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  • Looking for the right chair

    Hi everyone, I'm a new user; I made this account in hopes of getting some advice on choosing a wheelchair. I tend to think in lists so the rest of this may read sort of clinical in effort to be as straight-forward as possible. Thank you for reading; I'd really appreciate whatever advice you have to give! I bolded my most important points.

    A little backstory- I have Ehlers Danlos Syndrome Classical type, so my joints dislocate and my skin bruises and tears easily. I'm looking for a wheelchair to help me be more active, as it is right now my knees really limit my social activity. I'd like whatever chair I get to be able to wheel around outside as well as normal inside settings, probably mainly on dirt roads and pavement. It also has to fit through doorways because I'm in college and need to fit into my classrooms.

    I know that different chairs have different weight capacities: I am 5'1 and 100 pounds.

    This is my first time using a chair. I have been pushed around in hospital/school wheelchairs after a dislocation to bring me home, but that is the extent of my experience here. That being said, I'm really concerned about my hands. The joints in my hands dislocate pretty regularly as it is and cause me a lot of pain. I figure I can make their job easier by getting an ultra lightweight chair, anything under 30 pounds, so that there's less weight for them to push. I was also thinking about getting gloves to help.

    Last but not least, I would really prefer a chair with an adjustable foot rest so I can have my leg straight out in front of me if I need to. This is a little extra though, and not as necessary as the lightweight requirement.

    Questions:

    1) Do you find that wheelchair gloves help you push and put less pressure on your hands than if you weren't wearing them?

    2) Are certain wheel placements easier on your shoulders and elbows to push? I thought an active chair looked best because the wheels are so big- there's no angling your arms down to push (the angling down may cause more problems for me). But they're SO expensive. Because I make almost no money my price range is $300 and under, but really I'd prefer to spend at most $200. I may be able to get help from insurance though, so if you think a chair outside my budget would be perfect please tell me all about it!

    3) Do you have any advice on how to get insurance to help pay for the chair? I have very limited knowledge about this and would really appreciate your insights.

    3) After reading all of this, do you have any wheelchair recommendations for me? Am I right in thinking ultra lightweight would be a good match, or do you have a different suggestion?

    Basically, I have no experience with any of this and came here to get advice from people who've been through it and know what's out there. I have done my own research but all of this is very overwhelming. Thank you for reading this; I hope you can help me figure this out.
    Last edited by llsb; 10-09-2016, 11:53 AM. Reason: Spacing

  • #2
    Sounds like an ultra light chair is what would serve you best, but the pavement and dirt road option will be a problem, you'll at the very least need another set of tires for off pavement. And your budget isn't really realistic, unless you can find something on craigslist, or a source that'll deeply discount a chair that'll fit your needs. If you can get insurance to cover it that would probably be the way to go, but they don't typically fund chairs that you're looking for, just the bare bones basics.

    Comment


    • #3
      Wow, that's a tough price range. Insurance is a must unless you get really lucky on eBay, Craigslist, or something like that. Advice that is probably better than answering all your questions (which would most likely lead you to a chair that costs 10x your budget) is to recommend you see a seating specialist. Typically a PT or OT. Most doctors you'd see familiar with your condition would have some idea of what is near you for this. A chair done correctly is more like a custom orthotic than something you 'sit on' that rolls. Professional help would also know how best to leverage your insurance benefits to get you what you need. Not exactly what you probably wanted to hear.
      "I have great faith in fools; self-confidence my friends call it." - Edgar Allen Poe

      "If you only know your side of an issue, you know nothing." -John Stuart Mill, On Liberty

      "Even what those with the greatest reputation for knowing it all claim to understand and defend are but opinions..." -Heraclitus, Fragments

      Comment


      • #4
        Thank you for your replies! Yes I know my budget is unrealistic, but I'm poor and judging from RustyJames' reply, insurance won't actually help me out. The chair I was most recently looking at, which seems perfect for me, is over $2000. Even if I took out all my money from savings and got help from my parents I wouldn't be able to afford it. Thanks for the tip on finding a seating specialist, Oddity! That's a really great idea I hadn't even thought of.

