Stephenie Cooke's grandma, Virginia Sue Steinbeck of West Helena -- "Ninny," her family called her -- was diagnosed with Alzheimer's disease when she was in her mid-80s. At that time, Cooke says, there were no support groups for families who wanted to take care of their loved ones with Alzheimer's at home in the Delta.
One in six people by the age of 65 will be diagnosed with Alzheimer's or a related dementia, Cooke says. By 85, it's one in every two.
Alzheimer's is a progressive brain disorder that gradually destroys a person's memory and ability to learn, reason, make judgments, communicate and carry out daily activities, explains Elise Siegler, executive director of Alzheimer's Arkansas.
But the disease can also dramatically affect the life of the caregiver.
"You become an advocate as a caregiver,'' says Cooke. ''You are not only the person who keeps a roof over their head, but you are their nutritionist, their financial adviser ... their shopper. You are their personal dresser. The roles you have to take as a caregiver can be astounding at times."
Cooke came across the nonprofit Alzheimer's Arkansas after searching for help online. "I went by their offices and met with their development director, and I was sold on the type of support in place for families," she says.
The statewide organization provides free programs and services to caregivers and their loved ones with Alzheimer's and dementia. "Our mission is to provide the information and support needed so that all Arkansans affected by Alzheimer's disease and related dementia are able to live with dignity and comfort until a cure is found," Siegler says.
Cooke decided she wanted to help support the organization as well as honor her grandmother. She shared her wish to support the nonprofit with David and Becky Rainwater (no relation to Michael Ralph Rainwater).
She says she pointed out that the Rainwaters had a beautiful home, a nice big yard and that David has a band. "What if we just had a little party and invite some friends ... to get together on a Saturday night, play some music and talk about Alzheimer's Arkansas and how we can support them."
In Cooke's mind, that meant 20, maybe 30 people. David had a much bigger vision.
Rainwater, one of the principals and chief executive officer at the public relations agency Mangan Holcomb Partners, told Cooke, "This idea is bigger than my backyard. I think we have an opportunity here. Let's just check out what we can do with it."
With the creative help of colleagues at the agency and members of his band who came in from across the country to perform, a new event was born, Amp Out Alz. Cooke and David Rainwater are co-chairmen of the event, now in its fifth year.
For the first event they found a venue, The Rev Room, and started marketing and telling people about it, Rainwater says. "We printed some tickets and put on a show in the bar ... and we had a great time."
He says that he and Cooke saw the event as an opportunity to bring people together and introduce them to an organization that has great resources and programs. "If nothing else, it was a love connection. You know?"
This year, Amp Out Alz will be held at 7 p.m. April 9. at The Rev Room. "There's an opportunity for people to have a cocktail, get to know one another and meet the people from Alzheimer's Arkansas."
Then there's the "reunion" of Roxx. Rainwater's classic rock band have known each other since eighth grade, playing together for 35 years. "This is our one big deal. We play a couple times a year, but this is the one thing we do in Little Rock."
Music starts at 8 p.m. and Rainwater says they play until they get kicked out or folks can't dance anymore.
"Your donation will get you in for an evening of light-heartedness and live music that is awesome," Cooke says. "Everyone in the place just stands up and dances. It doesn't matter if you are single or with a group of people. We get on that dance floor, listen to awesome music and just celebrate."
And the $30 ticket price is just modestly more than a good show at The Rev Room might be, and 100 percent of the proceeds goes to the charity, where programs and services include a 24-hour telephone line, financial assistance for respite care and other caregiver needs, education and counseling, support groups and fellowship.
"We are able to provide these programs and services free because of the extraordinary work our volunteers like Stephenie and David do on our behalf through fundraising events like Amp Out Alz," Siegler says.
"You know, you are directly [affecting] the lives of your neighbors in every community around Arkansas," Cooke says.
Amp Out Alz will be held at 7 p.m. April 9 at The Rev Room. For more information or to purchase tickets, visit ampoutalz.com.
High Profile on 03/27/2016