A diagnosis like amyotrophic lateral sclerosis (ALS) will knock the knees out from under anyone.
Both literally and figuratively.
ALS — also known as Lou Gehrig’s disease, after the hall of fame first baseman who played 17 seasons in the major leagues — is a rapidly progressive, fatal neuromuscular disorder.
Eric and Kirsten Lino of Jackson Township know all too well the cruelty of ALS.
“On Sept. 29, 2011, at 4 p.m., our lives changed forever,” was how Kirsten Lino pulled the curtains back on her family’s inescapable truth.
“The doctor said, ‘Eric, you have a disease called amyotrophic lateral sclerosis … Lou Gehrig’s disease.’ … We knew something wasn’t right, but to be told that it is this absolutely brutal disease, a terminal illness with no hope of a cure, that the average life expectancy is somewhere between two and five years … and to realize that all of our plans, all of our dreams, were no longer going to be part of our life … Nothing in our lives will ever be the same.”
I invited myself to their home. To listen. To observe. To share their story and strong faith.
Married for nine years, the Linos have two daughters: 18-year-old Sierra Grahovac and 17-year-old Mariah Lino, who were the best of friends long before their parents fell in love.
In spite of the diagnosis Eric Lino, 43, has a smile and a grace that’s difficult to fathom. That doesn’t mean he doesn’t have his days, moments when he’s awash with emotion like anyone being held hostage.
Eric is no longer able to bathe himself or brush his teeth, and uses a walker to get around the house. “He needs a wheelchair if a trip is going to be longer than about 20 feet,” his wife explains.
This new chapter in his life began a few months after the Wonder Bread bakery in downtown Akron closed in June 2010. Eric had worked at the plant for 23 years.
A few months later, he landed an apprenticeship with Iron Workers Local 17.
After an on-the-job injury, a bad cut on the face, Eric went to his family doctor. While he was there he complained about an unrelated problem with his right hand and arm, which he thought might be related to rotator cuff surgery he’d had just before the bread plant closed.
His doctor sent him to Dr. Hugh Miller, a neurologist at Akron General Medical Center who, after a battery of tests, ruled out multiple sclerosis and Parkinson’s. ALS was the verdict.
Miller referred them to Cleveland Clinic neurologist Dr. Kerry Levin, saying “I’m not too arrogant to believe I can’t be wrong.”
“We kept it from the girls for a couple of months, as long as we could,” Kirsten said adding, “We were blindsided … It was a very trying time with the holidays approaching. Very emotional.”
Eric is still a husky guy. But not so much muscle anymore.
“Eric is the kind of guy who’s been active his whole life: football, baseball and various sports throughout school, wrestling and martial arts in high school, an avid swimmer, constantly outdoors, fishing, boating, waterskiing, skydiving and the list could literally go on and on,” his wife said.
“I jokingly called him my beast, and he was. He’s the strongest man I’ve ever known. He could do absolutely anything.”
ALS has taken that away.
Even so, the Linos are finding ways to live their lives.
“We’re believers!” Kirsten said, sensing my next question. “We have a strong Christian faith. I don’t know we would get through this without it.”
Eric — whose omnipresent smile was intersected with tears — nodded in agreement.
“We do get tired, frustrated at times,” Kirsten acknowledged. Her husband again nodded. “But we look at it as believers. That if God brought this into our lives it must be something we should be doing.”
The Linos don’t stay awake trying to figure that out. What does have them losing sleep is being trapped in a house they desperately need to sell. It’s been on the market one year — one year this family can never get back.
Eric can no longer negotiate the steps. “We haven’t been able to sleep in our own bed,” his wife confided.
The Linos need a home with everything on one floor, an ADA (Americans with Disabilities Act) bathroom and a roll-in shower.
Kirsten, who is a business banker, is grateful to FirstMerit. “They’ve been unbelievably good to me, flexible, allowing me to work at home some days and granting me an additional week of vacation,” she said.
Still, there is the huge expense of paying for a home health-care aide for her beloved husband. That cost is not covered by insurance.
In addition, the Linos are trying to purchase a property they can renovate at a reasonable cost and with relative speed. Only they can’t do that unless they sell their existing home.
They would like to stay in Jackson Township, as close as possible to Jackson High School, where daughter Mariah is a junior. Sierra is leaving later this month for the Marines.
While they wait for their home to sell, the Linos have partnered with the DMO Foundation, headed by Joe Ott, whose brother Devan was diagnosed with ALS in 2009 at the age of 22. DMO’s noble mission is building handicapped-accessible housing or renovating existing properties for persons with ALS or other neurologic diagnoses.
The Lino family and friends are raising funds for building supplies, with the promise of donating any excess money to another ALS family needing its home remodeled.
To learn more about or to donate to the DMO foundation, please visit www.dmofoundation.com or contact Joe Ott at joe@dmofoundation or call 330-968-4165.
The Linos are also in hot pursuit of a handicapped-accessible van with a lift.
The average out-of-pocket cost of dealing with this diagnosis is mind-boggling, somewhere between $50,000 and $200,000. “Because of the costs associated with this disease, there is a possibility that we could lose everything we’ve worked so hard to build,” Kirsten Lino said.
Also doing her part to help the Lino family is 14-year-old Dana McKinney, a freshman at Revere High School, who enlisted the help of 11 friends to produce a video, “100 Reasons to Laugh,” to raise funds for Eric to cross items off his “bucket list:” riding in a helicopter over Hocking Hills State Park, taking his family on a hot-air balloon ride, visiting Hawaii or Alaska.
To date the video project — which puts forth such questions as “Do sheep shrink in the rain?” “If the No. 2 pencil is so popular, why isn’t it No. 1?” — has raised $150.
Partners in that venture include Kate Carlos, Matt Fiedler, Ileana Hernandez, Joona Lee, Maggie McGuighan, Ryan Nadzam, Ellen Race, Marissa Williams, Harrison Zeller, Meredith Zendlo, and co-script writer Crystal Mortimer.
To read more about the family and make a donation, please visit www.eplusthree.com. The video will be available there soon.
Dana is inviting the community to turn out for the Akron/Canton Walk to Defeat ALS on Sept. 16 at Canal Park in Akron. An Eric and Kirsten Lino Benevolent Fund also has been set up at FirstMerit Bank.
Jewell Cardwell can be reached at 330-996-3567 or firstname.lastname@example.org.