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:

I only use my chair when I know I'll need it (one too many times being stranded in the middle of a mall), mostly I use my bilateral AFOs and crutches. I will not go quietly into that good night...

I have very mixed feelings about my chair, even now. I fought it as long as I could and IMHO I think that kept me going mentally. The first time I voluntary said "get the chair" was after I should have been using it for 10 days. Needless to say my dear husband just smiled but (intelligently) did not say I told you so. (those sticks may be light weight but I have good aim!)

I would advise that (with Medicare) you get a manual chair first. Medicare will not pay for a motorized chair and then later authorize a manual. They see wheelchairs as something to help you do daily living skills IN the home only. Stupid rule, but true. Now we know people who use w/c need and want to go outside the house every so often (duh.. to Social Security and MD appts, buy food, visit friends) but they only approve for needs in home. They se no reason to downgrade from something that gets you around (the powerchair) to a manual w/c that gets you around. In other words get a manual when you are ready, then later your doc writes you have worsened and now need the added aid of a powerchair. Most docs know about this rule and happily comply. You will thus have both which can be a big help. Thiose powerchairs are heavy and need planning (and often a lift) to put in a car. I also suggest a ultra-lightweight manual chairs. I like a folding one so I can throw it in the trunk or store in coat closet.

I personally have bit**** enough that my family has learned how to push me correctly most of the time. I prefer to push myself, but my arms are wearing our so it is not always an option for me.

Chirs are/can be really pricey and I highly sugest you get fitted for one by a certified person - not just the any old DME salesman who sells chairs. It makes a world of difference in 1)comfort 2)independence and 3) endurance.

Finally, I was told by my trusted PT this: when you think of IF you might need to get one, it is past the time you should have gotten one. Turns out he was right in my case.

Finally, I was told by my trusted PT this: when you think of IF you might need to get one, it is past the time you should have gotten one. Turns out he was right in my case.


thank you

this thought has been bouncing around me hollow gourd big time, thank you every ones view and insight is so very much appreciated, i too like st christian shall not go quietly into that good night...

think it was st christian, well it sure helps to see im not totally a freak about how I am thinking,,,, no comments from the peanut gallery

No comments here. I was a Cicero Freak.


lol

yes Kicka, that's true.

there's other options as well... my very first was a little Rascal scooter, with a basket, got it for $500 through a classified ad, for shopping (this was before the stores in my rural area started to get scooters, back in the early 90s)

I needed help disassembling it, and hefting it into the car trunk, so I couldn't use it when I went out alone. (and I didn't have the money for a trunk lift at the time, and my insurance would only pay for that if I was TOTALLY disabled, not partially, or only needing the chair part-time.)

then, there's the "lending closets" at many local MS chapters, and disability groups, they often have waiting lists, but it's always worth trying for durable medical equipment, like shower chairs, and portable commodes - which we needed for my mom after she had a stroke.

that's where I got a collapsible stroller-type chair (a godsend in places like airports and malls!), from the local MS chapter.

later, I got a "regular" manual chair, and when my arms got too weak (for a while) to roll myself, I finally graduated to the powerchair.

oddly enough, after going through ALL the hassle to bring that powerchair to a foreign country, I haven't needed it once, in the last four years.

:hug::grouphug::hug:

Frank, believe me, I understand all the conflicting thoughts and emotions over this, as an independent strong woman, it was a huge issue for me.

but I did it in little steps, and now have finally come to some sort of acceptance that I cannot predict, cannot know, and cannot even guess what will come next, so I just have to let GO of worrying, because it won't change a thing.

and I'm working on it still, dear!

:grouphug::hug::grouphug:

I had a wonderful..:rolleyes: response, all typed and ready to punch send, when my DSL went out again..:mad:

I so understand what you're going thru. I was lucky and took the transition from walking full speed ahead to cane, to seated walker to outside scooter, to inside scooter to crapola..:D

Kay is right, Franky...get over yourself and use everything that's available to help you live your life to the fullest. You will be happier, believe me and your family will be less fearful of your falling and stuff.

Good Wishes..:hug:

A question to our wheelchair user MSer's
 

Hi,

I kept checking out this thread and even though I'm a newbie here, I wanted to share my thoughts-Ive been a little nervous, especially to a wise elder.

I can still walk without something, but after my first relapse, started to use a cane to reserve energy. After my second relapse, my doctor told me to never leave the house without it, occasionally in the house I forget where I put it or walk a little without it, but there is always a wall or furniture I can put my hand on. I have a lot more fatigue and pain. Within the past year, I have made friends with another mser-she's had it over 21 years and uses a walker and a scooter and occasionally a wheelchair. She uses the scooter primarily outside and takes it apart and puts in her car. She's now lives by herself and is very independent.

