Wheelchairs

[flop]

Hi,

I'm trying to find out about the advantages and disadvantages of using a wheelchair to combat POTS. I am not thinking of using one all of the time just when I'm at work - I can't think/make decisions properly whilst standing up due to lack of perfusion to my brain. I have had blackouts at home but not yet at work. To have a blackout at work would cost me my job. Even without blackouts I think that my career is on the line as I have to compete for a new job to start in the summer (I am coming to the end of a 2 year contract).

There is a bit more info on what has been going on with me in the thread "Blackout! Feeling rough " (I don't want this to become a duplicate thread).

What I am after is advice from those who use or have used a wheelchair, or anyone who has been told not to use one.

Thanks,

Flop

[mkoven]

I have a wheelchair, a scooter, and a walked with a fold-down seat. I've gotten most for my joints, but they help when I'm otherwise feeling bad. I find I'm not strong enough to wheel myself with a manual wheelchair-- I have to be pushed. I can use the scooter--it was a bit pricey. and the walker is great as I can take a break whenever I need to.

[dizzygirl]

uh getting a wheelcahir for me was the best decision my doctors and could have made.. it aloows me to get a little bit more....while if i didnt have a powerchair to use i would not be leaving the house ....

Um i got my powerchair b/c of dizziness.. and uncontrolled pb and hr.. while getting my PT eval my BP was nuts 150/0 and my Hr was soaring high.. i was on the verge of fainting..

Its a though diecision to make b/c emotion and physcially...

advantage of the powerchair is it saves/conserves energy for me... makes it easier for me to be able to get out and about.. i have reclinable one so if i need to recline while out i can..

disadvantage.. is if you have to pay out of pocket for a powerchair (i got a powercahir b/c my hr is still wacky on bb's and my docs didnt feel my body could handle the stress of wheeling myself around) it is quite exspensive.. my powercahir cost about 7000 dollars.. but my insurance thankfully covered the cost of it all.. and it was pricier b/c it is a really nice one and it is reclineable...

also wheelcahir transportation is exspensive as well.. here in the state.. my medicaid will cover lift ransportation for medical appointments.. and there are other organizations that can help with the cost of a lift vehicle..

But over all.. if you feel you need a wheelcahir to help you.. i would say go for it.. and prefferrably a powerchair or scooter too. b/c its just so much easier on your body.. I love mine..i was a bit "off" about using it at first.. but quickly got over it...

good luck to you

[Sunfish]

i'm longer a POTS person in diagnosis, but i'm thinking you'll still welcome my ramblings here

i would recommend doing a search for "wheelchair", probably in the title as otherwise you'll get endless numbers of hits. here's one thread in particular with a lot of discussion: http://dinet.ipbhost.com/index.php?showtop...p;hl=wheelchair.

personally i've continued to decline since my ramblings at that time and i wouldn't be able to even get to a doctor's appointment without my wheelchair now. but for a time after i got it i had some ability to do a few things, i.e. browse at a store, that wouldn't have been an option for me otherwise. my chair was what allowed me to try to pursue grad school after i could no longer work but my body still didn't cooperate.

currently we're thinking about whether or not to pursue a power chair that can recline but b/c of the transportation issue i'm not sure how helpful it would really be as i don't have the funds to buy a van.

if using a chair - or any other kind of equipment for that matter - gave me a shot at being able to pursue working or schooling to any degree i'd be all for it giving it a shot. i understand though that it's still tough though. i probably "should" have gotten one much sooner but hindsight is 20/20 and i was stubborn & determined to go without.

hope this helps,

melissa

[Guest dionna]

my "wheels" as i call them! i rock them out, baby! i pass out or at least come close to it every single time i go to town or out to eat so i have to have them. most people assume i am just a teenager playing around it, keeping someone who really needs it from getting to use it. (i am 21, but i look like i am about 15, and no i am not just playing around in it being immature!!!) lol. and of course the chair is my own personal chair, but i have been told before to get out of it and let someone else use it. lol. yeah that was a fun day! lol. "but you don't look sick and you are so young!" yeah i get told that all the time. but... on the bright side of things... i take it all as a compliment. plus, because i use my "wheels" i don't get bumps or bruises, i am to sleep at night with out waking up with a stiff neck or beaten back because of falling the previous day, and i also get to share my story and i get to teach others about POTS and other chronic illnesses when they ask me why i am in the chair.

