People with Multiple Sclerosis (MS) can need a wide range of support with aspects of everyday living such as walking and moving about. In advanced stages of the condition some people need help with getting in and out of bed, getting about outdoors, personal hygiene, eating and drinking. Sometimes people need to modify their living accommodation. A huge array of special equipment is available and relatives and friends we spoke to talked about everything from adapted cutlery to house conversion.
Many people with MS experience problems with walking and with balance. This means that they often need support of some kind to help them move about. Sometimes they just need to hold on to things, or people. Shower seats, grab rails, ramps and steps around the house helped a lot of people at first. As their condition progresses they often use a walking stick; some people go on to need other walking aids like frames, wheeled trolleys, wheelchairs and motorised scooters.
MS Specialist Nurse describes the types of equipment that can be helpful around the house and talks about not being afraid of using wheelchairs to conserve energy.
John X’s wife is fairly typical of somebody who has been living independently with MS for many years, using a variety of aids to help with daily life. Dave’s wife has more advanced MS and needs more equipment. Anthony’s wife is just beginning to need help to get around the house.
Dave got useful advice from a Disability Resources Centre and some equipment supplied by occupational therapy services. They have bought additional items themselves.
John’s wife has a range of aids to mobility, all provided by the Social Services Department of the Local Authority.
A man from the local council gave Anthony and his wife useful information about equipment that could be installed in the house and garden to help her move around more easily and safely.
As some peoples’ mobility got worse they needed to install a stair-lift in their house, or move to single-level accommodation. Smaller items of equipment were often supplied free of charge- Jeff’s wife got a grant from the county wheelchair service for a wheelchair. The occupational therapist provided grab rails free of charge and they were fitted by the charity Age UK. Most people had to pay for major pieces like stair lifts or other adaptations to the house themselves. The Social Services department told Robin where he could get a good second-hand stair lift which he thought was just as good as a new one.
Paul wanted a particular type of stair-lift but the Local Authority wouldn’t fund it.
John advises other people to think about the timing of major purchases so that you get the most use out of them. Only six weeks after installing a stair-lift they had to move his wife to live downstairs.
Sarah wasn’t keen on having a stair-lift in the house at first. She talks about how the whole family has to adapt to having mobility aids and other equipment.
It is beneficial to keep as active as possible when you have MS, as physical activity contributes to overall health and maintains bone strength. When people could no longer walk, even with a walking aid, using a wheelchair was a practical solution to problems of getting around. But it was also seen, by some, as a symbol of decline. Mully said that her husband’s mother, ‘assured us he’d be in a wheelchair by 40;’ so they were delighted that he didn’t need to use one until he was in his fifties. Jean told us that her son expected that, ‘he might need one in the future, but he wasn’t going to sit and wait in one until he needed it.’ When Kay Y went to a conference about secondary progressive MS, she was surprised that, unlike her brother, many people she saw there weren’t in wheelchairs.
Some people with MS were resistant to using a wheelchair, or even a walking stick, at first, but gradually they got used to the idea as they found some benefits from using it, such as being able to get out and about more and to feel less exhausted. An electric wheelchair was very useful for relatives when travelling outdoors. When Paul Z got a pressure cushion for his wife’s wheelchair, it helped to prevent the sores she had been getting.
Anthony’s wife felt that she would be stigmatised if people saw her using mobility aids and has only used them regularly when she felt it was absolutely necessary.
Ray’s wife was really reluctant,’ to use a wheelchair or scooter. Now she finds that she is less fatigued when she uses an electric scooter.
Betty felt that people in wheelchairs were discriminated against. Bernard and Robin talked about people ‘blaming you for being in the way,’ or ‘walking right through you.’ On the other hand, Robin, Paul Y and Ian also pointed out that some people, and organisations, were really helpful. Paul Z was pleased that when his young grandchild drew a picture of the family, he included his wife in a wheelchair as though it were normal.
A major piece of equipment for some people was a wheelchair-adapted vehicle to transport their relative and wheelchair. Sometimes there was financial help for this through the Motability scheme, but some people bought their own vehicles because it gave them more choice. Getting the right vehicle could be a matter of trial and error. Tony and Eric both found that the first car they got didn’t allow the person in the wheelchair to see out of the windows properly. They researched the next purchase carefully and tried several vehicles before buying. It was important to get a vehicle with good suspension so that the person in the wheelchair could ride comfortably.
Tony had to change their wheelchair adapted vehicle because his wife couldn’t see out of the window from her wheelchair.
Eric describes the process of getting the right sort of vehicle so that he can take his wife out in her wheelchair.
Eventually, some people needed to make major alterations to their living accommodation, or to move house. Jeff, Kate, Karl, Patience and Mully and their partners had all moved to live in a bungalow or a ground floor flat. Louise and her husband didn’t want to move from the house where they had lived as a family for a long time, in a place that they liked and was convenient for them. They are planning to make changes to the house so that he can live on one floor.
Several people had made changes to their bathroom, usually converting it to a shower or wet room. Paul Z and John Y did all this work themselves. Paul got financial help from his trade union. John, a self-employed builder, had to pay for the work himself.
John adapted an upstairs bathroom, but then decided to build a downstairs extension for his wife to have her own bedroom and walk-in shower. He resented having to spend his own savings on this work.
Paul couldn’t get financial help from the local authority to adapt his bathroom. He was not amused, later, when people from the authority came to look at the work he had done so they could install something similar for other people.
Morris bought the pub he used to run at auction and converted it into flats. His dad lives in one of the flats, next door to Morris’s house.
Becoming completely immobile could be a trigger for the person with MS to move into a care home. People often wanted to resist this for as long as possible. Alice’s friend, who lives alone, has 24 hour paid-for care at home. Eric continues to look after his wife at home with the help of paid carers, a wide range of equipment and some extensive alterations to their bungalow. He had several ceiling hoists installed in to their home to lift his wife around the house.