The North Fork turned out Saturday, Sept. 27 for the Third Annual North Fork Walk to End Alzheimer’s to benefit the Alzheimer’s Association.
More than 400 walkers came to Peconic Landing on the sunny morning, raising more than $123,000 for research, advocacy and support for people living with and caring for loved ones with dementia.
But more than raising the money, they found a community of people bound together by the difficulties they’d faced in caring for people they love as they lose the memories that make up the essence of who they are.
John Chandler of Southold was recently diagnosed with mild cognitive impairment due to Alzheimer’s Disease — an early stage diagnosis. He has a champion by his side — his wife, Nancy Chandler, an Alzheimer’s Association volunteer who had been a caregiver for her own mother on the long journey through cognitive decline.
But the diagnosis was still nearly impossible to accept, he told the crowd gathered at the beginning of the walk, in a speech before a ceremony in which walkers raised colored flowers high to highlight their own connection to the disease.
“It really hit hard,” he told the crowd. “At first I was in denial. It was the easiest thing to do. But when I saw my brain scan there was no denying it. I have Alzheimer’s. I was shocked, depressed and actually pretty angry. I thought ‘what did I do to deserve this?”
“Alzheimer’s is particularly tragic, because it slowly destroys essence of who you are as a person,” he added. “It affects your relationship with friends, loved ones and life partners. It’s not something that can be surgically removed and you can go on with your life. It affects who you are, against your own will.”
Walter Berry has made a name for himself running fishing tournaments on the North Fork over the decades, and he and his friends and family turned out in droves on the team “Shut Up And Fish,” a last minute entry into the fundraising competition.
“He’s early diagnosis, about five years ago,” said his wife, Chrissy Berry, as Walt and her friend and Shut Up and Fish team captain Janet Dickerson stood by her side.
“My goal was $1,000 and we’re up to $9,000,” said Ms. Dickerson, choked with tears as she thought of the outpouring of support.
“I think a lot of people want to help and they don’t know how, and this gives them an outlet,” said Ms. Berry.
“I’m getting emotional,” said Judy Wichter, Associate Director of Development for the Alzheimer’s Association’s Long Island Chapter, as she read aloud the tally of money raised this year — $123,618. “We set a goal this year of $86,800, but it was no match for what we did… We raised $27,000 the first year.”
Peconic Landing’s team raised $18,332, followed by Ms. Chandler’s team, Mom’s Daughters, which raised $17,700. Mert’s Sunshine Squad raised $12,500, Shut Up and Fish raised $9,417 and Naka for Good raised $9,070.
“Our goal was around $80,000, so this is incredible,” said Southold Town Councilwoman Anne Smith, who helped to organize the walk, of the funds that were raised this year.
Ms. Smith said she’s impressed with the support services offered by the Alzheimer’s Association, which include a 24-hour caregiver hotline and support group at the Mattituck-Laurel Library and Peconic Bay Medical Center in Riverhead.
These are particularly vital links in a town that has the oldest population in New York State — more than 30 percent of the residents here are over the age of 65.
“Because we’re such a small town, we can’t have all these individual services. If we can partner with other organizations, than we can provide more services,” said Ms. Smith.
Nancy Chandler, John Chandler’s wife, did share some hope from the Alzheimer’s Association’s U.S. Pointer Study, a recent two-year study that found that “a combination of healthy behaviors meaningfully protects brain health across a diverse population at risk for dementia in the U.S.. Healthy lifestyle changes, specifically a combination of physical exercise, healthy nutrition, social engagement and health monitoring can protect the the brain from age-related decline.”
Ms. Chandler said there are 600 Walks to End Alzheimer’s around the country, which have helped the Alzheimer’s Association invest a record $112.2 million in research last year.
Peconic Landing Director of Health Services Jennifer Drofenik, who is also a volunteer with the Alzheimer’s Association and a co-chair of the North Fork walk, said there is a lot of hope in many different aspects of Alzheimer’s research.
“Alzheimer’s treatments have arrived. We now have FDA-approved drugs that can slow disease progression for those in the early stages, and there are more in the research pipeline,” she said. “But we know that these new treatments aren’t available to everyone or accessible to the majority of people living with Alzheimer’s Disease. That is why we can’t rest until everyone living with the disease can get the treatment and care that they need and deserve.”
Ms. Drofenik is also pioneering a new program, SAIDO Learning, at Peconic Landing’s memory care unit, a series of daily brain exercises which are showing promising results.
Read Our Coverage of SAIDO Learning at Peconic Landing
“With over 30,000 people living with Alzheimer’s right here in Suffolk County, this hits close to home,” she said. “But looking out at this sea of purple in front of me, I am in awe of the strength and determination of our community. I keep hearing that Walk Day is the biggest support group of the year, because we’re with others who understand this journey.”
Before they embarked on a walk on the winding, tree-lined roads through the independent living portion of the Peconic Landing community, walkers raised their flowers high in what’s known as a Promise Garden Ceremony, raising yellow flowers if they are caring for someone with Alzheimer’s, purple flowers if they have lost someone to the disease, orange flowers if they’re here to support the cause and blue flowers if they have Alzheimer’s Disease.
“If you’re holding a yellow flower, like me, than you are here today because you are supporting or caring for someone living with Alzheimer’s or another disease,” said Vince of the team Mert’s Sunshine Squad. His voice began to choke with tears, as other people on stage held him and offered their support. “My beautiful wife, Marilyn, for 51 years, was diagnosed just 15 months ago. Within the last five months, she cannot speak, she cannot write. If you have a yellow flower, please raise it.”
John Chandler held his blue flower high, inviting others who have Alzheimer’s to raise theirs, but, notably, there were few in the crowd who were also there to raise a blue flower.
At the end, one white flower was raised, for the person who will one day be the first survivor of the disease.
“Wouldn’t that be an incredible addition to our garden,” said Ms. Chandler. “Until that beautiful day happens, we must not back down. We must continue to lead the way.”
As the crowd began to walk, a team of students from the Mattituck High School Student Council and Interact Club clanked cowbells and noisemakers, sending them on their way. These students, too, had personal experiences with loved ones who suffered from Alzheimer’s, and they were all there at the finish line to welcome the walkers back.
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