CHEYENNE – Robyn McIntyre sat in the local Alzheimer’s Association office in the company of two women who beamed with pride as they described her as their hero.
McIntyre started working with Wyoming Chapter Executive Director Debra Antista-Bianchi and public policy manager Ann Clement a few months ago, and the three of them instantly had a connection. They were united in their passion to advocate for those struggling with Alzheimer’s, and to show residents the resources and support system in their own backyard.
More than 6 million Americans are living with Alzheimer’s nationally, and the number of people 65 or older with the disease in Wyoming totals close to 10,000. Reports show there will be a 30% increase to 13,000 by 2025, having a large impact on a state with a current population of only 581,381.
Alzheimer’s is the seventh-leading cause of death in the U.S., and the only one without a prevention or cure. The disease kills more people than breast cancer and prostate cancer combined, but it has impacts on lives in other ways.
There are 16,000 caregivers in Wyoming that often suffer from depression, experience chronic health conditions and are in poor physical health due to focusing on their loved one.
The three women in the office make their best effort to put a face to this population, and to find a beam of hope for families. It takes the shape of educating the public, lobbying for research funding and accessible health care, and planning events for communities across the state.
While all three of them work together to make this possible, Antista-Bianchi and Clement wanted to shine the light on their development manager.
“Brave and bold is our Robin, and just really our inspiration,” said Antista-Bianchi. “We get the good fortune of knowing this hero. She really is on a journey.”
Deeper understanding
McIntyre has a deeper understanding of Alzheimer’s disease than most advocates who work for the association. She was a caretaker alongside her father as her mother succumbed to the disease in her early 50s, and has watched other family members suffer the same fate.
Alzheimer’s can be traced back to her great-grandmother, but it wasn’t first confirmed until her grandfather was diagnosed with the disease in the 1970s.
“He developed the disease in his late 40s, and they diagnosed him and said, ‘There’s nothing we can do. Go home,” McIntyre said. “My grandma had six young children at home.”
Her grandfather started drinking and became abusive to the point where law enforcement was called several times. Eventually, he was taken from the home and placed into a care facility. McIntyre said that he would cry for his family every day, but it was the disease that had caused his behavior, not who he was.
“The only memory I have of him is visiting him in the care facility,” she said. “He was bedridden, couldn’t speak, but we would bring in candy bars. My sister remembered specifically that it was Milky Ways.”
Her family didn’t suspect the disease stretched any farther, and they went back to living their lives after his death. It wasn’t until the early 2000s, when her uncle’s bosses noticed a change in his work at the oil fields, that questions were raised.
Doctors had mentioned in passing that Alzheimer’s disease could be genetic, but this sparked the family to get together to discuss their options with researchers.
They all got tested and discovered five out of the six siblings from McIntyre’s grandfather had the genetic mutation, meaning they were among a miniscule percentage of the population guaranteed to develop the early onset, autosomal dominant Alzehimer’s disease.
Other family members were diagnosed with the gene, as well, but one of the closest to home was McIntyre’s mother. She never thought she’d have to process losing her mom in her late 20s or 30s, and she questioned whether it was good to have that information.
“That’s a hard thing to swallow at that age, and so that’s when I got involved with the Alzheimer’s Association, just as a volunteer,” she said.
A few years later, her mom was diagnosed with mild cognitive impairment, and then Alzheimer’s disease in 2010.
McIntyre ended a five-year relationship and moved back to Wyoming in 2013 to become a caretaker for her mother, and to spend the time they had remaining together. McIntyre’s mother was moved to a care facility in her hometown in North Dakota during the disease’s later stages, and the dedicated daughter would drive 600 miles one way every month to be with her.
It was difficult for her and her father to take on the disease together, and there were lonely moments.
Both McIntyre and her colleagues at the association said the disease is highly stigmatized, and not everyone’s reaction is supportive. Friends disappeared because they didn’t understand the disease or what was happening. Her mother could be chatting and bring out salsa for a snack, but then pour it into the candle.
“Responding to a person with dementia is a learned response. It’s not intuitive,” said Antista-Bianchi. “We teach classes on effective communication, understanding and responding to dementia-related behaviors. It’s actually counterintuitive; we’re inclined to sort of correct and adjust. We don’t need to do that with a person with dementia. We have to lean into it.”
