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Which POTS patients use wheelchairs  

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Hi all, just wanting to get an idea of who uses wheelchairs and when. Janine's post got me thinking. I really don't want to use one but I bet I could do a lot more if I wouldn't be so stubborn and just use one. I just can't seem to bring myself to do it :rolleyes::D It's silly I know.

Thanks,

Danelle

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Hi,

It took me 2 years to accept to use a wheelchair. I had so many fall injuries that it was ridiculous. I would also never leave the house alone. Now I can go for a ride alone and eventually and want to take the bus and go shopping alone. I like to be able to go somewhere ALONE and leave and come back when I feel like it. The first few times are the worst but then you kind of get adapted.

I don't see myself as disabled but as a normal person sitting in a chair to do her stuff. People are much nicer to me than when I was doing my stuff standing up. I have more help from them. It makes a great difference in my life.

Ernie

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danelle et al -

i answered "whenever i go out" in the poll but honestly there wasn't really an answer that fit for me exactly. perhaps i should have answered "only in stores" but it's probably somewhere inbetween for me. it totally depends on where i'm going, how i'm doing, etc. right now i'm limited to using one where there is one provided, which means i simply don't go a lot of places b/c i can't. but i was actually fitted for my own last week so once it goes through all the insurance bureaucracy i'll have more flexibility in terms of where/when to use it. i never used one outside of a hospital or an airport until going to vandy this year & my reason would have been - for many years - the last one...the one about pride & whatnot. now that i've "bit the bullet" it's really been refreshing. still hard. and will be harder at times depending on the setting. but when i was at vandy i had a revelation of sorts & realized how it might allow me to do things i haven't been able to do in ages...go to the mall, a museum, etc...and how silly it is for me to not do so just b/c of my pride, ego, etc. i also came to realize that it actually looks a lot less weird to be in a wheelchair than to be crouching or laying on the ground, which i have done on a consistant basis for years now.

a few other thoughts...the few times i've been out & used a chair i haven't been terrified of running into people or fearful of if there will be a line. i can't recall the last time this hasn't been the case. for instance i'd dread running into a friend, especially someone i don't know as well, as i'd end up standing there having to try to shorten the conversation before i passed out, trying to keep from passing out, having to explain myself if i sat or squated all of a sudden, etc...i can't stand it b/c by nature i love talking to people, running into people i haven't seen in a while, etc...but the standing thing always made it such an ordeal. i since ran into two people at the mall and while at first i had a rush of "wheelchair embarassment", it actually ended up being totally cool....it was in fact much better than the whole trying to stand up mess & really made my health stuff LESS of an issue rather than more. same with lines...i can't tell you the number of times i've left a store b/c i simply couldn't wait. or felt like such a brat b/c of being so mad that i was having to wait while squatting, sitting, & praying i'd be okay long enough to get to the front. when i'm in a wheelchair it doesn't matter so much at all. granted this isn't the case if i'm having lots of trouble sitting too, but i've only done wheelchairs at the store on "good days" at this point...on bad days i'm stuck at home.

so...i know for myself i've crossed a huge bridge or moat or something in terms of using the wheelchair. it's still a hard realization to make. and it was hard to get fitted for my own. but it's also liberating. especially as it may allow me to do things i haven't done in years. and already having to have had spine surgery due to a black out & fall down steps i'm aware that my body that has put up very well with many falls cannot do so always & forever. it reminds me - on a larger scale - of the process i had to go through personally when i first got my disabled parking placard a few years ago. and when i first used a wheelchair at the airport. this is the "next step" for me. right now i'm pretty okay with it when i'm alone but haven't really used one yet with friends or family "out and about" (other than around vandy with my mom & at the airport). that's going to be another step for me that i'm still pretty anxious about but just about ready to embark on.

i also talked to two wheelchair users - one full-time, one part - before my fitting so i was more informed about the options, as well as researching online & reading a book entitled Choosing A Wheelchair that i'd heard good things about & snagged a used copy of online for around $5. all of this was definitely helpful...

i should be getting my sporty "quickie 2HP - in blue opal" within the month...i'm sure i'll check in with you all then...

