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Elfie

Another Wheelchair Question

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You know, I was reading the current wheelchair question on the first page of the dysautonomia discussions section and decided I am finally going to ask the question that always nags me when I read about dys wheelchair users.

While I often hear about how wheelchairs are either detrimental to dys patients (from docs) or how much they have helped patients that were mostly bedbound or homebound to get out and do more. However, I often hear about dys patients that use light transport or hospital-style chairs because they are cheap and the patients can't manage to self-propel much or they use an electric chair or scooter (those that aren't at a risk for loosing consciousness while sitting).

Are there no dys patients that have an active life and are able to self-propel? I mean, are there any dys patients that use a light or ultra-light wheelchair meant for those that self-propel (sports chairs, ect) daily and not just for special outings? Obviously it isn't good for dys patients to wheel all the time if they can walk-- but does anyone just a chair completely independently for work or school and all the other aspects of life outside from short walks/around the house?

It might be just me, but it seems like I never hear about or from dys patients that achieve something from using a wheelchair that are already active enough to continue living a more "normal" life.

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The middle of the road answer is those who do not need full-time wheelchairs tend to use rollator walkers (see examples) with a seat to use when fatigued. Lifting equipment is not easy. Even if you take apart a wheelchair to put it in the trunk, you are standing in one place for a period of time to reconstruct it. There are probably lightweight chairs such as you are envisioning but I am sure they sell for over $1000 which is not doable for many of us on disability. It is necessary to remember that the disorder can evolve and need for a reclining chair becomes apparent. Many of the reclining chairs can only be reclined by an aide.

There is a hybrid rollator travel wheelchair examples which some may find most convenient.

Here is a link to check out the vast array of wheelchairs available. http://www.spinlife.com/wheelchair_store.cfm

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We ordered a super cheap manual WC for my son last year for outings. He can only walk for about 10-15 mins at a time in a climate controlled environment and even less in heat. This makes it very hard to do normal kid stuff or even go to wal mart for him. Initially he powered it himself but it caused him a lot of fatigue as he got sicker and now he is 14 yrs. old and 6'3 and weighs 220lbs. so it is hard to puch him on anything but flat concrete. We got a handi cap placard and he uses scooters at the stores that have them but he has already been approached by a wal mart employee in my abscence asking if he "really needed to be in that scooter". In as polite a way as I could muster once I tracked her down, she was educated on POTS. This is one of the reasons that I want to get him his own scooter - he can not go shopping at lowes with his Dad because they don't have scooters, he gets exhausted going to school just 1 class/day and I think that not walking around would help, he can't go anywhere that doesn't provide a scooter unless I rent a he man or take my husband (we live in a very hilly area).

I am getting ready try and get the insurance company to pay for a scooter or power chair but I am not getting my hopes up because I read that they only provide one if it is needed in your home to function - apparently they could care less if you can leave your house - RUDENESS. It makes me mad that morbidly obese people can get them but sick people can't. This whole illness is an injustice!!! Sorry I lost my thankful for a moment - the summer is torturing my baby again - I loath summer and it is going to suck even more without transportation for Kyler. I may have to do a family fund raiser for him if the insurance doesn't come thru.

Bottom line - the wheel chair definitely helps Kyler last longer energy wise in public but not if he self propels it - walking or standing just saps it right away.

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Worried Mom-

I found this last year and posted the link -http://www.travelscoot.com/ There are testimonials where people relate stories about teenagers begging their parents for one after seeing it.

If you were going to do a fundraiser I would vote for this as you are not standing for extended periods, it is light and goes everywhere.

You can tell I have been dreaming about being able to afford one.

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That is SSOOOOO awesome - thank you. Super expensive but super cool - I'm going to start saving now - overtime here I come. I'm guessing that no insurance company would ever cover that? Does anyone have any advice on how to get insurance to cover a mobility device?

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hi :)

I must admitt that I didnt read all the replyes in depth.

I got my first wheelchair i guess about 10 years ago. It was a heavy type, i could not wheel it really for my self. At the time i was homebound couldnt walk most days really. So the chair first outing was a short tripp to the libery. I used it as lilte as posible after starting midodrin two years later. And i was convinsed that i should never ever sitt in that monster of a chair. I was not handicaped!! After trying to work again, my leggs and body once more caved in totaly. And the chair was reluctnaty used sometimes. But mostly i was ust homebound for years. Four years ago we moved to another part of town, and in to a house. Here i got in contact whit a , well not sure what the englsh name is, they find the rigth equipment to make lfe easyer.

