. But I had to wait about six weeks or eight weeks. But the first time it actually affected me was in a competition for golf called the Turkey Trot, just before Christmas. And we all presented ourselves and had a game or went to have a game. I got round to the sixth hole. I took a swipe at it and I just fell over. And I thought, 'Well, I shouldn't have done that' because I've never missed a bloody golf ball in my life, you know. So I didn't play any more, I just came home. Well, I went back to the clubhouse. And they said, 'What's the matter?' I said, 'Well, I don't know.' I said, 'I feel rotten.' I said, 'And my legs are giving me some stick.' Anyway, so that was it. And I went to the doctor's. And then, well, about six weeks afterwards that was when I got the interview with him. And so that was when he told me' But that was the first time I actually said, you know, 'What on earth's wrong with my legs and my hips?'
She took up flying lessons but had to give up when she noticed her leg was becoming floppy.
She took up flying lessons but had to give up when she noticed her leg was becoming floppy.
Age at interview: 74
Sex: Female
Age at diagnosis: 72
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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.
One woman described rapid muscle contractions in her stomach and legs, almost like 'having butterflies'. These rippling effects under the skin are known as fasciculations. People with a diagnosis of primary lateral sclerosis or PLS sometimes experience muscle contractions, known as 'clonus'. See footnote below on less common types of diagnosis.
She had foot drop and aching leg muscles at first. Later, she began having balance problems and...
She had foot drop and aching leg muscles at first. Later, she began having balance problems and...
Age at interview: 53
Sex: Female
Age at diagnosis: 51
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Yeah. Yeah, well the foot was the first symptom. The balance, do you want to know when - the balance didn't click in, as I say, for six months-ish. That started to go. I think it's because the muscles going across are weakening. So you've like nothing saving you at the sides. It's hard to know, isn't it? You think it's your ear sort of thing, but it's not, it's the muscles, you're just not as stable. So the balance was, was starting to go, but that's not for six months.
You talked about the aching a bit.
Oh yeah, well, yes, that lasted a short while, that aching business lasted just a sort of short while, the aching. It lasted six months after the start but it went on for maybe two months, and then it seemed to go away. It was an ache. All the aches, it was all aching at the top, and at the bottom. Mostly at the top. So I used to spray it with, you know, this Ralgex stuff, as if this was really going to make much difference really, but it was aching. It was aching because the legs were feeling, were tight. And it was more a spasticity, what you call a spasticity thing, which actually I've not had that much of. So they were tight.
But the other symptom I - oh the other symptom I had, that's right - and this happened quite early on - it would feel as if you were incredibly nervous. It would feel like you'd got a bad case of butterflies in the stomach. And it would feel exactly like that. You know, exactly like you were very, very nervous about something, worried. Because your body would go brr brr [shivering noise] - like that, buzz. Buzz with a, almost, it'd almost shake, it would go, you could feel it going bzzz, bzzz, inside, all over. And, and the legs would actually move, you know, they'd go, sort of move a little bit as well. Or, if you'd got your foot in a certain place on the floor - and that still happens now, again not so much - as with the accelerator, or the brake, it would go pop-pop-pop-pop-pop-pop-pop, my whole leg would move. Your foot would remain on the accelerator - so you could say you were still in control of the car - it would remain on the brake, but the rest of it was in absolute movement. Going brrr, nineteen to the dozen.
Symptoms with speech, swallowing and breathing
Some people we interviewed noticed their first symptoms around their throat or mouth. This is known as 'bulbar onset' MND and affects around 25% of people with MND (MND Association 2017). (Some people with PLS also have bulbar symptoms first - see footnote on less common types of diagnosis below).
Many people in this group experienced slurred speech; some noticed it themselves before anyone else did, while in some cases other family members first spotted something was wrong. Other people often thought that the person was drunk.
He was aware his speech was becoming slurred before anyone else noticed, until one day at work...
He was aware his speech was becoming slurred before anyone else noticed, until one day at work...
Age at interview: 54
Sex: Male
Age at diagnosis: 52
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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 o'clock in the morning and there's no way that he would be drunk at 9 o'clock in the morning.
