A question to our wheelchair user MSer's
 

Hello folks, I gots me a question concerning wheel chairs, actually a couple questions, I have been slowly losing the use of my left leg, and my concern is, how did some of you end up in a chair, slowly or fast.

Did the decline build up or did it hit you after an MS relapse? Like I said I am a bit worried, my left leg seems to be hurting more, walking on it is still hit or miss one day good a few days bad.

I am curious, and maybe I can gain some insight as to how and or what might happen to me, and or what to expect. I am a bit scared, still to stupid to use the chairs at the stores, same ego carp that I had and some others had when they first succumbed to using a cane. oddly as i sit here typing i guess I am still trying to hang on to who i use to be physically

thanks

even folks in those hover round chairs I would appreciate some feed back

*bump* :D

I was only in a wheelchair for a little while each time, Frank, but it was due to "knock me over within a week relapses" that I eventually recovered from. It was just a manual chair that other's used to get me around ... because I didn't plan in staying in it for long. :mad:

Have you tried upping your LDN past 1.5mg since the first time?

Are you doing physio? Do you know if you are secondary progressive now?

Cherie

Frankie-me-boyo... first off:

in this politically correct world, we chair-users prefer not to be labeled as "chair bound"

:D

Do not use "wheelchair-bound" or "confined to a wheelchair". People see their wheelchairs as a convenient mode of transportation, not prisons, and the "bound/confined" phrase belies the fact that many people with motor disabilities engage in activities without their wheelchairs, including driving and sleeping. The proper phrase is "uses a wheelchair" or "wheelchair user."

http://www.capegateway.gov.za/eng/pu...c_info/D/91149

I like to think of myself as a "user" because at this point, I need the chair only for distances over 1/4 mile cumulative.

less than that, I use bilateral AFOs, and a cane.

when I needed the chair fulltime (most of 2002), it was a sudden result of a big ol' whammy of a flare, that knocked out the use of my entire right side.

thankfully, I already had a powerchair (from previous flares), the only necessity was switching the arms, to make the joystick be on the left.

I can't tell you what to expect, because the course of MS is always different.... but I can share some tips:

one suggestion, try to get a chair before it's an absolute necessity, because then you'll have it on hand.

because sometimes the insurance approval and paperwork can take *weeks* and if you need it, you really NEED it.

I prefer a power chair because I'm very independent, and dislike being pushed.

(also, I'm a backseat driver, and a wee bit controlling, so...)

:o:D:o

oh, and don't think of it as "succumbing" but rather, as an AID and assist to having more energy and less pain... think of a chair or cane as FREEING you to do MORE, and have a better life.

and start using the chairs at the supermarket for heaven's sake...

you will find that you can shop longer, and be less grouchy when you're done, ending up relaxed and smiling, rather than fatigued and numb and maybe even hurting.

:grouphug:

your family NEEDS you to be the best you can be, and by allowing assistive devices (and dropkicking the selfish ego carp) your wife and kids will see more of the Frank they love.

:hug:


ooops, sorry, I sound JUST like a big sister, don't I?

:p

no you sounded more like Deb lol, My apologies to all who use wheel chairs or hover rounds, didn't mean any offense with the terminology I used.

Thanks Kay and Cherie, I have been thinking about upping the dose Cherie, just hesitant because 3 mg really made me tired. Kay I know I need to try using the chair, its just really hard. I am not ready for it mentally, I am really having a hard time with this and am not ready, what ever you want to call it, I don't know, ego is a problem but its more than that, embarrassed, ashamed, at almost 47 years old this wasn't in my game plan, I know none of this was in any ones game plan, not even sure i could look deb in the eyes using one of those at a store,

like i said I am having a tough time on this, more so than the cane. this is almost like an admittance, a form of finality, yeah I know I'm being ignorant in some regards, but regardless of my ignorance it is the issue i have to circumvent, I'm scared.

thanks for letting me get some of this out

that's what we're hear for, my friend!

but Frank, surely you don't think that I followed my own advice, did you?

:p:o:p

in a perfect world, I was just pleased as punch to be using a w/c, mentally adjusted, serene, and carefree.

bzzzzzzzzzzzzttttt... (lies all lies !)

just remember, I've been dealing with this charming dis-ease since 1988, so I'm sorta telling you about how I WISH I had handled it, in my past-gazing rose-colored glasses.

I sulked, I cried, I whined, I futzed with the leg rests and foot rests, often pinching a finger (and uttering choice epithets!), trying to make the darn thing comfortable.

the chair made my back ache, and I tried pillows, behind, and under... wah wah wah...

and I *detested* having someone push me, and them not paying attention (think... an idiot trying to back up a car with a trailer attached, for the first time), and not realizing just how much length they're moving, or how far ahead they have to plan.

I've been dumped out of the chair into the street, when the curb dipped suddenly... had my feet smooshed into table legs, walls, doorjambs, and railings...

had way too many challenges, living in a historic Gold Rush town, with accessibility-code violations 4 times per block... no elevators, etc. etc.

so, I got a power chair, and then I was happy, because I could drive myself (YAY !!)

and rode happily ever after, into the sunset, toking and grinning...

:D:rolleyes::D

Thanks Kay I needed to hear that, I have many feelings and thoughts running a muck, in me hollow gourd. Just the way the leg is lately has me a bit concerned. Like you posted Kay get started on chair, in a way I think that's what I am doing because walking distances really bites lately. Thank you Kay:hug: ......I'm a joker I'm a smoker I'm a midnight toker I get my loving on the run.....

Cherie the thought of trying 3mg has been discussed by Deb and I a few times lately, I bumped it to 3 tonight deb and I discussed what you had typed, worth a try, if I recall my leg was the one thing that was bugging me b4 LDN, real bad, it was also the longest SX to show any relief, so I shall try three mg and see how things go, Thank you Cherie:hug:

I already know what kind of chair that I want if I ever end up having to use one. I have an idea for both the manual and a motorized (depends on which kind I'd really need) Hopefully my insurance will allow me to get the thing all schnazzed out with custom paint jobs, and rail guns...

Erin, check what insurace will give. I didn't was told about a greart chair doing stuff I wanted, but price of it and what insurance would allow (they called it Durable Medical Equipment - DME) WAY different.

Frank, Jim started using a scooter at first to get around at stores or places where walking was a task for him. They are cheaper too. Eventually he went to a power chair because the house was against him and after several broken bones and stitches made to look like Frankenstein he gave in. He could still walk a few steps when he went into kidney failure which wiped out his muscles and went into the chair 100% of his time.

If your concerned, that's normal. :hug: Maybe go for a scooter at first and see how things go from there. Remember if you are walking and your legs are not helping do that task your actually harming yourself and possibly putting yourself in danger. Use it as you need it at first. It doesn't mean your going to stay in it. It will actually give you more energy and less pain to do things longer when your out.

Plus, my house is fully wheelchair accessible so bring it on! You and Jim could have races down the street! lol

yeah just like Cindy hers is fast I'm sure she modified the governor on the carburetor:rolleyes:

having more strength I an see with no problem just i dont know i do know maybe later i will call you and say what i dont want to say here, oh boy wait till deb sees this thread Thank you Sandy:hug: