30 August 2010

Enablers Needed

The wheelchair guy has figured out what bits I need to install a head array control on my power chair, and my insurance company has graciously granted the regal okey-dokey. My coinsurance is 20%, and they'll let me pay half now, and half at installation. So we're good, right?

So, yeah. There's that 20%, and 20% of the lift, and 20% of the lung vac... But here's the thing. 20% of a big number can still be a pretty big number. Especially if there are dollar signs attached.

And what is it going to get me? For now, I would be able to drive my monster robo-chair more-or-less safely, and adjust the seat without help. I would be able to get out of the house, without leaving a trail of devastation and chaos in my wake. At least, not all the time. That would be cool. But for how long? We would be throwing a significant chunk of change at a solution for a progressive disease. Another run with the Red Queen. If I knew I would be able to use it for a year, say, it would be easier to commit. For six months? Maybe. For only a month or two of enhanced mobility, it probably wouldn't be worth it. And, of course, there's no way to know.

it's not like I can't think of other things to do with that money besides pouring it down the MS rathole. Assuming that MS always has first priority when allocating family resources just seems wrong to me.

But it would be cool to walk through the park across the street with Scarecrow and the dogs. It would be very cool.


  1. Live life in the moment and the moments says you deserve to enjoy it whenever and however you choose.

    It is wrong that MS puts us and our loved ones in these financial situations. Consider that you are lucky that you have the resources to allocate -

    I say (for what my opinion is worth LOL) go for it! It would be cool and it will be be cool.

    Zoom Zoom Zoom ... oh yeah that is a car ad.


  2. I say go for the quality of life. You, Scarecrow and the narrow dogs in the park sounds good for however long you can pull that off.

    Although our issues are vastly different, your post helped me as I'm sorting through things in planning for the unknown future.


  3. Even a healthy person can't predict what could happen tomorrow -- life is a craps shoot! So, go for it, I say. If you chose the wrong fork in the road, then think about reselling. However, why not try to get the most out of what sounds like a really great contraption!

  4. I so hear you. Always a consideration here too. I would love one of those expensive chairs that stand me...but so expensive, and would it help me use the toilet any easier? How long b4 I'd need something else? The MS money rat hole. People think we are so lucky to park free. PLEEZZZ I'm with the rest though, hubby is employed--get it and walk with him. THAT is priceless.

  5. Have no idea if it is right but living with MS has always been about now for us. Tomorrow is not guaranteed for anyone.

    Caregivingly Yours, Patrick

  6. Hi

    I have been thinking about you and am glad that insurance is at least paying their 80%. I think the likelihood is that the head array should take you a long way and many many walks(hopefully years) with the pups and scarecrow! Think of it this way if you've spent those other 20% this year your've got to be close to being able to get the tax deduction??!
    Take care Gretchen

  7. Independence is a precious thing. Nicole