:-)melissa

p.s. the vandy folk were sort of into my getting a scooter/ power-chair at first, but i wouldn't go for it b/c i wouldn't be able to transport it myself, which is really important to me. other options such as reclining back, etc that would be helpful at times weren't worth the cost/benefit analysis of how much weight they would add (almost would have doubled the weight) when i'm doing better i can use the manual myself, & the ultra-lightweight that i'm getting should make that even easier...it's only 22lbs!

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Hi Everyone,

I have not researched this product yet, but wanted to share since we are on the subject. I came across an ad for a Featherlite Scooter. It is a portable. The picture shows a woman carying the scooter all folded up into a compact unit. It says, "super lightweight." Again, I have not looked into yet, but I plan on it...

www.noboundaries.tv (800) 926-8637

When I am in a scooter I feel less "disabled" than in a wheelchair. After all, it is not that I cannot walk, it is that I cannot stand. I always feel weird if I have to get up out of the wheelchair to use the restroom and people look at me like, "What is she doing in that wheelchair if she can walk?" I know I should not worry about what other people think, but I do sometimes. The big issue is fitting a scooter into the car. I am wondering if this one might work. Please let me know if anyone has tried this one. Thanks.

Ann

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I have used a regular wheelchair for the past four months. I use it whenever I go out because my legs will spasm too much for me to walk and my heart rate will immediately go up to 180. I can manage to walk short distances but thats it. It is really hard because my doctors will not prescribe me an electric wheelchair because they think it will make me lazy. That makes me so mad because I have been working so hard trying to get better but they just do not get it. Hopefully my new cardiologist will. I want to go back to college in the fall ( I am 19) but it now all depends on whether I can get around campus. It will be nearly impossible without an electric wheelchair because I can not push myself without dislocating my shoulders. Hopefully we will figure something out soon.... :rolleyes:

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alicia -

i'm hoping you can find a doc to help advocate for a scooter...perhaps if you explain it's not for all of the time but just for campus, etc. the folks at vanderbilt actually wanted me to get a scooter & i was pushing otherwise but for me i need to be able to transport it more readily. i too have the goal of trying to get back to school in the fall but my program will be all in one building so that would make it A LOT easier. hang in there & keep advocating for yourself. i know how tough it is to be "hit" with this mid-college...i was almost exactly your age when things were first bad for me, had a big-time "relapse" at 21 and another this past year (at 24...25 now). i've had lots of ups & downs (literally & figuratively) over the years including times off of school & a year that was grand. good luck with your new doctor.

:-)melissa

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I voted "use when I have a spell", but technically I only use it at night to roll myself to the bathroom. After I go to sleep my BP drops very low, and I get very tachy if I try to stand up and walk to the bathroom. So the wheelchair helps me avoid a bad scenario in the middle of the night. I do not need it during the day.

Gena

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hi, didn't vote, couldn't decide on a category, but I do use a wheelchair, partially b/c of POTS and partially because of a neuromuscular condition.

I don't use it often, we live in an urban area without a car---I joke that now is the time to get a car, the only parking left around here is for the handicapped :( , I take walks using a cane, and sit very often. If I would go to the mall, which is very rare, I find the stimulation overwhelming even in the wheelchair, but wouldn't attempt it without. If I go shopping, I usually go local and don't spend too much time.

I've come to terms with it, didn't like it at first because it made everyone around really concerned, and I felt treated as someone to be pitied and prayed for, as opposed to someone to hang out with. My kids on the other hand are very self-conscious about it, although I've grown used to it. I see it as my chance for independance, but truthfully, being in a somewhat crowded, hilly urban area it's not always practical.

Ariella

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  • 3 weeks later...

To all of you who are "too proud": I do know the feeling, but when I got my wheelchair my life changed so much. I no longer had to stay home and wait while everybody else was "discovering the world". I became part of the world again. Please, if you can get yourself a wheelchair and don't be "too proud". Put on your darkest sunglasses (so that you think nobody will recognise you ;) ) and be part of the world again. In time you'll get used to your wheelchair and you'll wish you had one earlier! And maybe (you never know!!!) there'll come a time you don't need the wheelchair anymore, but meanwhile: stay connected to the world!

