BY SETH VOORHEES OSWEGO | spectrumlocalnews
OWEGO, N.Y. — Nearly seven million Americans live with Alzheimer’s disease, and according to the National Institutes of Health, the number could grow by 50% by 2060. It’s a stunning number, but researchers say they’re making great progress in understanding and preventing the disease, which affects memory, thinking and behavior.
An author and pastor who’s been living with Alzheimer’s for two decades is being recognized for her attitude and her participation in research. Rev. Dr. Cynthia Huling Hummel said she feels the connection that music brings.
“It’s wonderful to be able to make music,” said Huling Hummel, of Oswego. “To share music, and it just connects us with people.”
Huling Hummel often plays music for people with memory loss issues, as part of a band.
“For people living with dementia especially, music stays,” she said. “It’s amazing. And the words are tucked in our brain, in a place that doesn’t seem to be as affected.”
Huling Hummel is a Presbyterian pastor, leading what she says is a rewarding life — even though it’s not an easy one.
“I was forgetting names of my parishioners, forgetting my appointments, I got lost on the way to the cemetery when I was expected at the cemetery to officiate a burial,” she said. “I was really, really lost. It was a hard time.”
Huling Hummel began noticing those symptoms at age 49. Eight years later, she was diagnosed with Alzheimer’s disease. It was difficult, but also a blessing, she says, because it answered a question: Why?
“I take that ‘why me’ and I move it to ‘what’s next?’ ” she said. “We can sit here and feel sorry for ourselves with whatever we’re dealing with, or we could take action.”
Aside from preaching and singing, art helps Huling Hummel keep focus. That and her involvement in Alzheimer’s research help give her purpose.
“The reality is, unless we have people who will participate in research, we’re not going to get the treatments,” said Huling Hummel. “We’re not going to get to the cures.”
Cynthia’s advocacy is being rewarded with an honor — the Global Alzheimer’s Platform Foundation’s Citizen Scientist Catalyst Award.
“It was humbling,” she said. “There are so many people out there who are participating in research, and it’s wonderful that together we are making a difference.”
Twice a year, Huling Hummel drives from Oswego to Rochester, a 300-mile round trip, where she meets with Dr. Anton Porsteinsson, a professor of psychology at the University of Rochester School of Medicine. Clinical research into Alzheimer’s disease is his life’s work. It’s research that cannot happen without volunteers.
“It’s impressive to see how people feel, that participating in research is empowering,” said Porsteinsson, director of the university’s AD-CARE program.
Porsteinsson has more than 30 years of clinical research work studying the cause and potential cures for Alzheimer’s disease. One of the biggest challenges, he says, is finding research volunteers.
“Progress is never fast enough,” he said, “especially for a disease like this. But if it was easy, we would have cracked the code a long time ago.”
“When we help others, I do believe we help ourselves,” said Huling Hummel. “And it helps us get out of that stuck stage about ‘why is this happening to me? This is so unfair.’ “
The disease runs in Huling Hummel’s family. Her mother and uncle both died from complications of Alzheimer’s, and her grandmother had dementia. She worries about the future.
“I’m very anxious about what’s happening, in terms of research being paused, defunded,” she said.
Huling Hummel controls what she can, to raise awareness and hope.
“This is my opportunity to put my faith in action,” she said.