She got me a lighter chair. It was heaven. And ust before x-mas i got new difrent types wheels, so now i can somthimes handle downhills, and very short and not steep uphills. But at malles etc i wheel myself most of the time.

Its not the sportiest of the sport chairs, but still a light easy one.

I dont drive anymore, and have to either gett some one to drive me or take a taxi. For some years i have been very very litle out of the house on my own. So the putting the chair togeetter etc is not an issue for me.

Last year i think i was one or two times in a mall by my self. And then i took a taxi to gett there.

But for me this new chair, and spesially now whit the new wheels means a more easy life and more independent one of sorts. Being so dependent on others, living so restricted is very hard. So ust a lilte taste of freedom is heaven. And wheelng my self gives me more exersiss, somthing that is hard for me to gett. And for me wheeling is much more easyer on my body, than standing and walking (i am now wearing a hartrate watch alot, and se why)

I also have and el chair for inddor use. Its not so easy to manouver, but i can raise the seat up and down. And an el.outdoor chair. The outdoor one i havent been abel to use so much. Its stored so i need help to gett it. And it usless in the winther, and on crovel etc. I am now to turn that in and gett a nother type. They bothe have tilt for the back and leggs so i can give my body some relife from sitting. Somthing i ofcourse cant do whit the manuell chair or the indoor chair.

the last year (exept from whinter, when always ill) i have been abel to finaly improve a lilte. That means that I can do a lilte more at times. But walking on my own is not an option for me. I do walk in the house a lilte everyday. But i often overdo, and then i can gett totaly bed bound. So i try to find a balance, and know that every day is alilte difrent.

And most days i stay in bed intill 12, somthimes shorter, other times longer. I try to lisen to my body, and respect it. And the wheelchair is a nice compromise. I used to think it a shame etc to use one. i dont anymore. i love my manuell wheelchair. The indoor is ok ( whish it was easyer to manouver, so i didnt hit things so often). And the new outdoor chair i hope will work better. We are also hopfully to but a shedd rigth whit the door so i can gett to the chair myself. maby i then on good days actually can leave this house all by my self..?

Where i live u borrow the stuff for free, but it can take a long time to gett it and somthimes once aplication getts denied. That is county sends one person assesing one needs, then they do the aplication prosses mostly (depending on what etc)etc etc. First time i waited a year for the el.chair. And this time also. But when i gett it its use is free of charge, and that is nice...=)

I ust know that wheeling both in el and manuell has made my life into somthing like a life.. B)

And it also give me exersisse. Better to wheel around for an hour at a mall, than walk ust a few steps and the body giving in... The first gives more exersiss i think, and a better life....=)

best luck to u all.. :)

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I am not bed bound, and usually have less than five minutes that I can stand before I black out. That being said, I experience almost all my symptoms (except for pre-syncope) very quickly after standing, so standing for even two minutes or so leaves me extemely lightheaded, weak, and extremely fatigued. I ended up getting a chair about a month and a half ago, and was surprised that I could use it all the way throughout my housr. i don't always use it, really only when I know that I'm going to be up and down over and over, standing for more than a couple of minutes, or doing something with my kids where they could drag their feet (I have three kids four and under). And if I had known what a difference it would make, I would have looked into a chair a long time ago!! As well, we use it when we go to get groceries and on longer outings. I am able to wheel myself through a grocery store and am exhausted afterwards..I tried the mall, and it almost killed me :). The amazing thing about using the chair for outings is that I am still coherent enough to carry on a conversation by the time we are making our way through the checkout! Before, I would honestly have a hard time remembering how to pay sometimes because I was so close to hitting the turf. I am not sure about the long term effects from using the chairm but right now it has given me a lot of freedom and independence back, and that has been amazing!!

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My insurance paid for my scooter after my neurologist filled out an extensive prescription for it. She was very thorough in explaining PAF. I got it paid for on the first try, no appeal. I am still able to walk a little bit, but I use the scooter for grocery shopping. My cardiologist didn't like the idea, but he's not the one unable to do anything. I still walk some too.

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You know, I was reading the current wheelchair question on the first page of the dysautonomia discussions section and decided I am finally going to ask the question that always nags me when I read about dys wheelchair users.

