Vancouver woman battles early-onset Parkinson's

Saturday fundraiser benefits those with disease

By Marissa Harshman, Columbian health reporter


photo"When the medicine is working, people look at me, I look normal. But when it's out, it's completely different." Akemi Noll, who has early-onset Parkinson's disease

(/The Columbian)

Akemi Noll lives her life in three-hour periods.

If you go

• What: Sole Support for Parkinson’s walk. Benefits Parkinson’s Resources of Oregon and Southwest Washington, which provides programs and support services for people with Parkinson’s disease.

• When: 1:30 p.m. Saturday, Sept. 15.

• Where: Esther Short Park, 610 Esther St.

• Cost: $20 per walker.

• Information, register at the organization's website.

That's all the 46-year-old can manage. Parkinson's disease has made sure of that.

Five times a day, Noll takes medication for the disease — medication that provides the Vancouver woman with three-hour windows of manageable symptoms.

When the medication begins to wane, and before the next dose kicks in, Noll is incapable of much physical activity. Her body feels weak, even a cello bow feels too heavy to hold. The tremors make it difficult to move in any meaningful way.

"When the medicine is working, people look at me, I look normal," she said. "But when it's out, it's completely different."

Parkinson's disease is a neurological disease that leads to tremors and difficulty with walking, movement and coordination. Parkinson's progresses slowly in most people; currently, there is no cure for the disease.

Noll was diagnosed with early- or young-onset Parkinson's just before her 40th birthday. Only about 10 percent of people with Parkinson's are 40 or younger, according to the National Parkinson Foundation.

For the first two years, Noll tried natural healing methods. When they failed to produce great results, she started taking medications to manage her progressive symptoms. But the medication was inhibited by protein. So, for about two years, Noll cut protein out of her diet. The result was lost muscle tone and strength.

She's now staying temporarily at Vancouver's Quarry Senior Living, which offers a dedicated Parkinson's assisted-living unit. While there, Noll is working with a physical therapist to regain her strength. She's also spending time interacting with others to improve her emotional well-being.

Finding support

At times, Noll's frustration with her body's limitations causes her to dissolve into tears. The once active woman who walked her dogs daily can no longer set out on 2-mile treks.

"It's kinda hard," Noll said. "The physical is hard, but more emotional."

People with early-onset Parkinson's, in particular, often struggle with the realization that their bodies aren't capable of doing what they once were, said Maria Jokela, the facilitator of the Quarry's Parkinson's support group. People with early-onset are diagnosed before the age of 50. Whereas the average age for a Parkinson's diagnosis is 62, an age when most bodies are already beginning to slow down, she said.

Those feelings are what make attending support groups, fitness classes and other activities with people who have Parkinson's important, Jokela said. Without those interactions, people with Parkinson's, especially younger people with the disease, can feel like nobody understands what they're going through, she said.

For the first time this weekend, Parkinson's Resources of Oregon and Southwest Washington will host a Sole Support for Parkinson's walk in Vancouver. The walk not only gives people with the disease a chance to interact with each other, it also raises money for programs and support services for people with Parkinson's, Jokela said.

Noll isn't quite ready to take on the event's 5K or 1K walks, but she hasn't allowed the disease to prevent her from trying new things.

About a year ago, Noll started baking. Her first attempt was an apple pie. Now, she prepares cakes topped with intricate chocolate decorations — swirls, roses and bird's nests.

Then, about four months ago, Noll picked up a cello for the first time. She struggles to get her fingers to move along the neck of the instrument and when her medication begins to wear off, the heavy instrument becomes too much to manage. But Noll refuses to stop practicing.

Even if she can only do it in three-hour windows.