should you use one? do you think you need one? if yes... then YES! try one out! rock out your own set of wheels!!!!

dionna

[masumeh]

I've only used wheelchairs when they were available, like at the hospital or airports. Because I don't work or study out of the house, I was able to just manage by staying home on bad days. During the time I was bedridden/wheelchair bound, my husband used to carry me to the car, carry me to the chair. I only went to hospitals at that time anyways. Around the house, we had an office chair with wheels that he would scoot me to the bathroom and back to bed in.

My airport experiences were messed up. Because I have clotting issues, I have to walk some of the time after a long sit in the plane...but because of the risk of fainting on a hard surface, I request the wheelchair escort when I travel alone. So, when ppl see me get out of the chair to walk a while (or to get up because I need to do things that I cannot do from the chair, like get my bags off the conveyer belt), I start hearing whispers like, "Oh my God! She's a fraud!" It's really erksome because ppl cannot understand that there are all levels of disability, not just fine or paralyzed. Especially as a young person, ppl really seem to get offensive and say things loud enough for me to hear, but not directed at me so I could answer them and dispell the myth. Really annoying!

Another thing I noticed is that many places, maybe most places, will have just one or two little steps or things in the way that make the wheelchair useless...then you have to be able to get up and pull the thing, then you feel embarassed to sit back down in it because ppl are going to be like, "If you can walk, why are you using a wheelchair?" If they actually ask, that would be a blessing...but they don't...they just stare and whisper!

I guess it would help around the work place if you let some people know what you're planning and why. Then when the behind-your-back whispers start, there will be informed ppl to correct the gossip. Also, if I were in your place, I would inspect the runway before you bring the chair on the scene...like, know the places where you might not be able to use it because of a step in the way or a tight/narrow squeeze.

Also remember that in parking lots, you will not be eye level...

Well...that's my two cents.

[Guest dionna]

wow! i could not stop laughing at the previous post by masumeh!!! you are so right about what people think!!! lol. i get the same types of reactions too!!! it hurts at the moment but it is hilarious reading about it later!

when i was at the hospital still, i was ordered to be in the wheel chair at all times! well when i had to go across the road to get to the barracks, the wheel chair ramp was actually on a hill that i couldn't wheel up. so traffic would stop for me to wheel myself across the road, but you should have seen some of the faces when i stood up and pushed the wheel chair up the hill. lol. oh boy! i am sure they thought a lot of strange things. at first i am sure they felt bad for me thinking i was a marine that got blown up in iraq or something and then they probably thought i was a fake and should feel ashamed of myself!!! one lady spun her tires at me. if only they truly knew! lol. i gotta laugh to keep from crying, you know. lol.

dionna

[bttrflyamby1981]

I struggle over the wheel chair thing....at times I really need to use one, but I haven't been able to bring myself to do so. I just keep pushing myself. I guess one of these times I will learn, but I'm afraid. I don't faint so I don't think I really NEED a wheel chair or even the use of a ride on one at the store. I know it would make things easier, but I just haven't come to terms with everything when it comes to "help", from people or the use of a chair.

[pat57]

ya' all got to wear your "Dysautonomia shirts".

[flop]

I've had a look at some wheelchair catalogues - I had no idea that there were so many different types available!

The first time a wheelchair was suggested was by my GP (PCP) but I think he might have been joking. I think that my cardiologist would be very much against the idea as he is convinced that deconditioning is the root of all evil and that I must exercise as much as possible. Mind you he has just said that I should qualify for a disabled parking permit.

I'm having an appointment with the occupational health doctor at work tomorrow to discuss my recent health problems - I'll have to try to introduce the subject gently to gauge his initial response! If occupational health think it is a good idea I'll have to try to convince my GP and consultant that it is a means to an end (ie me trying to keep my job / secure a new job) not me being lazy or allowing my body to fall apart. I wouldn't want to buy a chair without their permission.

