The Gift of Gab
The author won a national SPJ award for coverage of a Wisconsin man's battle with ALS
by Jordan Johansen
The symptoms began six years ago in his hand and gradually progressed up his arm. After months of living under a grey cloud, he scheduled an appointment at the Mayo Clinic in Rochester, Minnesota. He was tested, poked and probed for four days. At the end of his visit he sat down with the doctor who asked if his wife had accompanied him on the trip. He was alone. She asked if they could contact his wife over the phone.
“I said, ‘Sus, I’m sitting here with the doctor and they’re going to go through the results.’”
The doctor said that Jim Eutizzi, a 47-year-old husband, father of four and successful businessman, had ALS. There was silence in the office and on the other end of the phone. He was in disbelief. He walked out of the doctor’s office imagining he would die of ALS in two short years.
Amyotrophic Lateral Sclerosis, more commonly referred to as ALS or “Lou Gehrig’s Disease,” is a disease with no cure that usually results in paralysis or death within a few years of diagnosis.
Eutizzi spent the four-and-a-half hour drive back from Rochester wondering how he would face his family and trying to comprehend the devastating news.
“I think I cried the whole way home,” he says.
With two teenagers, a nine year old and a six year old at home, losing hope and allowing the disease to take control of his life wasn’t an option.
“Life goes on,” he says. “I told my kids that they have to promise me that this does not change their dreams or their future, because tomorrow, assuming we all wake up, ‘you have school and you have hockey.’”
Eutizzi began visiting the ALS Clinic at Milwaukee’s Froedtert Hospital in 2006. The clinic was started by Dr. Paul Barkhaus in 1997 and was officially certified nine years later. It provides patients with a team of social workers, dietitians, speech and swallow specialists, physical therapists, occupational therapists and respiratory therapists.
Barkhaus, a professor of neurology and physical medicine and rehabilitation at the Medical College of Wisconsin, began studying ALS in 1980.
“ALS will affect an arm or hand, a foot or leg, it may begin in the muscles that control our speech, chewing and swallowing,” he says. “In the beginning some may think it’s just a cold.”
Barkhaus says that it is the most common type of motor neuron disease. ALS causes weakness and spasticity, slurring in speech, difficulty in swallowing and breathing and will progress over time until all of the regions of the body are involved in the neurological breakdown. All regions, that is, except the mind. ALS patients are acutely aware and cognizant of slowly becoming trapped in their own bodies.
Searching For a Cure
While Dr. Barkhaus is fighting on the front lines for the ALS patients of today, there’s another team at the Medical College of Wisconsin fighting for the ALS patients of tomorrow.
Allison Ebert is an assistant professor in cell biology at the Medical College of Wisconsin and played a key role in securing a $40,000 grant to help continue ALS research. Ebert says that the funding she applied for will hopefully help her team understand more about how the disease develops and how best to reduce some of the paralysis and muscle weakness associated with ALS. Funding for the grant was approved last summer.
“Our goal is to use stem cells to generate the cell types affected in ALS to understand how neuron and muscle interactions can lead to ALS, and whether we can target these interactions for therapeutic intervention,” she says.
While clinical research is crucial in finding a cure for Eutizzi and all ALS patients, patient support is also critical.
The ALS Association Wisconsin Chapter was founded in 1987 and their vision is to create a world without ALS. Melanie Roach-Bekos is the executive director of the ALS Wisconsin Chapter.
“Our mission is to lead the fight to cure and treat ALS through global, cutting-edge research, and to empower people with Lou Gehrig’s disease and their families to live fuller lives by providing them with compassionate care and support,” says Roach-Bekos.
The chapter offers ALS patients and their families the opportunity to borrow communication devices and hospital equipment to help bring a sense of normalcy to their lives after the diagnosis. The chapter also offers support groups, caregivers and social workers.
“We are huge on creating awareness in the market, because if people understand how devastating ALS is, I believe they will get involved,” she says. “We leave no stone unturned in our relentless search for a cure.”
Behind The Scenes
Roach-Bekos has been involved with the ALS Association for over twenty years. After losing her parish priest, a co-worker and close friend, Jeff Kaufman, she felt she had discovered her purpose.
“It was a sign that this is really where I need to be,” she says.
Roach-Bekos credits Jeff Kaufman, who died of ALS in 2010, for inspiring her to become more involved in the organization.
“He was always someone I really looked up to and thought the world of,” she says.
Kaufman lived with ALS for an amazing 21 years and died at the age of 54. He was one of the founders of the ALS Evening of Hope, a Milwaukee area black tie dinner and auction whose proceeds are distributed to ALS researchers across Wisconsin. The Evening of Hope has raised over $1.9 million.
The chapter’s success relies heavily on community support and funding. Katie Brennan, a niece of Jeff Kaufman, and her family have been involved with the ALS Wisconsin Chapter for over 20 years.
“The Brennan family has never been known to sit silently on the sidelines,” she says. “When Jeff was diagnosed, the entire family was mobilized to fight alongside him. There is strength in numbers and we have a big one.”
Brennan says that her immediate and extended family have worked in almost every role within the ALS Wisconsin Chapter, from envelope stuffing to emceeing the marquis Evening of Hope, a Brennan is somewhere in the mix.
“Anyone who is woven in the fabric of ALS is charged with keeping awareness and motivation in the forefront,” she says. “It’s an honor to work with the people in the organization, and I’m constantly trying to, in the words of Jeff Kaufman, ‘be better.’”
Passing the Baton
ALS eventually took away Kaufman’s ability to breathe and speak on his own. Once the voice of ALS, he has now passed the microphone to Eutizzi.
“Jim Eutizzi continues Jeff’s mission to increase ALS awareness and pave the way toward a cure,” says Roach-Bekos.
Sharing his story for the first time, Eutizzi took the stage at the 2012 Evening of Hope and agreed to be the new voice of ALS, as long as he had a voice.
“Jim has the strength, drive and humor dad brought to the ALS Association,” says Nora Kaufman, one of Jeff Kaufman’s four children. “He is a wonderful spokesperson for the organization. My only regret is that we still need a voice for ALS.”
After speaking at the 2012 Evening of Hope, Eutizzi became passionate about motivational speaking and bringing awareness to a devastating disease that has affected him, his family and many others.
“What was so powerful about having him as the guest speaker was that he was you, he was me, he was every person living their life,” says Roach-Bekos. “He has handled his diagnosis with such elegance, grace and poise. Everyone can relate to him.”
Roach-Bekos and her team at the ALS Wisconsin Chapter have created a schedule for Eutizzi to speak at a new high school every month during 2013. There was a void in Eutizzi’s life when he had to end his career, but that void was filled when he began working closely with the ALS Wisconsin Chapter.
“I have a new cause and I’m actually doing something I love to do because I’m still out there talking, still using the ‘gift of gab,’” he says. “I have a purpose. If seeing a 15-year-old walk up with tears in their eyes saying, ‘I’m going to get involved’ doesn’t make you feel good, I don’t know what will. It’s better than any paycheck I’ve ever gotten.”