While I often hear about how wheelchairs are either detrimental to dys patients (from docs) or how much they have helped patients that were mostly bedbound or homebound to get out and do more. However, I often hear about dys patients that use light transport or hospital-style chairs because they are cheap and the patients can't manage to self-propel much or they use an electric chair or scooter (those that aren't at a risk for loosing consciousness while sitting).

Are there no dys patients that have an active life and are able to self-propel? I mean, are there any dys patients that use a light or ultra-light wheelchair meant for those that self-propel (sports chairs, ect) daily and not just for special outings? Obviously it isn't good for dys patients to wheel all the time if they can walk-- but does anyone just a chair completely independently for work or school and all the other aspects of life outside from short walks/around the house?

It might be just me, but it seems like I never hear about or from dys patients that achieve something from using a wheelchair that are already active enough to continue living a more "normal" life.

I am not completely clear on your question, but from what I do understand I will answer as best as I can.

My daughter started using a wheelchair at the beginning of this school year, just for school. We were amazed how it opened up the world to her. It made it possible for her to be active. The doctor would not prescribe a chair as they have yet to make the diagnosis official. We went to the local Walgreens and got a hospital style chair for $200. She uses it at school,going shopping and playing baseball with the Miracle League. It is light enough for me to fold up and lift in and out of the vehicle trunk everyday. The doctors are wrong, it does not make you weaker. She still walks short distances around school and walks at church and home. She is a whole new child since we got the chair, very active and very involved. She would not be otherwise. It does ware her out propelling with her arms, so she uses her legs to propel herself. It works ok at school as she gets plenty of rest, but at the store, dr's office, where there is a lot of traveling, we do have to push her.

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Hey Everyone--- thanks for all of your replies and I apologize if my question was confusing.

I understand that there are a lot of dysautonomia patients that benefit from wheelchair use. I also know that sometimes they meet resistance from doctors that are afraid of "deconditioning." However, I usually only hear about patients that are homebound, bedbound, or only use their chairs for special outings (that is, they are too ill to work or go to school full time, and therefore only use chairs to get to doctors appointments or out on shopping trips or other special outings). Generally these are the same people that always have someone to help out with the chair and therefore don't necessarily need a chair that is super-easy to lift or push, because most of the time they are not relying on their own strength/energy to use the chair, or only go short distances under their own power.

TLC's Mom-- I really appreciate your comment because your daughter's situation seems to be similar to what I was asking about. It seems as though your daughter could probably get by (with a real struggle) without her chair (since she does walk and goes to school), but it makes the difference between her having the energy and feeling well enough to be herself and be able to participate in activities other than the bare minimum of school, if that.

I was curious because I am one of the POTS patients that does go to school full-time, as well as drives. However, I find that my productivity and how I feel crashes after a minimal amount of time on my feet doing daily activity and once I get to feeling poorly, I seem to lose my mental clarity and ability to keep symptoms at bay all day. I can definitely walk to my class, but my performance and focus takes a major plunge. Similarly, I go to school full-time, but by the end of 5 or 6 hours out of the house (most of that spent sitting, with just intermittent walking in between) I am done for the day and often to ill to complete anything at home. It is a struggle to get the bare minimum done as a student and get through the day. I graduate at the end of this summer and am looking for jobs. I found something that I would really enjoy, but I wouldn't be able to handle the amount of walking. I have noticed however, that on days that I don't have to be standing for much more than to grab a shower and some breakfast I am able to do so much more and feel much better. I once had a doctor suggest that I use a wheelchair to increase my amount of productive time in a day so I could have a bit of a life (I admit, as grateful as I am that I still can go to school, I had complained because sometimes it feels as if all I ever do is work and be sick). I was reluctant at the time, still in the stage hoping that I would continue to feel better with new medications, ect. I am no longer under his care, but the job situation has got me thinking about it again.

So, I was just wondering if there are other fairly active people that work or go to school full or part-time or otherwise spend most of their week out of the house that use a wheelchair to increase their stamina or decrease their symptoms or because it allows them to be able to work or go to school or do more? Like I said before, I haven't really heard about many, if any dysautonomia patients that use a wheelchair that they self-propel themselves that they transport themselves-- basically haven't heard anyone that uses a wheelchair more than once in awhile completely independently, which would be my situation.

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