By understanding the diversity and heterogeneity of Parkinson’s disease (PD), researchers can have a more holistic view on the underlying biology of the disease and inch us closer to a cure for all people with Parkinson’s regardless of race, age, ethnicity or gender.
This March, in celebration of Women’s History Month, The Michael J. Fox Foundation (MJFF) is sharing stories from women in our community including the experiences of people with Parkinson’s, care partners, researchers and advocates who continuously impact and shape advancements across Parkinson’s research and care.
Sharing the stories of community members and building relationships with lawmakers on Capitol Hill are important strategies to accelerate new treatments and a cure. Parkinson’s advocate Kerry Howard from Juneau, Alaska has been living with PD for over six years. Since 2018, Kerry has joined community members across the country during MJFF’s Parkinson’s Policy Forum and has used her voice to share her experience with lawmakers and how they can use their votes to support critical Parkinson’s policy priorities. Kerry shares how a woman’s role in advocacy is impactful and shapes these important conversations with our nation’s leaders:
“Often I think people associate Parkinson’s disease with men more than women. It’s wonderful to connect with other women through events like the Parkinson’s Policy Forum and see what they bring to the experience. There’s definitely an emotional part to the disease that I can see more often expressed by women than men. To be able to share the facts and statistics with lawmakers is one thing, but to bring that human bent and emotion to advocacy is another.”
People with Parkinson’s understand that a care team extends beyond just clinicians and movement disorder specialists — care partners such as adult children can often play a major role. MJFF Patient Council co-chair Soania Mathur, MD, who was diagnosed with young-onset PD at age 27, is a retired family physician, wife and mother of three daughters living outside of Toronto, Ontario. Soania’s daughter Neha Mathur who’s studying human biology as an undergraduate at the University of Toronto is seeking to follow her mother’s footsteps by going to medical school. Neha shares advice on how she approaches care and support for her mom:
“When my sisters and I were younger, we often were more aware of the physical aspects of Parkinson’s and wanted to jump in right away and take on tasks and responsibilities from our mom like washing the dishes. Today, we have more in-depth discussions on how to support my mom emotionally through her journey. Now we understand when our mom needs to complete a task. We can acknowledge that Parkinson’s has taken away many things from her life — more than we want — but not everything and she can do these tasks.”
Lacing up in honor of her father who lived with Parkinson’s for over 25 years, Team Fox supporter and 2019 NYC Marathon runner Dilcia Lewis of New Jersey hasn’t let the pandemic get in the way of fundraising for a cure. Through Dilcia’s loving memory of her father and motivation to run for a cure she has raised over $10,000 to date for Parkinson’s research and has a new goal this year to run/walk 1,000 miles for Team Fox. Dilcia shares how it’s encouraging her daughters to continue the legacy:
“Running was how I grieved — I would hit the pavement and run for miles — I laughed, I prayed, I’d cry, but it was a way to connect and remember my dad. Being able to run the NYC Marathon, achieve my fundraising goal and have my daughters there was important to me. Today, I see the younger generation stepping up. My oldest daughter who’s 16 and a girl scout is preparing to raise awareness for Team Fox and it’s incredible to see how she’s taking next steps after seeing me.”
Roseanne Dobkin, PhD, professor of psychiatry at Rutgers University Robert Wood Johnson Medical School and a recent MJFF webinar panelist on “Moving with Mood Changes in Parkinson’s,” specializes her research on non-motor symptoms of PD — notably mental health — which she says often go untreated. With the pandemic in focus, Dr. Dobkin shares the importance of practicing mindfulness in our everyday lives whether we’re living with Parkinson’s or not:
“The pandemic has highlighted the need for better understanding and care of everyone’s mental health. There are things we can do like taking the time to check in on friends and loved ones. Instead of asking my patients ‘How are you doing?’ — I pose a question like, ‘Is your mood as good as you’d like it to be?,’ which may provide additional insight on how we’re feeling.”
Throughout Women’s History Month and beyond, MJFF celebrates the experiences of our diverse community.
Join us on MJFF’s Facebook, Twitter, LinkedIn and Instagram channels or email us at firstname.lastname@example.org to share your story on navigating life with Parkinson’s to help support others on the journey.
Alaska Advocate Kerry Howard with Senator Lisa Murkowski (R-AK) at the 2019 Parkinson's Policy Forum.
MJFF Patient Council co-chair Soania Mathur, MD, alongside her daughter Neha Mathur.
Team Fox supporter and 2019 NYC Marathon runner Dilcia Lewis of New Jersey alongside her late father who lived with Parkinson’s for over 25 years.
Roseanne Dobkin, PhD, professor of psychiatry at Rutgers University Robert Wood Johnson Medical School.