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Thread: Need advice; looking into purchasing my first chair.

  1. #11
    That helps a lot, thank you! I've been trying to figure out the proper steps to go through - now I know what to do first. Great.

  2. #12
    Hi Seth

    Try out other people's chairs:

    Im in the UK so I don't know about American Insurance. But I was thinking, maybe try and find a wheelchair users group near where you live, or a sports club for chair users, and go along and see if you can try out a few people's chairs? Then you could get an idea of what feels right for you?

    What do you prefer/need?
    Things like dump (how much the chair slopes down from knees to bum. And backrest height. Also overall chair height - do you like to sit low slung or higher up?

    Where are you going to be using it?
    Also think about where you're going to use it most. Are there narrow doorways where you live, study or may work?
    Would handles be useful? What kind of brakes do you find easy to apply? etc.

    Safer buying:
    If you buy on ebay, I've always been advised to pay using PayPal, so if the chair turns out to be in bad condition you've got a good chance at a refund. Credit cards are also said to be safer than debit cards for payment, again because it's easier to get a refund.

    Always try the chair out in person if you can:
    Best to go and try it out in person if possible. Chairs can look great online, but have problems which would show up as soon as you sat in them or pushed. Some people even have fake feedback, so unfortunately it's no guarantee that they're being honest in their description of the chair's condition. That happened to me recently. But luckily I paid with PayPal and was granted a refund.

    Make lists:

    Break it down into steps you need to take, and things you need to check out, otherwise it can be a bit overwhelming. Make notes on things that are important to you, e.g must have push handles or adjustable cog <centre of gravity.

    2nd opinions

    DME advice sounds good, but I've heard people say DMEs have got it wrong, so don't be afraid to disagree or ask for a 2nd opinion.

    Look forwards to regaining freedom!

    Good that you're looking forwards to regaining your freedom to get around. That's a positive attitude, and the way I look at chair use too If you need a chair, they can make such a difference!

    Rent a chair?
    P.S If you get really stuck without a chair and no one can lend you a suitable one in the right size, see if you can afford to rent one for a couple of weeks. Or maybe where you study would help you with the cost? Most companies in the UK only rent out hospital type chairs. But there's a few that rent out what I'd call beginner active user grade chairs. They're usually folding :/ and a bit clunky, but may still be a lot better than nothing at all if you're needing one urgently. So perhaps it's similar in the US?

    Best of luck mate
    Last edited by Bear_on_wheels; 10-27-2012 at 06:14 AM. Reason: trying to make my waffle clearer

  3. #13
    Quote Originally Posted by Saskia View Post
    Stag, your symptoms match a mitochondrial myopathy too. Maybe you should check this out too.
    all my doctors believe I have mito, I have some overlapping symptoms with you, and its the main reason I use a wheelchair for any distance. (and sometimes, I need it all the time) I also have dysautonomia, POTS. Seeing a good neuromusclar disease neurologist could be helpful, it's hard to go undiagnosed I really sympathize.

    best of luck getting a wheelchair, I was able to get a K0009 coded chair. It's hard to get one on dysautonomia alone :/

  4. #14
    This is easily the most helpful community I've found so far - thanks guys! It's much appreciated and I feel very relieved knowing what I'm getting into now; it's hard to figure out the process on your own.

    Bear_on_wheels - fortunately, I've done so much reading (and I'm so familiar with my own body) that I've kind of got a decent idea of what I need. My balance is pretty crummy - I can't sit on stools, for example, and have been known to topple sideways off chairs. I need to feel like I'm sitting IN my chair and not so much on top of it; my hip and lower back get dodgy if my knees aren't higher than my hips. And narrow doorways, I didn't even think about that! I want to keep a pretty low profile, especially because I also have a service dog so the two of us together will take up a lot of room; I don't want to be wider than I need to be.

    On brakes - I will definitely need advice there. What is the best brake to look for for someone who has poor grip and arm strength? My fingers tend to stiffen up and go numb, so anything that requires squeezing, etc. is out - I was thinking maybe push to lock?

    I didn't know I could rent one - I definitely can't push a hospital style chair (I've tried, it failed miserably!) but I'm going to look for rental companies around here and see if I can pull that off. If I can get working, buying my own will be way easier.

    Mills - I will definitely look for a neuromuscular disease neurologist, mine right now specializes in movement disorders and Dys; great for the Dys, but she has no idea what on earth is going on with everything else. It's just not her specialty. I think the fact that I have loads of other muscular symptoms will help my case, but we'll see - and if not, well, I'll figure out how to make it work! Thank you, I'll need the luck!

  5. #15
    That makes sense! I'm going to call the neurologist Monday morning and try to get in sometime this coming week hopefully, thank you. We have quite a few good rehab hospitals around here, and I know my friend got fitted for her new power chair quite close to my home at Good Shepherd. I'm about an hour and a half out of both Philadelphia and NYC - I'm in eastern PA, just on the NJ border.

  6. #16
    Senior Member ~Lin's Avatar
    Join Date
    Nov 2011
    Indianapolis, IN
    Welcome! I have dysautonomia as well. Do they think your neuromuscular condition caused your dysautonomia? I ask because you mentioned it being progressive, and primary dysautonomia isn't necessarily progressive and can even go into remission, while dysautonomia secondary to chronic conditions tend to be progressive with poor prognosis. My dysautonomia was caused by my genetic disorder.

    My wheelchair was prescribed for the genetic connective tissue disorder, but it has made a huge change in my dysaut symptoms.
    Board Member of Assistance Dog Advocacy Project working in Education. Feel free to ask me any service dog questions!

    I am not paralyzed. I have a genetic connective tissue disorder with neuro complications and a movement disorder.

  7. #17
    Lin - it's definitely what we're thinking, because like you said, primary dys isn't usually progressive. This coupled with the muscle weakness and cervical issues makes us think there's an underlying cause, but we're just not sure what it is yet!

    I can imagine, and I'm looking forward to not risking passing out every time I stand up - it seems like it's incredibly fatigue reducing to not deal with tachycardia from the up and down.

    smashms - I'm about an hour and a half from there, so that's not so bad at all, definitely.

  8. #18
    Senior Member ~Lin's Avatar
    Join Date
    Nov 2011
    Indianapolis, IN
    Oh yeah, definitely! I had no idea how much of my fatigue was from the constant up and down. My condition doesn't let me be able to stand or walk much, so doing anything required lots of up and down. And when I first got my chair I still stood a lot just because I could. I would stand to transfer, and stand whenever I needed to reach anything. Now I've worked out how to transfer without standing, and I swallow my pride and ask for someone to hand me something if anyone is around! SO much energy gets saved.

    I'm in a similar spot right now where I have something neuromuscular going on and they don't know what yet. A bunch of symptoms were incorrectly blamed on my genetic disorder for years. It's slow going, especially because I had to find a new neuro when mine suddenly stopped practicing. It has me suddenly scared all over again about what different progressive symptoms may be in my future. Knowing what might happen is much easier.
    Board Member of Assistance Dog Advocacy Project working in Education. Feel free to ask me any service dog questions!

    I am not paralyzed. I have a genetic connective tissue disorder with neuro complications and a movement disorder.

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