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Robyn Copley-Hirst
17th May 2011, 10:37
Hi Everyone,

Susie and Rob sent some really useful information to me earlier this week detailing their advice and experiences they thought would benefit others. It was really useful to us as feedback, and we'll hopefully be able to make use of it as an association... and they hope it may be of use to you all on the forum, too. I'm posting it on their behalf from their emailed documents to save them the job!

Robyn
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Living Aids

Bathroom conversion

We had a conventional bathroom with a bath, wc and hand basin. There was a shower above the bath with plumbed in hot and cold supply. On a visit to HAD ( Herts Action on Disability—our local charity ) we saw some ads for companies who convert to wet rooms. Ivel Building Services Ltd in Shillington, Beds were recommended, so we phoned them for a quote. That was one Friday. They arrived on Monday and quoted verbally that day. We accepted their price and they started the following Friday. They were finished by the next Thursday. They removed the bath and had to drill a shallow recess in the concrete floor (as we are on the ground floor) to take a shallow shower tray which is no longer seen when the waterproof floor is fitted right across the bathroom. We were lucky enough to locate the original bathroom tiles so they could tile just the walls they had bared to match the existing. We have kept the original shower unit. They also installed a pump to suck the water away from under the floor. The total cost of this was 3500.

NHS Occupational Therapy supplied a wet chair and I can sit on this in the shower and either shower myself or be showered. This chair can also be used to wheel me between rooms and will sit above the wc conveniently (as an alternative use!). This wet room has proved to be invaluable without making our home look like a hospital.

Profiling Bed

Apparently it is harder to breathe lying flat than propped up as I have found. An electric profiling bed has the advantage of getting me into a comfortable position to breathe and sleep. As my disease started in my upper body I have found it difficult to get up from the bed (my Mum always complained of this when I was a teenager!) and the profiling bed helps me with this as I can sit myself upright before getting on my feet. An NHS bed can be obtained (not through OT but by a referral from your GP to a district nurse) but they will supply something resembling a hospital bed which I did not want. We researched these beds on the internet and many companies sell them. We decided that I should have my own single profiling bed and Susie has her own standard single bed that we can push together or apart. I now don’t disturb her adjusting my positions throughout the night. We typically found that you could spend 1500 upwards on these beds, so back to good old Ebay where I found a good quality secondhand one (as new) for 250. I did have to pay 180 to have it collected and delivered but it has been worth it’s been worth its weight in gold. Once again we have avoided our bedroom looking like a hospital room.

Rise and Recline Chair

Although this disease has really given me no pain I do have a lot of discomfort as I lose my muscles and the rise and recline chair that we bought has been the best relief from that discomfort. We were lucky to buy one that very nearly matched our existing furniture.
These chairs come in two versions (single motor and twin motor). The single motor will rise to assist standing and when it reclines the foot rest comes out fully before the back rest reclines. This is the version I bought but now wish we had gone for a twin motor because I can’t recline the back rest on mine until fully raising the footrest. Prior to buying the profiling bed I spent many nights sleeping in this chair. This is one item that we bought new rather than on Ebay. After researching in local furniture shops and on the internet it proved to be most cost effective buying from an online seller who deliver and assemble in your home. The make we chose is Sherborne, model Lisbon, purchased from Haynes Furnishers www.haynesfurnishers.co.uk
Also www.recliners4u.co.uk
For 869.

They are much cheaper secondhand and we have heard that MNDA may have access to stock for
loaning.

Hoist

Our OT arranged for a survey of our flat with a view to fitting an overhead rail for a hoist in our bedroom. This proved to be impractical because of a technical problem with our ceilings. Now they have supplied us with a mobile hoist (looks like something you would use to take the engine out of your car with). We actually think that when we use this on a regular basis that it will have more flexible use than the overheard rail in that we can use it in any room to transfer me from either bed or wheelchair or shower chair or riser/recliner. We had some laughs dangling me in the sling. Susie is still on a provisional license! Your OT will advise on the most suitable type of sling to be used with the hoist depending on each person’s condition. Susie is in touch with a charity called Carers in Hertfordshire and she went on a course provided by them on Moving and Handling (which includes hoists).

Other Items

There are numerous small items that can help everyday living. Special knives and forks, can openers, key grips, walking sticks and aids, shoe horns, washing aids, etc etc. Herts Action on Disability have a shop with many of these items and we have found others through catalogues on the internet. We picked up a very useful catalogue called ‘Making Life Easier’ which is full of such things, from Beard Brothers, Hemel Hempstead.
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More advice courtesy of Sue & Rob can be found at:

Sue & Rob's Guide to Wheelchairs, Scooters & Adapted Vehicles (http://forum.mndassociation.org/showthread.php?438-Sue-amp-Rob-s-Guide-to-Wheelchairs-Scooters-amp-Adapted-Vehicles&p=2781#post2781)
Sue & Rob's Guide to Benefits (http://forum.mndassociation.org/showthread.php?439-Sue-amp-Rob-s-Guide-to-Benefits&p=2782#post2782)
Sue & Rob's Guide to Housing (http://forum.mndassociation.org/showthread.php?441-Sue-amp-Rob-s-Guide-to-Housing&p=2784#post2784)

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