Living with Parkinson’s disease is a journey filled with uncertainty, adaptation, and resilience. Beyond the physical challenges, one of the most profound struggles is communication—both in terms of explaining symptoms to others and in navigating personal relationships.
During the BGF Lunch and Learn on February 3, 2025, members of the Brian Grant Foundation’s Program Advisory Council shared their experiences, frustrations, and strategies for effectively communicating about their condition. Their insights offer a roadmap for others facing similar challenges.
1. Explaining Parkinson’s to Others
For many, explaining Parkinson’s to others can be an uphill battle. The symptoms are unpredictable, sometimes invisible, and widely misunderstood.
“People don’t understand why I need to follow a strict medication and meal schedule,” shared Caren Masem. “I try to explain, but they don’t see what happens when my meds wear off.”
Dan Garratt echoed the need for constant education: “Everyone progresses at their own rate. It’s a weird disease that doesn’t follow a script.”
Jay Freyensee offered a practical approach: “I’ve just learned to repeat myself, but in a calm voice. It’s better than letting it turn into a heated discussion.”
Tips for Explaining Parkinson’s: • Use simple, direct explanations. • Share key facts that are important to the moment, like: “Parkinson’s is a degenerative disease of the nervous system and I need to take my medications on time with a meal.” • Acknowledge that many people don’t understand Parkinson’s and be patient.
2. Setting Realistic Expectations Setting realistic expectations—for yourself and others—can reduce frustration and promote understanding.
Marlene Kendrick shared how she breaks tasks into manageable pieces. “Instead of four hours in the garden, I do two in the morning and two in the afternoon.”
Caren Masem spoke about social plans: “I tell people ahead of time—if I’m not feeling well, I might cancel last minute. I’ll just call and say, ‘I’m feeling really crummy.’”
Michelle Garratt and her husband even developed a “password” to discreetly signal when it’s time to leave an event. “I didn’t want to make a big scene, so when I say the word, he knows to help me get up and out.”
Tips for Setting Expectations: • Communicate expectations clearly ahead of time. • Set boundaries that prioritize your well-being. • Plan social outings with flexibility in mind.
3. Learning to Ask for Help One of the hardest aspects of living with Parkinson’s is accepting that asking for help isn’t a sign of weakness—it’s a form of strength.
Sharon Kishner spoke candidly about transportation struggles. “I don’t drive anymore, and sometimes it’s hard to ask for rides.” Her solution? Building a support network that includes people who can drive her places. “I don’t have all the answers yet, but I know I need to reach out more.”
Similarly, Marlene Kendrick admitted, “I still want to do everything myself, but I’m learning to accept help when it’s offered.”
Tips for Accepting Help: • Identify trusted people who can assist with specific tasks. • Be clear about what kind of help you need. • Remind yourself that asking for help is part of self-care.
4. Handling Awkward or Insensitive Comments Living with Parkinson’s often means encountering awkward or insensitive comments. Participants shared how they’ve learned to respond with grace and clarity.
“You look great!” is a common, yet frustrating, remark. “People don’t see the two hours it took me to get ready,” said Lynn Hubert.
Michelle Garratt recalled an uncomfortable moment when a stranger hugged her and cried about losing a relative to Parkinson’s. “I didn’t know what to say,” she admitted.
Others shared challenges with using handicap parking spots. “Someone left a note on my windshield saying I wasn’t disabled,” said Sharon Kishner. “I was so mad, but I had no recourse.”
Tips for Managing Social Challenges: • Prepare responses for common questions or comments. • Educate others when appropriate, but don’t feel obligated to explain everything. • Prioritize your comfort and well-being.
5. Balancing Independence and Support in Relationships Family dynamics often shift after a Parkinson’s diagnosis. Some loved ones become overly protective, while others struggle to adjust to new realities.
“My husband forgets that I can’t do what I used to,” shared Caren Masem. “I have to remind him that I need help sometimes.”
Cathie Baker faced the opposite challenge: “My husband didn’t want me to do anything. I had to bring him to my doctor’s appointment so she could tell him I wasn’t fragile.”
