Living with ALS
May is ALS Awareness Month - click through for more info!
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
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 Races. Read 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.
