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Waukesha resident recognized for fight against ALS

Jan. 22, 2014

Jim Eutizzi is a man of many words. After a successful sales career, he spends much of his time now talking to kids, corporations and donors at many functions and writing a blog.

"I'm doing as much of that as I can before I lose my voice," Eutizzi said. "That will be the biggest travesty for me. It's not the physical, it's not being able to talk at some point."

That's because Eutizzi has been diagnosed with amyotrophic lateral sclerosis (ALS), commonly referred to as Lou Gehrig's disease. He retired from his career in sales when he began losing the fine motor skills required for daily tasks and now spends his time raising awareness for the disease.

Diagnosed

Eutizzi grew up in Thiensville and attended the University of Wisconsin-Madison before moving to Chicago. When he and his wife, Susan, began raising a family he decided to come closer to home and settled in Waukesha.

It was about four months after his youngest child was born that the normally active and self-described athletic Eutizzi started noticing something wasn't quite right.

"I was working out and got a cramp in my hand. I didn't think much of it except every time I would use that one muscle I would get a cramp, and it was odd," Eutizzi said.

A visit to his doctor started the roller-coaster of specialists and tests that would define his journey to a diagnosis.

"The one thing about ALS is that you end up getting the diagnosis when everything else comes becomes a negative," Eutizzi said. "There's a bunch of different diseases under (the motor-neuron disease) umbrella, and you just hope it's not the worst case."

Eutizzi was only 44 when he was diagnosed in 2007; at first, he said, the effects of the disease were limited to his right arm, but eventually it spread and in 2009 he had to retire.

"The diagnosis was that we had to accept what we had, and based on how it had progressed we were dealing with ALS," Eutizzi said. "That was in the fall, and that's when I started the new phase of this fun life."

Best medicine: positivity

Without a known treatment or cure for ALS, it would be easy to feel helpless but while Eutizzi admits he has bad days, he doesn't seem to let much get him down.

After his diagnosis he joined the Wisconsin Chapter of the ALS Association and took on an active role. After a while, Eutizzi was asked to write a blog.

"I didn't have any writing experience, and my thought was I couldn't really type," Eutizzi explained.

After some persuading, Eutizzi started a blog, "Jim's Journey with ALS," chronicling not only the everyday challenges of coping with the disease but also challenges everyone faces, including parenting and how to live in the moment.

"It's not, per se, about ALS as much as it is how to live a life and how to live a full life despite your challenges. Yeah, I do write about some specific things to me, but I always try and relay it to this in your life," Eutizzi said. "It's been very rewarding for me because it's just another avenue to hopefully educate and help others. Since my diagnosis, that's been my goal, to fill the void of what to do with my life now to make a difference in someone's life, and it's been a great avenue to do that."

Eutizzi has also "filled the void" by being the father of four kids ranging in age from 7 to 20 and spending time with his family, both in Waukesha and on family vacations.

"It's about living in the now. I wish people could do that without having a reason like I have to do it. I guess from experience I wasn't living that way before. We all have a timeline; we just don't know what it is," Eutizzi said. "I take advantage of today and plan things I want to do and spend time with my family and my kids, and I can still experience that stuff with them just differently."

Eutizzi said he is thankful for the friends, family and others who come in to assist him with daily activities that even as recently as last year he could do himself.

"I'm coping pretty well because of my faith, my family. It's a physical disease that takes the body away, but it doesn't take my mind, take your soul, take your heart," Eutizzi said. "I lived that way before the diagnosis, but it's helped me maintain the richest part of my existence."

National award

The ALS Association Wisconsin Chapter recognized this positive attitude and decided it deserved recognition.

Executive Director Melanie Roach-Bekos nominated Eutizzi for the national ALS Association's Lawrence A. Rand Prize, meant to recognize courage, passion, integrity and commitment of those serving the ALS community.

In her letter, she wrote, "Rather than dwell on the limitations the disease has imposed, Jim chose to use his energy and enthusiasm to raise awareness and improve the quality of life for anyone affected by ALS."

Eutizzi will travel to San Diego in February to accept the award and give a speech, if he can find the words.

"It's the best award I've ever won, and I've won a lot of sales awards, but nothing that has had this much meaning, and I'm very proud. Hopefully, I can live up to the standard. As a caveat, I get to leave Wisconsin for five days and go to San Diego, so there's a plus right there," Eutizzi added with his trademark humor. "It was just awesome to find out. I'm not a guy who's speechless, and I was then."

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