CATCHING UP WITH ... JIMMY MASTRANUNZIO
He's losing control, still loving life


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WANT TO HELP? The Charlotte Walk to Defeat ALS is slated for May 31. To learn more, go to CatfishChapter.org

It was three years ago when Jimmy Mastranunzio learned he had ALS in his mid 30s. Also known as Lou Gehrig's disease, ALS kills by destroying the neurological system that controls breathing, walking, running, lifting. Most victims die within two to five years of diagnosis. The Observer chronicled the story of this father of four as he began losing control of his muscles. On Wednesday, Mastranunzio plans to attend the kickoff party for the Walk to Defeat ALS. Staff writer Jennifer Rothacker spoke with Mastranunzio, living in Rockwell.

Q. What's the latest on your condition? I can barely hold on to anything at all. I can barely hold on to cups. Moving the fork up to my mouth is very hard to coordinate. Dressing myself is the one thing I can barely do on my own. Socks and small things like buttons, zippers I can't do at all.

Q. Can you still walk? I don't have problems actually walking, but it makes me fatigued. My wife helps me with showering and shaving, mostly anything that takes a lot of energy using my arms and hands.

Q. Describe your speech. It's a lot harder to talk, especially when I'm tired.

Q. You have four young children. How are they coping? My two youngest are too young to really understand. My oldest son, I think it's affecting him the most.

Q. What do the doctors say about your prognosis? The prognosis has always been the same. It just keeps progressing.

Q. When the Observer first wrote about you, you said you wanted to savor every day you have left. How are you doing that? I pay more attention. I spend a lot more time with my wife and my kids. There are occasions when I get depressed about what's going on and the things I can't do, but then I try to think more of what I can do.

A year ago in March, one of my best friends and I went to California and played golf at Pebble Beach. I knew I wasn't going to play forever. (Now), I can't even hold a club.

Q. Will you participate in the ALS walk? It's a three-lap walk. Last year, I was able to walk one time around.

Q. Do you participate in other fundraisers? Oh yeah, pretty much everything I've been asked to participate in. I went to a golf tournament in Kannapolis and was interviewed on Fox news and Channel 9 news. It gives you hope knowing that people are out there trying to figure it out.



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WANT TO HELP?
The Charlotte Walk to Defeat ALS is slated for May 31. To learn more, go to CatfishChapter.org


Catching up with ...

Jimmy Mastranunzio


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Jennifer Rothacker: jrothacker@charlotteobserver.com

http://www.charlotte.com/local/story/508501.html