Wednesday, December 28, 2011

A Very Motomed Christmas!

This summer, Amy, Walker and I went to the Abilities Expo.  It was something we used to go to when we were younger with Mom and Dad, and this year it was an opportunity to scope out styles of van conversions, see what other new technology was available for Amy, and work on getting our bearing in our new roles with Amy.

This is when we first laid eyes on the Reck Motomed.
It's an exercise bike that you can use on both your upper and lower extremeties from your wheelchair.  In addition to working like a regular exercise bike and providing resistance, it also does passive range of motion, which is what Amy needs -- it moves her.  Unlike other similar devices, the motomed has a feature where its computer can detect Amy's spasms and stop running when she is in the middle of a spasm, and start again when the spasms ceases, and the spasm threshold is adjustable. 

Amy gave it a whirl, and we were IN AWE.  I didn't realize Amy could move the way I was seeing. She said it felt great to get moving.  I want this, she told us.  I want to do that again. 

The price, however?  5-7 k.

I was glad it wasn't 10-14 k, but the price was still impossibly high, even if we got one used from the company.   I ran it by one of Amy's fabulous doctors, and he was all about it, but there was just no funding available, from Medicaid or from another source.

As with all things, I didn't let it go, and turned to searching craigslist nationally to make my dreams come true.  For five months, nothing. 

Then, a month ago there was a listing for a Reck Motomed Viva 2, outside of Phoenix, AZ.  A man had died -- a dad -- this family was selling his equipment.  It was at once so sad, and so lucky for us.  Against everything craigslist advises, we mailed a money order and arranged for a shipping company to pick it up.  The former caretaker of the man handling the transaction seemed geniune and was on linkedin, and searching the name of the deceased man, we came across his flickr account. 

I'm not going to go into what it cost.  I will say only that it cost more than my my first, second, or third cars, but friends will remember what my first, second, and third cars were like.  The shipping cost exceeded what we'd thought we'd be spending on two Christmases for Amy.  On the Friday before Christmas, the largest box ever was delivered to my aunt and uncles door.

Everyone opened their Christmas presents, and as the last present under the tree disappeared, Annie turned to Amy and said "Are you feeling left out?"

Walker stood in front of Amy as I rolled her present in.  "What do you think it is?" someone asked her.

"A bigger TV?"

Walker stepped out of the way.  Amy laid her eyes on the giant bow atop her dream machine and knew what it was immediately.

 Then the thrilled screaming began. 

Followed by an excited trial run (slightly hampered by some unfinished assembly, but joyful nonetheless).

Amy currently gets botox shots to help reduce her spasticity and the pain she experiences from being so tight.  We're not going to stop with the botox, but we it's a constant battle of waiting for insurance approval and long long laspses in between treatments that leave Amy all locked up.

Theoretically, using the motomed will help naturally reduce that tightness and spasticity.  More physical activity will also provide a way for Amy to blow off steam, to invest in herself, and to build strength.  With time, as Amy does build strength, she may even be able to use the exercise bike function and burn calories.

Our biggest hope --what makes this expenditure totally and completely sane -- is that a year from now, or even two years from now, that between using her motomed and her stander, that Amy will be able to do a standing transfer. 

A standing transfer would change Amy's life.  It would mean she could work more places and visit more places, because she'd be able to use the restroom without special lifting equipment.  It would mean that she could ride in cars.  It would mean that she was healthier and stronger.  It would mean that she is generally easier to provide care to.  Knowing that her needs can be met anywhere, and with less difficulty would give Amy security and peace of mind. 

STANDING TRANSFER in 2013!  That's my new battle cry.


Monica said...

You really, really amaze me Alison! Congrats on Amy's new equipment! I just love the pictures of her face when she got the gift. She looks a lot like your mom.

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