Physical therapy and exercise

Physical exercise can help maintain or improve strength in the muscles not affected by MND, and maintain flexibility in muscles which 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 very 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. 

Swimming helped a lot in the early stages. It was tiring, but being able to move in the water lifted her spirits.

A course of physiotherapy helped, but now he often forgets to keep doing the exercise. He likes having hydrotherapy once a week.

Peter goes to the gym to maintain upper body strength - he feels lucky he can afford it. He'd like to be able to do more exercising in water. [Peter cannot speak much].

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.

She goes to the gym as much as she wants. Keeping fit and active helps her fight the condition and stay positive.

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. Before diagnosis he was referred to a gym, but that was too tiring.

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 physiotherapy. He pays to have a private physio every day.

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 so tight, but she knows it cannot slow progression.

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 shown his wife what to do but she already has too much to do.

They had trouble getting community physiotherapy arranged to help clear Teresa's chest. A hospital physio showed him what to do, but he needed more support.

There was not enough NHS physiotherapy, so he did exercises with his daughter three times a day to loosen her muscles. Staff do not always know enough about MND.

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 friend told her pads under her toes would help.

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 enough about MND.

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.