Anyway, I'm rambling. She talked me into using a walker and a scooter. I use the walker more in the house-especially carrying things. I don't use it a lot-but when I do, I really notice the difference. My son and I went to vote, it was his first time. We took my walker and he pulled me backwards as the line moved and I conserved my energy.

My friend is a movie reviewer and she takes me too a lot of premiers for free. When we go together. She uses her scooter and I use her walker. Again, I'm less tired and I have less pain.

For longer jaunts, I use my scooter. My friend taught me how to take hers apart and put it in the car, so by the time I got mine, I had no problem. I still walk with a cane more. I don't use the chairs in stores unless I'm going to be in there for awhile.

It's a long process. I'm weaker on my left side and I still haven't found the right combo of meds for the pain-I've maxed out on most of them, but my friend was right-utilize the equipment that's out there, that's what they are there for. I don't use them enough. It took me a long time to even ask for a handicapped parking tag.

It's the stigma of using all of this stuff, but they do "work" for you when you do use them and they make a difference.

I know this just repeats what the others have said, but I kept on coming back to this thread and I wanted to share my thoughts and experiences. Hope this helps.:)

Pat
Dx in 8/05, on copaxone since then. Officially rrms, but I think I'm spms. My doctor doesn't want to change it, mostly for insurance reasons

thank you Doxie, and i am pretty sure it should read wise glutismaxiums:rolleyes:,

probably should of posted this a few weeks ago maybe next time I will try a chair

yes the stigma is sort of bothering me, I truly appreciate every ones opinions its helping me think some of this through in my head.

Thanks Doxiemomma, I really enjoyed and appreciated your post.. :hug:

I used to be a doxiemomma to 2 longhaired mini doxies.:D

I use a pwer chair, but right now just if I have to walk farther than drive way. Sometimes I use it everywhere, if I feel myself falling all the time.

I could walk(barely) with my Rollator last January, everything seemed too far away in house for it to be worth the effort. Didn't want a chair but got one anyway. Wow, what an aid!!!! Zoom around everywhere now, every room downstairs, by the end of the day my battery is really low. I get more done. Some say once in a chair, never get out, so I'm sure to stretch my bad leg hamstring (couldn't unbend my leg for awhile after being in chair all day), can toilet self and use standing with grab bar to practice putting weight on bad leg because for a trial coming up , have to be mobile. I love my chair. I can zoom onto deck. go down ramp DH buildt (way too steep. it's like a rollar Coaster to me)Go around pool, see the butterflies!! It's a tool that's given me freedom. Walking is over rated if it's that hard to do and really took freedom from me and imposed limits)

Can let dog and cats (5) in, out, in, out (You know how they get - yard fenced), make microwave lunch, was willsome dishes if I have too, answer door (after looking out and making sure it's not the "mugger-masher".) I have a party soon to go to, will just use my manual and DH pushes. Yeah, some people have trouble not looking, but I can get a beer.

My use of a power chair was a simple matter of being practical. When I became eligible for a chair under Medicare, I applied for one. At the time my mobility was only a little bit compromised, but I did have to opt out of any activity that required standing and/or walking for any length of time. I wanted to “hope for the best and prepare for the worst,” and I wanted to be proactive. As time went on, I needed to use it more and more, which was upsetting, but I think that the grim facts were softened because I already had solutions in place. It made me feel in control, if that makes any sense.

Since I started taking LDN, I have not needed to use my power chair, but I would in a second if it meant that I could participate in an activity that I would otherwise have to pass up.

thank you jmiller marion and kick, thanks

as is my nature, I lost track of what has already been said.

Various chairs and scooters are available to rent. I was talking to a friend and he said it costs $75/week. It is a good way to see what you like.

I think there are three questions (for most of us)

1 will an aid (like a wheelchair) help me do what I want to do? What aid would best help me and where do I get it?


2 Do I see this as "giving in" or "reaching out"?

3 what snappy comeback will I use to repell any lookie-loos? (BTW we are really good at supplying examples)

Seriously, YOU have to decide when you are ready. I think you can tell that it is a very personal decision and not always one reached without angst. I wish you peace with your decision, regardless.

Now, what color will you be selecting;););)

I think he should go for a Harley Davidson look since he already has that look. I see black with a nice orange and racing stripes and Born To be Wild playing on his Mp3 with speakers attached! lol