Warm wishes,

Corina

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  • 1 month later...

I am going to join the ranks of not voting, but putting my two cents in.

I didn't vote, because really none of them fit me.

I am doing worse now with my legs then before I was diang. Before it was more getting out of breath and my h/r going up, and my b/p being so low.

I've been on meds just alittle over a month, my legs now feel like jello and I think I am just getting worse, just yesterday I was telling my husband that I am going to call Dr. Fouad to see if she needs to see me, or can try some other meds.

My county fair is coming up, before I just about lived there, but now is dreading it, because it looks like I will be using a wheel chair to get around. It pains me to be getting worse than better. Like I have seen before on this forum, I just want a wonder pill to get my life back. Sorry to be ranting, I feel guilty, because I know some here are in worse shape then me, but looking back I've had this most of my like, but it has hit all time low for me.

So after reading my own thoughts, I guess for me it is going to be when going out, unless my meds can get me better.

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I finally got one so I could get out--It gets old at home. I could not go anywhere. Well but to the ER and that was in the ambulance :). I dread it--and just hope I do not run into anyone. I did Sunday, and it was so very awkward. I will probably never get used to it. Just wish they would make a laying down wheelchair. That would be too strange though, but would feel great! Really though, it is better to have one. You do not have to use it, you could just have it if you need it.

What do you guys do about pushing one? Do you have the ones that roll by themselves or the ones that you do it yourself? Mine gave me the one that you push yourself, which is fine as my mom goes with me. No telling what my hr would do if I rolled it on carpet or uphill.

Do you guys have the parking permits? My dr gave me a wheelchair but not parking. Which is a problem because of the heat.

It does not solve everything though as it is so hot here and I still cannot stay outside long. That is what really limits me is outdoors. JenniferTX

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Jennifer,

Yes, my doctor gave me a script to get a parking permit. I don't use it all the time, (specially if I can find one close without using it), but it makes me feel better just knowing if I have to use it, it is there.

Ask your doctor about the script, if you have a chair, then you should have a permit.

I am blessed the temps here have went down a few degrees and so much better without the humidity.

I do feel bad, my kids are always asking to go out, and it just stinks that I have to stay in AC! Maybe a little later, I can take them out for aliitle.

Hope you have a good day

Tracy

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jennifer -

believe it or not, poohbear isn't kidding...i agree though that the "combo" of all the helps we could use on a given day could be pretty humorous. :P one of those "need to laugh to keep from crying scenarios" i suppose....

i think i talk about it a bit earlier in this thread, but the reason teh reclining chair wasn't a real consideration for me is that those chairs are HEAVY...big time. the lightest is almost twice the weight of my lightweight chair. and a lot bigger...partially b/c there needs to be a headrest. so there's no way i could transport it on my own. and for me my wheelchair is an effort at more independence at times. that said, if i were a millionaire & could have the other out-of-pocket too, it would be grand for appts & the like when my mom had to drag me out or to get outside on a nice day etc. when i really couldn't do so without fainting. b/c for several months of this year there's no way a regular chair would have helped me be able to be up & out of the house at all...sitting was almost as bad as standing for me.

anyway, here are two links to some examples of reclining chairs just so you can see:

manual models:

http://www.spinlife.com/critpath/match.cfm...ID=any&x=70&y=9

power models (have full recline as option...not necessarily as pictured):