For Todd Vogt, maintaining independence is a point of pride. “I still want to climb on the roof to fix things,” he said. “My wife watches—there’s this tension because she wants to protect me, but I don’t want to lose my abilities.”
Steven Stryker added a more personal perspective: “I will hide it (PD symptoms) from my children,” he struggled to share. “My wife will say, ‘They don’t see what you go through,’ and I always tell her I don’t want them to, but I feel guilty, because I’m lying too.”
Tips for Maintaining Balance: • Have honest conversations about what support you need—and what you don’t. • Involve healthcare providers when clarification is needed. • Respect each other’s perspectives while prioritizing safety.
6. Discussing Disease Progression Talking about disease progression can be emotionally challenging, but it’s essential for planning and peace of mind.
“It’s gonna get worse before it gets better,” said Jay Freyensee, acknowledging the difficulty of these conversations.
Pat Baker shared how her husband’s freezing episodes have increased. “When he freezes in a doorway, then falls, everyone rushes to help. But I have to tell them to wait—he needs time to process how to get up.”
Marlene Kendrick emphasized the importance of planning. “We’ve done a lot of planning because we know it’s going to get harder. We want to be ready for when I can’t do the things I do now.”
Tips for Discussing Progression: • Be honest about what to expect. • Make plans early to reduce stress later. • Balance hope with practical preparation.
7. Communicating with Clarity: Practical Strategies Participants shared strategies for navigating conversations and fostering understanding: • Use simple, direct explanations. • Set the tone for conversations and remain calm. • Set expectations and boundaries with friends and family. • Have prepared responses for insensitive comments. • Limit discussions when needed to protect your energy.
In the end, the discussion made one thing clear: communication isn’t just about explaining Parkinson’s to others—it’s about fostering understanding, preserving dignity, and finding the right balance between independence and support.
As Lynn Hubert aptly stated, “We all have good days and bad days. But knowing you’re not alone in this journey makes all the difference.”
Many people with Parkinson’s experience depression, anxiety, or apathy. Did you know that they are distinct mood states? We spoke with Dr. Michelle Dagostine about these three symptoms and how we may be able to manage them.
About the Presenter
Dr. Michelle Lavallee Dagostine is a movement disorder specialist with Hartford HealthCare Medical Group and is part of the Chase Family Movement Disorder Center. Dr. Lavallee Dagostine was the associate director of clinical research at the Institute for Neurodegenerative Disorders for several years prior to joining Hartford HealthCare in her current role. She sits on the board of the American Parkinson’s Disease Association, CT chapter, and is passionate about caring for, and educating, her patients and their families.
March is a time to honor and celebrate the countless contributions women have made, and at the Brian Grant Foundation, Women’s History Month gives us an opportunity to share some of the diverse stories of women who confront Parkinson’s disease with courage and resilience. Through our personal video shorts, blog posts, and podcasts, you will hear from women are not only navigating the challenges of Parkinson’s but are also challenging societal perceptions, advocating for awareness, and inspiring others along the way.
VIDEO SHORTS
Sree Sripathy – 30 Days of Parkinson’s Amy Lavallee – My Little Yellow Pill Shan Havins – In Pursuit of Purpose Denise Coley – Marathon Lessons for Life Marlene Kendrick – Believe Ana Mariá – Wise Limits Caryn Lee – Now What? …Finding Balance Claudia Danker – Tin Woman in Action Kamal Julka – We are the “Elites” Megan Taye – The Life of the Party Serina Marie – Destiny Amber Hesford – Control
Parkinson’s Stigma for Women – Sree Sripathy and Richelle Flanagan, co-founders of the Women’s Parkinson’s Project, about Parkinson’s Stigma for Women. Listen on Apple, Spotify, or YouTube.
Parkinson’s Stigma Internationally – Nduta M’mbogori speaks about her experience being diagnosed and living with Parkinson’s in Nairobi, Kenya. Listen on Apple, Spotify, or YouTube.
A Champion for Veterans – Dr. Sara Whittingham, USAF Veteran, physician, Ironman triathlete, wife and mother. Listen on Apple, Spotify, or YouTube.
Things that Women Deal With – Amber Hesford speaks with friend and Parkinson’s advocate, