The Alzheimer’s Association walk will take place on October 29 at Segra Stadium in Fayetteville.
When Jay Reinstein was diagnosed with Alzheimer’s disease four years ago, Fayetteville’s deputy city manager was devastated.
“It was a punch in the stomach,” he said.
Now Reinstein, who retired early, is a board member of the Alzheimer’s Association.
His diagnosis came, he says, after noticing he had trouble remembering and understanding information discussed at work meetings. Doctors were able to detect the early stages of Alzheimer’s disease during a brain scan, Reinstein said.
He is currently taking Namenda and Aricept, drugs intended to slow the progression of Alzheimer’s disease.
More: Local help‘You are not alone’: Cumberland County Council on Older Adults fights dementia
“I think some days are better than others,” he said.
After disclosing his diagnosis to colleagues, friends and family, he and his friend Tracey Broyles formed the Jaywalkers, a group of family and friends who participate in the annual Walk to End Alzheimer’s Disease, a national event that raises awareness and funds care, support and research. The march this year in Fayetteville is at 9 a.m. Saturday at Segra Stadium, 460 Hay St.
The Jaywalkers have raised $24,000 so far this year and hope to raise $45,000 before the end of the year.
Reinstein, who has been married to his wife, Angela, for 31 years, said the diagnosis hurt his marriage.
“It was hard for my wife to go to support groups because she had to hear some of the other people with their diagnosis and their progress, and it hurt me a little at first that she wasn’t there. don’t go. I kind of took it personally,” he said. “But now I fully understand that it is sometimes difficult for the caregiver, the spouse, to hear how this disease progresses differently in different individuals.”
The couple have two daughters, a son and five grandchildren. Reinstein said his 27-year-old daughter is an active volunteer for the Alzheimer’s Association.
“My daughter Elizabeth has been a huge supporter,” he said. “She is present at all the marches. She is part of various committees. She is very involved in Alzheimer’s disease.”
He said his goal right now is to spend as much time as possible with his family before he forgets who they are.
“My #1 fear is the burden I would likely be on my family. The cost of taking care of me,” he said.
Reinstein said he hopes to change the stigma that comes with Alzheimer’s disease by staying involved and active in the community.
“People pretty much think your life is over and you’re going to a nursing home,” he said.
In addition to being an advocate for ending Alzheimer’s disease, Reinstein has a radio show on WIDU 99.7 every Tuesday at 9 a.m. The show, which focuses on politics, is entering its third year.
Reinstein started the show after being diagnosed with Alzheimer’s disease. “I needed to fill the void I had with my retirement,” he said.
Fight to end the disease
Lisa Roberts, executive director of the Eastern North Carolina chapter of the Alzheimer’s Association, which covers 51 of the state’s 100 counties, said the nonprofit’s goal is to struggle to end the disease.
“I lost my mother to a disorder related to Alzheimer’s disease,” Roberts said. “I was a volunteer at first, and it became very personal.”
Roberts said the Fayetteville march was part of a nationwide fundraiser, held in 660 locations.
“More than 180,000 North Carolina residents live with Alzheimer’s disease or some form of dementia,” she said. “Across the country, we’re looking at 6.5 million.”
Alzheimer’s disease typically affects people age 65 and older, Roberts said.
“In North Carolina alone, more than 356,000 caregivers provide care for people with Alzheimer’s disease and other dementias,” she said.
“She doesn’t know any of us”
Brenda Sutton, 66, lives in Fayetteville and cares for her mother, Louise Edwards, on a part-time basis.
“She couldn’t live on her own anymore,” Sutton said.
Edwards, 93, was diagnosed with Alzheimer’s disease seven years ago. Sutton said her mother’s diagnosis was devastating.
The hardest part, she says, was watching her mother slowly decline.
“Alzheimer’s disease robbed him of memory and mobility,” she said. “She doesn’t know any of us.”
To help, Sutton and her family placed family photos throughout Edwards’ home.
“At first she realized she was home and she saw us all as her enemies,” Sutton said. “What we did to quiet that part of his mind, we had lots of pictures in every room of the house.”
As a tribute to her mother, Sutton said she named her walking team Lou Bell’s Legacy. Lou Bell’s Legacy has raised nearly $7,000 so far this year.
“It’s a horrible disease, and we need to raise as much money as possible and make our voices heard as much as possible,” she said. “It keeps people away, but it leaves them here.”
For more information, visit the Alzheimer’s Association online at act.alz.org.
Ariana-Jasmine Castrellon, education and family reporter, can be reached at [email protected]