Lack of Mobility: I wish there was a how... - My MSAA Community

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Lack of Mobility

Tinker-Belle profile image
17 Replies

I wish there was a how to book for how to live with immobility. Maybe there is but I haven't found it. Neither of my legs work at all anymore and nothing about this house is accessible. Thank goodness I'm small and my husband can pick me up to move me. However, it is frustrating. I wish I could learn how to better live with this situation that only seems to get progressively worse. Wah. Anybody relate?

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Tinker-Belle profile image
Tinker-Belle
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17 Replies
Kenu profile image
Kenu

Friend of mine had a track ran in his ceiling from bedroom to living room to kitchen and then to bathroom. Had electric lift kit that lifted him with cable connected to chair and then a remote to go room to room. This way his wife could keep him home and not brake her back lifting him 👍. He used it for twenty years till he passed. Not sure where it came from but I’m sure you could google it. It is an investment but made him comfortable at home 🏡. One of my other friends has a portable hoist in bedroom to lift his wife into bed 🛏. He is 73 and it was killing his back getting her in and out of bed. I know there’s Norco has all kinds of items like this. It is a medical supply store. Good luck and bless you and your family 🙏😉🐾 Ken

Tinker-Belle profile image
Tinker-Belle in reply toKenu

This sounds awesome. Definitely something to look into...not just who does something like this but if Medicare helps with costs, etc. My husband has a bad back, too, so it's not easy for him, either. Thank you so much for sharing. I've had difficulty finding a whole lot of information about accessibility products/ideas. I'm sure there are decent resources somewhere.

Kenu profile image
Kenu in reply toTinker-Belle

I know our caregivers don’t complain much but they have just as much stress. My friend Hugh that I mentioned just had a heart attack and Toni had to force herself to get on and off the toilet 🚽 as he just can’t do it anymore. Good thing she has been able to and they have the hoist in bedroom. We do not get any younger and we have to think ahead what to do to stay in our house 🏡. She hasn’t been in there basement for eight years. Lucky the washer/dryer is upstairs. Just things to think about. 🐾Ken

Kenu profile image
Kenu in reply toKenu

“Lifts in homes for the handicap “ I looked this up and has photos of tracks in house and chair lift👍. Check it out 😉🐾 Ken

Tinker-Belle profile image
Tinker-Belle in reply toKenu

Thanks! Will do so right now.

Tinker-Belle profile image
Tinker-Belle in reply toKenu

Wishing Hugh a speedy recovery!

jimeka profile image
jimeka

I admire you for handling the situation well. I must admit that, that part of my future scares me. With having PPMS it is always in the back of my mind. Being reliant on other people when you have been self sufficient is frustrating. Acceptance is a big part of it, but I find it hard to accept. I wish I had an answer for you, apart from maybe aqua therapy, yoga or Tai Chi to help exercise, I don’t know. I hope someone can answer you, good question, I look forward to reading the response, blessings Jimeka 🦋 🌈

Tinker-Belle profile image
Tinker-Belle in reply tojimeka

It is scary but it's also so unknown and varies person to person. Thank you. I can't say I always handle it so well. Tears are a fairly frequent occurrence! Blessings to you as well.

Peruzzot profile image
Peruzzot

I don't have mobility issues yet. My great grandfather was confined to a wheelchair after being disabled fighting in WWI. The ground floor of his house was modified to make it wheelchair accessible. He complained all the time about not being able to go upstairs or down to the basement without being carried. I was 3 when he passed away. Most of my memories of him are him complaing about what his chair couldn't do.

If you search charities and local government programs there might be programs that can help modify your house for what you need and help you pay for the modifications.

A lot of innovations have been made since 1973 when my great grandfather passed away to make life in a wheelchair easier and allow you more independence.

Tinker-Belle profile image
Tinker-Belle in reply toPeruzzot

Good ideas and thank you! It's sad that is your primary memory of him. I hope I don't grumble that much. I don't think I do...yet! LOL. We have a basement as well. That is where the washer and dryer are. Needless to say, I haven't been down there in a few years. Oh, darn, I can't help with the laundry anymore. Kidding aside, I wish I could. I would definitely like to figure out how we could make even some parts of this house (like the bathroom!) more accessible or move to a place that is. Thanks, again.

ssdw1958 profile image
ssdw1958

I can relate my legs can move me to the bathroom and back but some days not so good if you find that book please let me know. That is like when I got my wheelchair I did ask can you show me how this works and they said that there wasn’t any directions. I thought oh great not in a good way.

Tinker-Belle profile image
Tinker-Belle

I will! i used to be able to get to our small bathroom in the wheelchair, push myself up, and then shuffle to the toilet and/or shower. I can no longer do that. Thank goodness the toilet is close, so I pull myself up the wall and fall back. I lean from there to the sink (which should NOT be leaned on) to wash my hands. My husband has to lift me into the other bathroom shower seat to bathe, moving me first to the seat of a rollator and pushing me to the tub since the wheelchair doesn't fit through the door. We can't keep doing this forever. Ugh. No directions for the wheelchair....I know, right? It's like they make these things and just assume the user will know what to do. Not only that but "accessible" public bathrooms are not very accessible to somebody who is stuck in a wheelchair....from the doors to the soap and paper towel placement, etc. I guess that's a whole different subject! Wishing you a good day!

Fancy1959 profile image
Fancy1959

Tinker-Belle, it's Fancy1959. The only advice I can tell you is to go to physical therapy as much as possible! They work wonders and they will do everything they can to bring the strength back in your legs and to stretch them out and make them work again. So Physical Therapy Physical Therapy physical therapy at least twice to three times a week if you can. The results can be amazing what do you have to lose? Fancy.

Tinker-Belle profile image
Tinker-Belle in reply toFancy1959

Thanks, Fancy1959. I was going to PT although I couldn't afford multiple times a week. However, I went to an MS specialist and she said I needed to hold off for a while, but it will be important again. She said my body needed a "tune up" first to be able to get me back to being able to handle PT. My regular neuro has recommended a DVD (Karen Voight: Pure and Simple Stretch) and/or looking up and doing some of her YouTube videos. So, I am going to try this although I haven't as of yet. Wishing you a lovely week!

Midgey_Midge06 profile image
Midgey_Midge06

I think occupational therapy is to help with every day things like finding ways to brush ur teeth and etc.

also on another forum i have read abot 2 people that had their houses redone to make it more “user friendly” for someone without mobility.

I am beginning to have those fears for my future as well. I just recently screwed up my left leg and cant stand at the bathroom counter without serious pain. Not sure what i wud do if i lost the use of my legs.

Tinker-Belle profile image
Tinker-Belle

I've thought about Occupational Therapy, too. I think they could be a huge help. I may have to discuss this at my next doctor visit in a couple weeks. In fact, I will. I hope your leg gets better soon.

greaterexp profile image
greaterexp

payingforseniorcare.com/lon...

I don't know if there is any help to be found here, but it may be worth a look. If nothing else, there may be links to types of devices that are available.

Wishing you the best.

And this is about home modifications:

payingforseniorcare.com/hom...

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