Speech from the MDA-ALS Gala “A Night at the Races” 2012

Thank you.

It is a pleasure for me to be invited back for a second year in a row. I want to speak to about my ALS and what your support has meant to furthering the work of the MDA.

I’d first like to thank all of you for your support and generous commitment to finding a cure for neuromuscular disease.

Some of you may have noticed there is something a little different about me.
Last year when I spoke at the Gala, I was standing.

This year I am not.

You might think this would be a setback to my goal of seeing my seven year old daughter graduate from high school.

But it isn’t.

If that was my only reason to keep going-to keep existing, then I would be missing the big picture. It is an important goal and a good reason to exist-but it is not the only one.

If I only concentrated on living one more year, I would have missed that year’s worth of important celebrations, birthdays, holidays.
I would have missed my older daughter’s first prom.

I would have missed the simple joy of going out to dinner.
Or having a dinner prepared for me by another family.

Or the scent of lilacs as they bloomed almost a month before they were supposed to because of the unusually warm winter we had.

The finality of ALS has taught me to appreciate the quality of my life as well as the distant goal I have set for me and my daughter.

In a similar way, the goal of the MDA to find a cure for neuromuscular disease is a distant one. It is an important one and a good reason to exist-but it is not the only one.

The MDA’s goal is also to provide for the more immediate needs of myself and the thousands of others that live with this illness.

They provide equipment, information, and access to exceptional care professionals.
They do it with ease and compassion.

They help me maintain an independent quality of life. By being a constant resource of care and support, the MDA has helped me to achieve both of my goals:
to live another year-and to have enjoyed living in it.

And so do you. Your generosity and financial support allows me to continue counting down the years as well as celebrate the special moments within them.

And for that I am so grateful.

Thank you.

Joy giving speech on stage

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Speech from the MDA-ALS Gala “A Night at the Races” 2011

Hello.

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 feel…heavy.

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.

Busy As A Bee!

I’ve just started getting back into creating art again. I don’t know if it’s Spring Fever or that I’m reading old American poetry (The Mentor Book of Major American Poets), or if Nicole has inspired me with her amazing work.

My next show coming up is at the First Unitarian Church in the Williams Gallery. It’s a Church Member show so I only have 1 photo. It’s my gorgeous Windows with Baskets shot. The show runs from April 8 to May 16th.

This super cool show is an anonymous one for the Rochester Contemporary Art Center called 6×6. I jumped into using acrylics this time! One I’ve called Summertime and the other is called ALS. I had a great time & my youngest daughter made something as well! This show runs June 4 until July 10 – but they will have all the artwork on the website for people to purchase for $20 a piece. Proceeds go towards the art center.

If you’ve been following my tweets you’ll see that I’m trying to do a little poetry for poetry month. It was something I thought about doing for a while, but then we needed something for our Poetry Month page at my real job & I thought it might be fun to get people engaged, so far, not so much. Oh well! I encourage everyone to write a few words on Twitter and use #wxxipoems to see what we can come up with!

Springtime in Rochester

Well it’s April 27th and it snowed today. Yep snow. Where the hell is spring?! This weekend it’ll be 80 degrees. So I guess we skip spring and go right to summer. Ugh. I love Rochester, but jees, enough with the friggin’ snow! I put up some photos that I took in 1996 at the Lilac Festival. Oddly, it was so hot there were no lilacs that year! I took pictures of the other things there: tulips, dogwoods, other blooming things. My photog friend, Jill Santi, insisted we take pictures at the Festival. I had this cool Kodak Pony camera that was my boyfriend’s. It was still when people shot FILM. I used to enjoy experimenting with old cameras to see what can turn out from them. That was a throw back to my RIT days. Before digital and the web.