Motor Neurone Disease (MND)
Physical therapy and exercise for MND
Physical exercise can help maintain or improve strength in the muscles not affected by MND, and maintain flexibility in muscles that are affected. It can help prevent stiffness in the joints. Physiotherapy may also help people with breathing difficulties to clear their chests and maintain lung capacity. However, people living with MND can tire very easily and find they need to conserve energy, so strenuous exercise is not normally recommended.
Several people had found physiotherapy and gentle exercise helpful, including hydrotherapy or swimming. A few had continued going to the gym and had adapted their exercise routine as their symptoms changed.
Peter goes to the gym to maintain upper body strength - he feels lucky he can afford it. He'd...
Ann' [laughs] But together we can do it, together we can do it. So he goes to the gym twice a week for a trainer. He also goes on his own, and walks on the treadmill - very, very slowly, but that keeps his legs moving. And he sees a physical therapist once a month who gives him a nice massage, which he thinks is wonderful. And she's blonde as well, so that helps [laughs]. [Peter' writing].
I guess with those walking, the treadmills, you can, you've got something to hold on to, haven't you?
So actually they're ideal in that way.
Ann' Yes. But as you say [reading], I mean unfortunately you have to pay for all this yourself. And if something like this could perhaps be on offer a little more for other people.
Peter' And, and we -- [Writing].
Ann' Well, I know we pay a lot of money. I don't think we need to go there [laughs]. We do pay a lot of money. But that's fine because we can, you know, that's what we can do. But unfortunately there are people who can't, and if things were, you know, were on offer like that. Also a hydrotherapy pool would be wonderful, if there was one that he could use. But we've discovered that the nearest is [city] and that would be'
So do you go swimming? Can you?
Ann' When we go on holiday he can - no, he did used to go swimming. There is actually a, a heated pool at the local handicapped school, isn't there? school for handicapped children. But he, there was no help there, and he nearly drowned twice. [Peter' laughs]. So we decided that probably wasn't the best thing. And it did put you off a little, didn't it?
Ann' But when we go on holiday, we - we tend now to go back to the same places because we, familiarity is very helpful. And there is the pool in Florida, when we go over to Florida, that he can actually go in and he can do his leg lifts and he can do some exercises in there. And because it's in the water it's much better for him.
Ann' So, so that's, that's good.
Swimming helped a lot in the early stages. It was tiring, but being able to move in the water...
A course of physiotherapy helped, but now he often forgets to keep doing the exercise. He likes...
I went to the physiotherapy. They're such nice people. Did a bit of exercise. But you only go for six, six weeks or something like that, and then end. And moreover when you come home, you forget to do those things also. But when you are with the people, when you are regulated, you do those things and feel a bit better. I'm going to the hydrotherapy now. There I do the exercise. And I found when I'm dipped in the water it's like a wall all around you. So it's very easy to do, bouncing around there. And it's so nice. But how long is it going to go? You don't go long. It don't last.
How often do you go?
Once a week, once, on Thursday I go.
One man had two sons who were both fitness trainers who met with the physiotherapist to develop a special exercise plan to suit him while he still was still mobile enough. A woman who had always been keen on fitness felt people should do as much exercise as they felt comfortable with. She went to the gym the morning after diagnosis and has been going ever since.
With MND, any exercise routine will need to be reviewed from time to time. The progression of the disease means that the person’s needs will change. However, if impaired movement makes exercise difficult, a physiotherapist can advise on assisted exercise or passive exercise where the person is helped by another individual. This can still help to maintain flexibility and range of movement in joints.
She goes to the gym as much as she wants. Keeping fit and active helps her fight the condition...
It has. And in fact I was on the website the other day, and it was sort of pros and cons of exercising. Well, I'm not interested in that. It's like, it's like reading the newspaper every day and them saying, 'Red wine's good for you' and the next day they say, 'It's bad for you.' Or, you know, 'You shouldn't eat this and you shouldn't eat that.' If you did everything that anyone told you, you'd never do anything. You know, you'd be terrified to go out the door, you'd be terrified to eat anything, you'd waste away. So people telling me what I can and can't do is just, just pointless. My neurophysio said, 'You mustn't go to the gym more than three, more than twice a week.' Well, how does she know I shouldn't go to the gym more than twice a week? She's not me. She doesn't know how I feel. And in fact I was going to the gym three times a week. And when I was away I went four times. So since I've been back I've been going four times [laughs]. And of course you get tired. But you get tired when you're 55 anyway. So, you know, you, you have, it's all relative, you have to put everything into perspective. And if, if I can manage to do all these things and, and not make myself ill, then that's what I'll manage. Some days I feel quite rough and so I won't do anything, and I'll just sit around and feel sorry for myself - no, actually I don't do that [laughs] - just sort of sit in my office or something. But I, I never have a day where I don't do anything. In fact to be truthful, the most depressing period was before I knew what was the matter with me. Because all the time you're not, you have no idea what's the matter with you, but you've got this condition that's getting worse and worse, it is extremely depressing. I have a friend at the gym whose husband has a similar sort of condition to me. And he's been even up to [specialist hospital] and he's been told he's got some sort of peripheral neuropathy, but he hasn't been given a, an MND diagnosis. And his condition is deteriorating - not to the extent mine has, he can still walk about - but he trips over and his ankle is very weak and so on. But I think he finds it depressing because he doesn't know what's the matter with him, and they haven't, you know, they haven't made a definitive diagnosis, really. And I think he finds it very depressing. And I was much more depressed in that period of eighteen months than once I'd found out what was the matter with me. And in fact I used to sort of sit on the sofa of an afternoon and have a, a half-hour or a forty-five minute nap, whereas I don't do that any more. Because now I know what's the matter with me, I know what I'm up against. And it, it's almost a case of, 'I'm not going to get, let this bugger get me. I'm going to fight it all the way.' And I, if there's something that I think might be a progression, I'll just push it to one side and just get on with it.
