Wheelchair Assistance

[bluebeauty875]

I was just wondering if anyone here has to use a wheelchair because of POTS? I'm getting to the point of feeling like that's the only way i'll be able to travel any kind of distance. If you do have to use a wheelchair where did you get it?

[roxie]

I definitely use a wheelchair, if I didn't have one I'd rarely ever get out of the house, let alone go to the store.

Insurance covered mine and I got it from an orthapedic place i think, you would have to check with your insurance for where you live, I got it from the same place that dispenses my stockings,

I've struggled with alot of insecurity b.c of my chair but I am slowly learning that the wheelchair is actually a gift b.c without it I'd have no hope of doing things

Madeline

[Rachel]

Hi Kate,

I've been using a wheelchair for 2 1/2 years now. I didn't have any insurance when I first became disabled, so we had to purchase one out of pocket. I ordered a basic chair on www.spinlife.com I couldn't afford an expensive one, but I found one for about $200. Shipping is free if you do ground UPS. It was not a high quality chair and I will be getting a new one asap, but it did get me through. I use it every time I leave the house, and often in the house too. We've used it over gravel parking lots and wooden sidewalks. So considering the abuse we had to put it through in Alaska, I guess it's doing pretty well!

If you have health insurance, definitely check with your doctor. He may be able to write you a prescription for a wheelchair that your insurance company will cover or partly cover. You could then find a local mobility store that could help you in selecting a chair that will best fit your needs.

I hope you can find a solution that works for you and helps you to get around.

Rachel

[corina]

hi,

i'm using a wheelchair to go outside (or my scooter) since 4 or 5 years now. the only thing is, that i can't go out on my own (i don't have a power chair). i am more comfortable in my wheelchair but to make it possible to go out by myself i got the scooter. i even got "things" (sorry don't know the word ) that keep my legs up so that i can be in my scooter for some longer, so hooray for the "things"

it took me quite some time to come to the decision to ask for either the wheelchair and the scooter. when i finally did, they became my best friends!!!

hope a wheelchair will give you relieve and make it possible for you to go out again!!!

corina

btw, my wheelchair and scooter are paid by our local government. i am very glad for that, because they both are very expensive!!

[Rachel]

I should add that a wheelchair works for me only because my husband takes me everywhere I need to go. I can't get around by myself in a wheelchair. If you're not strong enough to move a wheelchair manually, then you might want to look into a scooter.

Rachel

[roxie]

i also always have someone pushing my, i would NEVER NEVER be able to handle it on my own

Madeline

[Sushi]

For air travel, just book it through the airline--a courtesy service. I am planning a long trip and will request one to avoid standing in long lines and struggling to carry hand luggage. You should be able to get one from the moment you do curb-side check in.

[Sunfish]

hi kate -

you may want to do a search as the topic of wheelchair use has come up on numerous occassions. POTS isn't my diagnosis & i'm not able to leave the house much but wouldn't be able to at all - even to get to a medical appointment - without a wheelchair. i've had my own for about two years though used them prior to that at airports, hospitals, stores, etc and/or often couldn't go somewhere if there wasn't one available. and many a time i literally would have to lie down on the middle of the floor regardless of where i was to keep from blacking out (after years of being stubborn & thus always pushing until i actually would black out.) so initially the chair was a necessity for me at times & in certain situations but largely allowed me to do certain things that i wouldn't have been able to do otherwise or stay somewhere a bit longer, etc. now the wheelchair is a necessity for pretty much anything.

