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.
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Friday, October 2, 2009
New MDA Clinic, Wings Over Wall Street, Good Voting Experiences
Do you know that under present laws, a lot of patients with rare diseases can't be included in clinical trials, because public health insurance won't pay? Read how a proposed law, if passed, will change all that
I always suspected ALS was connected to immunity and the immune system. This article will tell you I was right
I am attending the new MDA clinic at Weill-Cornell/NY Presbyterian Hospital, headed by Dr. Dale Lange. They have a wheelchair vendor there, who was horrified, along with the occupational therapist, at the way I was seated, and the degeneration of my hip that resulted from this. I am getting a whole wheelchair revamping, but as usual the paperwork takes a load of time, so I am waiting.
I was privileged to be invited to "Wings Over Wall Street", an event that has raised millions for MDA/ALS research. Pictured above are the event's founder, Warren Schiffer and myself.
I am also happy to report that my voting experience on the new wheelchair-accessible BMD [ballot marking device] at the polling place in my neighborhood, was a good one. The machine worked perfectly for both the primary and the runoff, and the staff was well-trained. I think I was the only person in the whole city who had anything good to say. Reports from other people with disabilities were not as positive as mine. It's amazing that Queens did what Manhattan couldn't.
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