At what point is a wheelchair a necessity?

[bizzylizzy06]

I have been in a slow but steady decline since around October 2015. I was happily walking my dogs 2.5 mi/day & now I can't. I tried last Friday night & by Saturday morning, my right quad muscle (muscle right above the knee) was SOOOOOOO swollen with the deepest of bruise on it...all from over-doing it.

Ive been feeling SO blahhhh & I was diagnosed with Hashimoto's Thyroiditis in late March. Last Friday, I finally got fed up with just lying in the bed all day & I spent all Friday up doing stuff I need Ed to be doing (including walking my dogs 2.5 mi) & I ended up having to go to the ER on Sunday because my right thigh hurt SOOOO badly...While I was at the ER, they checked my CK enzyme (enzyme responsible for muscle destruction) & it was high; meaning the muscle is destroying itself. Im so scared. I'm at the point, I fear I'm gonna have to use a wheelchair just to get around.

For those of you in wheelchairs, what was the final push that got you there? Did your muscles hurt when you walked? Did your muscles totally give out on you? What was it?
Thanks!

[zilphia01]

still want to do it all

I still want to do and be what I was before this (bad word here) disease took it from me.

With a wheelchair I can still get to my classroom, I can still teach, I can still have energy to make it until the end of my day. I can still shop for groceries for my family, I can still........

Hopefully you get the idea. And when I can no longer do those things, then I am hoping the wheelchair will help me find new tasks I can do, or do in a different way so that I feel like I am participating in life.

Good Luck

karen

[palmtree]

If you can walk your dogs 2.5 miles (even if it does land you in the emergency room), IMHO you are not likely to need WC any time soon. Of course, we never know when a flare or an injury could mean its time.

I like bizzylizzy's approach. Using a wheelchair as a strategy so she can devote her time and energy to things that bring her life meaning and fulfillment. It's a way of conserving energy.

When it's time is a very individual decision. If being able to walk is the most important thing for you, no matter how much you struggle, then WC is not for you. I may be one of those people.

But, I really like Lizzy's point of view. It seems like learning how to maneuver the contraptions is better to done when it's not an emergency, when you are not in a flair.
When the time comes that I need one, I would like to already own one, be able to do tricks in it and have my car set up so the chair can go with me.

[poppydarling]

I have been in a slow but steady decline since around October 2015. I was happily walking my dogs 2.5 mi/day & now I can't. I tried last Friday night & by Saturday morning, my right quad muscle (muscle right above the knee) was SOOOOOOO swollen with the deepest of bruise on it...all from over-doing it.

Ive been feeling SO blahhhh & I was diagnosed with Hashimoto's Thyroiditis in late March. Last Friday, I finally got fed up with just lying in the bed all day & I spent all Friday up doing stuff I need Ed to be doing (including walking my dogs 2.5 mi) & I ended up having to go to the ER on Sunday because my right thigh hurt SOOOO badly...While I was at the ER, they checked my CK enzyme (enzyme responsible for muscle destruction) & it was high; meaning the muscle is destroying itself. Im so scared. I'm at the point, I fear I'm gonna have to use a wheelchair just to get around.

For those of you in wheelchairs, what was the final push that got you there? Did your muscles hurt when you walked? Did your muscles totally give out on you? What was it?
Thanks!

It is such a personal decision. I struggled (unnecessarily , stubbornly, fearfully) for a long time, but my decision was made when I could no longer walk my dogs at the greenway, or walk around a massive big box store to do my shopping or a mall etc. without being absolutely exhausted just by the exertion to get to the activity or perform a small amount of the activity.

It struck me that I was struggling when there was a device (travel scooter) that could help me be relaxed and energetic (somewhat :-)) when I got to where I needed to go, so I could just worry about having fun and getting things done. That's not to say that wasn't a big emotional and psychological adjustment which continues to this day but I know for sure I'd still rather participate in life then sit home simply because I'm not able to use my legs very well.

[Fishytrout]

Hey bizzyizzy06!

I have been in a slow but steady decline since around October 2015. I was happily walking my dogs 2.5 mi/day & now I can't. I tried last Friday night & by Saturday morning, my right quad muscle (muscle right above the knee) was SOOOOOOO swollen with the deepest of bruise on it...all from over-doing it.

Ive been feeling SO blahhhh & I was diagnosed with Hashimoto's Thyroiditis in late March. Last Friday, I finally got fed up with just lying in the bed all day & I spent all Friday up doing stuff I need Ed to be doing (including walking my dogs 2.5 mi) & I ended up having to go to the ER on Sunday because my right thigh hurt SOOOO badly...While I was at the ER, they checked my CK enzyme (enzyme responsible for muscle destruction) & it was high; meaning the muscle is destroying itself. Im so scared. I'm at the point, I fear I'm gonna have to use a wheelchair just to get around.

For those of you in wheelchairs, what was the final push that got you there? Did your muscles hurt when you walked? Did your muscles totally give out on you? What was it?
Thanks!

*********************

CK does not cause muscle destruction it is an indicator, found in the blood stream, that is present if muscle damage has occurred. It is not specific, so will not show what muscle group. Some medications can cause a condition that is harmful for muscle tissue. Don't just worry about your ER visit please PLEASE follow up with your Primary Dr.

I don't think you are experiencing things that would "point to needing a wheelchair". What I do believe is that you have something going on physiologically and thus psychologically and it is greatly effecting your M.S. which is putting you in a BAD FLAIR.

Good luck amigo.

[CraigBowman]

Craig

The deciding factor for me is fear. I was walking 2 miles about 6 months ago, but now after 100' I am stuck. Got stuck running a quick errand in a store. An employee asked if I needed medical help, I explained I was just resting.
I've been avoiding going out for a month now.
I think THAT is the decision process for me.