i don't use a wheelchair in our house only b/c it is extremely inaccessible, but instead at times i've been entirely bedridden &/or unable to get further than the commode next to my bed. one step better than this is when i can crawl to get around a bit more, i.e. get to the regular bathroom a few doors down the hall. so i would certainly use a wheelchair in the house if i could! i currently have 3 different wheelchairs, 2 that i own & 1 that we're borrowing from the local independant living center. my first chair (which isn't getting hardly any use anymore) is an ultralight manual chair that - in the past - i was able to transport on my own, push myself, etc for short distances; the fact that is was custom designed for me & ultralightweight is what made this possible as a chair that fits properly & is made out of lighter materials is MUCH easier to move. the chair we're borrowing is manual but a lot bigger & clunkier but it reclines & has elevating legrests, something that is now the only way i can be somewhere for more than 30 minutes without finding another place to lay down. but i'll be honest that i HATE being pushed as it completely changes the way my parents as well as just about everyone else treats me. and the chair, while it serves a purpose, is pretty uncomfortable too. my last chair, and definitely the one that gives me the most independence, if only for short periods of time, is a power chair that reclines entirely & has elevating legrests. the problem is that it is very difficult to transport, which obviously poses a problem. it is very comfortable though, i can obviously move it myself, & i can lay down entirely. and while i still wouldn't be able to get out regularly, when i win the lottery (not likely since i don't play!) i'll be buying an accessible vehicle for this chair so that it can be readily used somewhere other than on my own street!

in regard to how/ where you get a chair, if your doctor is supportive your insurance should pay for a large portion of the type of chair deemed medically necessary for you/ your health. for instance if you'd only need a power chair for a long vacation but not day-to-day, an insurance company isn't likely to cover that. my insurance has paid for 90% of both of my chairs, though i got them several years apart & there was very obvious documentation of my medical/ functional decline which substantiated the need for the new chair. with a prescription/ order/ referral from your doctor your best bet is to then work with a wheelchair/ mobility supplier that is "preferred" by your insurance. a company that is specific to wheelchair/ mobility products is much better than a general durable medical supplier that dabbles in a wide variety of items.

hope this helps,

melissa

[Sophia3]

Melissa

Wow. Glad you have so many options for wheelchairs and glad you find a reclining one but I can see that it would be cumbersome. Amazing what I learn reading on this site and from YOUR experiences.

Oh, and about that lottery thing; Many years ago, I heard David Letterman say "did you know your odds of winning the lottery are the same, if you buy a ticket or if you don't?"

Just couldn't resist. I have stolen that line and used it a few times over the years.

[bluebeauty875]

Thanks so much for all the advice. It's really hard as I'm sure you all know to be a normal person who doesn't have to think about standing in line for a movie or walking the mall with your friends and then to go to someone who can stand up for two minutes let alone walk any kind of distance. I'll look into all these options hopefully I can find one that works for me.

I have one more question. If any of you can walk around your house and then have to go use a wheelchair at the mall or something how does that work? Do people stare? I know I shouldn't worry about what people think, because it's my health and not theirs, but i'm so worried about when I get my handicap parking placard about what they'll say if I get out of my car and walk some where with out a problem.

Thanks so much and anything else ya'll want to add would be wonderful.

[corina]

kate,

people don?t know the reason why you?re using a handicap parking placard. so they probably won?t think anything about you walking away. you might as well have something else which makes you need the handicap parking placard (can't think of anything right now, sorry ). or you might as well use one to pick up some other dhandicapped person. what i'm trying to tell you is that people usually don't think anything. it's us that worry so much. and although i do know that there are people that might look at you wondering why on earth you have such a placard, YOU DON'T OWE THEM AN EXPLANATION, it's just not their business. the last time this happened to me (years ago, when i was still driving) i stopped and asked: is there anything wrong sir, as you keep loking at me???

hahaha he felt so very ashamed that he turned red and didn't know what to say.

when we were in france last year, there was a card at the handicapped parking place saying: when you take my place, do take my illness as well. i really LOVED that. also in supermarkets they have special places for handicapped people to pay. others can use them as well but whenever a handicapped person comes next they have the right to go first. boy, do i LOVE france!!!

try not to worry to much and enjoy going out, whenever you are able to!!!

take care,

corina

[roxie]

Corina, that is some great advice!!! Unfortuantely, yes kate people will stare, at least they do at me. It all depends on how you want to handle it, if you stare back they will look away. sometimes I do a beauty queen wave just to embaress them! hahaha

sometimes my mom will say something like, "it's so rude when people stare" or "take a picture it lasts longer"

the staring issue is still hard on me sometimes 10 years later, but you just have to get to the point realizing that your wheelchair is your passport to adventure and that if people are staring at you critically it's there problem for not having compassion

Madeline

[flop]

Hi Kate,

I'm very new to wheelchairs as I have only been using one for the last month. I can manage to walk pretty much ok but I can't stand still for long at all.

