Do You Have a Wheel Chair Standing By???
 

Hi All,

Two times this past week, I have had to use my crutches to get around..bed to chair..bathroom,etc, because of a pain flare that I have been experiencing.
A wheel chair would have been wonderful to use, as my crutches are an additional pain to maneuver.


Do you have a wheel chair standing by for this reason?

I see my PM this Tuesday, do you think it is acceptable to tell him I could use a wheel chair during these horrid flare-ups, so that WC can pay for it?


I appreciate your reply.:grouphug:
Dew

I've often thought of it, DEW. But, the problem I have is, with the TOS, how the hell am I gonna propel the thing?
My brother took a fall two years ago, from a thirty foot ladder, and is parplegic(sp).
He went through months of upper body building to be ready for his wheelchair.
I know we both have small Thoracic Outlet's, or at least I do.
It'd be a butcher, to propel myself.......

Oh well, what else is new?

To answer your question, YES, of course, if you have a means of propulsion, by ALL MEANS!

Hope that you're well, Dew!

Pete
asb

why not an electric chair?
:)

Hi Dew,

Sorry to hear that you are in such a bad pain flare at the moment!:hug: I hope you get to feeling better real soon.

I have a wheelchair that I use usually for long distances and outside the house. I try and hobble around the best I can in the house, even though it is hard and really painful as I know that it is important to try and keep as mobile as possible. There are days though when I have absolutely no choice but to use the wheelchair to get from one room to another as my pain is too much to stand and my balance is so badly affected that I will fall over etc. My mum has made the house all wheelchair accesable so we have laminate flooring nearly all over the house so that I can get through in the wheelchair.

I think it is a good idea to have the wheelchair handy for the days you can't physically walk yourself. Just keep in mind though that it is extremely important that you keep as mobile as possible so limit how much you use it etc.

My mum had to pay for my wheelchair as the UK's NHS service wouldn't cover it. It was pretty expensive but it has come in really handy and I don't know what I would do without it sometimes! I really hope that your insurance company will cover it and realise that you need some additional help!

Take care and sending you many pain-free hugs!:hug:

I use a crutch to get around inside (I live in a small studio, so basically it's a few steps here and there) and have a manual wheelchair standing by or I use my desk chair in case I've walked too much and it's hard to get around. The other alternatives are staying seated for a few hours or to lay down for a few hours until it passes and my legs will cooperate again.

Outside, I can't get far and I need help, so I always use an electric scooter. Freedom!!! Unfortunately, my scooter broke down last year. So now I'm applying for a new one. The application process is a long one. My papers were filed December 16th. In March, we heard that it won't be reimbursed by one government institution (Riziv), because I don't have one of the 6 diseases they reimburse for (only 6 diseases are okayed and RSD is apparently not one of them). Now I have to wait until half of May for the other government institution (VAPH) to decide on whether they will reimburse a part of it. Until that decision comes, I can't go get one (unless I intend to pay for it fully). I've been cooped up since September / October last year when my electric scooter broke down. Not fun! And these things are so expensive, about 4.500 euro! I have no choice but to follow the application process.

Hello Dew,

I hope this week is better for you.
I don't see why you shouldn't ask you PM about a wheel chair. It will be there when you need it. I've thought about one. I have days where my legs and arms are very very weak. I fell last week I only bruised my arm. But it has me wondering how much longer I will be able to enjoy the freedom of my mobility. For me I'm being hard headed. My mobility is something I'm not willing to give into because of my RSD. I use a cane from time to time and it only makes my shoulders and arm hurt more but it helps me get around. Sorry to go on and on.
There is nothing wrong with having one on hand in case it is needed. What if you and your hubby wanted to go somewhere that required you be on your feet? It would be nice to have the wheelchair.
Take care of you,
Sherrie

For me it was another thing to have to get used to, a big thing, especially the manual wheelchair. I still *hate* having to be pushed around. I hate it! Whenever my mom took me to the shopping center in the manual chair (a few times a year), I had to be careful not to stare at young women and women my age who just walked wherever they wanted to walk, who were healthy and going about their lives. It was depressing! I can't and couldn't not do it.

So when I discovered the electric scooter, it was an entirely different feeling. I felt so free using it! It could take me wherever *I* wanted to go (well, at least to accessible places, but that's a whole other problem). My scooter was a fast one, and could be as fast as a bike at normal speed. I could use it at walking pace and biking speed. That's how I made "my walks" and did "my bike riding". It's how I interacted socially. That and my PC are my links to the world! I hope the new one gets approved...

Without the scooter, I have to depend on other people to get me places and even that's not easy with the wheelchair that has to be brought along and with there being far less room in the car for the groceries (so annoying). I still get grocery shopped for.

On top of that, I have great difficulty being in cars, because of my accident, I guess. I get fearful just being in the car and watching the traffic around me. I only trust a handful of people to drive.

If you guys have a chance to try out an electric scooter, just do it. The scooter is the only thing that can make me feel that my legs have been replaced to some extent, and it's a great feeling to have, it lessens the awful, desperate feelings I have as a result of having a disability a great deal. It helps me cope.

