The Power is in Our Hands - Karen's Story - PMD Alliance

When Karen Malkin got married, she switched from Wall Street to teaching. “I thought it’d be a quieter career,” she said, laughing. Turns out, teaching elementary school science is no quiet gig. But she loved it.

For years, she traveled from her home in New Jersey to Brooklyn, where she taught, leaving at 5am and getting home late to make the daily 92-mile journey. At the time, she was also caring for her two children and her elderly parents, doing for everyone but herself.

Until 2017. She dropped expensive wine glasses and knew it was more than the occasional accident. “I thought something was wrong,” she said, and went to her primary care doctor. The doctor brushed her off: “You’re just very stressed,” the doctor said. Karen trusted her instincts and kept pushing. She went to a series of doctors, including one who suspected Parkinson’s, saying abruptly, “It’ll be okay for the next year or two, then it’ll get bad. Come back and see me when it gets bad.”

It took eight more movement disorder specialists for Karen to confirm the Parkinson’s diagnosis. She left teaching and made a decision: “From that moment on, it was going to be my job to keep myself as well as I could be. I was going to be captain of my sinking ship and I was going to make it sailable.”

Dopamine Hits of Success

Karen’s first steps into becoming captain of her own ship began when she found Laurie Mischley, ND, MPH, PhD(c). Dr. Mischley is a researcher and naturopathic physician specializing in PD in Seattle, WA, who describes herself as a “resource for the unconventional,” someone who is willing to “think outside the box” alongside the people with Parkinson’s that she serves.

“Dr. Mischley is the best thing that has ever happened to me,” Karen says. “I consider her my team captain.” Reading Dr. Mischley’s book, Natural Therapies for Parkinson’s Disease, led her down a powerful and unexpected rabbit hole. She started exploring all aspects of healing and disease management, in body, mind, and spirit.

Around the time she discovered Dr. Mischley, she started listening to PMD Alliance’s wHolistic series with Indu Subramanian, MD. When Dr. Subramanian interviewed Dr. Mischley, it sparked her interest. “Now, I’m a big fan of PMD Alliance,” Karen said. Today, Karen frequently tunes in to PMD Alliance’s programs to learn and get empowered on her PD journey.

Karen has now poured herself into tending to her own wellbeing, which she maintains with a regular schedule. Meditation and coffee every morning at 7:30am; time to read till 9:30am; exercise at 10:30am; and time to tune into a PMD Alliance webinar or support group at 3:00pm. “I check off everything I do along the way, like a little dopamine hit of success. You’ve got to cheer yourself on!”

Stepping into the Role of Advocate

Last year, Karen saw an announcement for PMD Alliance’s ALL IN! Summit, a national, in-person gathering of support group leaders and allies from around the country, convening prospective leaders, newbies, and veterans to connect, collaborate, and embrace the magic that happens when we come together to learn. “When I heard about it, I knew I wanted to attend.” Karen had her daily routine in place, her exercise, her PD education; she said, “The only thing left I wanted to do more of was give back.”

Karen went to the conference, “met so many amazing people,” and knew she wanted to dive in deeper. A few months later, she signed up as a PMD Alliance Ambassador. She was committed to supporting others on this journey: “supporting them means supporting me,” she said. We help each other.

Being Brave

These days, when Karen gives a talk on Parkinson’s, she titles it, “Be Brave.” To her, this means that, “Whatever illness you’re facing, you can become your own advocate. You can educate yourself. You’ll discover you can do more than you think you can.”

Karen describes her transformation since PD like a revelation. It is not easy or asked for, but she is making the most of this new season in her life. “I used to hate exercising. I still do,” she laughed. “But I do it every single day. I do yoga, Total Parkinson’s, Power for Parkinson’s, laughter yoga, and Dance for PD®.” She feels a sense of carpe diem. “Let me make the most of my life. If someone said to me, ‘You’re going to do drumming on Friday afternoons and love it,’ I would have said, ‘What?’”

She’s exploring plant-based meals with chefs she’s found online. “I was the king of eating a bag of Ruffles on my way home,” she laughed, adding that she would hide the evidence of the chips before she got in the house each night, but now she eats plant-based meals five to seven nights a week. “The time is now,” she said, “because you don’t know what tomorrow will bring.”

The Power is in Our Hands

To continue to uplift the Parkinson’s community, Karen has organized a Share a Plate for Parkinson’s and Sip & Shop for Parkinson’s fundraiser with local clothing stores and restaurants that will benefit PMD Alliance.

“PMD Alliance has really made a difference in my life. They have amazing speakers.” And she loves that she can access the information she needs, anytime, anywhere, at the click of a button. “Any topic I’m interested in, I can go to the on-demand library and find it.”

But, for Karen, it’s not only about raising money for PMD Alliance; it’s about raising Parkinson’s awareness. “By 2040,” she said, “they predict it’s going to be a pandemic. More than ever, we’re going to need organizations like PMD Alliance to disseminate information and connect people.” She insists that the biggest change will come from the people impacted by Parkinson’s themselves. “It’s the people [living or loving someone with it] who are going to effect the most change. The power is in their hands.”

Returning to Her Roots

Karen often says that when she left teaching, caring for herself became her number one job. But you can’t take teaching out of her. “My wish for everybody is: Don’t be afraid to experiment with yourself. Maybe it’s the science teacher in me. I see myself as one big science experiment. I learn and explore: how can I be a better sleeper? Or what creative therapies can I add into my schedule? Is drumming going to be really good or should I stick with OT?” You don’t know till you try.

Karen’s advice: seize the moment. Step out and try.

Help the helpers

PMD Alliance educates, empowers, and connects the Parkinson’s and movement disorders community, uplifting the lived experience and passion of ambassadors like Karen. We walk alongside local leaders, ensuring that every gift to serve the PMD community has national reach and community driven, local impacts.

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