[jjs]

Don't just worry about your ER visit please PLEASE follow up with your Primary Dr.

I don't think you are experiencing things that would "point to needing a wheelchair". What I do believe is that you have something going on physiologically and thus psychologically and it is greatly effecting your M.S. which is putting you in a BAD FLAIR.

I second that.

I use a wheelchair or electric scooter thingy whenever I am at the big stores (Sam's, Costco) or other places like the zoo when a lot of walking is required.
I avoid regular shopping as much as possible (send my child) but if I have to go it's for a few things and I lean on a cart.
I CAN walk, usually, but it takes every ounce of energy out of me and sets me back to where I have to rest the next day or two (or more). If I have to walk, I go very slow - which seems to zap less energy out of me.
This coming from a person who was very fit, very active, until about 5 years ago.

[Thinkimjob]

Well, when you really can't walk, even with a wheelie walker, the hello wheelchair.

I can kinda do walls, if needs must, but... Currently Lord love 'em, got the supermarket Online order and deliver; yes costs $5, hey ho. He carries it in. The pharmacist sends someone out with my weekly drug dose.

Rollators suck. They are heavy. You've got to lift them in and out of cars. Up the kerb, down the kerb.
Maybe I'm just stuffed.

[Jim-T]

Struggling with the Wheelchair Question

I am struggling with the wheelchair question. I get around the house using a walker. I also use a walker for short distances outside, such as going into small restaurants. For anything else, I use a scooter.
Stability is my problem. I’ve fallen at least four times while using my walker. Fortunately, all my falls ended in either soft landings or only slight bruising. I know that I am less stable with my walker than I think I am because people, even strangers, sometimes try to grab me to prevent what they see as a near fall.

My other problem is fatigue.
I need a power wheelchair since my left arm is so affected by MS that I go around in circles when I use a self-propelled wheelchair.
The benefits of a power wheelchair are (1) reduced risk of falls and (2) possibly less fatigue. The disadvantages of a power wheelchair are (1) further deconditioning of my muscles and (2) more inconvenience in moving around the house and (3) adding a ramp to get in and out of the house.
Finally, of course, I struggle with the (foolish) stigma that a wheelchair is simply giving up to MS.
I know no one can make this decision for me. I just wonder how other people cope with it.

[dastardly]

Hi Guys this can be an emotional decision and is different for everyone, the need to use a wheel chair or not use one can often be a choice of pride, well it was for me, it was like I was giving up until I bought mine and got off my "arse" so to speak, the chair for me was not tying me down but giving me freedom and you save a lot of energy not drawing yourself around, but my choice was made easy, I just couldn't walk, things I learnt using a wheelchair, you are at bum eye level, always we are gloves there is more dog do/do on pathways than you would imagine and just shrug off people telling you you don't really need a wheelchair when you put yours in the trunk and drag yourself back to the car seat. I was only in one for a few months the dr's and drugs got me moving again but it is in the spare room and I have no doubt I will be using it again, and they are great for long days out where normally you would need to go home to bed good luck Craig

[poppydarling]

I am struggling with the wheelchair question....
The benefits of a power wheelchair are (1) reduced risk of falls and (2) possibly less fatigue. The disadvantages of a power wheelchair are (1) further deconditioning of my muscles and (2) more inconvenience in moving around the house and (3) adding a ramp to get in and out of the house.
Finally, of course, I struggle with the (foolish) stigma that a wheelchair is simply giving up to MS.
I know no one can make this decision for me. I just wonder how other people cope with it.

jim-t, I relate to all of these mental/emotional struggles! And I think I had these struggles every time I moved to a different mobility aid. Ultimately, I realized that my emotional struggle would have to be dealt with, but not before my physical safety and comfort. And yes, the stigma of mobility aids is real, but what's more important is your ability to participate in life.

People are killed every year when they fall and hit their heads – it is one of my biggest fears even though fortunately I keep coming down in a well-padded landing thanks to my love of carbs It's just not worth risking, inside or outside your house.

As someone recently said, making any positive choice, even if it's not perfect, is not failure. Ignoring a situation when it stares you in the face is That was me for quite a while but not anymore.

You can do chair exercises to keep in condition, and I had volunteers from a local nonprofit (Building America) build a ramp for me. You could check with your local United Way to see if there are similar services in your area. The scooter has saved my bacon and allowed me to continue to do things that I enjoy. If the alternative is sitting home, I'll take the scooter every time!

[kmallory1]

A very wise occupational therapist told me not to confuse mobility with an exercise program. I was resisting moving to a power chair because I felt that I would lose what little walking ability I still had.

After thinking over what she said, I realized I was not doing things because the effort was too great. With the chair, I'm moving around all over the house all day, which I had stopped doing.

Emotionally it's a hard transition.

[Jim-T]

You're Right!

Hey Poppydarling,
I know you're right.
We're going on vacation for a couple of weeks and I rented a power wheelchair to test it out.
If it works well, I'll talk to my Neurologist during my November appointment about getting a chair through Medicare and my insurance.
Thanks for the good advice.

[Limbolisa]

Is your Hashis being treated correctly for instance proper T4 and T3 meds in a hypo swing or hyper swing? If this isn't being treated properly fatigue can be horrible and low Vitamin D often occurs with thyroid disease which can add bone pain on top of everything else.

[poppydarling]

Hey Poppydarling,
I know you're right.
We're going on vacation for a couple of weeks and I rented a power wheelchair to test it out.
If it works well, I'll talk to my Neurologist during my November appointment about getting a chair through Medicare and my insurance.
Thanks for the good advice.

You're very welcome, and good for you: enjoy the heck out of that vacation! You deserve it and you deserve to be as relaxed and energetic as possible so you can enjoy every minute. Let us know how the power wheelchair works out!