Calistoga resident Mike Raspolich has Alzheimer’s disease, but he doesn’t want to be treated any differently in light of his diagnosis.
“Don’t treat me like a leper, I am not contagious,” Raspolich said as he addressed the crowd at the annual Understanding Memory Loss: Strategies For Success, a symposium hosted by the Alzheimer’s Association in Yountville on Thursday.
The conference, now in its seventh year, is designed to inform professional caregivers as well families living with Alzheimer’s disease and related dementias about advances in Alzheimer’s research and therapies, but it was the personal stories of those suffering with Alzheimer’s that put a day’s worth of presentations into perspective.
Raspolich was joined by Napa’s Cynthia Guzman and Bob Muller of Marin County in a panel discussion about early-stage Alzheimer’s. All three were diagnosed with Alzheimer’s in the past five years.
“I’m a different person than I was four years ago when I started this journey,” said Guzman, who was honored as Napa County Woman of the Year by U.S. Rep. Mike Thompson for her Alzheimer’s advocacy efforts. “I don’t have the memory I had before. This devastating disease is taking my independence away from me.”
Guzman explained that she has difficulty with basic tasks and requires assistance to run errands. She also said she hasn’t driven a vehicle since her diagnosis because she gets lost easily.
Guzman discussed undergoing testing to determine if she had Alzheimer’s and recounted her frustrations when she began to realize the severity of her condition. “When we got to the memory part (of the tests), I got really upset, and the psychologist said ‘We need to stop right now, what’s the problem?’ And I said, ‘You know, I’m a lot smarter than what this test is letting me show you.’”
Guzman attends an early-stage memory loss support group hosted by Napa Valley Hospice & Adult Day Services in Napa. Guzman credits the support group in assisting her in coping with her disease. She said it is helpful to talk with others who are going through similar situations, which makes her feel less isolated by her illness.
Muller also attends the support group in Napa despite living out of the area. Diagnosed in 2011, Muller, 70, said he is just now able to discuss his disease publicly.
“At first, I wasn’t talking about what was going on with me,” Muller said. “If I met someone and was having problems with my speech, I wouldn’t say anything. But I could see that people were seeing that something was going on, so I decided that I’d be better off just coming right out and saying ‘I have some hesitations here, but it’s my Alzheimer’s. Please don’t jump in and try to help me; I’ll get it in a second and we’ll go on.’”
According to the Alzheimer’s Association, 5.3 million Americans are living with Alzheimer’s disease, including 200,000 people younger than 65. The organization projects 16 million Americans will be living with Alzheimer’s in 2050 if no cure is found.
Dr. Deborah Barnes, associate professor of psychiatry at UC San Francisco, described Alzheimer’s as a global epidemic. In 2010, there were approximately 36 million people diagnosed with Alzheimer’s and related dementias. She projects that figure will balloon to 115 million by 2050.
Barnes’ research focuses on the benefits of exercise and brain health. She discussed a new program at UCSF called Preventing Loss of Independence through Exercise (PLIE). As part of this treatment program, Alzheimer’s patients participate in group exercise sessions in which the group members sit in a circle and mimic movements of a facilitator. If a participant has trouble following the movements, he can look across the circle to mirror the movements of a fellow participant. The repetition of the movements builds muscle memory, which Barnes said the body maintains even as cognition begins to fail.
Barnes assertions about the connection between brain health and exercise are supported by studies published by the University of Copenhagen and the University of British Columbia earlier this year. Barnes said the Alzheimer’s Associate has funded the next phase of the PLIE program and hopes to offer similar programs throughout the Bay Area.
Guest speaker David Troxel, co-author of “The Best Friend’s Approach to Alzheimer’s Care,” said he’d hoped to be out of business by now. He began his work in creating and facilitating day programs for Alzheimer’s patients back in 1980 at the University of Kentucky.
Troxel discussed a relationship-centered approach to caring for Alzheimer’s patients as modern medicine has yet to yield a prescription treatment to prevent the progression of the disease. He said it is imperative to help Alzheimer’s patients feel valued and needed and keep their self esteem high, so that they don’t regress into depression and become unresponsive.
He said finding a way to connect with patients on a personal level is the best treatment to offer until the medical world is able to develop a more concrete treatment or cure.
Yountville Mayor John Dunbar made a brief appearance at the event, thanking the crowd of nearly 120 attendees for their participation. Dunbar’s father passed away from Alzheimer’s disease in 2010.
“I have selfish reasons for wanting to be as engaged as I have been,” Dunbar said. “My father in the last several years of his life suffered from this disease, and it was very difficult to watch such a strong and intelligent person slowly deteriorate from the inside out. Those last couple years when I was visiting him, he’d smile like he always did to a total stranger and that is not easy as many of you know.
“It’s very difficult to see that transition, especially for someone who is an immediate family member or close friend because you know what’s inside there.”
Dunbar said he is proud that Yountville hosts Napa County’s only Walk to End Alzheimer’s fundraiser. The annual event for the Alzheimer’s Association raised more than $100,000 during its third season. This year’s event was held in September, and event organizers said the event will be back in Yountville next summer.
Shelley Dombroski, Alzheimer’s Association regional director, said the Understanding Memory Loss: Strategies For Success conference would return to Napa County in 2016.