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  • #46
    If I recall, the Tailwind is the former iGLIDE by Independence Technology, a Johnson & Johnson Company. For those who the chair worked for, they seemed happy with it, and it seems like the changes Tailwind made are all good.

    My only concerns would have to do with the integrated nature of the chair and the power-assist. I would make sure that the core chair works for her, and that there is not a compromise for the power-assist. I see that the chair itself is custom made, and that may also not be so practical for a growing kid, but maybe they have some suggestions about that. It's also not clear about what the weight is when not using the power-assist if she wants to move around completely manually. It says the overall weight is 56 pounds and 30 pounds when transferring the chair to a vehicle. It looks like the battery can be pretty easily removed, so I would think that would make it not too heavy.

    I found this video that may be of help:


    About the SmartDrive, can you call another place to see if they are more accommodating? I've heard of others being able to demo at home, and especially with a 9 year old kid, I think that's important.

    You are right about the ZX-1 being heavy for transporting, but I just wanted you to be aware of it. There are a few others out there that can be removed from the chair, but most also have a joystick. Here are some links, just in case they may be of some use later on: Otto Bock z10 / z10-ce, Excel Click & Go, AAT max-e, Benoit Solutions Light Drive / Light Active.

    Good luck with the Tailwind. I hope this works out for her. I know how much work it can be to find the right equipment, and finding good stuff for a growing kid must make it even harder.

    Just as a note, I know that here in Europe it's the time of year for rehab trade shows. I don't know where you live, but going to one might be a good opportunity for your daughter to test a lot of different equipment, and might be a fun day out for her.
    Last edited by elarson; 04-26-2014, 01:11 PM.
    Partner of an incredible stroke survivor. Limitations: hemiparesis and neglect (functional paralysis and complete lack of awareness on one side). Equipment: TiLite ZRA 2 and 2GX, Spinergy ZX-1, RioMobility Firefly. Knowledge: relative newbie for high-level equipment (2012), but willing to try to help others who are new with similar limitations (definitely not a guru, but inquisitive).

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    • #47
      Gotta love this forum, so happy I stumbled across it...lol.

      To everyone here, thank you from the bottom of my heart for all your input and assistance. I really appreciate it. Thank you.

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      • #48
        Elarson has made some really good comments. The only other thing I would add is that both the Tailwind and the e-Motions add some width to the chair. So you might want to check how that additional width fits in your house (specifically doorways).

        I apologise for my ignorance regarding UCMD (googled it so have a limited understanding), but if your daughter can use a manual chair with no power assist (inside on smooth floors for example), and just needs assistance outside, then I definitely recommend the Firefly, as you may have seen from my other posts. One big advantage of the Firefly is that the user has the handlebars to provide some upper body stability, particularly when braking whilst going downhill. (Primary advantage for a child is that it is fun to use!).
        Gordon, father of son who became t6 paraplegic at the age of 4 in 2007 as a result of surgery to remove a spinal tumour.

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        • #49
          Hi Gordon, thanks for the response...

          Wow...that would turn it into a trike! Definitely not something she could use in school, and that's where she will be using this chair the most. As for a manual chair, while she does have upper body strength, it's not enough. Gotta have the added help at all times.

          About the width issue, I know that the e-motion wheels add width for sure, but everything that I have come across in reference to the Tailwind says that it doesn't add any width because everything is contained under the seat. Guess I should look into that just a little more to be sure. Hmmm...

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          • #50
            Ok, knowing she needs the extra assistance all the time, then it seems that you are looking at the right options for her. (Although my son does use his firefly at school, he doesn't use it indoors).

            Regarding the Tailwind width, I've just checked their website again (as I couldn't recall exactly why I'd picked up on the width issue). I think they are being a bit sneaky...

            They state: "Power assist added width - none."
            Then they state: "Overall Tailwind Width - add 8" to seat width."

            So that means 4" added to each side, which seems to be a lot for a child's chair. (I've just measured my son's chairs, and they are both 3".)

            The extra width may not be a problem for you (and the e-Motions would be wider still), so being able to try one out is great.

            Having watched the Tailwind video, I would ask if they are compatible with a FreeWheel, as that would work even better in his off-road efforts, and might help you (for pushing, assuming you can with a Tailwind) and your daughter too.
            Gordon, father of son who became t6 paraplegic at the age of 4 in 2007 as a result of surgery to remove a spinal tumour.

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            • #51
              I guess I am wondering if the power-assist is taking more priority than the chair. If she is going to be using a chair all day, the chair should be the first focus, and the power-assist should be secondary to that (just my 2 cents). Yes, they need to work together, but if she is uncomfortable in the chair, no amount of power-assist is going to fix that.

              I knew nothing about Ullrich congenital muscular dystrophy (UCMD) but I just read a bit. One thing I saw mentioned was proper sitting posture to prevent curvature of the spine (scoliosis). There are quite a few on the forums with experience with this, and a good supportive backrest is probably really important if this is a risk for her. Have the OT's/PT's given any other advice, other than the joystick? I really think they should be and you should push for it as much as possible.

              Have you also looked into a chair like Icon? Gordon can tell you more about it, but I hear it is good for a growing kid with a lot of adjustability and many options for specific needs like supportive backrests like an ADI. Another to look at is the TiLite Twist.

              Other than the rep not being so responsive for SmartDrive, I still think you might want to demo it if her upper body control is good. It has many of the requirements you have mentioned, and won't add a lot of weight or width to the chair.

              I hope I did not overstep with these concerns/idea's.
              Partner of an incredible stroke survivor. Limitations: hemiparesis and neglect (functional paralysis and complete lack of awareness on one side). Equipment: TiLite ZRA 2 and 2GX, Spinergy ZX-1, RioMobility Firefly. Knowledge: relative newbie for high-level equipment (2012), but willing to try to help others who are new with similar limitations (definitely not a guru, but inquisitive).

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              • #52
                I don't know much about Manual Assists, but wanted to mention them in case they might help.

                The RioMobility Pivot has a lever drive for kids, and there is also the NuDrive and Wijit. MagicWheels are wheels with a geared hub.
                Last edited by elarson; 04-29-2014, 07:36 AM.
                Partner of an incredible stroke survivor. Limitations: hemiparesis and neglect (functional paralysis and complete lack of awareness on one side). Equipment: TiLite ZRA 2 and 2GX, Spinergy ZX-1, RioMobility Firefly. Knowledge: relative newbie for high-level equipment (2012), but willing to try to help others who are new with similar limitations (definitely not a guru, but inquisitive).

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                • #53
                  Overstep? Not at all! I welcome each and every opinion thrown my way, as this is all new to me and I am just petrified of making the wrong decision here. I will take a look at those links you posted there, and try to make some sense of all of this...

                  As far as the comfort goes, I'll have to get into that with the sales rep, I'm hoping there's some options there, and that they ARE actually taking comfort and support into consideration. Would love to hear some Tailwind users opinions on that subject...

                  And good eye Gordon on the width measurements. I never would have caught that...lol

                  ON EDIT: Just spoke to the Tailwind rep once again, and he assured me that the seating options are endless, and that we can have whatever support is needed on it once she is measured...he also spoke of an affordable "frame upgrade" program that makes it reasonable as she grows to switch into a larger frame a few years down the road. I'm sure I'll get the whole sales pitch on Monday when I see him. *sigh*

                  None of this can be simple huh? lmao
                  Last edited by Fast Joey; 04-30-2014, 06:16 PM.

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                  • #54
                    My daughter got to test out the Tailwind the other day, and she just LOVED it. So did I. Pretty sure this is gonna be the one.

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                    • #55
                      Great to hear. I hope it all works out. Keep us posted.
                      Partner of an incredible stroke survivor. Limitations: hemiparesis and neglect (functional paralysis and complete lack of awareness on one side). Equipment: TiLite ZRA 2 and 2GX, Spinergy ZX-1, RioMobility Firefly. Knowledge: relative newbie for high-level equipment (2012), but willing to try to help others who are new with similar limitations (definitely not a guru, but inquisitive).

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                      • #56
                        Just wanted to update this a bit. The manufacturer was really excited about the prospect of getting my daughter into this chair because she was going to some places where a lot of people that should see it, WOULD see it, and it would be getting the word out for them. When they heard I was taking her to NIH in DC for testing at CMD COM for the third straight year with all the other kids with her condition or similar, and also to MDA camp at the end of this month, they were more than happy to put her in a loaner for now. So she has been using the Tailwind for about a month now! They have been really accommodating to put it mildly.

                        If ANYONE is interested in this thing...go for it...give it a try. It has been absolute heaven for her, she absolutely LOVES it. I don't have a bad thing to say about as of yet...it has been a godsend for us, and it is exactly as advertised. I can't even keep up with her now! So far , so good...just amazing.

                        BUT...and there is always a but, huh? The provider is telling me we will get denied through insurance and they need a guarantor before they will even consider this in any way. Quote: "His policy is direct bill: no pre-auths but I know they will deny it; we will need guarantee to process this claim"

                        Any advice on this? Why is it so difficult to get my daughter into this chair? Why would they deny her...she can't walk! Surely they will pay SOMETHING...no? And I have an organization willing to pay $2,500 towards it! Then I can come up with the rest SOMEHOW...I'm sure of it.

                        Any advice or experience on the insurance end of things, I could really use right now!

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                        • #57
                          That's great to hear that you've had the opportunity to give the Tailwind a good trial, and thanks for updating us with that info.

                          But not so good on the insurance news, and I'm afraid I have no advice as I don't know anything about US insurances. If it were me, I'd be tempted to contact your local newspaper, explain how your daughter has been loaned this chair, but now has no means of keeping it due to insurance not covering it...I'd bet you could raise the additional money very quickly that way....

                          And you've obviously managed to identify one organization willing to come up with a significant amount...are there any others you can approach?

                          Good luck.
                          Gordon, father of son who became t6 paraplegic at the age of 4 in 2007 as a result of surgery to remove a spinal tumour.

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                          • #58
                            Good to hear that the Tailwind is working for her.

                            I think it is definitely worth being in contact with your insurance company to ask about what they will cover. I've done some research for friends about power chairs and power add-ons and what Medicare covers, and I think that often insurance companies follow their lead. Perhaps that is different with kids, I really don't know.

                            I know for Medicare, a power assist for a manual wheelchair for adults, it is often very difficult to get covered unless it is needed for mobility-related activities of daily living (MRADLs) within the home. Rarely do they cover for what is needed outside of the home. For national coverage, see National Coverage Determination (NCD) for Mobility Assistive Equipment (MAE) (280.3).

                            The Frank Mobility website has some good information about funding for a power assist based on E-motion wheels, which I think would be similar for something like the Tailwind. On their sales sheet they list the HCPCS Code K0005 & E0986 which is the same as for E-motion wheels.

                            Best of luck to you.
                            Partner of an incredible stroke survivor. Limitations: hemiparesis and neglect (functional paralysis and complete lack of awareness on one side). Equipment: TiLite ZRA 2 and 2GX, Spinergy ZX-1, RioMobility Firefly. Knowledge: relative newbie for high-level equipment (2012), but willing to try to help others who are new with similar limitations (definitely not a guru, but inquisitive).

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                            • #59
                              Got some more info on this...the reason the supplier doesn't want to touch it is because he doesn't think I can handle it financially, and is afraid he won't make a profit. And he's right. The max insurance will pay (and yup, those were the two codes I needed), is $5,200 if I squeeze every dime out of them. Add the $2,500 that is being donated and I STILL come up about 4K short of what I'll need to get her into this chair. Damn, they make it tough, don't they? Friends have suggested it's time to start thinking of a fund-raiser or something, because there's just no way I can handle it in my position. Ugh!

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                              • #60
                                So the Tailwind costs around $12,000? Ouch. I didn't realise it was so expensive...but had I thought about it a bit harder, I should have known...(nothing in the equipment world is cheap!).

                                If you aren't able to find the remaining $4k, I'd be looking around at some alternate options. Perhaps the combination that my son has (Icon + Firefly) may not be quite as suitable for your daughter, but from a cost perspective it comes out at under $7k....
                                Gordon, father of son who became t6 paraplegic at the age of 4 in 2007 as a result of surgery to remove a spinal tumour.

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