we had our first power chair evaluation for austin today. can i just say YUCK! it is such a daunting task, we tried the new permobil, that tilts and raises and lowers to the floor, great features but we cant navigate it throught the house without smashing into corners. the other chair was mid wheel drive, and had trouble getting around the vermont landscape. the PT was working hard, but austin was frustrated trying to learn the joystick, its so different from the scooter controls, and was i was menatlly knocking down walls to make it easier. the real sucky part is that we followed ADA guidelines when we built our addition, but we were shocked to learn that turning radius for most kids power chairs is much wider than ada suggests. the result is that either we get a small chair with less features or we knock out walls to fit the chair, i think we're leaning towards the latter. this is so time consuming and frustratng, and we just dont need to deal with this in addition to coming to tearms with reality. WE ARE POWER CHAIR SHOPPING! this is it. the thing we tried everything to avoid, my son will be in a wheelchair, use a van lift, need me to do everything for him. if this has happened than everything else will too. i think it was scary to austin too, he ended up walking away saying he didnt need a chair, he can walk...

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Comment by Jennifer Shumsky on April 1, 2009 at 4:30pm
((((((HUG))))) I can't even think of what to say, I just want to hug all of you and then take you out for drinks. Truly a Duchenne Sucks day
Comment by Mindy on April 1, 2009 at 2:03pm
Jenn - I'm so sorry. I dread the day when we have to deal with that.

Would you mind telling me the turning radius that the bigger chair actually needs? We're just getting started on the remodel process, and definitely don't have the money to do it twice...

Thanks,
Mindy
Comment by Kim Innabi on April 1, 2009 at 1:16pm
Hi Jenn:

I'm so sorry that you had such a horrible experience with the wheelchair - DMD sucks! My son is 12 1/2 and has needed a power chair for over a year (he can still stand, but not walk more than a few yards). We live in California and have private health insurance that won't pay for a wheelchair, but we also don't qualify for state funding. I feel for you so much, with not wanting to see your son in a wheelchair and going through all of that with the van and needing to help him with everything - it's exhausting! I feel the same way. It really is horrible to see it happening!!! Thank you for sharing your experience - it has really helped me, as I don't get to try out different options and see what works best - Calif. doesn't do anything to help us in that regard. Now I know a little more about what to look for. I have been hoping that I would be able to get the Permobile C500 or C400Jr. for my son, with the stander. Isn't it something that things never seem to work out right...even when we plan ahead! Keep your chin up...it WILL be okay, even though it will take a lot of time and frustration and a huge amount of "getting used to". Good luck and all the best to you and your son.

Kim

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