Faced with a debilitating disease, an Anchorage woman attends her own celebration of life

For most of her 57 years, Sherri Hadley has lived a fiercely independent life.

Born in Ohio, she moved to Alaska after college to work as a civil engineer and to pursue her love of old-time fiddle music, playing in bands with names like Muskeg Sally. She kayaked Alaska rivers and even moved to Saipan, a tiny island in the South Pacific, for a job. She's been in charge of major civil infrastructure projects for the Alaska Native Tribal Health Consortium, the Tanana Chiefs Conference and the National Park Service.

But a few years ago, Hadley started falling down, for no apparent reason. She was eventually diagnosed with progressive supranuclear palsy, a rare and fatal brain disorder that diminishes control of walking, balance, speech, swallowing, vision, moods, behavior and thinking. Progressive supranuclear palsy has similarities to Parkinson's disease but tends to progress much more quickly.

By August of last year, Hadley was no longer able to live alone. She moved in with Jan Myers, a fellow old-time fiddler who'd played with her in the bands Muskeg Sally and the My Home Upholstery String Band.

But as Hadley's needs became more intense, Myers realized she couldn't be her friend's sole caregiver. In January, it was time for Hadley to move into an assisted-living home. Like many who make the move to assisted living, Hadley feared isolation, her friends said.

That's when about 20 of those friends, from every corner of Hadley's life, stepped in to form a group devoted to offering companionship and care to keep their friend's quality of life as high as possible. Some knew Hadley from music circles, other from church or dance or book club.

Using a method popularized in the book "Share the Care," they set up an online schedule, where members can check in to offer rides to activities, meals or other forms of help. They call themselves the "Glacial Erratics," after Hadley's email address.

Every week, someone takes Hadley to the Unitarian Universalist Fellowship for services. Another accompanies her to a regular fiddle jam session on Thursday nights at Guido's Pizza on International Airport Road. Her book club meets at the Marietta House once a month. Jam sessions are held there too.

"We've seen the opposite of the spectrum where grandma and grandpa get dropped off and we're the only social contact they get," said Alex Lommel, the co-owner of the Marietta House assisted-living home, where Hadley now lives. "Juxtaposed with this, well, it just shows what's possible."

The coordinated caregiving approach has also allowed the women to go back to being Hadley's friends, rather than caregivers, said Myers.

On a recent Wednesday afternoon, Judy Judge, a retired substance-abuse counselor, pulled her Subaru up to the Marietta House. With the help of a nursing assistant, she got Hadley into the car and to a yoga class for people with Parkinson's disease and other movement disorders.

"When I pick her up from yoga, she's just glowing," said Judge, who knew Hadley through the contra- and square-dance scene. "It's not even just the yoga; it's the people in the group."

But the friends notice the changes in Hadley.

It's becoming hard for her to speak much more than one or two words, and she at times seems unable to get out what she wants to say. Walking unassisted is difficult.

When it became clear this summer that Hadley's illness was quickly worsening, the members of her book club had a frank discussion: What kind of memorial service would Sherri want to have? What about having a party to celebrate her life while she was around to enjoy it?

Yes, Hadley said. She wanted to be there.

So the book club decided to throw a celebration of life Hadley could attend.

The party happened in the Swing Bar at Chilkoot Charlie's, on a Sunday afternoon in September. Close to 150 people showed up — fiddlers even flew in from Nome and Juneau. The members of the yoga class came, and folks from church, from a Parkinson's support group, former co-workers. There were Bloody Marys and plates of homemade brownies and salmon, potluck style. Most of all, there was music.

"It may have been the biggest old-time fiddle jam in the history of Anchorage," said Denise Martin.

The jam went on and on, with people still playing hours after the event was supposed to end. With her fiddle in hand, Hadley sat in her wheelchair and played, her friends keeping her at the center of it all.