TAMPA — The nationwide frenzy over the Ice Bucket Challenge has dwindled a bit now that volunteers who invited a dousing have raised more than $115 million to fight ALS.
Those behind the cause hope the new movie “You’re Not You” can keep the momentum going for patients with amyotrophic lateral sclerosis — including 33-year-old ALS patient Jeff Arison of St. Petersburg.
“That movie was real in so many ways,” Arison said, fighting back tears unusual for a man so optimistic, after an advanced screening of the film at AMC Veterans in Tampa.
Academy Award winner Hilary Swank plays a confident, spry classical pianist in a loving marriage who deteriorates within a year of contracting the neural disease into a wheelchair-bound introvert whose loved ones struggle to help.
“You’re Not You” is showing in select cities, including Tampa.
As a teenage athlete in Crystal Lake, Illinois, Arison was powerful enough as defensive tackle to toss offensive linemen aside yet nimble enough to chase ground balls as a shortstop.
As a twenty-something living in the Tampa area, he worked up to 70 hours a week as a manager of the Green Iguana Bar & Grill in Ybor City and still had the energy to golf, jog and party.
Then, three years ago today — Oct. 12, 2011 — Arison was diagnosed with ALS.
Now, he uses a motorized wheelchair to get around and an air mask to aid his breathing. He needs help with daily chores.
One thing the disease has not eaten away is his happiness.
“You have to live the salt life,” Arison said. “I try to live every day to the fullest. I still hang with friends, watch sports, laugh at jokes. I still have fun. I’m still here.”
Friends and family say his optimism is no charade. He experiences moments of depression and frustration but has made a commitment to himself to remain upbeat.
Tears, he said, will not cure him.
Still, he wept during “You’re Not You.” So did many others attending the screening, primarily ALS patients and their family and friends.
“That was as accurate a portrayal of what ALS does to a person as I have seen,” said Alissa Gutierrez, a representative of the Florida chapter of the ALS Association. “Hilary Swank was brilliant.”
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If the Ice Bucket Challenge brought ALS to the public forefront, Gutierrez said, the film may humanize the disease by giving it a face.
This new face is somewhat grimmer than the old one — New York Yankee great Lou Gehrig, whose name became synonymous with the disease after he walked off the field a hero with his famous farewell speech 75 years ago.
“My concern is that Swank may have been too real for some people to handle. I hope that doesn’t turn some people away,” said Gutierrez. “It is one thing to donate money but another to witness what ALS does to people. I am not sure people want to know what this disease really looks like.”
The realities of ALS are indeed bleak.
As many as 30,000 people in the United States have the disease, with 5,000 new cases diagnosed each year, according to the website of the ALS Association.
The average lifespan following diagnosis is just two to five years. Patients lose their ability to control their muscles, talk, swallow and even breathe.
No one has survived the disease. Nor is there a cure or clear understanding of what causes it.
“That is unacceptable,” Gutierrez said. “This is the year 2014. It should not be a mystery.”
Arison’s ALS symptoms surfaced in 2010 during his first stint living in St. Petersburg. It began with a slight pain in his knee and then “drop foot” — at times his left foot would drag rather than lift off the ground.
He began losing balance, once tumbling to the concrete while jogging on 22nd Avenue in St. Petersburg.
In mid-2010, he moved back to Illinois to be closer to his family.
A doctor at a walk-in clinic there blamed a pinched nerve for his problems. When the symptoms worsened, he sought answers at Chicago’s Loyola University Medical Center. Following tests, a specialist recommended he visit the Mayo Clinic in Rochester, Minnesota.
“I think the doctor didn’t want to tell me the truth,” Arison said.
When they did, he didn’t believe them.
ALS is known as a disease that primarily affects older people, and he was young. He had always been healthy, he further rationalized, and there is no history of the disease in his family.
“It is a disease that does not discriminate,” Gutierrez said. “That is one of its scariest characteristics. And it comes out of nowhere.”
The disease progressed quickly. Soon after the diagnosis he needed a cane to walk. Within a year the once powerful athlete was in a motorized wheelchair, unable to walk. Next came the machine that assists with his breathing by blowing puffs of air into his lungs.
