Living with ALS

May is ALS Awareness Month – click through for more info!

Watch my videos – you can see see the progression as the years go by.

It’s been a long road to get where I am today! Starting with my official clinical diagnosis of amyotrophic lateral sclerosis (ALS) in April 2010 to now at the ALS Clinic at the University of Rochester Medical Center.

In 2010, my colleagues and friends raised money for the ALS Association by walking in the annual Walk to Defeat ALS as the WXXI Walks for Joy team. We had shirts made & everything!

I made a special point to join the National Amyotrophic Lateral Sclerosis (ALS) Registry so we can find out more about all the people that have this illness and hopefully find a cause then a cure.

In March 2011, I made it to the MDA Muscle Walk in Rochester, NY where I got to meet some of the local staff of MDA Rochester.

In April 2011, I was the recipient of the Robert Ross Muscular Dystrophy Association’s Personal Achievement Award from the Muscular Dystrophy Association’s (MDA) Greater Rochester Finger Lakes Chapter (aka MDA Rochester). Read the press release

Perinton woman wins MDA’s personal achievement award | Watch the video

Everything that started in May!

My first appearance as the local MDA PAA recipient was to give a speech at the NYS MDA IAFF Boot Camp Kick Off. Read the speech

My first TV interview was with Norma Holland on the CW Rochester Channel. Watch the video

My second TV interview was on WXXI’s Need to Know Rochester, interviewed by Julie Philipp. Watch the video

My second speech was the first one re-written for the MDA-ALS Gala A Night at the RacesRead the speech

Also, my photo Spring Tulips was auctioned off and made $700 towards ALS Research!

MDA Rochester Lock Up

MDA ALS Support Group Expert night

The MDA-ALS division received a Mayoral Proclamation for ALS Awareness Month – read by my former boss, Gary Walker. I threw the first pitch at the Rochester Red Wings Game and later I was able to go the Red Wings Radio and say a few words. Read the speech

We are doing all this while preparing for a Yard Sale to Buy Joy Parker a Van!

ACOSTA / MDA Golf Tournament – my parents were able to attend this with me. My mom cried. They were very proud. Here is the speech.

Then… I was rushed to the hospital from my job because I had a massive pulmonary embolism. Most likely, from sitting too much. Needless to say the rest of my MDA events were all cancelled as I came back from near death. I even missed the telethon, although they did come by to interview me for the show cut ins.

Walked in the annual Walk to Defeat ALS as the WXXI Walks for Joy team. This is year 2 for us!

We got a wheelchair accessible minivan from a family who’s son recently died from MD.

MDA Rochester created thank you plaques with my Red Leaf picture and also made gifts from my Converging Trees for their ACOSTA group meeting.

I laid low for a bit  but got back into the swing of things in 2012.

I was re-crowned the MDA PAA recipient for 2012.

May 2012

My first appearance as the local 2012 MDA PAA recipient was to give a speech at the NYS MDA IAFF Boot Camp Kick Off. Read the speech

My second speech was  for the 2012 MDA-ALS Gala A Night at the RacesRead the speech

Also, my photo Converging Trees was auctioned off and made $300 towards ALS Research!

May 2013

I stepped down from my PAA position but I was pulled back into another speech for the 2013 MDA-ALS Gala A Night at the Races. Speaking is more difficult and breathing so we recorded it. Read/watch the speech

The photo I donated was The Path. It auctioned off for $550 towards ALS Research!

July 2013

My friends have decided to band together for another garage sale! I am truly blessed with such fantastic caring people! Here’s the event on Facebook.

The sale was a success!

September 2013

My youngest child helped me create this video about ALS from her perspective.

Walk to Defeat ALS

October 2013

The work on the bathroom was completed and we moved my bedroom downstairs.

November 2013

Added a video piece to Art for Freedom project about having ALS and what freedom means to me. More about project.

December 2013

Terminal Freedom was chosen to be part of December ‘s Art for Freedom by celebrity curator David Blaine. The video was highlighted on December 9th.

January 2014

The video was chosen for the month of December 2013 by Madonna and celebrity curator David Blaine to win a $10,000 grant from the Ray of Light Foundation. I chose to give this money to the MDA Rochester and The ALS Association, Upstate NY Chapter.

WXXI-AM did a story –  Video Submitted By Local Woman Wins $10,000 For Area Non-Profits

RIT’s University News story – RIT alumna wins award from Madonna’s foundation: Joy Parker received a $10,000 award from the Art for Freedom initiative

March 2014 MDA Walk

May 2014

MDA ALS Night at the races




3 thoughts on “Living with ALS

  1. Pingback: Honest Delusions « Simple Joy's

  2. Pingback: Garage Sale for Joy! | Simple Joy's

  3. Pingback: Ode to Joy – A Benefit for ALS. Bid on AMAZING Broadway Items | Robert on Broadway

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