Dear Dew,

I hope these lines find your pain levels down some. Just a thought they have these walkers with a chair on it.:confused:

Some MD's will discourage you from a wheelchair, because they want you to keep moving the limb.

Can you get into pool therapy?

Hugs

dew
i dont as i have learned that i always have to push my self to keep walkin and dont and wont have that wheel chair again i have been there and done that.. i refuse to be back in that stupid chair ..i do have crutches if its that bad but i push as hard as i can to keep everything moving .. i know this hurts very bad most of the time but i have learned that it helps with longivtiy with the rsd.. just my opinion ..
and its not for everyone im very hard on myself

I had the pool therapy..after 8 weeks of it..I felt like I was building strength, and then the heater in the pool broke. 8 weeks have passed, and the pool is finally repaired. I know that some of my muscle building has been lost.

Hubby and I will be leaving for AZ this week to be with my sister who has been diagnosed with pancreatic cancer. We will be with sis and her family while she has surgery. My water PT will be put on hold at the Rehab hospital; however, it will continue in my sister's in-ground pool, in her backyard. Sis says the temps are really a dry hot heat, and I can swim day and/or night..so I will be working on me while I am there with her.

I had an opportunity to buy a new walker with the seat, at an auction..for $69.00. I foo-fooed that idea as I thought I would not need it.

Little did I know how RSD throws curve balls when one least expects. My legs have shown deodorization since 11/08, when I started to need crutches. I thought I was over-using them.

I see PM doc tomorrow..I will talk to him about this matter.

Thanks,:grouphug:
Dew

I'm very hard on myself too, but the legs just won't get far. I do move about and keep mobile as best I can and as much I can, of course, that's essential, but I can't get farther than about 10 meters without having serious problems and without repercussions. I can't stay upright more 5 minutes at a time if I want to keep moving the next few hours - I constantly interchange sitting and taking steps, can't stay seated for too long, can't stay upright for too long, so I constantly exercise in moderation as I call it. The absolute maximum I can stay upright for is about 10 minutes (I do often get a flare then, it slowly builds up from the inside and my knees start to burn). If I stay up for about 10 minutes, then I won't be able to get up for a few hours. If I can't get up the following few hours, then my legs stiffen up, which in term lessens my ability to get up and take steps. That's the toll of RSD... I have to pace everything. You can't do too much of one or the other. If you persist through the flares, you'll be in hell the next few days to even weeks! I usually am. This limited range of motion won't get you many places outside, trust me on that! Not that you have to quit trying!

my other thing is i have no choice with having young children and a family dont get me wrong at all there are alot of times that i am uncapable of alot things.. but when i am able to i walk as far as i can .. i guess that it just depends on the person for that tho.. everyone can handle different things. i just have it stuck in my head that i will not go back to a wheel chair period ..

carrie

Hi Dew,

I love the desert, I do much better there. I think it helps detox the body and cleanse the lymph system.

I am sorry to here about your sister being ill. When bad things happen to me and my loved ones, I look at it like I am in a storm, with a lovely rainbow at the end.

I am giving it a go, with building some muscle tone over the summer. One of my MD's told me she goings in the pool every morning before 7am. She shared she didn't feel like it but does it anyway.

Much Love, Roz

Hi Their,

I hope you don't mind me chimming in. I was bedridden for over 2 years of this RSD hell.

Trying to get back on my feet was very discourageing at times.

I had to go very slow, and not despise even very small beginnings.

Much Love, Roz

I think it depends on how bad the RSD is, most and foremost. I think there's enough people trying to push RSD and its effects off on weak personalities for us not to start hinting at things like that. I totally resent this implication. I don't think I have to defend myself on that account. I don't think I owe anyone, in particular another RSD patient, an explanation as to why I HAVE TO use a wheelchair.

by NO means was i attacking anyone i was giving MY personal account of my journey with RSD and that having children that are small has helped me be MORE moblie .. if you will look in that post its SAYS that i do alot of times have problems just like everyone else.. so im sorry if that confused you.. i also have full body and organ involevment and i think that i am lucky to have had this young and learn to live with RSD from a young age and to grow into it so to speak.. i am sorry that you felt that i was attackin you or anyone else .. that is all i was saying on my personal journey..
and never did i say that anyone was WEAK as anyone who has RSD is a very very strong person to have to live like this everyday PERIOD!!
carrie

Carrie, thanks for explaining! :) :hug:

Don't feel bad about about asking about wheelchair use. I have RSD in my leg and arm. I was forced onto crutches because of a wound on my foot that led to my inability to walk. Having RSD in my arm makes using crutches almost impossible. My insurance will not cover an ultralight wheelchair so I bought one on Ebay. It has been a lifesaver and I use it constantly. I've gotten past people staring at me, I stare back. I have come to realize that the wheelchair gives me back some life that the RSD and wound have robbed me of. Always put your needs first and never worry about what other people or doctors are going to think. Let them walk or roll a mile in our shoes!

Exactly. It's about living your life and having the tools to do so. If your body breaks down and has its limits, you try and find solutions.