By: Jen Russon
It’s estimated more than 20,000 Americans may be living with ALS at any given time; Coral Springs resident Arthur Bernstein is one of them. While hopeful, he knows his time may be running out.
Arthur was diagnosed five years ago, at the age of 59. The average life expectancy of a person with ALS is two to five years from time of diagnosis.
So far, he’s beating the clock by following doctor’s orders. Advised to avoid stress of any kind, he promptly retired from his career in insurance after colleagues gave him a warm send-off; a party and an Apple watch.
At the time, retirement seemed almost crazy. But the disease is insidious and weakens the body quickly.
“When my dad was diagnosed with ALS, he was in the best shape of his life,” said his son, Eric Bernstein.
He added that his father worked out daily at the LA Fitness in Coral Springs, and staff called to check in on him, worried because they hadn’t seen him.
At first, Arthur thought he had restless leg syndrome, but it was drop foot – one of the first symptoms that ALS patients get. ALS, or amyotrophic lateral sclerosis, also known as Lou Gehrig’s disease is named after the Yankees first baseman. Gehrig would lose his battle with ALS before Arthur was even born.
The retired insurance agent and his wife, Susan, moved to Coral Springs in the early 1980s, and were one of the first families to live in the Pine Ridge neighborhood.
The couple met shortly after. Arthur, originally from Rochester, New York, came to Florida to attend college at the University of Miami. Married at the Diplomat Hotel, she is also a Florida transplant – from Indiana. Both of them also encouraged their siblings to migrate to sunny Broward County.
The Bernstein’s, made their home in Pine Ridge until Arthur’s medical situation called for downsizing to a smaller place in Heron Bay. Both children, Eric and Kara have moved away, but visit every weekend to help their parents.
“If there’s one good thing to come of all this, it’s that it has brought my family closer together,” said Susan.
She chalked up her husband’s endurance to a few other things, too, like his doctors at the Phil Smith ALS and Movement Disorder Clinic at Holy Cross – and positivity.
“We have never discussed a DNR because he still wants to fight,” she said, referring to a ‘do-not-resuscitate’ order that patients request in the event they stop breathing.
Arthur’s neurologists, Dr’s. Locatelli and Taylor said their patient is a fighter. The ALS center opened in 2016, and Arthur was their first patient.
ALS causes nerve cell damage so severe that muscles weaken to the point of paralysis. A patient could choke to death just from sipping water. There is no cure, and no one understands quite like the Bernstein’s how expensive long-term care is.
“Dad always worked in insurance, and everyone in Coral Springs who works in insurance knows my Dad,” said Eric.
He indicated that selling healthcare must be in the family’s blood. Eric has done it, Kara plans to, and their mother does now.
Susan, a former employee of AvMed, was just laid off. She now sells Medicare Advantage plans to seniors, lamenting she has written only five policies this year.
“It takes a village caring for someone with ALS. It robs you of everything but your mind,” said Susan.
Arthur still loves to watch CNN, the Miami Dolphins and read, with the help of specialized technology.
“We have an eye-gazing computer that was donated by Steve Gleason, a former player for the New Orleans Saints. He has ALS and his organization, Team Gleason donated the computer, which would have cost around $20,000,” said Susan.
The ALS Association has been there for Arthur, too, donating his wheelchair. Medicare and private insurance paid for his tracheotomy in October, along with recovery at Broward Health in Coral Springs, after Arthur contracted a life-threatening infection at Kindred Hospital.
“Unfortunately, Kindred is the only long-term facility for patients like him, and we just care about him too much to keep him in a place like that. We want to bring him home,” said Susan.
Hers is a familiar refrain of families living with ALS.
In-home care becomes a necessity at some point for people with the disease. Medicare simply doesn’t cut it, and private insurance plans may cover some, but not all of their staggering medical bills.
“We will need $250,000 a year to meet my dad’s expenses,” said Eric, who gets a ping on his phone when someone makes a donation to the Go Fund Me he set up.
He swears money will not be the reason his dad doesn’t get to continue fighting bravely, waiting for a cure. Arthur was the sole ALS patient to take part in Broward’s ALS Find a Cure walk last April, and wants to do it again next spring – but it won’t be enough, and Susan and Eric said he knows it.
They need a miracle wave of other people’s generosity to see him through, but when they see a trickle, it moves them.
“Mom,” Eric said, motioning for Susan to look at his phone. “Kara’s friend just donated $100.”
Mother and son exchanged knowing looks. This friend had little in the way of money.
Susan said, “Well, she must have known how much we needed it.”
Jen Russon is a freelance writer and English Language Arts teacher. She has published two novels to Amazon Kindle and lives in Coral Springs with her family.