Maybe I should just stick with the Midodrine for a bit and see what happens?

Flop

[persephone]

Flop you shouldn't have to buy one- I got mine on the NHS. There are times when I don't need it at all but because this is a fluctuating condition, there are times when I really need it. My cardiologists got mine sorted for me. But it is only manual, and I am not strong enough to wheel myself at all- I need someone to be pushing me all the time.

I don't use it as much as I should- but that's because of Oxford and its cobbles- can you imagine how bumpy it is?!

If you need it for work, then seriously talk to your OT and your consultants about it.

good luck.

[AJVDK]

Right now I am not using mine life I should. But really I been so sick I am just stuck in the house. I am hoping this spring I can get out more. Last year was the frist year in a few years that I was able to get out and camp again, go on nature trails the hole deal. I have a power chair, and a manual wheel chair. It gave me more of a normal life, even when I am not doing well. If I feel good enough to walk though, and no racing heart rate, and my b/p is not to low, and I feel up to it I do try to walk.

[morgan617]

I have a transport chair, it weighs 19 pounds, folds up and fits in the trunk. Don't go anywhere without it. It has tiny wheels all around, because I can't push myself, but it's a lifesaver for the people who push me around.

I also have a power chair with a seat that reclines, and it comes apart. it fits in the trunk of our neon and the seat fits in the backseat, so we don't need a van for it. It takes my hubby or son about 3-5 minutes to assemble or unassemble....

I really hated it when i first got them, now I realize what a help they are to my family....I couldn't imagine not having them now...

[flop]

Hi everyone - an update for you.

I met with the occupational health doctor at work today. He has previously been very supportive of trying to keep me in work - he even strongly criticised his counterpart at my previous employer's for failing to support me or recognise my POTS as a disability. (My previous post sacked me due to ill health but they had to re-instate me when higher powers intervened).

I explained my recent problems including admitting to my 2 recent blackouts (neither at work luckily). I asked him for help getting a parking space closer to the main building - I don't yet have a disabled parking permit but hopefully will soon. There are disabled spaces in the public carpark but not in the staff one and I was told that there was nothing he could do about it! Sounds like you aren't supposed to work if you're disabled!

I also very cautioulsy introduced the possibility of me using a wheelchair at work. Initially he thought it was an over the top idea. He then said that if I was struggling so much that perhaps I was too ill to work - why doesn't anyone understand that I have insurance that would pay me a nice income to sit at home and do nothing but I actually want to work and in my career taking time off at the moment isn't an option. If I get therough the next 2 years in one piece I can then work for myself / freelance / part-time or whatever I want but I am not senior enough to have that luxury yet.

He did conceede that work couldn't refuse to let me use a chair (the UK law says they can't discriminate against me for using one). He also said that if I do need one then I can get government funding through the access to work scheme to buy one. But he advised me to think very carefully before going down the wheelchair route.

Arrrrghh - now I really don't know what to think.

Flop

[Guest dionna]

he is cautioning you about the wheelchair idea and saying if you need one then perhaps you shouldn't work? maybe next itme you should ask him to put himself in your shoes. if he need a chair to help him be a doctor... would he not use one? my neurologist uses his. my brother's lawyer is paralyzed. she was paralyzed while still in high school and yet she went on to law school. she obviously needs a wheelchair but that didn't stop her from working. she like you could have just taken insurance money but that wasn't what she wanted either.

right now... perhaps you aren't able to work because of not having the chair, but perhaps the chair will make you able to work. that is the entire point, right?

IF YOU NEED ONE... i would suggest trying it out. if it will make you feel better and you can do your job better... i am sure no one will mind at all!!! your employers would much rather great performance!!!

dionna

[marnian]

I went to work for a few weeks in a wheelchair. I was strong enough to push the manual type around for short distances and it was a great help. I was much, much less tired at the end of the day without the constant standing. For longer trips (like to the cafeteria for lunch) my coworkers didn't seem to mind pushing me. As soon as I could comfortably walk the distances involved, I returned the (rented) wheelchair, but on bad days I sometimes wish I still had it. It definitely decreases the total amount of energy a day takes. I'd expect your doctors to undertand that.

