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    Wheelchair eval in Boston

    Hi! I have been researching wheelchairs and, even though I do not have a spinal cord injury, this forum has been THE most helpful resource. I have a metabolic disorder that causes variable generalized fatigue, exercise intolerance and proximal limb and neck weakness, and my PCP wants me to be evaluated for a wheelchair for part-time use. I need a chair that will allow me to conserve energy, and rest as needed. I want an ultralight chair with an angle adjustable back that can be fitted with a J3 hard shell backrest and neck support and that will fit in my small car. My preference is Tilite Aero Z. I really do NOT want a power wheelchair or tilt-in-space wheelchair, which is probably what will make most sense to a rehab specialist.

    'Any suggestions on how to find a wheelchair clinic/DME... or where to be evaluated in Boston... where my vision will be considered?
    Thanks so much! Rosie
    Last edited by RosieSoaring; 27 Dec 2014, 5:32 AM.
    It is what it is... NOW what?!

    #2

    http://www.newenglandrehab.com/wheelchair-seating-positioning


    http://spauldingrehab.org/conditions...rehabilitation

    What is your insurance? That may dictate where you can go for this evaluation, and what type of wheelchair will be funded.

    (KLD)
    The SCI-Nurses are advanced practice nurses specializing in SCI/D care. They are available to answer questions, provide education, and make suggestions which you should always discuss with your physician/primary health care provider before implementing. Medical diagnosis is not provided, nor do the SCI-Nurses provide nursing or medical care through their responses on the CareCure forums.

    Comment


      #3
      Thanks, SCI-Nurse! I have HMO Blue of MA, which would cover Spaulding and probably New England Rehab. Spaulding, (who is familiar with metabolic disorders) told me that a rehab PT and a wheelchair manufacturer would both be present for the eval... and that I would then be sent to a DME they work with. But, somebody warned me to look into disatisfied patients. Once the assessment is done and the wheelchair prescribed, would I be allowed any input?

      Thanks, again, SCI-Nurse!
      Rosie
      It is what it is... NOW what?!

      Comment


        #4
        Yes your input would be allowed. It is your chair remember if your not satisified with what they recommend then ask if others can be looked into. Alot depends on why you need the chair. And what your insurance will cover for that diagnosis.
        T6 Incomplete due to a Spinal cord infarction July 2009

        Comment


          #5
          When you say angle adjustable back, do you mean something adjustable on the fly (during use) or just something that allows you to set a custom angle? The tilite chairs for example require you to get out of the chair, use a tool, and 5-10 minutes to change up the set angle of the back.

          I ask because I'm someone who requires on the fly back angle adjustment, and was very limited when I got my first chair. I went with the quickie Q7 because it was the only thing that offered this, and other than not being able to get the rsh low enough I was more than satisfied and loved the combo of the chair and Jay3 back. It has a few angle selections that you can go back and forth through. The Ki Mobility Rogue also offers a relaxed back angle option, where you can quickly adjust back and forth from your pushing angle to a slightly reclined angle. The chair that offers the most back angle adjustability is the Icon, which I'm getting soon as my second chair. It offers an essentially infinite back angle adjustment (you just twist a turnbuckle, as opposed to clicking between a couple available options). I really hope Tilite gets on it with an on the fly adjustable option, I've emailed them multiple times over the years about it and was told (each time) I'd be contacted back by someone who knew if it was on the list for development or not but never heard.

          Yes, you will be allowed input but it can be a pain in the ass. Also see if you can at all request which DME to work with. I got screwed in this myself recently, where the OT doing my eval decided to pull in a different company from the one I had demo'd the items I was getting from (something she had requested I do prior to our evaluation!). In fact, I had demo'd these items from this company because NuMotion refused to get the Icon wheelchair for me. But she pulled in NuMotion anyway, despite knowing this. The rep smartly replied that no one specifically told HIM no and so he would do it. Well he wasted 4 months telling me bullshit excuses before finally coming clean (after I'd contacted the area manager) and saying they couldn't supply the Icon chair and I'll have to start new with another company. At least I was able to pick it up with the individual who had done my demo units. He deserves to be the one getting the pay for my purchase anyway.
          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.

          Comment


            #6
            The biggest thing I had to remind myself of during my evaluation - we have similar limitations - was to ask for what I needed, directly and firmly. While my OT was wonderful in getting me into the proper chair, fit wise, there were things I needed to be very pointed about and that if I hadn't specifically said "I want ________" or "I need ________" I wouldn't have gotten - my solid back, for example, and the natural fit handrims, as well as a very soft cushion. It sounds like you have a good handle on exactly what you're after, which should go a long way toward getting you in the kind of chair you want/need.
            Not SCI - Progressive neurological disease with secondary dysautonomia.

            Comment


              #7
              Originally posted by ~Lin View Post
              When you say angle adjustable back, do you mean something adjustable on the fly (during use) or just something that allows you to set a custom angle? The tilite chairs for example require you to get out of the chair, use a tool, and 5-10 minutes to change up the set angle of the back.

