Thursday, December 24, 2009

An Almost-New Wheelchair

It's Christmas Eve and I am getting ready to go to my family tomorrow for the day.  I am honored to be invited to a New Years Eve party on Long Island, but there are challenges getting me there, so I might not be able to go.  The lady willing to drive me has an SUV with no back seat, so I would have to lie reclining in the hatch.  If you are familiar with ALS, you know that I can't breathe in a reclining position.  So I would need someone with a regular car in which I can sit up in a regular seat.  Access-a-Ride does not go that far across the border into Nassau, and the Nassau Able-Ride would connect at Long Island Jewish Hospital, but doesn't operate after midnight, so that takes care of the return trip.   To rent an ambulette would be prohibitive.  There was a man who came up to me recently and gave me his card; he runs a wheelchair-accessible limo service.  I'm sure it's expensive, but I will see if I can find the card.  It's not easy being disabled and not have a wheelchair van.  Those of you who do should count your blessings.

I received my modified wheelchair and got to give back the horror show loaner that was fit for a 350-pound man, and neither reclined, tilted, nor elevated.  Wow, if ever I felt my hands were tied!!   I couldn't nap, which was a real hardship, and I could hardly reach anything!

Enter my modified wheelchair, which has power footrests, so now I can elevate my feet to alleviate the swelling.  It also has pads and guides to help me sit straighter in the chair, rather than leaning over to one side and it keeps my legs straighter rather than splayed.  I look less freaky and more like a human being.  However, I am higher, so I've had to get used to that, and the seatbelt that I recently paid $46 out-of-pocket to have installed, is too short.  So when the wheelchair company comes after the beginning of the year to install my new tires, I hope they will be able to install a longer seatbelt.

Every five years we are entitled to a new wheelchair, but I am not due for that until 2011 because I got this chair in 2006.  However, I am distressed to learn that MDA had to eliminate the $2000 grant to first-time wheelchairs.  Without that, I never would have been able to get my chair, because the co-pay on a $25.000 wheelchair was covered by this grant.  Every charity and non-profit agency has had to budget and remove certain services in this recession  Both MDA and ALSA have had to eliminate their transportation program that gets many patients to the ALS clinics.  Just another casualty of the economic crunch!!


J Rodney said...

I hope you have a wonderful day with your family tomorrow Fern, and I really hope you are able to go to the New Years Eve party as well.

Steve said...

Fern, have you considered a seatbelt extender? Enjoy following your posts. All the best for the holidays and 2010!


MamaSaid said...

Hope you had a wonderful holiday Fern! How exciting you have a chance to come to Long Island for a New Year's Eve party...I hope it works out that you can make it. I am trying very hard to think of services that might help, if I come up with anything I will be back to share it.