“Being with someone who can't talk to you about anything, sleeping in a bed with someone who behaves like an 8-year-old, is miserable,” says Gasby. “I'll take her to the movies, and she'll get up and want to leave. You don't have a normal life.”
Smith may look the same, but she's changed, says Gasby. “She may say she's fine, but if you talk to her for three minutes, you realize she doesn't know what fine means,” says Gasby. “This disease is ugly. It's debilitating. It's slow-motion death.”
Initially, Smith took donepezil (Aricept), an acetylcholinesterase inhibitor. She also tried other medications to stabilize her mood and certain supplements for their purported antioxidant and anti-inflammatory properties, but nothing really helped.
A DIFFERENT DIET
Smith and Gasby also overhauled their diet, eliminating carbohydrates, fats such as cheese and butter, most red meat, and processed chicken. They now eat mostly fish, including freshwater salmon, which is high in omega-3 fatty acids, polyunsaturated fatty acids known to reduce triglycerides and help lower blood pressure.
“Evidence suggests that eating a heart-healthy diet—fish and poultry rather than red meat, and lots of fruits and vegetables—and staying active mentally, physically, and socially may be helpful,” says John C. Morris, MD, FAAN, an endowed professor of neurology and director of the Knight Alzheimer's Disease Research Center at Washington University in St. Louis. “I encourage my patients to adopt these activities.”
Still, Dr. Morris cautions against thinking that preventive measures like a Mediterranean-style diet or mentally stimulating games will absolutely reduce risk. “We don't know that solving Sudoku or crossword puzzles or playing chess is really the factor that may reduce risk,” he says. “It may be that that's just a manifestation of something else that's protective. For example, people who gravitate toward playing chess may have bigger or better brains to begin with.”
Beyond the obvious, life has changed in other ways for Smith and Gasby. For one thing: romance. As he notes in Before I Forget: Love, Hope, Help, and Acceptance in Our Fight Against Alzheimer's (Harmony Books, 2016), their sexual relationship is no longer what it once was.
“I still felt desire for her, but on B.'s side the passion was gone,” he writes. “She loved me, but in a distracted way. She cuddled, but that was about it. The lover I knew was gone, replaced by a new, more muted version of the woman I had married.”
It was hard with friends, too. Many didn't know how to act around her. Some people drifted away when it was clear that Smith and Gasby were no longer the “it couple.” Others disappeared because it made them confront their own mortality. After all, if someone as vibrant as Smith could get such a horrible disease, maybe they could, too?
“I go through periods of frustration,” Gasby admits. “It's sort of like wearing a pair of shoes that are too tight, but it's the only pair you've got so you live with it. But you know your shoes are creating a corn or a bunion, and you're walking on a road of glass.”
But Gasby isn't one to go down without a fight. In 2014, he and Smith went public with her diagnosis, sharing the news on television talk shows. Two years later, they published their book. In January 2017, Gasby joined the board of the American Brain Foundation (ABF) and has been helping to raise funds and make connections in the media.
“Certain diseases like breast cancer, heart disease, AIDS, and multiple sclerosis have been marketed so well that Alzheimer's disease has taken a backseat,” says Gasby. “People should hate this disease. This is one of the few times where hate is good. If you fear something, you run away from it, but if you hate something you fight it.”
Gasby and Smith's efforts have made a difference. In April, the couple was honored with the Public Leadership in Neurology Award from the ABF “for their dedicated and creative work to raise awareness of Alzheimer's disease and to promote brain health,” says ABF executive director Jane Ransom. “By sharing their personal story with millions of people in their book Before I Forget, Dan and B. have injected urgency into the fight to defeat brain disease. They have also shined a light on the disproportionate impact that Alzheimer's disease has on African-Americans.”
Gasby is philosophical. “The only way I was going to feel whole was to fight this disease and make people aware of how devastating it is and how important it is for them to participate in drug trials and push their members of Congress.”
He publicly thanks the doctors, researchers, and caregivers who work with Alzheimer's patients as often as he can. “I know how tedious and backbreaking research can be. I know how unsuccessful many investigators feel,” he says. “I'm there as a cheerleader to tell them to keep going. To say, ‘Thank you for everything you have done, everything you are doing, and everything you will do.’”
Although there have been few upsides, the experience has helped Gasby appreciate life's delicacy. “The disease has made me realize how precious every little thing is, like being able to think and understand that day and night are different,” he says. “And that years and days go by, and that there's something to look forward to, something to get over, something to regret, and something to appreciate.”
So far, Gasby has avoided putting his wife in a facility, although that day might come. He knows this, though he doesn't like it. The way he sees it, he made a vow—in sickness and in health—and he intends to honor that.
Smith still recognizes him. “She knows I'm her husband,” he says. “She says I'm a good man. I wish I could be a better man and get her well.”
The American Brain Foundation Looks Outward
Until last year, the board of the American Brain Foundation (ABF) was comprised entirely of neurologists. But in an effort to widen its reach, the board brought on five nonphysician members, including Dan Gasby; Susan Schneider Williams, the wife of Robin Williams, whose autopsy following his suicide in 2014 revealed that his brain was riddled with Lewy body dementia; and Ben Utecht, a former football player for the Indianapolis Colts who has had five concussions.
The ABF also recently launched a neuroscience crowdfunding site for research projects that may one day lead to a cure for brain diseases. “It's very exciting,” says ABF executive director Jane Ransom. “These board members are looking outward and helping to turn curing brain disease into a national cause.”
So far, the ABF has committed more than $25 million toward brain research, and their crowdfunding site connects patients, caregivers, and donors with researchers and experts in the field of neurology. Ongoing projects include efforts to use virtual reality to improve stroke outcomes and to identify new ways to treat dementia. For more details, go to http://AmericanBrainFoundation.org.
Resources for Alzheimer's
© 2017 American Academy of Neurology
- Alzheimer's Association: http://alz.org; 800-272-3900
- Alzheimer's Association Research Center: http://bit.ly/AD-Research
- AlzConnected: http://alzconnected.org
- Alzheimer's Navigator: http://alzheimersnavigator.org
- American Academy of Neurology patient site: http://bit.ly/AAN-Alzheimers
- Mayo Clinic: http://bit.ly/Mayo-Alzheimers
- National Institute on Aging: http://nia.nih.gov; 800-222-2225
- UsAgainstAlzheimer's: http://usagainstalzheimers.org; 202-349-3803
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