Local men with crippling cases of ALS share their stories to help others
Mike Jacobs reports Video by tmj4.comvideo
MUKWONAGO - Jim Eutizzi's joy of playing ball with his son is tempered with the knowledge that Jim is going to die a horrible death. He says, "I kinda fear dying in the way this is going to take me. It's not the way I would've drawn it up."
Many people in his position would be bitter. But instead Jim is living his life with courage and dignity. Jim has Lou Gehrig's Disease, ALS--a disease that paralyzes his body while his mind remains sharp. "I won't say I have bad days, but I have a lot of bad moments It's a bad moment every time my little 8-yr-old wants to go throw the baseball, and practice for his game, and I can't throw it...That's a bad moment every time. Or when my little girl wants me to pick her up."
Jim's arms don't work anymore. Eventually, nothing will work. Somehow, he's happy.
"I love my life. It may sound odd, but I wouldn't change a thing," he says.
A YouTube video shows a day in the life of what Jim calls the 'new normal': 4 kids. A wife. A dying dad. It's heartbreaking.
Surprisingly, Jim is also filled with hope. He's become a spokesperson for ALS of Wisconsin. He blogs about his life. He writes about the future, knowing he likely won't be around for graduations, weddings, grandchildren. He wonders, "How do you live your life? How do you live with those goals and those dreams....when the reality is, I probably won't be a part of a lot of them."
Some patients deteriorate more quickly than others.
Tony Turner of Milwaukee had never heard of ALS. A year ago, he was a 'normal' 30 year old. But now, he is slowly wasting away--a victim of ALS.
He's shooting videos to raise awareness and money, and to find a cure.
Tony says, "It affects everyone around me. They all have to chip in they all have to go through the depression. And the stress."
ALS only strikes two people in every 100,000, but could strike any one of us. Jim thinks there's a lesson for everyone on how to live life. "When I sit back now I think, how many things I worried about every day that were so trivial. In the perspective of what's really important. It was an eye opener."
Jim dreads the day he'll no longer be able to speak. Eventually, he will lose his voice, "To never tell my daughter I love her. For her to hear that. Really stinks."
Jim has started recording video messages to his family on his laptop. Messages that can speak for him on special occasions. "Some of it's serious and some of it is just their dad being goofy and hopefully making them smile."
TODAY'S TMJ4's Mike Jacobs asked Jim, "What's your last message going to be?"
He thought about it, and said, "Live your life. Carry on. Reach your dreams."
As Jim looks off into the distance, contemplating life, and death... He manages to find words of inspiration. "Don't be bitter or angry at God or this world, because of what happened to me."
There is a big fundraiser to fight ALS coming up July 27th at Miller Park. It's called 'Chasin A Cure' tailgate and a $50 ticket includes the game, food, a t-shirt, and a concert.