Carol, 76, just returned from a cross-country trip — visiting her newest grandchild, catching up with friends, doing some sightseeing along the way. For most people, that would be the story. For Carol, it’s just the latest chapter in a life built around movement — one she almost lost.
“I’ve been active my whole life,” says Carol, 76. Hiking, cycling, spin classes, light weight training, walking — “it was lots of different things.” She and her husband even walked the famous Camino trail in Spain. Staying active wasn’t a habit for Carol. It was a calling.
Which made the slow unraveling of her health all the more confusing.
“I’d been in decline a couple of years before the diagnosis and didn’t know why,” she says. “I kept thinking, I’m just getting old. And that wasn’t it.”
She was eventually diagnosed with Cushing’s disease, a condition that affects about 10 to 15 people per million each year. A tumor in the pituitary gland triggers the adrenal glands to overproduce cortisol, the body’s primary stress hormone. The result is a body locked in a state of chronic fight-or-flight, with widespread inflammation and symptoms that can look a lot like ordinary aging: unexplained weight gain, muscle weakness, fatigue, and thinning of the arms and legs.
Diagnosis is often delayed because the changes can happen slowly, and patients are frequently misdiagnosed for years. Carol says she was the poster child — she had every symptom on the list.
Treatment required brain surgery to remove the benign tumor from her brain. Cushing’s also breaks down muscles, bones, and tendons, which means Carol now faces an ongoing process of rebuilding — physically and otherwise.
“My recovery is very much ongoing,” she says. “There’s always a lot of questions.”
But Carol knows this: She wants to keep moving, no matter what.
Throughout her decline, she kept exercising with Pilates, water aerobics, walking and physical therapy. She believed it would help slow whatever was happening to her, and she’s convinced it did. “Had I given up, I probably would not have survived it,” she says. “I keep fighting and don’t give up.”
Today she walks at least 30 minutes a day, sometimes without her urban hiking poles. She’s retraining muscles and accepting limits.
Why does she keep going?
“Because it makes me feel good to be able to live and do things,” she says, even something as simple as chopping vegetables, which had become impossible. “I can stand up pain free. I was hurting all the time.”
Her mother is 103. Her father lived into his 90s. “We have a lot of longevity,” she says. “A lot of reasons to keep going.”
Her advice to anyone navigating their own limitations: “Work within your limitations. Don’t let your limitations stop you.”
Carol doesn’t. Not for a minute.
Holly Kouvo is a personal trainer, functional aging specialist, senior fitness specialist, brain health trainer, writer, and speaker.