I'm lucky to be well enough to work full time, but my job requires me to be standing up for long periods of time. Faced with the choice of quitting work or finding a way round the problem I set about doing quite a bit of research. The first thing I got was a seat-cane that enabled me to sit down whenever I needed to be stationary at work. That helped but as the seat bit is quite high I was still having problems with blood pooling and poor concentration. My cardiologist suggested carrying a plastic chair about but that was just impracticable for me, plus carrying anything makes my symptoms worse.

After a lot of debating (search for "wheelchair" and "Flop") I applied for funding for a wheelchair. As I need the chair primarily to enable me to work I have securred funding for 80% through the "Access to Work" program in the UK, hopefully my employer will pay the rest of the cost. I was assessed by a physiotherapist and an ocupational therapist to find if a chair was a good idea and what type of chair would be best for me. Then I went to RGK a specialist wheelchair manufacturer for their assessment.

The plan is for me to get a rigid ultra-light titanium framed chair with quick release wheels and a folding backrest so that it will fit in my car. It will be made to measure so that it fits exactly and is balanced for someone of my weight. They are putting 2 anti-tip devices on the back and removable side-guards so that I can sit cross-legged in it and tip backwards about 30 degrees if I feel too faint.

About other peoples' attitudes - I find that being in the chair is actually easier as people look and think that there is something wrong with me. My new chair will be a snazzy purple colour so I expect that people will stare. Asking "can I help?" or even "do you want to ask about my chair?" either causes people to blush and look away or starts a conversation (anything to spread awareness about POTS).

My work collegues have accepted me plus chair so far. I have briefly explained that I have POTS and that often I will use the chair but that my legs work ok and not to be suprised if they see me get up and walk to the water cooler. My sister has actually asked if she can "have a go in it".

I would much rather not need the wheelchair but it is a means to an end and if you think that you would benefit from using one I would advise you to talk to your PCP to see if they will support you with a prescription.

Flop

[flop]

PS - Corina, I love that French message. I wonder if I could get that put on a sign by the disabled parking spaces at my work? I always get annoyed when people without badges park there - don't they realise I need the extra-wide space to get my wheelchair out of the back seat of the car??

Flop

[bluebeauty875]

Thanks for all of the advice. You've made me feel a lot better! I'd love to hear more of your thoughts if you have any more.

[Ernie]

Hi,

I have been using a wheelchair because of syncope and muscle weakness for 7 years. I have a manual chair and a powerchair.

[nichob73]

Hi I am uk I need help with getting aa wheel chair. Thnaks for all the information. If in UK is it case of PCT sorting one. I am pretty lost.

I am struggling i need to lie flat or sit v frequently.

TC nicho

[flop]

Hi Nicho,

I'm in the UK too. As my chair is mainly for use at work I am hopefully getting "Access to Work" funding for a wheelchair.

If you need a wheelchair for medical reasons rather than work reasons (if I didn't work I wouldn't need a wheelchair) your GP should be able to prescribe one and refer you to the local NHS wheelchair assessment centre. I know the chairs they provide a pretty basic but if a manual chair will help you get arround then it shouldn't be too hard to get one, powerchairs are a different matter and I guess you would have to apply for funding for one of those.

If you are too sick to get arround without a wheelchair, have you applied for Disability Living Allowance? If you qualify for the higher rate mobility component you can use the money for an electric scooter (Motability scheme).

Flop