Also, on a personal note, being in a wheelchair does change the way that people interact with you. I didn't have any of the negative experiences that many people on these boards mention fortunately. My experience was that people were much more respecful, offered to help more, started conversations with me when before they would have just ignored me etc. But it was a very very odd feeling. It wasn't like _I_ had changed at all.

[flop]

Thanks for all the great advice so far.

I saw my psychologist the other day and he thinks a chair would be a good idea. He also disagrees with others that have told me that I will allow myself to "become disabled". His assessment of my attitude was that I was apprehensive and reluctant to use a chair but willing to view it as a way of enabling me to keep working.

I also saw my GP today (PCP). Before I even got a chance to tell him that I wanted to ask his opinion about me considering a chair he jumped in. I was describing my current POTS hole and he could tell that I must be bad as I took my Mum in with me to the appointment for support. He said "what about using a chair, you know you wouldn't be the first ----- to use a wheelchair, it is allowed!". He said that he will fully back my application for "access to work" funding for a chair (I would never be able to lift a standard heavy NHS one in and out of the car) and also for a disabled parking permit and disability living allowance.

WOW things seem to be changing very quickly in my attitude to my health problem. I have always tried to just get on with things and decline help - this is a major step for me to admit that I am "disabled" let alone make it obvious for everyone by using a chair. I'm not worried about the attitude of people out and about - in fact it will probably stop me from feeling guilty for using lifts and not offering to give my seat on the bus to elderly people. I'm more worried about the attitude and reaction of my friends and work collegues. Most of them have no idea what life feels like for me right now and I think they will think that I am being melodramatic and OTT / attention seeking. How do I introduce the idea to them?

Flop

[flop]

I'm posting things in the wrong order - I was sure I wrote this yesterday but as it isn't on the site I either dreamed it or pressed the wrong button!

A few days ago I saw my employer's disability advocacy worker (I didn't know that such a position existed and now wish I'd met her months ago). She was really helpful and explained things about the UK 'disability discrimination act' and 'access to work'. She made it clear that her job was to help me keep working and liase with my managers, supervisors and government funding bodies to enable me to work the best I can by making modifications to my job / getting equipment for me.

Even before I was able to mention wheelchairs she started by asking about my dyslexia - I declared dyslexia on my job application form years ago. She found out I have never been assessed for Irlen Syndrome and is arranging to get me tested and if needed coloured glasses to help with my reading. I have seen so many people about dyslexia over the years (especially when I was a student as I got a disabled students allowance to buy dictaphone, computer and special softwear so that my computer can read text out loud to me) but no-one had ever mentioned Irlen testing. She already had convinced me that she was a wonderful person before we got round to the wheelchair issue.

Wheelchairs - she supported me in that if occupational health think it is a good idea then she will organise funding to get one for me. As I want a really lightweight chair so that I can propel myself and lift it into the car I knew that an NHS one would be no good so thought I was going to have to save ?2000 to buy one.

She suprised me by suggesting that they should buy me an electric wheelchair so that I don't get fatigued as the building is very large. Personally I think I would rather have a self-propelled as I think I would be more "comfortable" using one. ie I would feel less of an idiot sitting in one. I think I'm starting to accept the idea of a chair a bit more.

Please keep the advice coming - your advice and encouragement has been fantastic and is really helping me to see all the options in this difficult matter.

Flop

[Guest dionna]

not feeling the best... so i will be short for now...

i love my manual. it does wear me out but i always have someone around that can push when i am tired... they never mind.

[morgan617]

Any negative happenings with either of my chairs have been of my own making. I find people to be very understanding and helpful.

The first time someone said I was disabled, I was checking into outpatient for a procedure. I was so mortified, I made her take it off! But it IS the truth, so now, even though it still bothers me, I just say yes, I am.

The attention I garner from my chair is far less than the attention I get when I face plant......and they are so much easier on my family.....that's the really good thing about it....

[pat57]

flop,

It looks like youv'e got the help you need now. Glad for you, in this turn of events.