              I ask because I'm someone who requires on the fly back angle adjustment, and was very limited when I got my first chair. I went with the quickie Q7 because it was the only thing that offered this, and other than not being able to get the rsh low enough I was more than satisfied and loved the combo of the chair and Jay3 back. It has a few angle selections that you can go back and forth through. The Ki Mobility Rogue also offers a relaxed back angle option, where you can quickly adjust back and forth from your pushing angle to a slightly reclined angle. The chair that offers the most back angle adjustability is the Icon, which I'm getting soon as my second chair. It offers an essentially infinite back angle adjustment (you just twist a turnbuckle, as opposed to clicking between a couple available options). I really hope Tilite gets on it with an on the fly adjustable option, I've emailed them multiple times over the years about it and was told (each time) I'd be contacted back by someone who knew if it was on the list for development or not but never heard.

              Yes, you will be allowed input but it can be a pain in the ass. Also see if you can at all request which DME to work with. I got screwed in this myself recently, where the OT doing my eval decided to pull in a different company from the one I had demo'd the items I was getting from (something she had requested I do prior to our evaluation!). In fact, I had demo'd these items from this company because NuMotion refused to get the Icon wheelchair for me. But she pulled in NuMotion anyway, despite knowing this. The rep smartly replied that no one specifically told HIM no and so he would do it. Well he wasted 4 months telling me bullshit excuses before finally coming clean (after I'd contacted the area manager) and saying they couldn't supply the Icon chair and I'll have to start new with another company. At least I was able to pick it up with the individual who had done my demo units. He deserves to be the one getting the pay for my purchase anyway.
              Lin, I have been following your posts (and identifying with you) about the Q7, which had initially been my choice... due to adjustability on the fly. But, I have read so much about the Q7 not holding up and have seen one in person that was pretty much shattered. I have also considered the Ki Rogue. I guess I figured that the COG would need to be adjusted along with the back angle... so I was willing to give up adjustability on the fly. I also have limited stamina in my arms, so would most likely be pushed by my husband, another consideration. Otherwise, I totally agree with all of the reasons I have read that led you to the Q7!

              This is the first time I have heard about the Icon! I will definitely check it out! (Unfortunately, I need a 20" width!) I am very interested to hear anything more that you would like to share about your situation and what you want in a chair. Do you have a neck/head rest?

              Rosie
              Last edited by RosieSoaring; 27 Dec 2014, 1:17 PM.
              It is what it is... NOW what?!

              Comment


                #8
                Originally posted by Broadsey View Post
                The biggest thing I had to remind myself of during my evaluation - we have similar limitations - was to ask for what I needed, directly and firmly. While my OT was wonderful in getting me into the proper chair, fit wise, there were things I needed to be very pointed about and that if I hadn't specifically said "I want ________" or "I need ________" I wouldn't have gotten - my solid back, for example, and the natural fit handrims, as well as a very soft cushion. It sounds like you have a good handle on exactly what you're after, which should go a long way toward getting you in the kind of chair you want/need.
                Broadsey, thanks so much for the encouragement! I have related to your story and have been following your progress with your new ZRA! Rosie
                It is what it is... NOW what?!

                Comment


                  #9
                  No I do not have a head/neck rest, that sort of set up would be dangerous to recline the angle in, you WOULD need to change the COG or be using a tilt chair when that sort of set up is required. I use a mid thoracic height back, it goes to just below my shoulder blades for as much support as possible without interfering with pushing. In adjustable on the fly backs, if you're going to recline it, this is only while not moving. It would not be safe to push around without changing the cog or at the least being very aware of the change it will make to your actual center of mass. I occasionally push while reclined, which is about 10 degrees or so, but only when its short distances such as from being reclined in the waiting room, to the exam room where I would be immediately reclining again to wait. After reclining the back I also scoot my butt forward which helps position my weight further forward, and try to make sure my casters are positioned in front of the chair for stability. And of course its the most safe with the back of the chair against a wall.

                  In my new chair, Icon, I'm getting a medium height ADI back. I preferred the slight "hug" around my back from it than my Jay3 so I chose that with the PSIS insert for custom support. I also may just swap out the velcro wedges from my Jay3 and put the PSIS in my Jay3 if needed to better customize the support for my scoliosis. I also liked the shorter actual back, and the open area with no pressure against my sacral area. The positioning just below my shoulder blades will be the same.

                  I've had no issues with the Q7 holding up, mine still looks like new. However I am not an active user, I'm unable to go racing around or jumping curbs. I do know people who ARE active users doing these things in a Q7 with no problem. I have a good friend (para) who competes/trains in schutzhund with her german shepherds, and is the head trainer of a service dog training organization who also uses a Q7 and loves her chair. Personally, people get much too hung up in this brand or that brand when whats most important is making sure the chair/item you choose completely meets your needs. Most of the complaints I've seen against specific chair models were a result of incorrectly specc'd chairs. I've seen someone trash tilite chairs when the problem was he went with the cheapest accessory items possible, casters, wheels, etc that were the problem. The one exception I have to that is Pride products, that is one brand I would avoid.