When his wife started to slur her speech people thought she'd had too much to drink. He noticed...
When his wife started to slur her speech people thought she'd had too much to drink. He noticed...
Age at interview: 59
Sex: Male
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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.
People who experienced speech problems often wondered if they had had a stroke, or some sort of brain tumour, or a damaged nerve. Most found their symptoms crept up on them gradually, but one woman described sudden onset speech problems after she had been exercising. Again, her boss thought she had been drinking.
She went to a fit-ball class to help with aching in her neck and arms, and afterwards found she...
She went to a fit-ball class to help with aching in her neck and arms, and afterwards found she...
Age at interview: 63
Sex: Female
Age at diagnosis: 62
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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 ell's 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.
A few people also had difficulties coughing or breathing, or had choking fits. One woman said, “I had a weird thing where I woke and I couldn't breathe in or out… and that lasted about twenty minutes and made the most ghastly noise.” Shallow breathing can result in tiredness even if the person has not noticed being short of breath.
Her husband went to the GP about a slight cough when he was eating. Within a few months he was...
Her husband went to the GP about a slight cough when he was eating. Within a few months he was...
Age at interview: 62
Sex: Female
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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.
A man whose brother had died of MND did not realise at first his coughing fits might be connected, as his brother's symptoms had been so different.
He had coughing fits which became so bad he started to eat lunch alone in case it made him choke. They did not realise that sometimes MND can be inherited. [Ken is unable to speak].
He had coughing fits which became so bad he started to eat lunch alone in case it made him choke. They did not realise that sometimes MND can be inherited. [Ken is unable to speak].
Age at interview: 59
Sex: Male
Age at diagnosis: 58
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Where do we start, really? Well, ten years ago Ken's brother died of MND. He had it for five years. It affected him very differently to Ken. We didn't know at that time that there was a hereditary strain, so when Ken was diagnosed it was a real shock. Ken had been going to the hospital with problems with his sinuses, because he felt like he had trickling down the back of his throat, and that was getting worse. So he'd been going to the hospital to have various head scans and X-rays and all that sort of thing. But then in 2005, about September time, he started, if he was eating anything, he would involuntary cough. And so while he was at work he always took a packed lunch. And he got to where he would go to lunch later so that he didn't have to sit with anyone, because he knew that he'd start coughing. And we just put it all down to all this phlegm he was building up in the back of his throat. And we had a hospital appointment and Ken happened to mention - and he sort of piled it on a bit, really, because we felt we wasn't getting anywhere with the hospital. And we thought if he made it sound - well, it was getting bad - but if we made it sound worse they might speed things up. And so Ken said about his coughing food and that, and then they said, 'Was there any neurological problems in the family?' So we mentioned John [Ken's brother]. Well, with them it started sending out alarm bells. And the doctor got up and went and brought some other people in and they sort of gave Ken a, got him to do various things, didn't they, with your arms and that. And then they started looking up on their computer. And I said, 'Well, MND isn't hereditary.' And the doctor said, 'Yes, it can be.' It's a very small percentage, apparently. But they would send Ken for tests and things to confirm it.
Footnote: less common types of MND diagnosis
A few people diagnosed with MND will be told they have a less common form of the condition such as PLS (primary lateral sclerosis) or PMA (progressive muscular atrophy). PLS affects only the upper motor neurones, and PMA only the lower motor neurones. The first symptoms of these forms are very similar to other more common forms of the condition, so in the early stages it can be difficult to distinguish them. In PLS, legs, hands or speech can be affected as well as sense of steadiness in walking, and in PMA it is usually hands or legs. People with these forms generally live longer than people with more common forms of MND, but they share many of the same problems of increasing disability. See our resources section for links to other websites for further information about the symptoms and progression of these forms of MND.
The MND Association provides a range of
information sheets, including content about symptom management and 2C: Primary Lateral Sclerosis and 2D: Progressive Muscular Atrophy.
Last reviewed August 2017.
Last updated August 2017.
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