jcorvec 28/03/18
Last reply 2 weeks ago
Canadian Mobility help

Hi I tried not to have to ask all of you about this but I can’t get very far in my quest by myself. It’s that I am having so much trouble standing or walking and will need to be in a wheelchair just to go to my kitchen soon. I am trying to find out that if I am in that state, what do I really have to do to stay in my house? Really, the logistics are scary and no one wants to talk about it. I found a USA website with info on modifications that was the most helpful thing I found so far called Infinitec. The government of my province in Canada wants to help people to stay in their homes longer but information and service is limited. I have heard ‘professionals’ mention a lift machine lately, and no one ever said this before. I am trying to find out this kind of stuff. I thought workers were willing to do personal care more, as I always did this when I had jobs.
Maybe this website, which I love, is only for people who are still doing well? This is all I read about in all sites – never any info about people who have advanced MS. I am sure many are at home….
I appreciate any help you can give me. Thoughts, info. I do not believe I have to be put away in a nursing home at the age of 48.

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rachaellouise
3 weeks ago

@jcorvec – sorry you feel that way. It is a website for all people with MS!
It ain’t all sunshine and rainbows 🌈 I’m sure for all of us at different times .
It’s definitely hard for me at times really hard. Such as being bed bound in 2015 so it’s real tough at times!

I’m sure @stumbler will be along shortly as he might no rules on house modifications etc

Take Care

Rachael x


stumbler
3 weeks ago

@jcorvec , we’d like to just discuss the positives of MS, but that would not be realistic. So, we do discuss some of the harsher realities of this condition.

I’m afraid I have no knowledge of what is and isn’t possible in Canada regarding Welfare support. However, and I hope you don’t mind, I have altered the heading of your post by adding the prefix “Canadian”, so that we can add a bit of focus.

@melissa.g , are you able to provide any advice on this topic?


grandma
3 weeks ago

Hi jocorvec, like Stumbler I don’t know what is available in Canada, but here in U.K. we have local councils who are responsible for initiating help, I have just had ‘through’ lift installed at their expense “I have no money” and they are installing a large L shaped ramp at the front of my property so I can get electric wheelchair in. I consider myself very lucky, it has take over a year to get these changes made (councils don’t move fast) but they’re object is to keep people in their own home. I have had to sign a form that I have no intention of moving for 10 yeasts, in which case I will have to repay some back, well as I have lived in this house fir 41 years, and they are carrying me out in a box! Well only as far as the University Motuaru cosby oso m brain and brain stem are going to the MS spciety for research so they can hopefully help.more people in the future with this horrible disease. But I digress, you need to find out what is available in Canada through local MS society, charities, anyone else you can think of. Good Luck😍 Jill


jcorvec
2 weeks ago

Thank you so much, Jill (grandma) and Stumbler. Any info from anyone on Shift MS is really ‘gold’. I am still trying to find help with a ramp here, have been trying to find help for over a year….Even knowledge of how to get care when you stay at home is so hard to find out. Govt wants me to stay at home but is reluctant to help with any modifications or funding, or to even say what you do at home if you can’t move or stand. I worked many years in care homes, so I know what goes on in homes, but what goes on if you’re at your house, and have no relative to do your care? They send girls from companies who just stand there while you do everything yourself, so what happens later? ??.


jcorvec
2 weeks ago

To Racheallouise, I did not mean to be rude. That was not my intention. I think this is such a good website for people with MS. You said you were laid up in 2015….I want to know if I have no relative to help me when I am more laid up, and I can’t afford to pay a full time attendant, then what? I have a ‘lift chair’ and a commode, for when I am in the next stage. What did your do for help when you were in that situation? I would have sent you a private message but we are not connected. Thanks for your help and support.


rachaellouise
2 weeks ago

@jcorvec
yes I was very lucky to have the help of my husband but it wasn’t easy mentally with him doing everything and me being forced to learn to let go of that and let him take care of me …
So it was really hard …. I still find that a struggle … as I do less, probably too hard on myself! I’m Used to doing the caring… I’ve done it all my life since childhood with my parents who expect that from me … it’s never been the other way round …and it never will be , took years and much heartache to come to that conclusion and it still hurts now. ! I need to focus on my blessings and be grateful for those.

Yes I know it must be difficult in your situation.. your right to not want to go to a nursing home at 48 or any age it’s scary thinking of it. I like you have worked in nursing / care homes when younger and I know why you feel this way and it is scary… I’m not saying all bad but you see some things . So I know the fear you have !
I don’t think you should have to go and fight all you can to stay in your home … keep fighting you can overcome it , you have us here on your side for support, your not alone.

I think we all have ms and I think the main thing is to support one another…

Sending love your way

Rachael xx❤️

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