                  The kind of back adjustability you're looking for then is offered by every brand, as long as a specific model with welded back is not chosen the angle is adjustable.
                  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.

                  Comment


                    #10
                    We can do a 20" wide chair, but we do them as custom orders.

                    Comment


                      #11
                      Originally posted by JeffAdams View Post
                      We can do a 20" wide chair, but we do them as custom orders.
                      JeffAdams, how would I go about checking out the Icon... or placing a custom order? Can a neck/headrest be added (such as the Whitmyer Contour)? Thanks! Rosie
                      It is what it is... NOW what?!

                      Comment


                        #12
                        Rsie i have never seen a head or neck rest added on anything other than a tilt in space chair. Not saying it can't be done i just am unsure how they would mount it.
                        T6 Incomplete due to a Spinal cord infarction July 2009

                        Comment


                          #13
                          Originally posted by Smashms View Post
                          Rsie i have never seen a head or neck rest added on anything other than a tilt in space chair. Not saying it can't be done i just am unsure how they would mount it.
                          Smashms, an independent DME suggest a J3 back with a Whitmyer contour headrest... similar to a Quickie Iris set-up. The need for neck support/positioning was the original impetus for a wheelchair search. I really hope for a chair that can support my neck AND fit into a Mini Cooper.
                          It is what it is... NOW what?!

                          Comment


                            #14
                            With the disclosure that this topic is a bit out of my personal knowledge...I think I may have thought of something interesting. While I don't know enough about seating, so you'll have to check this with someone (perferably someone impartial who can look at your whole body) - I have a Matrx PB back on my Quickie Ti. This back is available in a variety of widths/heights and I think I have a 16w 18h. They also have different contours available (for lateral, plus lateral additions if you need them). I just took a look at the Southwest Medical website and found a headrest adapter for the Matrx PB. I also found a headrest mount of a different brand that mounts on other chairs between the back canes. Well fancy that. It's not letting me make links. Hopefully this will make links automatically then: Headrest adapter: https://www.southwestmedical.com/pro...tem-25887.html Picture: https://www.southwestmedical.com/pro...?imageID=19109 Back cane headrest adapter: https://www.southwestmedical.com/pro...unt-22995.html I really like the Matrx PB I have on my Quickie Ti - a lovely supportive back for those sore days or rough surfaces (I fixed the Quickie Ti up to be my outdoor chair now, backup chair for my daily chair; run a Quickie R2 with a standard sling back for daily use mostly) - and my back survived camp thanks to my Quickie Ti and Matrx! The Matrx has back cane mounts and adjustments within that, then can supposedly be adjusted from there but I'm not sure how. I think it requires a tool to do it, so it may not be on-the-fly but for some reason I thought it was. All I know is that they can really tighten it down nice around one's unique back issues; they were able to tighten it around so it hugged me in places but didn't hug me in others where it was painful and it was awesome when I used it as a daily chair. Still is awesome...that chair's gonna have to go out with me this week, as I slightly tweaked R2 and haven't gotten it untweaked. Whoops. The Matrx also comes off the back of the chair, so if it is too long to fit in the car as attached the back (and subsequent headrest), you should be able to remove the Matrx and just set it aside where it fits better. Then you'd only have to cope with the back canes on the chair in order to fit it into the car. As long as those passed by it would be fine. The mounts for the Matrx are added to the back canes so they don't really add that much more space. If you need pics let me know; be happy to take some of my setup. Good luck! Mystery

                            Comment


                              #15
                              If you're going to recline the back angle and need a head/neck rest, you really might want to consider a tilt in space chair. Especially if you're going to have to be pushed by someone else anyway. Alternatively, you might want to consider power assist so you don't need so much assistance being pushed. And a tilt in space chair is going to be much more difficult to push yourself around in. But a head and neck rest goes up much higher than a standard backrest, between that and the weight at that height really changes the balance of the chair around, and I think it would be dangerous to recline at all unless you had the brakes engaged in the chair and were backed up against a wall for safety to not flip over backwards. If you move your cog really far back for stability, thats going to make it so much harder to push and still not going to be enough to recline with the height and weight of a head and neck rest. A tilt in space chair is designed to move the seat forward as the back tilts to ensure you don't end up with too much weight behind your center of mass and flip over. So just keep that in mind if you decide you DO want to do any sort of adjustment on the fly.

                              As long as you get a folding back, the issue with a head and neck rest is its going to stick far beyond the front of the frame once the back is folded. So with a minicooper, depending on where you want to load the chair this could definitely cause a problem. If using the hatchback and someone loading the chair with the back seats folded down it may be possible, but also something you might want to figure out a way to test first if you require a headrest. I know loading my chair into the back of a minicooper this way, my 16" depth frame with no extra inches before the bend didn't have much of a buffer. I think it would be difficult to position in the front seat, especially if you require armrests. And a tilt in space chair is a whole new topic on loading and one I am not familiar with.
                              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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