Speech from the MDA-ALS Gala “A Night at the Races” 2013

Hello, I’m Joy Parker.

I’m honored to have been invited to speak with you at the Gala. This is the third time I’ve done this, and even though giving a speech now takes a lot out of me, I am glad to say—I can still speak! As a continuing survivor of ALS, I’m asked, and more often its my husband who gets asked, how long I can expect to live with this disease

The average number is 5 years after diagnosis. I was diagnosed in April of 2010.

ALS is difficult to diagnose. There isn’t a single test for it.

I spent months of visiting different doctors and specialists. The doctors eliminated all of the disease I didn’t have, and to paraphrase Sherlock Holmes, when you eliminate all the possibilities, whatever’s left is the truth. And the truth was, I had ALS.

Research into the behavior of ALS is giving our community hope not just for a cure, but for a more meaningful way to predict how ALS might affect us. Researchers in Ireland have found the better your cognitive function is, the better your chances for living longer with ALS. I guess this might be why Steven Hawking, the smartest man on the planet, has been able to live with ALS for over 50 years!!

I want to thank you for your continued support of research, not only to find a cure for ALS, but to support findings like these that help give families a better sense of how much time they have as they live with this disease. This is the third time I’ve spoken at this event. The first time I was able to stand at the podium. Last year I was in a wheelchair. This year I’m in this baby, thanks to the MDA.

I continue to work, and be a mom. My disease has progressed, but my goals have remained the same. I still plan on seeing my youngest daughter graduate from High School.

Thank you.

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