        I'll definitely note down both of your responses for the future. If anyone else has any recommendations or advice I'd love to hear them but at this point I am feeling pretty hopeless here. It's been a hard night, I probably shouldn't even be replying right now but I really appreciate your responses. Best and goodnight!

        Comment


        • #5
          Keep your eyes on ebay every day, period. Used chairs in good condition come up there all the time.
          You need to know your seat size- width x length, seat to footplate length so that your legs fit flat on the seat surface for even weight distribution-include the size/thickness of cushion you are going to be sitting on...that also is an important item that costs a bunch.
          As for outside surfaces/gravel etc, I have ONLY used a 25inch rim with mountainbike tires and tubes for softening the jolts, low cost/found in wal mart or anywhere bikes are sold and ease of pushing. Saves wear and tear on your fingers pushing with your glove-covered palms on the tread of the tire vs catching your fingers in the handrims and between the spokes. 24inch skinny tires are 'standard' on chairs.
          get a minimum of 4 inch casters up front, 5 or 6 work better in gravel to keep from going head over heels.
          Make sure your chair is adjustable so you can make it fit your needs exactly. The better it fits, the less pain caused and more efficient to use.

          That is just a general overview- make sure you study the overwhelming number of threads on finding/buying a chair, found on this site.
          If you have good insurance, you can get a prescription from your doctor stating a medical necessity for a chair, cushion and seatback, etc
          You get same doc to request a seating evaluation and specialists will measure/fit you into an appropriate chair
          This should be your FIRST priority-talk to your doc! They should know these things.

          https://www.facebook.com/john.baxter.1213986

          Comment


          • #6
            Most of the wheelchairs sold to 'permanent' wheelchair users are around 20lbs in weight anyway. Legrests are available that adjust from lowered to elevated also. You are familiar with what I call a hospital chair. Heavy, bulky, doesn't fit any human I know and drives like a Fred Flintstone car lol. Once again, your doc can set you up for a seating eval, think of it as a wheelchair fitter/car saleseman A good one will solve the problems and have you in and out in an hour or two, your insurance would pay for it. Here in east TN, Patricia Neal Rehabilitation Center does most of the seating evals.
            You are a smaller body type and chairs on ebay are usually in your budget range IF by some strange twist of fate your doctor is clueless or you have no insurance.
            Talk to your doc, read threads on this site about chair types, manufacturers, how to fit chairs for different situations, etc.
            Maybe the SCI Nurses here will chime in and ask for the hospital name and type of doctor you are currently seeing and give you some more pointers.

            https://www.facebook.com/john.baxter.1213986

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            • #7
              Just spent a few minutes skimming ebay for smaller chairs and there are a handful of them from 200-400 bucks. Also there are a few power chairs for low cost IF you pick them up yourself, no shipping. They have a quickie s-525 in Florida that is in like new condition for 395 with batteries. I used one for my heavy-duty workhorse for over 10 years outside, it was a beast! Ebay can be your friend if you educate yourself in seating, especially if you know someone who has mechanical SKILLS that has the smarts to take a product and adapt it to your needs.
              Once again I stress that you should FIRST start with your doctor and let him put you in a position to get a seating exam and insurance pay for it. While that is happened, study this site's equipment/wheelchair /seating threads. You will learn more here than anywhere else.

              https://www.facebook.com/john.baxter.1213986

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              • #8
                This one was only $240. I wouldn't buy it, though.

                Rollin' since '89. Complete C8

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                • #9
                  Seating specialists are mostly for people with no sensation to prevent the chair and cushion from giving a person pressure sores. Since you aren't paralyzed this isn't an issue for you. Since you can also walk most likely it would be hard to get insurance to drop 6K on an ultralight chair for you. All a guess on my part though since this is an SCI site. Maybe you would get better advice on a Ehlers Danlos Syndrome site where there were people who have faced the same issues you have.

