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.