chicolini910 19/11/17
Last reply 5 months ago
Wheelchair transition

Is there anyone out there that has had to transition (slowly) to a wheelchair? How hard was it for you?

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bok2bjan
5 months ago

Hi @chicolini910 – I’m at that place in my MS journey. I use canes, arm crutch, and walker – but have made an appointment with the wheelchair clinic. First available is in January. I’m struggling with the fact that I can still walk – most of the time – but sometimes the numbness and weakness in my right leg and foot are too bad to bear weight. Plus balance problems cause falls (and tripping over stuff). I can’t walk any distance without severe back, hip, and leg/ foot pain.

I only qualify on my US Medicaid – for a wheelchair used in the home. That’s where I need it the least – altho even in this tiny home, I dread having to “walk” to the kitchen from my bedroom! I really need it when out having to walk any distance – but getting it to my car, in and out of the car – in and out of the house (with stairs) – seems impossible! I live alone, so it’s up to me. Basically – I fear losing my independence. Plus I’m trying to train my own service dog, so would love to have a motorized chair to take her for walks.

SO – it’s a tough time. What’s your situation? I assume you too are facing this as well. What type chair do you qualify for? Questions, questions, lol. But it’s nice to not feel alone when facing change. I hope we can chat about it. Blessings, Jan


bok2bjan
5 months ago

Hi again – just saw your profile – I paint as well. I started with oil, but now do watercolor. Specifically – watercolor portraits of pets. I love doing pencil drawings as well. I got my first symptoms and lesions in 2000 – but wasn’t dx until 08. Crazy thing – I had so many other autoimmune diseases – my doctor never suspected MS – even tho I had obvious neurological events – TN, foot drop, and several other strange things. Mine is SPMS – is your neuro sure yours is still RR? Blessings


Anonymous
5 months ago

@chicolini910 hi I’m at a very similar place to you & @bok2bjan I can still walk but it’s painful & the distances before the pains too much is getting shorter. I got a wheelchair in April this year. I primarily got this so my partner & daughter could get out more easily & I could go further with on my own. I didn’t get on with it as my arms are very weak. I’m looking into a mobility scooter now.

All the best,
Craig


mmhhpp
5 months ago

Hi @chicolini910 i am in a mobility scooter user full time and i am really happy about it. The transition was awful. Walking slowly with a walker , arms getting tired going into panic mode and unable to walk few steps to sofa made my life miserable. I have 2 kids we barely did go out and when out I would stay inside car while them in the park.

Now it is great! They are on bikes and me on a scooter we can do and go to so many places!

I regret not have taken decision earlier!

It’s not the end being on a wheelchair there are other aspects of ms more challenging and upsetting believe me!

I hope you find the best solution!

Take care xxx


mmhhpp
5 months ago

Oh! And like you i have been on gilenya from the start and it has not stopped progression 😒


grahamjk
5 months ago

Hi @chicolini910 I can’t speak regarding a wheelchair but if I go anywhere that requires walking any distance I use a scooter and although sometimes I feel a bit of a prat, I know I have to use it so if I look silly on it, tough.


bok2bjan
5 months ago

I totally agree that it actually helps those we’re with too – since they don’t have to go slow, or not do things with you. I wish I could get a scooter or electric wheelchair. But alone, I don’t think I could get it in and out of the van. Can’t afford all the fancy equipment unfortunately. Makes me sad. I want to be able to go to the zoo or walks with my grandkids and kids. And walk my dog! Sigh..


edgarleroy
5 months ago

It’s a tool to help you get around. It can be a big help as well as being necessary.


spooney
5 months ago

spooney
5 months ago

The only good thing about being in a wheelchair is that a pair of shoes now really do last a life time.


chicolini910
5 months ago

Thanks for all the feedback on wheelchair necessity. I suppose I should make more use of my scooter and make my husband carry it around in and out of the car.

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