"Well, in our country," said Alice, still panting a little, "you'd generally get to somewhere else - if you run very fast for a long time, as we've been doing."
"A slow sort of country!" said the Queen. "Now, here, you see, it takes all the running you can do, to keep in the same place."
Lewis Carroll
Through the Looking-Glass
Last week we finally got to meet with the wheelchair guy. He says a joystick control is really the best way to control a power chair and he's probably right about that, but having tried a variety of shapes, sizes, and locations for the joystick on my chair, we had to conclude that I just can't do it that way any more. When a 350-pound chair goes unpredictable places at unpredictable speeds, bad things happen. The plan was to install a head control, to see if it might enhance the safety of persons and property and inattentive whippets in my immediate vicinity. If it works, we can start worrying about what it will cost, and how to pay for it. No point going through the agony and expense involved in procuring durable medical equipment, only to find that the Red Queen is still winning the race.
So the wheelchair guy (I'll call him Mike. Because that's his name.) shows up with an extremely large, user-hostile-looking contraption, which he proposes to install on my chair and position around my head.
After about an hour of plugging and unplugging and twiddling and muttering, he gave up. The control unit, switches, head array, and chair, all made by different manufacturers, are apparently not plug-and-play. At least, they are not plug-and-play-nice. Just as well. The hardware cobbled together for the trial, which Mike assured me was a lot scarier looking than the equipment I would finally wind up with, was plenty scary looking. I already feel like a robo-monster in this chair. I would rather not make it even worse. I would do it, if that's what I have to do to be able to drive this thing. But I would really rather not.
Mike's fallback plan is to get the chair manufacturer to provide a loaner with head controls that I can try for a couple of days. He'll call us when he's got something set up. So once again, we're waiting to hear from the wheelchair guy.
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You have so hit the nail on the head, "when a chair goes unpredictable places at unpredictable speeds, bad things happen" AMEN! Patti's scooter era was unquestionably her most empowered and self-freedom stage of 20 years of living with MS. Yet the double whammy of progression of visual impairment and progression of cognitive impairment simply made navigation impossible. And as you said, bad things happen.
ReplyDeleteWishing you both the best with whatever latest gadgetry works regardless of what it looks like. Freedom is always fashionable.
Caregivingly Yours, Patrick
Zoomer - you might want to check out the message boards on wheelchairjunkie.com, as well as the articles and such posted there, to get some perspectives on head controls. If nothing else, you could post any questions you have and hear directly from others who have been through exactly what you're experiencing.
ReplyDeleteSounds like you are having a "Toyota Problem". That is what I say whenever things are unpredictable...
ReplyDeleteMaybe I should say life has a toyota problem! Hope you find the answer that suits your needs.
Great suggestion from Cranky. So sorry to hear about this, I know how upsetting it is to find the right chair, but patience will pat off and one day you will find just the right one for YOU! (I'll call you, "you" because you are you.) :)
ReplyDeleteZoom, ditto what Cranky said. Lots of folks mention that site and I've poked around there a bit with thoughts of the future. Sorry you're having to move to this next stage. Now what's wrong with those whippets -- aren't they supposed to be fast? ;)
ReplyDeletePatrick - "Freedom is always fashionable" This is brilliant! Can I steal it?
ReplyDeleteCranky - Great idea! And the Internet being what it is, one thing leads to another... I sometimes forget that there are a lot of non-MS-centric resources out there. Thanks!
Sherry - From my experience with Toyotas, I'd have to say life is a lot more unpredictable than my Toyotas ever were :P
Diane - How about if I call you "Diane" =D
Donna - They're fast enough, if they're paying attention. We call them "butterfly brains" for a reason.
Hi
ReplyDeleteI am just getting caught up on reading all the blogs I try to keep up with. As you were writing about head arrays and then Mike I had to go back to your profile and as I was guessing your from Seattle/Kenmore!
So am I!! Head controls are actually a great system. I have worked with various clients with their head arrays over the past 16 years. They are great systems and typically look just like a head rest. If Mike is from ATG he's a great guy and really knows his stuff. Would love to figure out how to reach you with out giving my email or phone number out to everyone.
I have been enjoying reading your blog and seeing the pics of the dogs, as I am a dog lover as well. Mine are boxers!
Gretchen
Gretchen - Thanks for the input. Mike is a great guy, and I'm looking forward to working with him on this. I would really like to find out what people who use head arrays think of them -- how well do they work, compared to a joystick? How hard was it to learn to use them? -- but I haven't found much. We should definitely get in touch.
ReplyDeleteMy parents raised boxers when I was a kid. I've always had a soft spot for them.