One step at a time
Despite a disorienting inner ear disorder, Jim Hainlen treks on—for himself and others like him
There are people who know Jim Hainlen only as “Andante.”
It’s tradition for hikers to exchange pseudonyms instead of real names, and Hainlen is particularly proud of his alter ego.
Andante is an Italian word found in musical scores, one that lets musicians know it’s time to slow their tempo. Its literal translation is “slow walking speed.”
For the 72-year-old former high school orchestra conductor and University of Minnesota alumnus, the nickname couldn’t be more perfect.
Slowly but surely, Hainlen has hiked more than a thousand miles of the Appalachian Trail in his life (including more than 110 miles in New Hampshire this summer) all by himself. It’s a remarkable feat for anyone—let alone someone with a debilitating disorder. Every step of Hainlen’s journey has been under the cloud of Meniere’s disease, an inner ear illness that, at its worst, causes hearing loss, ringing ears, and dizziness so disorienting it makes walking nearly impossible.
“It feels like your eyes are bouncing around in your head,” he says. “You don’t know where your foot is going to land.”
And yet, the disease hasn’t stopped Hainlen from pushing forward. With the support of his M Health Fairview care team and an unlimited supply of what he calls “trail persistence,” Hainlen has learned to thrive alongside his diagnosis, not just for himself, but for others, too.
‘I thought everyone had it’
As a child, Hainlen first noticed his dizziness when he tried to ride a unicycle. His four brothers had no issue mastering the single-wheel machine, but Hainlen struggled.
He could travel straight, but every time he tried to turn, he’d fall over. He got older and pursued diving in high school, a sport he loved—until he tried twisting in midair.
“I had a mini blackout in the air,” Hainlen recalls. “I came to and the water seemed to be rushing at me, like I was moving sideways through the air or like the water had changed position and was no longer under me. I had dizziness growing up, but at that time, I thought everyone had it.”
It wasn’t until he was an adult that he sought help. One night, while making spaghetti during a volunteer shift at his church, Hainlen nearly fell into a vat of boiling water—until a nearby friend pushed him away.
As luck would have it, one of the volunteers at the church that night was a nurse who worked with Michael Paparella, M.D., an internationally recognized ear, nose, and throat expert at the University of Minnesota Medical School who has since retired. She advised Hainlen to visit Paparella immediately.
In addition to his dizziness, Hainlen was experiencing worsening hearing loss and a ringing in his ears (known as tinnitus; read more). Paparella identified the cause as Meniere’s disease.
Naming the problem
Before he met with Paparella, Hainlen still wasn’t sure anything was actually wrong with him. But the Meniere’s diagnosis changed that. It gave a name to the things he’d experienced, an empowering certainty in a life that, to that point, had been filled with self-doubt.
Meniere’s occurs when a person’s inner ear fills with too much fluid. Experts are unsure why that happens, but it’s thought to be the result of several factors, including prior infections, genetics, and anatomic abnormalities. Paparella inserted a shunt in Hainlen’s inner ear, which helped the fluid drain more easily.
That was in 2001. Hainlen’s symptoms stopped getting worse, a welcome respite that gave him the upper hand on his disease and allowed him to take control of his life once again.
Meredith Adams, M.D., M.S., specializes in treating vestibular disorders like Meniere’s at the M Health Fairview Clinics and Surgery Center. She says symptoms are often triggered by external factors, like excess sodium in the diet, stress, or, for people like Hainlen, shifting barometric pressure that accompanies weather changes.
Identifying those triggers—and making lifestyle changes to mitigate them—is the first step toward finding some relief, she says.
But finding universally effective solutions for a disease with such disparate causes remains elusive. In the 20 years since Hainlen’s treatment, new therapies have emerged to help people manage their condition. Adams, who is also an associate professor in the Medical School’s Department of Otolaryngology, says targeted steroid injections to the inner ear can help control dizziness, while cochlear implant advances allow patients with single-sided deafness to regain some hearing.
Despite today’s treatments, many patients, including Hainlen, still suffer from bouts of dizziness, hearing loss, and tinnitus. Without a reliable remedy for their symptoms, many people with vestibular disorders can start to feel hopeless, Adams says.
“I think the natural inkling can be to turn inward, which can be a depressing and isolating experience,” she says.
Creating a community
Hainlen agrees, and says the mental toll of a vestibular diagnosis is arguably as significant as the physical one.
His antidote to negative thoughts is the great outdoors. Meniere’s is ever-present when he’s traversing trails across the country—“Any time I get dizzy while hiking, I’ll set up my tent and go to sleep,” he says reassuringly—but hiking is a meditative experience, a welcome opportunity to get lost in thought.
Several years ago, while hiking through the woods of Pennsylvania, he had an idea: Why not create a community for people with vestibular disorders to connect, exchange stories, and find strength in their shared experiences?
He returned to Minnesota ready to bring his idea to life. He connected with Bevan Yueh, M.D., M.P.H., former chair of the Department of Otolaryngology, who had previously arranged a conference for head and neck cancer survivors. Then Hainlen got to work raising money for a similar event for people who have vestibular disorders.
In 2018, Hainlen welcomed more than 100 people affected by vestibular disorders to the University of Minnesota for an all-day conference. They learned about the latest treatments and research from U experts and had a chance to connect with one another.
“People came up to me in tears,” Hainlen says. “For so many people, including me, when they find out others have the same disease, they go, ‘Oh, I thought I was all alone.’ But they’re not.”
In the years since, Hainlen has returned to the Appalachian Trail each summer, posting updates on social media about his journey and encouraging people to donate in support of the conference and research efforts at the U.
Adams says philanthropic support for vestibular disorder research could accelerate exciting ideas already taking shape, including the creation of the world’s first auditory nerve implant, which could improve hearing in hard-to-treat cases of Meniere’s disease.
From Hainlen’s perspective, anything he can do to make life easier for others who have vestibular disorders is a step in the right direction.
“When things get really hard, you’ve got to be persistent,” he says. “Just keep putting one foot in front of the other.”