My name is Joy Parker and I’m grateful to have been asked to speak with you tonight.
I must tell you what a wonderful feeling it is to see so many people here tonight united in the search to find a cure for ALS.
I was diagnosed with ALS last April. For years I had felt my body grow weaker, and for years I all I wanted was my doctor to tell me what was wrong. One of the first things I learned when I thought I may have a neurological disease is – it’s not so simple to diagnose.
There isn’t a single test for it.
It requires months of visiting different specialists and doctors who begin eliminating all of the other disease you don’t have, until they run out of options-
and finally the only diagnosis left is ALS.
After almost two years of testing and observing, when my neurologist said those three letters, it was like a punch in the stomach.
Each day I wake up and ask myself, “What did I lose today? Can I still walk unassisted? Will I be too tired to work?” The hardest thing is when Nicole, my 5-year-old daughter, asks me, “Mom, when will you get better”?
ALS is a very complicated disease. It can affect any part of me that has a muscle, as it attacks the nerve connections to my muscles. I am in no pain, but I am tired.
I will admit, it is a little weird that I cannot assume that the things I do today will be there for me tomorrow.
I can let it overwhelm me, or I can take it on.
If I can’t choose to have this illness, I can choose to take it on.
And that’s what I’m doing – with your help.
Since ALS is an ever-progressing illness, I need constant monitoring from a variety of doctors and specialists as they monitor and maintain what nerve health I still have.
I know it sounds daunting that there is still no cure for ALS, however, the treatment is constantly changing and improving. A real breakthrough for treating ALS can be seen at the University of Rochester Medical Center.
An ALS clinic is held every month. The structure of the clinic is an amazingly simple and humane concept: have all of these specialists meet in one place with me, rather than me go to them. In a few hours, my Neurological Team has an accurate snapshot of my condition.
It is a collaborative approach to medicine.
And it is a real convenience for me.
But collecting and maintaining the best and the brightest for my Team isn’t cheap. Neither is the support they need to stay on top of this disease. But I am here to tell you tonight the financial support you provide is making a difference to finding a cure-and to those affected with ALS, like me.
When I was diagnosed with ALS, I was immediately put on the breakthrough drug called Rilutek. Although each month’s prescription is over $1,000, its results are priceless. Because of this drug, I am able to still walk with assistance and I am keeping the symptoms of ALS at bay.
It is one of the reasons I can stand before you tonight.
My prognosis has been lengthened from months to years. And that’s a good thing because with medication, the support of the MDA, and the continuing support of all of you, I will succeed in my goal: I will see my five year old daughter graduate from high school.
Thank you for all of your efforts and continuing to support research for finding a cure for ALS.