Last reply 8 months ago
After the Wheelchair

Hello to all. I’m a male 70 years old. I’ve been diagnosed with MS for over 30 years. I’ve been very lucky. I worked thru a great career with RRMS for 20 years. I retired 10 years ago and I’ve been in a wheelchair for the last 5 years. I’ve had SPMS for the last 12 years. I find myself getting weaker and weaker. The transfers are getting more difficult. I guess my question is what comes after, when I can’t make the transfer from bed to wheelchair to toile and back. I’ve had an incredibly supportive and loving wife through these times. I’ve read about lifts, they seem cumbersome and difficult to use in a small house. Can anyone tell me about their use or the quality of life a person can expect when living with them? I’m not really depressed just practile. I would appreciate any feedback good or bad. Thanks

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8 months ago

Hi @donms and welcome.

It seems that you could do with an occupational health assessment, to see what aids would work for you. Additionally, a social care assessment to consider some form of assistance, to avoid imposing on your wife.

I’m not American, so have no knowledge of whether these kind of assessments are available and how to arrange them. Perhaps some of our American members will respond.

8 months ago

I have just had a ‘through’ lift installed by the council at no cost to me (had to sign form to say I wasn’t going to sell the house within 10 years, if I die or have to go into a home still no charge) they have also changed the front door and put in a ramp at the front so I can drive wheelchair/mobility scooter straight into house. Life is now brilliant, lift stays upstairs all day out the way until I need it, opens out right next to bed just two metal supports in living room that don’t detract from the rest of the room. Had to have a occupational therapist assessment from the council, they were originally going to put a stairlift in, but the hospital must have told them not to bother, in 2 years time I wouldn’t be able to use it because I wouldn’t be safe.

I understand that all councils basically have the same rules and if you have savings of more than about 15k you have to contribute on a sliding scale. I own my own property but they do the same with council properties. Long process, it took nearly 18 months (councils don’t move quickly) they sent engineers and building experts to work out where they could put it, so they do their homework! By the way it’s a 3bed semi hope the info helps, I’m 62 and have had the beast for 25 years.

8 months ago

Hello @donms, it’s really heartlifting to read that you regard yourself as ‘I’ve been lucky…’ especially having an amazing and supportive partner. I love your sense of realism; the things you write about are pretty much the concerns most have as they get older, with or without MS. I don’t have any tips. But I wanted to send warm thanks across the Atlantic for your post x

8 months ago

Hi @donms
I am 45 unable to walk or stand up unable to make any of the transfers or go to the toilet in my case what it has worked is a ceiling hoist carers a shower chair that can also go over the toilet and nappies …..

8 months ago

Hi @donms,

At this point I can offer a couple of resources for looking more, and I hope this helps in some way.

*** Testing Equipment and Equipment Programs by State
This page supplies a lot of links at the bottom to various equipment programs, and on the top it references “loans” of equipment for testing. It sounds like maybe you could test some equipment through some of these programs or get help finding the right thing.

*** Silver Cross References
This page outlines various options through Medicare, Medicaid, and other state and federal programs – there may be a program here that provides some equipment consulting as well.

Getting Funding for Accessibility Equipment in the U.S.A.

All the best, RM

8 months ago

hi @donms
it’s good to see your positivity, and that you were able to have a good career despite your ms, as well as having a wonderfully supportive wife. but i also understand your worries about the future with this progressive disease.

i’m 49 and have had spms for the past 6 years and been in a powerchair for the same number of years. i can no longer transfer by myself and have no longer any use of my left arm/hand. in the bedroom we have a lift, which my (also very supportive and loving) wife can operate to get me in and out of bed. toilet and bathroom, on the other days, are off limits for me, as they are too small to get into, let alone to install a lift. but there are other ways for that.

i’m also getting gradually weaker, and it’s a scary road, but one learns to adapt. i’m thankful that i can still spend the days in my wheelchair and move around in the house.

8 months ago

I live in the US and you usually to pay some of the cost for something like a lift. There is usually a MS association near by in bigger cities that have equipment to loan. I am not sure if they would have a lift, it can’t hurt to ask. Potter

8 months ago

Thanks to everyone for your support and suggestions. You’ve given me several good things to think about. It’s been a tough year but I like to quote old proverbs. One says “I don’t ask for a lighter load, just broader shoulders”.

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