Motor Neurone Disease (MND)

Mobility, arm and leg weakness in MND

For many people who talked to us, weakness in their arms, hands, legs and/or feet was a key symptom. The resulting changes in mobility and independence significantly affected their daily lives. 

People with weakness in their arms described problems dressing, eating, washing, running the household, writing and using a computer, amongst other things. Arm or wrist supports had helped some. One man was thankful for CHIP and PIN technology which meant he didn't have to sign his name in shops. People described how they adapted to each change and various practical solutions they had found. 

Not being able to hug or express affection physically with their hands could be upsetting. (See 'Relationships and sex'). On their website, the MND Association provides information sheets 13 A and 13B on sex and relationships to answer some of the concerns people may have about intimacy.

One woman explained how some people did not know how to respond to her lack of hand and arm movement.

Many people with leg weakness and foot drop said they had lost their balance and fallen or tripped. This was inconvenient and distressing, and sometimes people hurt themselves quite badly. The husband of one woman who fell just outside her house said, “It just looked like somebody had cut the strings on a puppet.” She broke her thigh bone. Another person broke a wrist putting out a hand to break his fall. Several said it was not just the falling over that was the problem but managing to get up again, especially if they had arm weakness too. Several female carers found their husband or partner too heavy to lift. Again, people mentioned various practical solutions.

Some people found humour helped them deal with the embarrassment of falling in public. 

However, others found it more difficult to laugh it off, as one man explained:

“You can be embarrassed because you're so slow, and if you fall...I'm afraid I'm not the sort of person that can laugh that off. I get really a bit uptight about that and I just don't like it, so I'm better in my own place. I feel I'm happier here. I do things at my own pace and my own speed.”

As some people above described, coldness in their hands or feet could be uncomfortable and restrict movement even further. They recommended trying to keep warm, for example by wearing fur-lined boots, and to keep moving as far as possible. People also talked about getting stiff limbs because of the lack of movement, and several said they got uncomfortable in bed because turning over was hard. 

As this woman explained, dealing with the progression of symptoms was a process of constant adjustment, both practically and emotionally. Comments included,

“You feel the progression as it goes through you. But once it's started it stops being frightening. Because you become aware of it, and you're conscious of it, so it's not frightening any more. It's frightening at the beginning.”

“I spent the whole year and a half in a state of graduated denial, just focusing on the here and now and not thinking about the future, and hoping that this little plateau would last as long as it would before the next one. But inevitably there always was a next one. And at each stage there was that sort of heart sinking feeling again.”

People had different attitudes to what was the best way to deal with progression - some said they resisted aids and equipment as long as they possibly could, and only moved on to the next stage when they really had to. Others felt it was important to anticipate changes and get prepared. For many people it was a question of trying to strike a balance between these approaches. (See also 'Philosophy, attitude and messages to others'). The decision to move into a wheelchair or use an electric scooter was often a particularly significant marker of change. As one man said, 

“One of the most traumatic things was when do you go into a wheelchair? When do you suddenly decide you're disabled? You know, get a Blue Badge sticker. It has its advantages - always find a parking space and generally free. So, you know, there's good news everywhere. But it really is that moment, and there are all these emotional hurdles you have to overcome as you go through.”

Using a wheelchair or scooter helped some re-discover a level of freedom and independence they had begun to lose, but to others it was a symbol of greater dependence which they wanted to resist at all costs.

A major factor in people's attitudes to mobility aids was their experience of disabled access and the attitudes of society to people with disabilities. Some had good experiences, for example finding Clos-o-Mat toilets (which have a washing and drying function) in a local arts centre, or finding shop staff really helpful, and some said their local towns were quite good about providing lowered pavements and ramps. However, many said there was still a long way to go. Often people felt adaptations to improve disabled access met a bare minimum standard and still left people in a wheelchair or people with arm weakness with a lot of problems. Issues included:

  • Ramps which were too steep or bumpy
  • Uneven pavements and lack of lowered crossing points
  • Lowered pavements with a slight 'lip'
  • Disabled toilets without enough space to turn a wheelchair, or used as storage space
  • Blue badge parking spaces which were too far from the building or were used by non-disabled people
  • Heavy fire doors
  • Non-disabled people using lifts in shops or public buildings when they could use the stairs, or using disabled toilets.

Several people had taken up particular issues with their local authority, with mixed results. Some said the authority responded quickly to suggestions, but others were referred from one department to another, or got a less positive response.

Access to shops was often a problem. Many said they did not like having to be 'parked' outside a shop with poor access. One man recommended taking a digital camera on shopping trips. If there is a shop he can't get into in his wheelchair, his wife can go in, take a picture of what they're thinking of buying and come out to show him. Several people said they just had to be assertive and ask for help when they needed it.

Some people had experienced particular technical problems with wheelchairs, and a common complaint concerned getting a sufficient charge in the batteries for electrical wheelchairs. One man said his original 12 amp charger, which worked well, was replaced for safety reasons with a 3 amp charger and he'd had problems ever since. Another man explained in detail his technical problems.

The MND Association has a Wheelchair Service that can help people access the right type of chair for neurological needs through statutory services and may be able to provide support with top up features. They also provide MND support grants for a variety of needs, including equipment that cannot be provided through health or social care. Some of these grants need to be applied for by a health or social care professional following assessment. For more detail, see the 'Getting help' area of their website.

They also provide a range of relevant information sheets to assist, including 11C: Equipment and wheelchairs and 12A to 12D on driving and travel. See their information resources on their website.

People's experiences of obtaining different types of equipment are discussed in more detail in 'Aids, equipment and adaptations'

Last reviewed August 2017.
Last updated
August 2017.



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