My PD Story

“My commitment to raising Parkinson’s disease (PD) awareness is not just because I have the disease; it’s because of the growing number of people living with PD. We have to get this on people’s radar and reverse that upward trend,” said Kathleen (Kathy) Blake, MD, MPH, a retired physician who serves as vice chair of the Parkinson's Foundation People with Parkinson's Advisory Council. One way she helps raise PD awareness is by telling her story.   

Like many people, Kathy’s diagnosis was delayed. When she began noticing pain and reduced swinging of her left arm, she attributed these early symptoms to arthritis and aging. She experienced symptoms for five years before she received her diagnosis, seven years ago. 

Kathy’s diagnosis story begins when an astute newly minted physical therapist referred her to the movement disorders specialist who diagnosed her with Parkinson’s. After her neurologist said, “You have Parkinson's,” Kathy’s first question was, “How sure are you that it’s Parkinson's?” After reading everything she could about PD, Kathy was convinced that the diagnosis was correct.  

An initial course of physical therapy and a regular program of exercise changed everything. “If I exercise today, I will feel better tomorrow,” Kathy said. “If I don’t exercise, the stiffness is worse the next day. Another benefit of exercise has been the chance to meet so many other people who are dealing with Parkinson's and their caregivers, a huge boost for my spirits and my husband’s.” Five years ago, Kathy began PD medication because she needed more than exercise to help manage her symptoms.  

Her expanded support and care team is now comprised of family members, physicians, physical therapists, personal trainers, Pilates instructors and the Parkinson’s Foundation. She credits her team with keeping her moving, engaged and optimistic. 

Path to PD Research  

It took four years before Kathy was ready to publicly share her diagnosis. Today, she realizes that one consequence of hiding the disease is that most people only associate PD with its advanced stages. “People with Parkinson’s can have full and rewarding professional and personal lives, with and despite PD. Many of us are working alongside people with Parkinson’s, living next door to them, seeing them at the store, or volunteering with them. I want people’s impression of PD to be less restricted and more accurate.”  

Reflecting on her experience, Kathy wishes she had participated in PD research sooner. With new PD therapies always on the horizon, many pharmaceutical companies and researchers recruit participants who are in the early stages of PD. “I missed that chance. Because I didn’t talk about my PD for years, I lost that window of opportunity,” she said. 

Eventually, Kathy found her way to the Parkinson’s Foundation. She participates in the Foundation’s genetics study, PD GENEration: Mapping the Future of Parkinson’s. Kathy is one of the more than 20,000 people enrolled in the study thus far who have received a genetic test and counseling session at no cost, to learn whether she has a genetic tie to PD. 

Advice for People with Parkinson’s 

The Foundation’s website Parkinson.org consistently delivers a trove of reliable information to Kathy and her family. It is her go-to recommended resource for anyone new to Parkinson’s. “The website is full of information, not just for the person living with Parkinson's, but also for their families, scientists and physicians. Once you discover all this information, it’s easy to feel overwhelmed. It’s important to know that you don’t have to consume and incorporate all of it into your life right away. You have time,” Kathy said. In her case, once she found the website, Kathy focused on exercise and medication.  

Kathy’s advice for people who have been living with PD for many years, like herself, is to be adaptable.  “Expect that how you take care of yourself will change over time. When that happens, don’t assume there isn’t something new that can help you, because increasingly, there is.” 

Kathy’s medical background gives her a unique point of view for helping people with PD communicate with their care team.  

“As a doctor, when you stand up and prepare to leave the exam room, that’s often when your patient asks their most important question, the one they’ve been afraid to ask. To overcome this, write down your top three concerns before your appointment,  whatever keeps you up at night, because they are what needs to be addressed.” – Kathy  

From her many years of practicing medicine, Kathy knows that many people are dissatisfied with the medical system. “People and doctors feel they don’t have the time they need with each other. This makes it even more important to prioritize your questions — and ideally have a family member or caregiver with you as a second set of ears to hear the answers.” 

Resist Isolating 

“Resist the impulse to isolate,” is what Kathy tells those who are learning how to manage PD symptoms. “Hopefully, once you come out of your shell, you can get involved in things like the Parkinson’s Foundation, Moving Day or Parkinson’s Revolution; Volunteering puts wind in your sails. Energy is generated by connectedness.” 

Volunteering has opened a new world to Kathy. “Parkinson’s is a club, that given the choice, we would not belong to it. That said, having PD has introduced me to an amazing cohort of people,” she said of her many volunteer engagements. 

“I applied to serve on the advisory council because a former member told me, ‘The Foundation staff and leadership really wants to hear from you; they listen, modify, and improve their programs based on what you say.’ I thought, I can help now; maybe five or 10 years from now I won't have the capacity. This is what I care about, and I’m doing it now,” Kathy said. 

There are many ways you can help us spread Parkinson’s Awareness right now. Visit our Parkinson’s Awareness Month page to find what works for you!