Lori McIntyre died in 2016, and the autopsy revealed her body was in immaculate health, except for the fact that her brain was highly diseased and deteriorated. Her brother passed away just a few months later, and other family members lost the battle to Alzheimer’s.
Before they passed away, they were a part of research to help search for solutions in the future. They learned that they also had a 50/50 chance of passing on the gene to their offspring.
Her own diagnosis
Robin McIntyre discovered in 2011 that out of her three sisters, she would be the one to develop early onset Alzheimer’s. She kept it a secret from her family for a long time, and didn’t tell anyone.
“Including my dad,” she said. “It wasn’t until after my mom passed away that I finally did tell him. I was just afraid of breaking his heart.”
She had also already made one of the most significant decisions of her life in 2012, when she was 29 years old.
McIntyre had already begun observational research, but she learned that there would be drug trials. She accepted that she wasn’t going to have kids, as she didn’t want to pass on the gene, so she threw herself into the trial. It’s the only trial that she will be able to take part in, because she would skew the results of other pharmaceutical studies.
It’s for a monoclonal antibody, and it’s an injection that goes into your stomach and into the bloodstream. She said it crosses the blood-brain barrier and attaches to, or neutralizes it and eliminates amyloid plaque. The plaque is believed to be one of two proteins that forms an excess on the brain that causes the disease.
The connection to Alzheimer’s starts when amyloid shows up, and then the tau protein comes next. Once tau develops, patients generally start to become symptomatic. She said researchers hope that if the amyloid levels are kept low, a patient with the genetic mutation will stay asymptomatic.
It has given McIntyre hope, and she has become an advocate for research, the Alzheimer’s Association and others facing the same disease. She said it empowers her to support people in her journey.
“The last thing I want is for anybody to feel like they have to do it alone, because I never really felt like I had to do it alone. There are people who certainly feel that way,” she said. “That’s where I get the motivation.”
Through all of these challenges, she has done her best to remain positive. McIntyre said she is grateful for qualifying for the drug trial, having family support and getting a dream job with the association that understands she needs to take time off for research.
She said her vulnerability equals strength, but she does recognize what she’s lost.
“Having a mother in my life – I feel like the disease robbed me of that. She wasn’t able to attend any of my sister’s weddings, and she has beautiful grandchildren that she never got to know,” she said. “She was my best friend, and that’s the only thing that I feel that I’ve missed out on.”
McIntyre’s colleagues at the Alzheimer’s Association said they recognized the challenges that she has overcome and the resource she has become for others. It is why they see her as an unsung hero.
“We don’t often acknowledge the struggle that other people are going through, that’s right under the skin,” said Clement. “And if you’re willing to be that voice for so many people, that’s such a brave and bold place to be.”
She was applauded by Antista-Bianchi for her perseverance, as well as her decision to disclose that she had the dominant gene and was in drug trials. The executive director of the Wyoming chapter believes it was modeled to her by her family’s decision to fight the disease, “if not for me, but for my children, my grandchildren and others.”
She said that McIntyre took control of her life and the way that Alzehimer’s would define it, and did what many others would not.
She used a comparison close to her heart. Antista-Bianchi said that her husband was retired law enforcement, and one night, their children informed them that someone was in the backyard. Her husband said to call 911, and went to check it out.
Her eldest daughter said that they should wait for 911, and her youngest daughter said, “He is 911.”
“Heroes go into scary spaces when the rest of us are not going to,” she said. “That’s really the epitome of heroes: being brave enough to go out there and not wait for 911 to do it for you.”
McIntyre said she never expected to be anyone’s hero, and it often is surreal. She credits it to her role models, as well, and being taught to help and care for as many people as possible.
It’s a beautiful journey for her, and she’s excited to see what comes next, but she is aware of the reality. The last time she had her annual visit, she was told by her research coordinator that her estimated year of onset is five years from now. She thought she had more time.
Although it weighs on her, this experience has turned her into a “yes girl.” She goes on trips, eats the best cuisine, spends time with her friends, and lives life day by day.
“We’re thinking about yesterday or the future, and I really do just try to make each day the best, live in the moment and enjoy every second,” she said. “Because maybe someday I won’t have that.”