http://www.spinlife.com/critpath/match.cfm...50=on&x=71&y=12

i don't know anything about them really though other than the weight (and of course extra expense). i do know that getting feet that can prop up is not as cumbersome...i considered that but decided against it b/c 90% of the time i just put my legs/feet up on the seat or elsewhere anyway & it still would have added some weight & bulk. i know that some chairs (largely power chairs) have power reclining mechanisms & others are manual (sort of like a lounge chair type thing i suppose...different "notches". there are also tilt models wherein the whole seat/chair tilts back rather than just the back reclining. these are sometimes used for full-time chair users, i.e. those with paralysis, who have a lot of issues with pressure sores &/or major back pain issues as it allows them to reposition some more independently. other than in passing at a hospital ( a kid) and at a conference a few years ago i've never seen one of the reclining chairs in person, but they do exist. i do have a friend of a friend with one of the tilt chairs and he loves it. i can imagine that it would take more effort to take an insurance company to pay for the more expensive models, but then again one never knows...the less expensive manual ones are actually fairly "cheap" for chairs but that's b/c of the old hospital-style & lack of lightweightness...

:P melissa

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  • 5 months later...

thought I'd jump in on this one.. I have a powerwheelchair and it is fully reclineable.. and actually is comfortable for a wheelchair thatis.. its is a Jazzy powrchair..it does go all the way back and lays flat..

I need to call Monday though to see about getting the foot rest that comes up.. instead of the one I got..

Um I was able to get insurance to cover the full cost of the powerchair..(this was before all the chances to medicare and medicaid though..just before the first of this yr..) I had to go thru a PT eval.. and 3 doc had to write something stating that i did truly have a need for a reclining powerchair..(vs. a manual wheelchair) then provide documentation.. and my PT eval pretty much had the cat in the bag so to speak.. as my pots truly showed itself!

But the powerchair are very exspensive.. this one cost nearly $7000 bucks...and it is BIG! it does come apart.. but the seat is so large that it doesnt fit in a normal size car.. actually inorder for me to use the chair outside of the home.. I would need to use a wheelchair service.. and it might fit on the bus ( there is wheelchair accessability there too)

I understand peoples feeling about having or needing to use a wheelchair of any sort.. but I have found it to be very helpful.. and in a sense a real "lifesaver"..

Edited by dizzygirl
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I use my wheelchair whenever I leave the house. It's a manual chair, but I almost never go out alone so I always have someone to push me. I did worry at first about hurting my pride, but then I figured I was only hurting myself by not leaving the house because I was too sick to walk. Now I can do the things I need to do with less nausea, dizziness and falling.

I don't like the way people treat me when I'm in the chair, though. They are very patronizing and "helpful", which usually means they make me feel bad. Once, I had a woman grab the back of my chair once to move me up a hill I was having trouble with without asking, can you believe it!? I mean, she was being nice, but I don't like being treated like a shopping cart :huh: .

I wouldn't be able to function at all without my chair, so I'm really glad to have it ;)

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I have given up. My doctor of 22 years knows I wouldn't ask for one if I didn't think I needed it. My gastro that did my dilation last week said I look horrible and he wants me to put on some weight. I had a zillion arrythmias and he wanted to postpone, but I said no, it would go away. I had to beg, but i can't swallow, so he did it.

He talks to my pcp about me all the time, so maybe he will get the message from my gastro that I am not doing well and tell his staff to get me in. Otherwise I am making no effort. He knows me too well to pull this. And I am too tired to fight these guys. So no chair for now....morgan

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  • 3 years later...

After being unable to go out at all for coming up on two years ... the manual chair I got two months ago is awesome. I have a long way to go before I feel comfortable to handle my symptoms in a store or venturing out like I use to --- many moons ago --- but I can now go to the park and really enjoy the experience!

I've been working on building up my arm strength so that I can do more myself. And it is such a wonderful sense of exercise ... much different from the POTS tachy ick I get when I try to do anything standing up.

I really like feeling the breeze in my hair as I roll down gradual inclines. Its like when you were a kid riding a bike and shouting -- Look ma' no hands! LOL But I'm wearing padded palm gloves and completely in control.

I hope as I get more time and confidence, my world will continue to open up and I can go more places again.

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Hmmm. Sounds like having a wheelchair could enable longer outings I can't do because after a couple of hours of the heart in the 150s I am exhausted.

How does one get a wheelchair in the states? Does insurance cover anything? What about a scooter?

I can't answer the poll because there's not a 'It could help, but I don't have one.'

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