Published in InterAction 75, Spring 2011
After the great response to our mobility aids feature in the last issue, Rebecca Murungu-Danya looks at other equipment people with M.E. might find useful.
The nature of M.E., the range in severity of symptoms and the fact that there is no prescribed medication that can cure it means that people with M.E. have to look for other ways to ease symptoms and help make life more manageable.
One way to do this is with the use of disability aids. These can help with walking, sitting and lying comfortably, with personal care and with household tasks. You might be wondering what kinds of disability aids are available and where to buy them. Hopefully this article will answer these questions and help you to make a more informed decision if you are thinking about purchasing an aid.
A clear advantage of disability aids is how they can assist someone with M.E. in carrying out daily tasks. Aids available include long handled grabbers, adjustable back rests, light weight kettles, shower seats, foam wedges… the list is long.
One item I personally wish I had known about is a hair dryer stand that means you can dry your hair hands-free. My arms used to ache terribly when drying my hair!
Moira found a bath lift particularly useful. She says, “After experiencing difficulties getting in and out of the bath because of weakness in my legs and arms, I invested in a bath lift. I have found it extremely useful and can now bathe without worrying if I will be able to get out of the tub.”
“I investigated several types of bath aids, several of which were costly and required installation. I finally found the Aqua Joy portable, lightweight bath seat which is operated by a battery operated handset. “The seat lowers into the bath and then raises up to lift you out. It can be folded away when not in use and there are a range of options including a turntable seat which is useful if you are unable to step over the side of the bath.”
It can be difficult to know what exactly is available and which would be most beneficial. For me, actually going to a specialist disability aid shop was vital. Understandably this is not always possible when you have severe M.E., in which case a family member, friend or carer could go.
Staff in a specialist shop can advise you and suggest items that are specific for your needs. This can often be products that you never knew existed but could be just what you need. Visiting a shop also gives you the opportunity to try things out, such as sitting in riser recliner chairs or testing different height walking sticks.
Specialist disability aid shops also usually offer an after-care service. I spoke to the manager of my local one, who told me they have a female customer with M.E. who uses a mobility chair and they make adjustments to the chair as the nature of her illness changes. Yes, this does cost money but it means the chair is meeting her needs and is also cheaper than buying a new mobility chair.
Disability aids can help users gain more independence. Walking aids such as a stick or frame might make the difference between staying at home and making it to the local shop.
Stockport M.E. Group sells a walking stick/seat to its members at cost. Kareen says, “The sticks provide a steadying aid and support whilst walking, then fold out to form a substantial seat to sit on. They are lightweight yet strong enough to take anyone up to 23 ½ stones.
“Recommendation comes from numerous previous purchasers from Stockport M.E. Group! Several say that they would never go anywhere without it; some are even internationally travelled. Indeed, our previous chairman took his sightseeing around Scotland with him.”
Unfortunately, disability aids have their disadvantages, too, the main one being the potential cost. Riser recliner chairs are approximately £1000, shower stools £50, prop-up bed wedges £30 and grabbers £12. Help with costs may be available from your local authority if you have a care assessment. Contact social services or ask your GP.
Although smaller items such as mechanical tin openers are cheaper, the overall cost can add up. Items are generally cheaper on line or through catalogues but as mentioned earlier this means you are unable to try things out.
If aids are not the right size, shape or appropriate for the user, problems can be caused or made worse. For example, a walking stick that is too short can cause back pain, and the last thing people with M.E. want is to ache in more places than they already do.
Embarrassingly, I can vouch for this: when my M.E. was going through a bad patch I used my great grandmother’s walking stick which was not the correct height for me and as a result gave myself hip and back ache!
Another disadvantage of using disability aids is the risk of deterioration of physical ability through reliance on aids.
Where to start
The Disabled Living Foundation (see ‘Useful contacts’) is a good place to start. It offers factsheets and advice guides, a supplier directory and a helpline where you can find information on where you can buy or hire disability aids and sources of funding.
AssistUK has 53 Disabled Living Centres throughout the country. The centres have a permanent display of products and equipment that allow people to see and try the equipment and have professional staff who can offer advice and information. The products are not available to buy at the centres but are usually on loan from local suppliers and UK companies. For example, the Bristol centre offers equipment displays, appointments with trained staff, information by phone, email and post and outreach days.
The Directgov website contains useful information on trying, choosing and buying equipment. It suggests you should try out all equipment before buying it and if you are considering buying an expensive item, ask to use the equipment for a trial period in your own home.
Directgov also has a link to a list of local councils and these might be able to provide help and advice. For example, my local council has an Occupational Therapy Service for adults with physical disabilities that gives advice and information on how to stay as independent as possible.
Get the right support
Coming to terms with the fact that you need a disability aid is not always easy and giving up certain independence can be upsetting and frustrating. This is something I understand as using a walking stick in my mid 20s was not something I wanted to be doing. The support and advice that charities like the Disabled Living Foundation and Assist UK provide can be very valuable.
Overall, if you have M.E. and you are considering purchasing a disability aid it is very important to visit a specialist shop that can provide you with help and advice. This way you can be sure you have the correct aid for your need and that it won’t cause more problems than it solves.
About the author
Rebecca Murungu-Danya has had M.E. for 7 years. She lives in Somerset and enjoys writing, reading and doing crafts.
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