Music fest Sunday to benefit Alzheimer's Association

A group of Hudson Valley residents recently traveled to Washington, D.C., to rally in support of families living with Alzheimer’s at the Alzheimer’s Advocacy Forum in Washington, D.C. Among them was be Lisa Nathan of Circleville.

Nathan has been active with the Alzheimer’s Association for the last few years. At 58, her husband, Ben, was diagnosed with younger-onset Alzheimer’s disease. Later he was also diagnosed with Lewy Body dementia and now requires ongoing care in a nursing home.

This year, in addition to attending the Advocacy Forum, Nathan is also serving as chair of the Orange/Sullivan Walk to End Alzheimer’s. For the second year, she will hold a music festival as part of the Alzheimer’s Association’s Longest Day fundraiser called Alzheimer’s and Musical Memory Day at Sugar Loaf on Sunday, June 24. She said the festival has grown from last year.

“Last year, we had four or five bands. It was held from noon to 6, and we had a headliner and five bands. This year, we only have three bands playing, but they have a large following in Orange County. It will be five hours and three bands: The Mighty Spectrum Band, Hurley Mountain Highway and JB Bones,” Nathan said.

Vendors will be on site at the festival selling food including Christopher’s Bistro from Chester and Sugar Loaf Fire Company will sell hot dogs and hamburgers. Rushing Duck Brewery will also sell its beer at the festival.

“We had a raffle last year, and we will do that again from businesses all over Orange County. This year we will have a face painter and we may have a Tarot reader and a henna artists. We’re also bringing back a Memory Tree where people can put notes about their loved ones. We’ll also be selling our T-shirt.”

Nathan said her involvement with the fundraising side of the Alzheimer’s Association began with a bike ride benefit for The Longest Day.

“It started with the Longest Day, and we created this fundraiser. Ben loved to bike -- that was one of his passions, so we had a little bike ride, and a month later he was in the nursing home. I think from there, I just became involved, I called and said I could help.”

It was about six years ago when Nathan began to suspect that something was amiss with her husband.

“I think it was little things, he had trouble with at work. He clocked in at work on the time clock, and he was making a lot of mistakes. He was having trouble setting the alarm on the phone. He would ask me again and again how to do it. It was little things, processing delays and memory issues -- just little things that put up red flags for me. He wasn’t showering every day, and his hygiene was changing.”

She said she Googled the symptoms, and Alzheimer’s came up, so she knew that despite the fact he was only 58 at the time, that it was possible.

“I had it in the back of my head. The fear and the worry was there, and eventually I got him to go to the doctor,” she said.

He went to his general practitioner who sent him to a neurologist, but the test the neurologist gave him failed to flag any signs of trouble. By the time they visited a second neurologist at Columbia, however, the screening test showed signs of Alzheimer’s that were confirmed by all the other tests. After his diagnosis with younger-onset dementia, he tried one of the drugs used to manage symptoms in the early stage.

“He said in the beginning it made him feel a little better, but it wasn’t long lived. There was a period where it plateaued for a while – the symptoms were escalating, but it was livable. But he eventually had to leave work.”

A former cabinetmaker in New York City who had also had his own business in the Hudson Valley, he now worked at Home Depot. His coworkers realized he was slipping and covered for him as long as they could.

“His colleagues kept him going for six months past when he should have left. They adored him. They all knew, at that point, but they kept him going until he knew he had to leave,” she said.

Shortly after, in July 2015, they noticed he was having tremors. This ultimately led to a diagnosis of Lewy Body dementia in addition to Alzheimer’s. Following this additional diagnosis, she said his decline started to accelerate.

“It was like a rocket ship. It was very fast -- the decline was horrible, starting from when he was diagnosed with the Lewy Body.”

She said they reached out to the Alzheimer’s Association early on and found its resources helpful.

“When he was originally diagnosed, we met with Donna Davies,” Nathan said, referring to one of the Association’s care consultants who works out of the Middletown office. Care consultants are licensed social workers on staff who are available to meet with families who have a loved with dementia and offer guidance in a variety of areas.

“I was really struck and impressed by her ability to speak to Ben very candidly about the disease, not sugarcoating anything but being very compassionate,” she said.

Nathan said they also attended Alzheimer’s Association programs, including Music Socials by Certified Music Therapist Melinda Burgard and the annual Orange/Sullivan Wellness Retreat held at Frost Valley YMCA in Claryville. She said also attended a caregiver support group.

She said her caregiving experience has given her a strong inspiration.

“I want to recognize caregivers out there for what they are doing. I understand that being a dementia caregiver almost undid me, and I am passionate about wanting to help other caregivers and recognizing them and understanding what they go through,” she said. “One of the things I’m really passionate about is that we need research. We have this disease that there’s no cure for, no treatment for. We need more scientists. We need people to recognize that it affects not just the person with the disease, but the entire family, and it’s so debilitating.”

She said it was also important to her to help spread the word about the Alzheimer’s Association in the community.

“I want to give back, because the Alzheimer’s Association helpline was incredibly helpful to me. It really was my lifeline. I want people to know that the Association is right here in Orange County and to take advantage of it. That’s why also we need to support the research and the funding for things like this to keep going. And I’ve made great friends,” she said.

June is Alzheimer’s & Brain Awareness Month, a time dedicated to increasing public awareness of Alzheimer’s disease, available resources and how you can get involved to support the cause. Visit alz.org to learn more about Alzheimer’s, its warning signs, the importance of early detection and diagnosis as well as information on care and support.

The Alzheimer’s Association is the leading voluntary health organization in Alzheimer’s care, support and research. Its mission is to eliminate Alzheimer’s disease through the advancement of research; to provide and enhance care and support for all affected; and to reduce the risk of dementia through the promotion of brain health. Its vision is a world without Alzheimer’s. Visit alz.org/hudsonvalley or call 800.272.3900.

Photos: Lisa Nathan with her family recently. Scenes from Alzheimer’s Musical Memory Day 2017. Lisa Nathan and her husband, Ben, before and after his diagnosis.

If you go

What: Alzheimer’s Musical Memory Day

When: Noon to 5 p.m. Sunday, June 24. Will be held rain or shine.

Where: 1405 King’s Highway, Sugar Loaf

Admission: $15 for adults; $5 for ages 5-15; under 5 free.

Parking: Free

If you go

What: Orange/Sullivan Walk to End Alzheimer’s

When: Saturday, Oct. 6. Registration starts at 9 a.m. Opening ceremonies at 10 a.m. followed by the walk.

Where: Thomas Bull Memorial Park, 211 Route 416, Montgomery

Web: To register or make a donation, visit OrangeSullivanWalk.org