So my wheelchair has been at Rehabco for more than 3 weeks already.
Yes, I got a loaner from ALSA, but of course it had no mount for my Mercury communication device, so that meant that everywhere I went, we had to load the Mercury in the carrying case and put it on the back of the wheelchair, then take it out and set it up everywhere. Poor Judy. On our weekly trips to Starbucks, she had that duty. AND it was so slow, if you were walking beside me you had to move in slo-mo!! To go take blood and have my hair done on Austin Street, it took one hour to get there! Good thing it was a nice day! BUT then, on the way back, one of the footrests fell off in the street. So I emailed ALSA and they just brought me another loaner and took the slow one back!!
BUT, I just heard that my own wheelchair is coming back Thursday!! yay!!
Ride For Life is up in the air. RFL doesn't have loaner chairs this year, so I have to make sure my wheelchair is right and if all is okay, I will join the ride on Friday afternoon in Queens, and up to Yankee Stadium. It all depends on my wheelchair battery. I may only do half-days because I don't if my battery will hold up, and there are no back-up wheelchairs if I get stuck. Then on Saturday I hope to ride over the Brooklyn Bridge and up to Columbia for the closing ceremony, or at least to the end of ride party at Columbia Presbyterian..But this is all very ambitious, so I have to play it by ear. Since I haven't really done the fund-raising I did last year, I might scratch the whole deal. I am becoming very casual about plans and goals, because when you are in my position, things rarely go as planned.
I am into my second week with the lithium. This is an experimental treatment for ALS. It is the same lithium that they give patients with bi-polar disorder, but it is a smaller dosage than for bi-polar disorder. But nevertheless, lithium can be toxic so I have to be carefully monitored. It can affect the liver, kidneys, or thyroid, so it wouldn't be worth the risk if it damaged any of those organs. Also, I have to make sure that I am taking in enough fluid, and you know what that means.....
I am going into the "Ambassador" program for ALSTDI [ALS Therapy Development Institute]. I am invited to a big fundraiser at the Museum of Natural Hitory on May 16 [$200 a ticket], which is going to be very nice. For information on ALSTDI, click here
Until 2004, I was an independent and active woman -- a former airline sales exec and then a high school educator. Then my body kept betraying me. I was finally diagnosed with ALS/Lou Gehrig's Disease -- confined to a wheelchair and unable to speak. With life at a slower pace, I learned to live a more conscious and mindful life -- buying, eating and other choices. I listen instead of talking, and I observe instead of running and rushing.
Tuesday, May 6, 2008
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You know, these wheelchair issues--gees, I could write a book. And the cost of batteries, the fear of battery death---ONE place in Seattle will bring new batteries.
What racket at our expense.
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