Robin McIntyre’s mother, Lori McIntyre, passed away in February 2016, but she had slowly been slipping away for more than half a decade.
Though Lori McIntyre was just 56, her death marked the end of six-year struggle with early-onset Alzheimer’s — a degenerative brain disease for which there is no prevention or cure.
“It was like just slowly losing a piece of who you knew as mom, a little bit at a time,” Robin McIntyre said. “It was a lot of loss over a long, strung-out period.”
According to the Center for Disease Control and Prevention, Alzheimer’s is the sixth leading cause of death in the United States, just behind strokes and just ahead of diabetes. The disease takes more than 93,000 lives a year.
Alzheimer’s first destroys a person’s short-term memory, before going on to affect a person’s ability to remember logical thoughts, regulate emotional outbursts and retain long-term memories. The disease eventually and inevitably overpowers the part of the brain responsible for breathing and heart rate, resulting in death.
Alzheimer’s is commonly considered a geriatric disease, but Lori and Robin McIntyre inherited a rare gene that causes the disease to strike earlier.
“If things for me go like they did for my mom, then I have potentially lived more of my life than I have left,” said Robin McIntyre, 34. “Which is kind of an awful thing to think about.”
Robin McIntyre said the knowledge of what is to come affects the decisions she makes about how to live her life. She has, for example, decided against having children. She also decided to help researchers learn as much as they can about the disease by providing blood and spinal fluid samples and volunteering for brain scans and drug trials.
“I’ve decided to be the perfect little lab rat that I am,” she said. “Scientists are really able to learn a lot from someone like me.”
Robin McIntyre is now outspoken about the disease, traveling around the country to raise awareness and spread hope. She said she was convinced to be more public after attending a convention in Toronto, Canada, during which she met people terrified of losing jobs, promotions or friends if their condition was known. She met others who had yet to experience Alzheimer’s, but knew, given family history, they likely would.
“I just was so saddened to see how many of those people were living their life in fear,” Robin McIntyre said.
Pennsylvania-based journalist Niki Kapsambelis did extensive research on the McIntyres — and Lori McIntyre’s family, the DeMoes, through whom the rare early-onset gene has been passed for generations. The result of that research was Kapsambelis’ first book “Inheritance: A Family on the Front Lines of the Battle Against Alzheimer’s Disease.”
The book details the way the family has been touched by Alzheimer’s and about the science of the disease, as well as research into possible treatments.
Robin McIntyre and Niki Kapsambelis will take part in a presentation during the Rocky Mountain Alzheimer’s Summit on Wednesday in Cheyenne, as well as a book signing in the Library Sports Grille and Brewery between 6-9 p.m. Thursday in Laramie.
The summit will host presentations on research into Alzheimer’s as well as presentations aimed specifically at those caring for patients of the disease, said Catherine Carrico, associate director of the Wyoming Center on Aging and summit organizer.
“We’re going to have a number of sessions on how to really provide the best care for someone with dementia,” Carrico said. “It will be good for people with a family caregiver as well as health care professionals who work with dementia.”
The summit will also teach caretakers how to care for themselves.
“Caring for someone with Alzheimer’s disease or a related dementia is just very exhausting, emotionally and physically exhausting, work,” Carrico said. “And we really need to help caregivers learn how to take care of themselves, while providing the level of care they want to their loved ones.”
The summit is made possible by a federal grant from the Health Resources and Services Administration and follows a similar summit held in 2014. Presentations at the summit will be recorded and posted to the Wyoming Center on Aging’s website in the coming weeks for those unable to attend.
