They thought breast cancer was the worst of it. Then came the brain aneurysm.
But for Angela Leary and her family, the worst turned out to be something else entirely. Something that made the aneurysm, as their doctor told them, "the least of her worries."
The short and simple is that 69-year-old Leary was diagnosed recently with early-stage Alzheimer's disease, and it hit her and her tight-knit family like a ton of bricks.
"The tears and the fear and the terror wash over you," Leary told me as she, her husband, Tom, and their daughter, Cathy Estep, sat down last week for an interview.
They're well aware that some of Leary's constituents think she stepped down abruptly from her second term on Hampton City Council last month because of bad news on the cancer front. But she's squared away there — the cancer is in remission.
Now she wants people to know the real reason. Not to gin up sympathy, but to join the growing cadre of individuals who are stepping forward with their own diagnosis of this degenerative brain disease to erase the stigma and bolster others as they face the same tears and fear and terror.
Last spring, for instance, the University of Tennessee's legendary basketball coach Pat Summitt, 59, got her own diagnosis. In an ABC News 20/20 interview last week, Summitt said she plans to continue coaching for another three years.
In June, Grammy winner Glen Campbell announced his diagnosis. Then the 75-year-old released another album, and embarked on an international singing tour.
They're inspirations for the Leary family as they embark on their own new journey — a road trip they're making on their own terms, punctuating the pathos with humor.
"What was it you called it?" Estep asks her mother, who laughs.
"The Big A," Leary says. "Mad cow disease."
Looking back, Leary says she first noticed subtle changes about a year and a half ago. Along with occasional forgetfulness came a shorter fuse and a new talkativeness. She had trouble sleeping — called "sun-downing" in the Alzheimer's community — and was easily lured by flashing TV and computer screens. She kept calling their elderly border collie by the name of a Dalmatian that had been dead for 15 years.
Like many struggling with such symptoms, Leary tried to hold it together.
It came to a head in March as she was in the ICU recovering from breast cancer surgery. Disorientation after surgery is so common that in the medical field it's called "ICU-itis." But Leary's was so bad that Estep thought her mother was suffering mini-strokes. Leary thought she was being kidnapped. She used language she'd never used before.
"You're going to hell!" she told her daughter at one point.
"I'll save you a seat," Estep responded calmly.
It was an uphill battle for Estep to get the neurological scans and tests to find out what was happening. She called a family member and said, "If they don't find anything, I am screwed — because this is not my mother."
Her voice chokes as she recalls it; her mother takes her hand and squeezes.
The tests ruled out other issues and finally whittled down to one. After the initial shock, Estep sat down at a computer and started Googling "Alzheimer's."
She stumbled across studies linking anesthesia and surgery to a spike in chronic brain diseases. She found a federal HOPE for Alzheimer's Act that, if passed by Congress, would provide Medicare coverage to help diagnose the disease early and increase access to information, care and support.
And she found the Southeastern Virginia Chapter of the Alzheimer's Association, a support group based in Norfolk.
Today, trained specialists can diagnose Alzheimer's 90 percent of the time. Yet an estimated 50 percent to 80 percent of the 5.4 million Americans with the disease have never been formally diagnosed.
The problem is denial and lack of awareness. If you suspect someone has a cognitive disorder, says Gino V. Colombara, executive director of the Norfolk chapter, keep a daily log, be an advocate, "sit down with somebody and say, 'I've noticed something.' Alzheimer's is a family disease. Ms. Leary has all these advocates in her corner. Many people feel very alone in their disease."
Even then, Colombara says, "there's a gap between diagnosis and what-do-you-do-then." The association staffs a 24-hour hotline to help navigate the gap: 1-800-272-3900.
Alzheimer's is the sixth leading cause of death in this country. While the number of deaths from breast cancer, prostate cancer, heart disease, stroke and HIV decreased between 2000 and 2008, deaths from Alzheimer's increased by 66 percent.
Research funding for Alzheimer's in 2011 was $450 million — a fraction compared to the $5.8 billion for cancer, $4.3 billion for heart disease and $3 billion for HIV/AIDS.
The association wants more funding for research, and believes enlisting politically experienced people like Leary — and her family — can help get it.
Leary is ready. She's brainstorming how to work her contacts in Washington and with the National League of Cities, which is meeting this week in Phoenix, to push support for the HOPE Act. She envisions speaking to local groups to raise awareness and drum up grassroots support.
Meanwhile, she and her family are learning lifestyle changes to help cope with the disease. They boil down to "try to be a little kinder," says Estep. And, for her mother, calming techniques to control anxiety.
"People hear the word Alzheimer's," says Estep, "and hear —"
" — death sentence," says Leary.
"Death sentence," Estep echoes. "And they're worried and ashamed."
When Leary first heard the word, she says, "It took my breath away to the point where I could not say it. I've only been able to say it in the last few weeks, because it's a word I'm going to have to live with.
"I'm not dying from Alzheimer's — I'm living with Alzheimer's."
Earlier that day as he dropped by City Hall, her husband got handed a slip of yellow paper with the name and phone number of a 92-year-old woman who wanted to talk about it with Leary.
"And I want to talk about it now," Leary says.
Contact Tamara at 757-247-7892 or email@example.com.