Wheelchairs?

[Nikki]

Since being diagnosed in October of 2009, my symptoms have seemed to gotten worse to the point that it's hard for me to go anywhere anymore because of how I feel. Even if I'm having a decent day, I feel okay to do things around the house but as far as going out anywhere, I still can't because everything involves a decent amount of walking - whch I'm not able to do lately..and I was just wondering if anyone has gotten a wheelchair because of POTS, and if so was it something you decided on your own or did a doctor recommend it?

[potsgirl]

I have a wheelchair for those times when I really want to get out and do something I normally couldn't do, like shopping at the mall, which I still do rarely. I asked my doctor about it, and she agreed and wrote me a prescription so that it would be covered by insurance. I just carry it in the trunk, and use it when I really need to. It was a lifesaver at Christmas, even though I do most of my shopping online. It helped me get into the spirit!

Cheers,

Jana

[EarthMother]

I got my wheelchair a year ago last January and I should have gotten one many years before that! I had no idea how helpful it would be on so many levels. At my worst I was able to use it from the bedroom to the bathroom -- which was the only two places I was going at the time.

I use my chair now only when I leave the house, which admittedly I am still too sick to do very often. But I absolutely love doing for a stroll around the cul d'sac on my own power. My arms are strong and it feels so good to work my upper body in the chair. I found that I did far more exercise with my chair than I did before I got it. Subsequently I have been able to do more floor exercises as well so that my legs and abs are also in good tone.

For me, the chair allows me to be more active and enjoy the time when I am out. It is such a blessing at the doctor's office, where there are long corridors and often long waits. My manual lightweight chair has elevating leg rests -- perfect for my POTS.

When I asked about the wheelchair, my doctor was very supportive. He helped with the insurance paperwork and I was approved within a couple of months time. Someday as I may consider a power chair or scooter. But for now and given where we live, the manual lightweight chair works fine.

One thing I did before bringing up the idea with my Doctor was to rent a chair from a local drug store for one month. That way I could see for myself if it would be of any value.

Good luck on your healing journey.

[hensor]

I'm a wheelie too - but I also have EDS which has made my knees a reliable as a string-puppets'. Even with robot style knee braces.

For bad PoTS days my wheelchair is amazing, but I also have to be disciplined and not automatically use it whenever I feel bad - I am determined to be as fit as I possibly can with my conditions. So I have a 'no wheels inside the house' rule to I make sure I walk as much as I can - even though I sometimes end up crawling, and then when I have a massivley wobbly day (like, incidentally, today!) I will use it inside the house but then I have to do more than normal - things like putting the washing on, tidying and the like that I can't cope with on my feet. Which with my wheels I can do on really bad days, which is somewhat ironic but feels absolutely marvellous. It takes a lot of the depressing side out of bad days.

For getting out-and-about it has been perfect. Although my PoTS Dr was really not keen on wheelchairs and told me off for using it. I told him he could have my knees, dislocated pelvis and PoTS-y heart then walk across London. Then I would re-consider the wheelchair he hasn't objected since. I think the worry for him was deconditioning making things worse - which I am very aware of and therefore generally use my chair for things I couldn't do otherwise rather than to make things I can do easier, and also do a lot of physio.

When out-and-about I will also hop in and out of the chair walking small distances when I can.

So I'm a great believer in sensible use of wheel-power

[maggie]

I also have a power wheelchair for my pots. When first dx I couldn't even get to the bathroom. In order to do things for myself that's how I started my journey. Now that I am able to get around better on my feet I do that most of the time. If I'm going somewhere that requires more walking then I can do I still use my chair. It gets me to places I couldn't get to yet. I am looking forward to the day when I can not have to use it ever again.

Maggie

[issie]

I'm a wheelie too - but I also have EDS which has made my knees a reliable as a string-puppets'. Even with robot style knee braces.

For bad PoTS days my wheelchair is amazing, but I also have to be disciplined and not automatically use it whenever I feel bad - I am determined to be as fit as I possibly can with my conditions. So I have a 'no wheels inside the house' rule to I make sure I walk as much as I can - even though I sometimes end up crawling, and then when I have a massivley wobbly day (like, incidentally, today!) I will use it inside the house but then I have to do more than normal - things like putting the washing on, tidying and the like that I can't cope with on my feet. Which with my wheels I can do on really bad days, which is somewhat ironic but feels absolutely marvellous. It takes a lot of the depressing side out of bad days.

For getting out-and-about it has been perfect. Although my PoTS Dr was really not keen on wheelchairs and told me off for using it. I told him he could have my knees, dislocated pelvis and PoTS-y heart then walk across London. Then I would re-consider the wheelchair he hasn't objected since. I think the worry for him was deconditioning making things worse - which I am very aware of and therefore generally use my chair for things I couldn't do otherwise rather than to make things I can do easier, and also do a lot of physio.

When out-and-about I will also hop in and out of the chair walking small distances when I can.

So I'm a great believer in sensible use of wheel-power

How do you use a chair in London? I went on tour of Ireland and England a few years ago. It is not set up for the disabled. The cobblestone walks are very uneven and narrow and the bathrooms are not set up for chairs either. Just curious. There are also allot of steps everywhere and up the hill and down the hill. The subway's don't really accomodate them either. That's one thing I really thought about when I was there because my ability to walk was getting worse then. I did love my visit and hope to go back some day.

[ByteMe58]

I have a reclining wheelchair. It was given to me when I left the hospital. It has been 7 months and I have only used it while at doctor's office waiting rooms and a few times I visited my old job. I am not able to sit up long enough to even go around the block. But someday I will be able to, I can't wait to have that kind of freedom.

