When Karen Malkin and I caught up for a phone call, she was sitting in her car in a New Jersey parking lot, early for spin class. This didn’t surprise me. Since I met Karen a few years ago, what defines her to me is her relentlessness. A former science teacher, in the face of her Parkinson’s diagnosis, Karen became relentlessly curious. She sought out multiple doctors in different fields (she currently works with not one, but two, movement disorder specialists, a naturopath, and a physical therapist). She sought out alternative therapies, support groups, and, yes, exercise. “I used to hate exercising,” she told me a couple years ago. “I still do,” she added, laughing. ”But I do it every single day.”
In other words, Karen is a relentless seeker, exploring as many tools as she can to support her on her Parkinson’s journey. When she discovered MY PD-CARE, a resource designed to help people with Parkinson’s track changes in their symptoms and make it easier to communicate these changes with their healthcare providers, she knew she had found something worthy of adding to her toolbelt.
Karen, who’s now a support group leader, PMD Ambassador, and MY PD-CARE Advocate, often has advice for people newly diagnosed with movement disorders. “It may sound crazy,” she said to me, “but when I talk to support groups, I always tell them to wear slip-on shoes to doctors’ appointments.” She reasons that a person with Parkinson’s, who only gets to meet with their movement disorder specialist for a short visit every 6 months, if they’re lucky, may get flustered in the appointment. And when the doctor inevitably asks them to take off their shoes, it may, as she said, “take 6 minutes just to get them off. That’s a waste of 6 minutes.” In other words, efficiency matters. For Karen, the power of the MY PD-CARE tool is its efficiency.
MY PD-CARE is a questionnaire available both online or as a printable PDF that allows people with Parkinson’s to track their symptoms—and to easily share these results with their healthcare providers. Karen, for example, fills out the questionnaire once a month. When she has a doctor’s appointment, whether it’s with her movement disorder specialist, primary care doctor, or physical therapist, she either sends the questionnaire to her providers ahead of time or comes in early and asks the receptionist to include it in her file.
“What I like about MY PD-CARE,” she said, “is you can actually see the change in symptoms if there is a change. You can notice it. And then your doctor can go deeper: Why is your sleep changing? Why are you tremoring more?” And, most importantly, what can we do about it to address it and improve your quality of life?
You may be wondering: Can’t a provider do that without a questionnaire? Maybe, but Karen has seen firsthand how a lot can get missed if there isn’t a tool to focus the conversation and track all changes over time. In fact, because Parkinson’s affects a wide range of symptoms, motor and nonmotor, and impacts each person differently and at different stages of their disease, it can be challenging for people with the disease and their care partners to describe and track all their symptoms without a tool designed specifically to meet these needs.
Karen explained that the overwhelming range of symptoms can also make it easy for something to slip through the cracks. “The person with Parkinson’s may not remember,” she said. “Maybe that’s because of brain fog or memory issues associated with the disease. Or simply because it’s not fresh in their mind.” She describes the common experience of being nervous at a doctor’s visit and only remembering the most recent and pressing symptoms: ‘My sleep was terrible last night, my balance is terrible.’ For her personally, that means that other issues get lost or pushed to the back burner. “I tend to forget that I have neuropathy in my toes,” she said. “But because I tracked it, my doctor was able to say, ‘Let’s try this supplement, let’s try this medication. It hasn’t totally gone away, but it’s lessened, which is great.’” Regular tracking makes it easier for the person with Parkinson’s to advocate for themselves. And it makes it easier for their provider who, she believes, “often wants to be as impactful and supportive as they can,” to truly address their patient’s needs.
It’s not just the people living with Parkinson’s that Karen believes need to know about this tool; it’s their providers, too. Despite the number of people with Parkinson’s exploding, it can still take years to get a proper diagnosis. The burden often rests on primary care providers to recognize the symptoms early and recommend a specialist. But that’s easier said than done. By sharing the MY PD-CARE tool with primary care providers, she’s hoping it’ll enable them to recognize the grouping of symptoms most closely linked to Parkinson’s disease. The next time a patient comes in with a gait that’s slightly off, shoulder pain, and anxiety, let’s say, instead of seeing these things as unconnected symptoms, a lightbulb will go off in the provider’s mind: these symptoms may be linked. Karen’s own primary care provider has begun to do this with his patients. If he has an inkling a patient may have a movement disorder, he gives them the MY PD-CARE questionnaire and asks them to begin tracking their symptoms. In the past few months since using the tool, he has referred two patients to a movement disorder specialist, both of whom then received a proper Parkinson’s diagnosis. The sooner the diagnosis, the sooner people can get the care they need. Karen says, “I consider that an amazing feat.”
Today, when Karen gives a talk to people with Parkinson’s, she often 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.” With MY PD-CARE, Karen and people like her are helping themselves take some power back from their disease, giving them the reigns to focus their conversations with their providers so their needs are addressed. For Karen, this means more opportunities to live well, more chances to seize the day. “The time is now,” she said. “No matter what, let me make the most of my life.”
