CANFIELD, Ohio (WKBN) – Last summer, police sergeant Brian Newhard and his wife Jenny did the ALS Ice Bucket Challenge. They never thought a year later, their world would be turned upside down with a life-changing diagnosis. Brian took a new job in April and within months, he couldn’t stand or go up steps. In mid-August, the Cleveland Clinic confirmed he has the fatal disease. Now the Newhard family is learning to make every moment count.
“Yeah, I’m not a very good driver,” said Sgt. Brian Newhard.
These days, Brian Newhard is learning how to maneuver a motorized wheelchair. It’s a far cry from daily life just a few months ago.
“This is a very difficult disease, a lot like police work because you never know what you’re going to get every day when you wake up,” Sgt. Newhard said.
He spent 10 years with Jackson Township Police and had just taken a new job with Mill Creek MetroParks.
“But my days of being a policeman are done,” Sgt. Newhard said.
He’s now relying on that work experience to keep his mind sharp. He says living with this diagnosis is lonely because not much is known about ALS. So he’s leaning on others to guide him through, including another law enforcement officer with the disease.
“I was trained to do certain things and now I have to train to take care of myself like this,” Sgt. Newhard said. “I’m sharp as a tack. It’s just – my mind won’t let my body do what I want it to do.”
His treatment plan includes muscle-building, vitamins, a healthy diet and lots of water to avoid dehydration. He also takes Rilutek twice a day, the only FDA-approved medicine for ALS. Brian is waiting for a breakthrough because right now there is no cure. His daily challenges include going to the bathroom and showering. That happens in the garage with buckets of water. And at night he stays in the living room.
“Well I live in the chair. So point of advise, go home and sleep with your wife in your bed. Because we have a two-story house,” Sgt. Newhard said.
Even still, wife Jenny is always by his side. The couple’s been together for 15 years and married since February 2, 2002. She quit her job as a nurse to care for Brian full-time.
“We just didn’t prepare for this at 38 years old,” Sgt Newhard said.
It’s not easy but their marriage is stronger because of it.
“This is like our second chance I guess maybe to make every day the best day possible,” said Jenny Newhard, Brian’s wife.
And with three young children at home, staying positive is crucial. Olivia is 6, Carter is 9 and eldest son Mitchell is 11. Now the focus is on today, not next week or next year.
“You make plans. But going out that front door, we don’t know if we’re coming home. So I’m used to that. I’m just not used to this,” Sgt. Newhard said.
Brian also isn’t used to accepting help from everyone who loves him – family, friends and the extended law enforcement community. The Newhard residence is a revolving door of people coming over to visit and check in. Extended family even built a wheelchair ramp in the garage so Brian can get inside.
“Just the love is amazing, the generosity,” Jenny Newhard said. “To have a diagnosis like this is life-changing but you truly realize how blessed we are and how grateful we are to have the people we have in our lives.”
“The policeman in me thinks about the people who don’t have anybody,” Sgt. Newhard said.
These days, Brian Newhard is living in the moment – moments his children will remember forever.
“We’re just going to totally go through each and every day, be grateful and so happy he can still love our kids and hug them and talk to them,” Jenny Newhard said.
Right now the Newhards are looking forward to a big vacation in a few weeks to decompress and relax. And before they leave, Brian will be able to use the new accessible shower friends are building for him in the garage.
There’s also a benefit planned next month to help cover the family’s growing expenses. It’s Sunday, October 18 from 12PM to 5PM at the Our Lady of Lebanon Shrine in North Jackson. The spaghetti dinner is $10 for adults. There will also be raffles and a Chinese auction.
To learn more about the family and how to help, visit NEWHARD ALS FUND
The ALS Association offers an in-depth look at the disease