                  Originally posted by llsb View Post
                  Thank you for your replies! Yes I know my budget is unrealistic, but I'm poor and judging from RustyJames' reply, insurance won't actually help me out. The chair I was most recently looking at, which seems perfect for me, is over $2000. Even if I took out all my money from savings and got help from my parents I wouldn't be able to afford it. Thanks for the tip on finding a seating specialist, Oddity! That's a really great idea I hadn't even thought of.

                  I'll definitely note down both of your responses for the future. If anyone else has any recommendations or advice I'd love to hear them but at this point I am feeling pretty hopeless here. It's been a hard night, I probably shouldn't even be replying right now but I really appreciate your responses. Best and goodnight!

                  Comment


                  • #10
                    A CC member is selling his Icon on the exchange forum of this site.
                    Nice chair, pretty light, fully adjustable if your needs or your ability changes , the suspended seat should be a plus for your comfort… and the price is low !
                    Have a look at it : http:///forum/showthread.php?256123-...00#post1812400
                    C6-7 since mid 2002, no hand control nor triceps.
                    my website & my job (in France): Accessibility advisor www.acceslibre.eu
                    Also working on a French research about Peer counseling and Empowerment.

                    Comment


                    • #11
                      I have done a bit of searching and here is one place I found with message boards...http://ehlers-danlos.com/message-boards/
                      I am NOT running you off This site has a vast amount of resources for a wheelchair user. Understand that it is like everything else in this world, some are here to help all they can, others-not so much. If you have any questions and are trying to educate yourself to be knowledgeable when choosing a chair, stick around and read the chair threads and/or continue to ask questions.

                      https://www.facebook.com/john.baxter.1213986

                      Comment


                      • #12
                        That Icon is worth considering. It is priced at a significant discount and can be easily adapted to all your stated use cases. Also, don't be quick to discount seeing a seating specialist. Their expertise goes far beyond helping people with paralysis/issues with sensation. Especially with navigating the insurance requirements of medical necessity.
                        "I have great faith in fools; self-confidence my friends call it." - Edgar Allen Poe

                        "If you only know your side of an issue, you know nothing." -John Stuart Mill, On Liberty

                        "Even what those with the greatest reputation for knowing it all claim to understand and defend are but opinions..." -Heraclitus, Fragments

                        Comment


                        • #13
                          You should be working with a DME firm that understands how to use your history of upper extremity dislocations and documented connective tissue disorder to work with your clinician to justify the right chair for you, and you should be in contact with a case manager at your plan (ask to get one if you don't have one) to grease the skids for that order. I would question if you should be self-propelling at all, and it appears that many EDS pts have a power chair, if you look at the society Web page and also Google. You may also want to contact the National Marfan Foundation as they are larger, include EDS and likewise have members in power chairs. Even if you end up in a manual, you would still likely need an alternative propulsion method, e.g. lever and/or power-assist, to reduce your risk.

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                          • #14
                            Wow thank you all so, so much for all of your advice! You made a rough week much better, I didn't think I'd get many replies at all. I contacted the seller of the icon chair and am really hoping that works out, but if not you guys gave me some amazing advice and I'll use it to try and find my first chair!!

                            CapnGimp especially haha you rock. I'm scheduling an appointment with my GP soon so hopefully I can get that prescription. I will be studying the threads here to learn as much as I can about fitting and everything else I need to know! The EDS message board looks promising.

                            Thanks @Robotnik for pointing me to that chair! Not surprisingly, at such a low price, someone else bought it before I had a chance to.
                            Last edited by llsb; 10-12-2016, 09:39 PM.

                            Comment


                            • #15
                              Thank you again to everyone who responded! You gave me a wealth of information. Looks like I have lots of research and learning to do about this- it's comforting to know there's a place I can go for answers

                              All the best!!

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