Others found vigorous exertion too tiring and concentrated on stretches and gentler exercises. Several people said how important it was to have physiotherapy help early on, because once they lost flexibility it was hard to get it back.
He lost muscle strength each time he was in hospital and found it hard to get active again....
You actually need to keep moving while you're there?
And when you got home did you just, how did you build up your strength again?
Just by being active, as active as I could. But the thing about MND is that it's very difficult to recover an ability to do something once you've lost it, simply because the muscles are actually losing their connections.
Have you ever had any access to any physiotherapy?
Yes, yes, the physiotherapy that I, in fact one of the things again perhaps worth commenting on, at an early stage of the diagnosis process, before it was realised what it, what I'd actually got, we were still thinking of peripheral neuropathy. After some initial physiotherapy at the local community hospital I was actually given a pass to the local leisure centre, where they had, you know, the gym, and was encouraged to use that. With the benefit of hindsight that wasn't a terribly successful approach. Of course, because one of the things, the best way of managing MND is to avoid getting overtired. So really encouraging one to pedal furiously on an exercise machine or something of that sort really wasn't doing any good at all, and in fact was simply reducing the amount of energy I had for sort of everyday essentials.
And after you were diagnosed did you keep, did you have any physiotherapy?
The physiotherapy that I've had since diagnosis has been mainly concerned with maintaining the flexibility of joints. You can't really build up muscles as such. The main thing is to try and keep things working for as long as possible. So things, well, very simple exercises, I mean that you can do in a wheelchair if you reach that point for example. But certainly not anything involving very hard work.
Some people also felt doing exercise or going to the physiotherapist gave them a feeling they were doing something positive, rather than sitting and resting all day which could be depressing. One man said he treated it as his work for the day.
He feels 'doing nothing is not an option'. The NHS should offer more active support such as...
I do think that my illness has slowed down. Perhaps it's just me or maybe it's just my type of MND, but it does seem to me that what I have done for myself has helped to slow it down, and that therefore doing nothing is not an option. If a patient is allowed to go home with a feeling of helplessness and hopelessness and gets depression as a result, and he or she becomes worried about what's going to happen to them, this puts the patient in a psychologically very bad condition. In such circumstances, any illness, especially a neurological illness, is likely to advance quicker than if the patient is in a much more positive, optimistic and upbeat mood. Consequently I do think that alternatives to doing nothing should be offered, for example, vitamins to take to strengthen the body's immune system, physiotherapy to help the muscles that have not wasted away, and taking part in research into the disease. There is talk about stem cell research and other research and so on, which at the moment is not practical for use on humans, but I'm sure that if patients with MND and other neurological illnesses were given [name] the chance to contribute towards future cures at least some of them would be keen to do so rather than sit and wait their turn to die. As an example of something completely ineffectual, I was offered 10 hourly sessions of massage in a local hospital, which turned out to be around 40 or 50 minutes of relaxing massage which did nothing for me and was a total waste of everyone's time.
It is evident that proper physiotherapy on a regular basis is necessary to defend the muscles that are still able or capable of some movement, and to keep muscle tone. As a result of physiotherapy taken five days a week (unfortunately I have to do it privately as there are no facilities on the NHS) I haven't lost much muscle tone. I've only noticed some muscle wastage in my upper arms and in my shoulders, but elsewhere my muscles seem generally to be holding up. A word of caution, though. My version of MND appears to be of the slowly progressing variety, and other forms of the disease which are quicker in their effects may make my suggestions less useful.
Tell me a bit about the physio. Because I think you said you arranged that yourself?
Yes. If I may say so, it's obvious that the NHS hasn't the money to employ physiotherapists on people who can be described as terminally or chronically ill. So I had to go privately. I have a Polish person who comes five days a week. He worked in a sanatorium in Poland. He comes five days a week to exercise my arms and legs and various parts of the body, and also to give me therapeutic massage.
On the other hand, some pointed out the dangers of believing exercise was going to slow the progression of their condition.
