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Grandmother's death inspires Alzheimer's efforts

Jay Asparro trains at the Plainview-Old Bethpage Middle

Jay Asparro trains at the Plainview-Old Bethpage Middle School's track on Oct. 26 in advance of his 100-mile run at Kellemberg Memorial High School. Asparro will be running the 100 miles to raise research funding and awareness for Alzheimer's disease, a degenerative disease that effects nearly 6 million Americans, including Jay's grandmother, who died from the disease in April 2019. Credit: Johnny MIlano

When Jay Asparro of Plainview sets out for his 100-mile run for Alzheimer's this weekend, he will do so in memory of his grandmother — a loving wife of 59 years, mother of three, grandmother of seven, and great grandmother of 17.

“My grandmother would always send a Hallmark card to any person she had met that day to cheer them up,” Asparro, 40, said of Ann Asparro. “She was the most loving person — and made the best spaghetti and meatballs.”

In memory of his grandmother, Asparro is running his fourth ultramarathon (a long-distance run longer than the 26.2 miles of a traditional marathon). Asparro started the honor runs in 2016; this time he plans to run 100 miles in one day. Starting at noon Nov. 2, rain or shine, he will aim to finish by 10 a.m. Nov. 3 at Kellenberg Memorial High School in Uniondale, where he graduated in 1997.

The 400-lap mega run around the school track is being held in memory of his grandmother, who died of the debilitating brain and neurological disease Alzheimer’s in April at the age of 95. She had the disease for eight years.

Asparro said his strength, passion and determination for the events come from a desire to build awareness and help those with Alzheimer’s and their caregivers. The caregivers, he has learned, suffer alongside the victim — often alone and under extreme stress.

Over the past four years, the Ann Asparro runs, as they are called, have raised $82,000 for the Long Island Alzheimer’s and Dementia Center (lidementia.org), formerly known as the Long Island Alzheimer’s Foundation, in Westbury.

“When I’m up against many walls and obstacles on these extended runs, I think of the caregivers, like my folks and other relatives were to my grandmother, who can’t stop or give up while they take care of their loved ones as they are destroyed by the disease,” said Asparro, who works in medical sales for the pharmaceutical company Allergan in Bridgewater, New Jersey.

The disease

Alzheimer’s is an irreversible, progressive brain disorder that slowly destroys memory and thinking skills and, eventually, the ability to carry out the simplest tasks, according to the National Institutes of Health’s website. The most common form of dementia, Alzheimer’s is the sixth leading cause of death in the United States; an estimated 5.8 million Americans have the disease with 400,000 individuals in New York State and 57,000 individuals on Long Island, according to the Alzheimer’s Association, Long Island Chapter (alz.org/longisland).

In the early stages, people may experience such behavior and personality changes as irritability, anxiety and depression. In the later stages, symptoms may include aggression and anger, anxiety and agitation, general emotional distress and hallucinations.

Asparro’s grandmother, who lived in Greenpoint, Brooklyn, for most of her life, spent her last eight years at the Parker Jewish Institute for Health Care and Rehabilitation in New Hyde Park because she had broken her hip and could not live alone anymore; soon after she started to decline with the early stages of Alzheimer’s.

Looking for a way to honor his grandmother, Asparro had heard about the Long Island Alzheimer’s and Dementia Center and its programs for individuals with Alzheimer’s and the caregivers, and he decided to raise money for the organization in her honor.

“Jay has been simply amazing for our organization and the people we serve,” said Tori Cohen, 46, of Old Bethpage, executive director of the Long Island Alzheimer’s and Dementia Center since 2015. “His drive and passion for those afflicted and their caregivers are simply extraordinary.”

Started as a grassroots organization by five women from Sands Point in 1988 who all had family members with Alzheimer’s, the center has 33 employees (including social workers, home health and respite care workers, and bus drivers) with an annual revenue of $2 million. The center serves mostly residents of Nassau County, western Suffolk, and eastern Queens.

Cohen is proud of the community-based programs the organization offers individuals with Alzheimer’s and their caregivers: Social Model Day and In-Home Respite programs. Transportation to and from the center is available for $10 per day.

Social Model Day (or adult day care) is offered Monday through Saturday from 10 a.m. to 4 p.m. at the center in Westbury. The main benefit of the day program is that those with dementia are stimulated in a safe and engaging environment through cognitive and other treatment therapies. More so, the caregivers are able to do tasks besides taking care of their loved ones during treatment hours, according to Cohen, helping to alleviate caregiver burnout.