Frank

[hensor]

How do you use a chair in London?

Well, I live near a main-line station, get the train into London using 'assisted travel' so nice men come and wheel me on and off the train using portable ramps, then I get a Taxi (ignoring the queue cos I'm disabled and can do that!) to the hospital - I don't do buses and my arms aren't good enough, and the underground looks a complete nightmare for wheels. So I guess you could say I cheat!

However there is a assisted travel thing for London where you can get people who will actually help you right across London, and who know where is wheelie friendly and where isn't. And it is free! Haven't tried it yet myself though.

[Tammy]

My cardiologist absolutely refused to advice me to get one as I asked if one would help me get out more as I'm homebound. He said that then I would become completely reliant on it. So instead I just rarely leave the house. It's been 5 years and it would be nice to do a few more things but if my doctor says NO I guess that's what I'm suppose to do. Hopefully you can get your doctor to recommend one and become more active in life

[flop]

I got a wheelchair in 2007 in order to stay in work (it bought me an extra 18 months of working life). My cardiologist was furious with me and shouted at me. I thought he was being deliberately obstructive but he was actually just really really worried that I would get dependant on the chair and be unable to stand, then unable to sit and end up in a nursing home stuck in bed for the rest of my life. I was really disciplined with the chair - I had to use it at work (it was a condition of my occupational health assessment that I had to use the chair to prevent me fainting) but I kept it at work so that I wouldn't be tempted to use it at other times.

When I stopped working I pretty much stopped using the chair (but also really reduced the amount that I went out). Since then I have used it for things like going to large shopping complexes (mall) that I simply couldn't contemplate doing without the chair.

If you mainly want to use a chair for getting out can you borrow or rent one for specific trips? In the UK you can hire wheelchairs for a few weeks from organisations like the British Red Cross. Many towns have "shopmobility" services that hire motorised scooters and manual wheelchairs for the day to enable people to go shopping.

Flop

[Nikki]

Thanks for all the responses. I think I will ask my doctor about this. I really don't want to resort to that..but I know until I get anyway better, I'm going to be stuck in the house if I don't have something to help get me around. In the winter, I honestly don't mind just being stuck inside..but when it's nice outside, I really do wish I could get out more. I guess we'll see what happens.

[tinkerbella]

I have a reclining motorized chair that is for community use as holter monitors have show I'm barely able to walk around my home. I'm also suppose to be getting an ultra light chair for family use as the motorized one is 250 lbs and won't fit in a car as I no longer own one. The order is in but it take months for it to process with my insurance. Now the order just went in for the legs to raise on the motorized chair, which should have gone through in the first place as I needed it then. Even though my doctor wrote that I needed it.

F.Y.I.

I needed a PT evual. and a lot of my doctor's documentation from holtor monitors, ttt tests and other documentation that stressed that that I needed each and every feature that the wheel chair had. Good Luck!

BellaMia~*

[Simmy]

I think it may be time for me to jump onto the wheelie-wagon too.

Been thinking about it for awhile. Not at all for inside my house, just for when I go out, like to doctor appointments, shopping on weekends, or I was even thinking about attempting an amusement park this year with my young daughters. There's no way I could ever do something like that again without a reclining, leg-elevating wheelchair. Basically, anywhere where I know I'll be either standing or sitting for a long time.

I've done some quick searches and found most of them weigh around 50 pounds though. Are there lighter ones? Can they be folded to fit into a car trunk?

[tinkerbella]

how high does you HR go sitting? Then are you pushing? think about how high will your HR will go? the ultra lights will fold into a car or van. motorized will go into special van with ramps and clamps to hold it by locking the chair in place.

So go for it!!! you should see my babies on my seated walker! won't stay in a carriage anymore, but love traveling from my seat. all i need now is a bell. lol!!!

bellamia <3

[Simmy]

That's a good point, Bella, the pushing. I know that every little exertion raises my heartrate quickly so I wonder how rolling a manual chair would be, but it can't be worse than walking and I can always stop and rest.

My HR with meds: Supine 40-60. Sitting 70-90. Standing 100-130.

You can always download a "bell" app for your cellphone, or a "police car siren with flashing lights" app and the kids will have a blast.

How about one of those new 3 or 4 wheel recumbent bikes (or trikes, or quikes) that you pedal with your feet higher up while you're almost lying down? I wonder how that would work for us. Might have a problem going through Walmart.

[tinkerbella]

wallmart has the free motorized to use, maybe the park does too!

[Power Lifter]

I would be interested in those that got motorized wheelchairs/scooters. My doctor prescribed me to get one, but the company said that none of my diagnosis would qualify me to get one. When I talked to the supplier originally he indicated that a person would need to be on oxygen to get one unless they needed it in the house. I have trouble walking long distances or standing for a long time. We took my grandchildren to the carnival and I made it for about an hour before I had to lay down in the grass. I was done for the evening. Had to get the EMS to take me to the car. This is also typical for the big box stores (Home Depot, etc.) I usually use their scooters when I can. I could use a regular wheelchair but my arm strength is not good.

[tinkerbella]

You need to have your dr. get you a pt evual. for the chair either at a major pain/rehab where they deal with fitting people with chairs ( THE CHAIR REP IS RIGHT THERE) or have your doctor write an order where a pt comes to your home and does the eval there. Then your doctor documents by tests you have had that you need one for community use. Be aware of wheelchair ramps codes in your town if you need one to get in and out of your home as you need it before it is delivered.

Mine came from Ivacare, TDX SP, it's the power recline.