She would have liked physiotherapy as soon as she was diagnosed, to stop her leg muscles getting...
I have. I'm a bit angry really I wasn't referred to a physiotherapist as soon as I was diagnosed. Because it was only a fellow colleague of mine who was a physiotherapist that said why haven't I been referred and I should be seen. And by that time my muscles were very tight and my tendons were very shortened. And with physio and exercises that could have been stopped or slowed down.
The problem with physiotherapy is people sort of, who've been diagnosed with illnesses such as mine graft onto it thinking it's going to actually slow the progression down or help them to, you know, stop the illness but of course it doesn't. All you're doing is stopping secondary problems from happening. But my family do my physio with me at least every other day and if they can manage it they do it every other day, every day. And as I say it stops all the contractions or stops the pain. So yes I find physio invaluable but I wish I'd been diagnosed, referred earlier.
Right from the point of diagnosis. When was it you actually got?
I started receiving physio about April time, so about seven months after diagnosis and because of the way I walked it had shortened the tendons and all my calf muscles were very tight. And also my feet were very swollen with blood blisters on them. But through physio my feet are now the normal size and I don't get the blood blisters and they're the normal colour again.
Several people agreed that physiotherapy for people with MND was not as available as they would have liked, and wished the NHS would spend more on it. Complaints included not being able to see a physiotherapist early enough; seeing them for only a few appointments rather than long term support; or not seeing them often enough. Some people were concerned that physiotherapists relied on family members to take responsibility for regular exercises, but family members might not have enough time or confidence to do so.
Physiotherapy on his feet helps, so he's disappointed it's not provided locally. The physios have...
They had trouble getting community physiotherapy arranged to help clear Teresa's chest. A...
No. I'm going to think particularly in the first instance of physiotherapy. I think I've already said that in the early days in August of 2005 the hospital who did give Teresa some physiotherapy, chest physiotherapy indicated that they would like to see Teresa having chest physiotherapy in the community two, three, maybe four times a week initially but as a long term objective two or three times a week.
When conversations took place with occupational therapy they seemed to be unsure whether a community physiotherapy [corrected by interviewee] actually existed. There seemed to be a feeling that if that type of intensive physiotherapy was required to be done in the community then it would be a hospital based physiotherapist who would come out and perform the physiotherapy. Occupational therapists seemed to think that that sort of physiotherapy was outside of their remit. The problem was circumvented partially by the hospital physiotherapists, having referred to their seniors, educated me and instructed me on how to perform the necessary procedures and use the suction machines. The portable suction machines and the oxygen and all the rest of it. If there is a problem in the community for physiotherapy then the option of training a family member or carer is one that should be considered, looked at, perhaps at an earlier stage.
A hospital physiotherapist is a very busy person. They spent a lot of time more than one of them, spent a lot of time with Teresa. They were very patient with me and helped me. But some of the techniques are not techniques that are learnt in five minutes. The technique I could have done with a lot more time to practice and perfect under supervision within the hospital, they did not always have the time to do it. One or two physiotherapists came back after, when their duty had finished in their own time to give me time. I think that's absolutely splendid but it should not be necessary. If we need to train people in families, if we need to train carers, then it needs to be recognised early enough and resources given to it. Or we need to ensure that the coverage for physiotherapy within the community is adequate.
There was not enough NHS physiotherapy, so he did exercises with his daughter three times a day...
And that actually gave her a comfortable existence. We started being able to sleep all the through the night again because obviously we had a two-way radio system that Olivia could call us if she was uncomfortable. So we used to be waking up two o'clock, three o'clock in the morning, coming down, turning her over, sorting her out and going back to bed again.
One woman said she only found out by chance after talking to a chiropodist friend about things she could try to stop her toes from clawing over, which was very uncomfortable.
Her neurophysiotherapist recommended toe stretches to stop her toes curling over. A chiropodist...
Some people felt physiotherapy or exercises had little to offer them. One young man said he did the exercises he'd been given, but added, “What I need is a magic wand, not physio - a magic wand to make it better.” Sometimes they felt the advice given was not tailored to people with MND and that staff did not always know enough about the condition to give them appropriate advice.
A physiotherapist suggested exercises he couldn't physically manage. He felt she did not know...
Is that because you think they don't know enough about motor neurone disease?
I do, I do. Oh, yes, I think a lot of it's back to knowledge. And, you know, they look at you from a point of view that's, 'Oh, yeah, well, this sort of strengthens the arms.' I can understand that it would - a lot of the exercises would, you know. But there again, if you can do it, is the important thing, and how much it hurts you and all this sort of thing.
As one woman said, “Somebody who doesn't know about a condition can cause more harm than good. They're meant to be supportive and helpful, and they can leave you feeling quite low, really. So I think it is important that they do know about a condition before they come.”
As well as more traditional physical exercises, one man recommended singing as a way to encourage good breathing and maintain lung capacity.
TheThe MND Association provides information sheet 6A: Physiotherapy on their website.
Last reviewed August 2017.
Last updated August 2017.