The center also offers In-Home Respite, a program that provides two hours of in-home support every other week for Alzheimer’s families in Nassau. The center’s respite workers provide stimulating cognitive activities for individuals with Alzheimer’s disease. This program is partially funded by the Nassau County Office for the Aging and is only available for Nassau County residents.

The cost of these programs is about $70 a day per person. The center has served 2,700 individuals this year. “The $82,000 Jay has raised is helping a lot of people and their families,” Cohen said.

Families have to enroll their loved ones in a managed long-term care plan to receive services once they are eligible for Medicaid.

Runs for the cause

Asparro has created a theme or milestone for each of his runs. He said it gives him an added purpose and motivation. He completed three runs while his grandmother was still alive, raising $70,000. The Long Island Alzheimer’s and Dementia Center set up an Ann Asparro online donation website for those wishing to donate.

In 2016, he did the Ann Asparro Run — 90 Miles of Hope because his grandmother was 90 at the time. The run took him from St. Therese of Lisieux Church in Montauk to his parish, St. Pius X Church in Plainview, in one weekend.

He completed the Ann Asparro Run — 75 Miles of Hope in 2017 for what would have been his grandparents’ 75th wedding anniversary (his grandfather died in 2003). He ran from Theodore Roosevelt Park in Oyster Bay to Jones Beach Field 6 parking lot in a weekend along with the New York City Marathon.

And in 2018, he completed the Ann Asparro Run — 140.6 Miles of Hope, participating in the Lake Placid Ironman of running, biking and swimming on July 22, dedicating his efforts to caregivers.

Although Asparro was injured by another swimmer and had to stop because of a concussion, he still ran a marathon. He returned to Lake Placid and completed the Lake Placid Half Ironman 70.3 miles on Sept. 9, 2018.

Asparro has been training for what he calls the Ann Asparro Run — 100 Miles of Hope since March. “I dedicate at least an hour a day during the week to running, recovery and stretching. I do six to eight hours on the weekends,” he said.

Patrick Hammond, 34, of Louisville, Kentucky, Asparro’s running coach for the past three years, prepares a weekly training schedule for Asparro every Sunday and sends to him by email. They talk often over the phone.

“Jay’s drive and mission are his strengths. He sticks with the plan, and he is a smart runner,” said Hammond. “He constantly comes up with new ideas for each run and consults with me first.”

Asparro said he uses hyperbaric oxygen therapy and cryotherapy daily to enhance his performance.

The support team

Asparro and Cohen said they are expecting many supporters to be at the 100-mile run at Kellenberg that begins Nov. 2.

“My brother Brian, Cousin Danny, Cousin Joanne, my parents and other family members will be at the run along with old friends and new friends, and hopefully people I've never met will come to the run,” Asparro said.

Asparro also got to support the cause in another way: Encouraging his dad, Carmine Asparro, 70, of North Bellmore, to apply and be elected to the board of directors of the Long Island Alzheimer’s and Dementia Center in June 2017. In the volunteer role, the elder Asparro and other board members were instrumental in renaming the organization to reflect its mission as a community-based treatment center.

“Jay does amazing things in my mother’s memory. I couldn’t be prouder of him,” said Carmine. “Jay has actually brought the whole family together in support of this great cause, even though we all worry that he may be pushing himself too hard physically.”

So far about $11,230 has been raised for the 100-mile run.

If their schedules allow, the Hofstra University women's soccer team (ranked 15th in the country) and the men’s soccer team will run a lap with him, Asparro said. DJ Big Mike from Max 103.1 FM and the Midnight Snacks Show will be running a lap with him at midnight.

“I sent Big Mike a Classic Rock playlist that he will be playing from 12 a.m. to 2 a.m. on his show,” said Asparro, a 2002 graduate of Hofstra who played Division I soccer there.

The last run

Asparro said that the 100-mile run will likely be his last in the “series” because of other demands — top among, them his own growing family. He and his wife, Allison, 38, have two children — Olivia, 6, and Shane, 3. Sundays generally find Jay coaching Olivia’s soccer team in Plainedge.

He said he intends to continue supporting the Long Island Alzheimer’s and Dementia Center through lectures and other volunteer efforts.

“My grandmother’s memory will always remain in my heart and soul and with those that loved her. Through my running, I’m so proud that I was able to help others and bring awareness to this horrific disease,” he added.

Alzheimer’s information and support

Long Island Alzheimer’s and Dementia Center, 1025 Old Country Rd., Suite 115, Westbury, NY 11590; 516-767-6856 or www.lidementia.org.

Alzheimer’s Association, Long Island Chapter, offices in Melville and Riverhead; 24-hour helpline, 800-272-3900, or alz.org.

Check with your local Office for the Aging for more resources and support.

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