Changes to mobility is one of the most common reasons why someone with MSA seeks medical advice initially. Perhaps it was just occasional stumbling or shuffling and slowing down or problems with balance and falling. Everyone with MSA will experience issues with their walking.
Sooner or later this will reach a point where walking aids are needed such as sticks, walking poles, rollators or frames. Even then, with an infection, constipation, dehydration, a fall or changes in blood pressure, moving about may become less safe and could lead to you falling and hurting yourself or others. With a diagnosis of MSA many Occupational Therapists and Physiotherapists will advise getting a basic wheelchair to use on a ‘bad day’ or to go a longer distance than you can manage to walk, enabling you to continue to enjoy some activities more easily. This does not necessarily mean you will be restricted to a wheelchair all the time, but it is available when you really need it. For instance, you might use the wheelchair from the car park to the shop or restaurant and keep your energy for a shorter walk when you want to.
Needing to use a wheelchair may become the ‘norm’ rather than the exception so you need to think about your living environment. How can you make it as easy as possible to live comfortably, reducing unnecessary struggles?
The key thing to consider is the structural/ building changes you may require, as these can be a major upheaval. This can help you to think through if they are actually viable in your current home or if it’s better for you to consider moving to a new house. If you think through the worst-case scenario and plan for changes around your home to allow the use of a wheelchair, any adaptations you do are likely to be more helpful, less likely to require further changes in the future and they will be more cost effective. Looking only in the short term or only making alterations when there is a crisis, is unlikely to be helpful in the long term. You may need to consider further changes later, with all the upheaval of modifications and building work, as well as increased delays and costs.
Considering access to outside the house is very important. Wide low steps or a ramp to a level area to transfer into a car or wheel into a Wheelchair Accessible Vehicle may be very helpful to enable you to get out and visit family and friends. Using any wheelchair requires room to turn and space to position alongside a bed or chair. Doorways may need to be wider and stairs are not an option. A sit or stand-on stairlift is not a recommended option for people with MSA generally, due to poor balance and potential for dizzy episodes on standing and transferring. For someone needing a wheelchair it is not a practical option, so there is a need to consider if upstairs bathroom and facilities will really meet your needs. If so, installing a through-floor lift could be considered. It may be better to consider ground floor living with installation of a bathroom/wetroom on this level. Generally having ground floor facilities enables easier living, reducing time spent getting to bathroom or to bedroom for daytime rest etc. You may also want to consider whether you can accommodate your carer in the same space and if not, what sort of communication device you can use once you’re in bed.
If you do find that you need to use a wheelchair full time, then you may also need other aids and equipment to allow people to assist you e.g. hoists, adjustable beds, commode chairs. Using this equipment will need space – to manoeuvre around – and so if possible take this into consideration when planning and don’t compromise on space unless you absolutely have to. Functioning in tight spaces to do things that have to be done daily or several times a day becomes very frustrating, stressful and impacts negatively on quality of life.
It is often much easier to think about changes to your home earlier, so that plans can be made without rushing and be made in a co-ordinated way. This may include thinking about alterations to your home or you may even have to consider whether you need to move, as your home is not going to allow you to live comfortably using a wheelchair. If you need to move house this is easier if you are able to view other places, express your opinion on location, style etc. and cope with all the complications and paperwork and problems of moving. If you are going to do adaptations then being able to voice your wishes and contribute to the choices that need to be made, as well as coping with having builders in, is much easier whilst still able to do so.
Your local Occupational Therapist (OT) based at Social Services can advise on what may be possible in your current home and may be able to assist you to get a Disabled Facility Grant or other grant, to support with financing any work, if you meet the criteria in your area for this. More information about Disabled Facility Grants can be found here – https://www.gov.uk/disabled-facilities-grants.
In summary the sort of things you need to think about with your OT to make your living environment as life enhancing as possible are:
- Is your bathroom needing modification? Consider a level access shower or wetroom/ bath with hoist.
- Where is your bathroom in relation to your bedroom?
- Does your bathroom and bedroom area have enough space to accommodate a profiling bed, commode-shower chair, hoist or wheelchair turning?
- Would all ground floor living be easiest and achievable? If not, you will need to consider a through-floor lift or if stairs are wide enough, a wheelchair platform lift.
- Will you be able to get out of the premises? Ramps / wide steps / platform lift / level access.
- Are doorways wide enough to access all areas you need and wish to?
- Make your living environment as easy as possible – it’s never too early to start planning what needs to be changed
- Always involve your Occupational Therapist
- Start from the assumption you may have to use a wheelchair when planning alterations. This way you will manage in your environment whatever your situation
- Use as much space as you have available for your alterations.
The MSA Trust is here to support anyone affected by MSA. If you have any questions about the information on this page, please contact us and we will do our best to help you.