But his condition, he said, has not worsened in over a year, giving him confidence he has reached a plateau and will be among the 5 percent of patients who live 20 years. That’s time for a cure to be found, he said.
One theme of “You’re Not You” is guilt. Swank’s character feels like a burden to her family, as though she could have done something to prevent her ALS.
“That guilt is real,” Gutierrez said. “And that guilt is the saddest part. At some point patients become helpless, and they don’t want their family to give up their lives for them.”
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Arison’s family has made many sacrifices. His sister Andrea Arison, 13 months younger, was a regional trainer in St. Petersburg for the University of Phoenix. She turned down a promotion that would have sent her to Arizona and then quit the job so she could become her brother’s full-time caregiver.
She took on the duties when he decided last year to move from Illinois back to St. Petersburg, where he had lived nearly 10 years until 2010. He graduated from the University of South Florida.
“I want to be in the sunshine and wanted to be with my friends here,” Arison said.
His mother, Sheila Arison, keeps a house in Illinois. She tries to get back there as often as possible to see her two other daughters and grandchildren but spends the most of the year in St. Petersburg.
“It’s hard to go back and leave him,” she said. “He’s my son and I want to be here for him.”
They help Arison with almost every chore, including wiping his nose and getting him ready for bed.
“Going to bed is not something I can just do when I am tired now,” Arison said. “It has to be planned out in advance. It gets frustrating. I’ve had to learn patience.”
Andrea Arison admits it was a difficult transition for her as well. She was a career woman on the rise, after all, and proud of her success. And she knew nothing about ALS before her brother’s diagnosis.
“Every day I learn something new,” she said. “And those things that worked last week may not work next week depending on his condition on a certain day. You have to be willing to learn on the fly.”
Yet she has never regretted her decision, she said, even for a moment.
“He’s my brother,” she said. “Of course I’d do whatever I can for him.”
Friends also do what they can — stopping by to say hello or taking him to see his beloved Tampa Bay Rays.
“We don’t call his friends his friends anymore,” his mother said. “We call them his blessings. And he has so many blessings.”
His sister is his greatest source of joy, Sheila Arison said. She is always searching for ways to make him smile, sometimes breaking out in a dance when a favorite song of his plays on the radio, sometimes taking him fishing, one of his favorite pastimes.
He can’t hold a pole anymore so he watches her wrestle with the catch.
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His family’s love helps Arison stay upbeat, Gutierrez said.
“Not everyone has the type of support that Jeff has.”
Nor the support Swank’s character has in “You’re Not You.”
“This was a Hollywood portrayal of an ALS patient with financial means,” Gutierrez said. “She had a full-time caregiver and access to the things she needed. ALS is an expensive disease that not everyone can afford.”
For that reason, the ALS Association’s Florida chapter offers a medical equipment loan program. The group takes used equipment, refurbishes it and provides it to patients. There are no questions asked about financial means.
“Even if you think you are financially comfortable when diagnosed, that can quickly change,” Gutierrez said.
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The Florida chapter offers other help: support groups for patients and families, guidance with insurance coverage and grants up to $1,000 for medical equipment not available through the loaner program, for repairs to equipment and for home modifications such as ramps and door frames to accommodate wheelchairs.
The state association’s annual budget is around $1.4 million. About $500,000 from the Ice Bucket Challenge was earmarked for the Florida chapter.
“I cannot even begin to explain how grateful we are,” Gutierrez said. “All of that money goes to patient care.”
Arison does what he can to financially support the search for a cure. He takes part in the local ALS walkathon and attends and promotes other ALS fundraisers scheduled throughout the year.
His friends and family are active as well. His sister has sold yellow sunflower beaded bracelets for $10 and gave all proceeds to ALS research. His friend and neighbor Bart Vietti challenged people from 40 states in the ALS Ice Bucket Challenge.
Arison is grateful to everyone who participated in the challenge but realizes it was a fleeting thing, attractive as a social trend as much as a charitable cause.
He hopes the movie will leave a longer-lasting impact.
“I just want people to know that they cannot give up on the ALS cause,” said Arison. “There are so many people who need the help, and you never know who it can affect. I didn’t ever think I would have ALS. But here I am.”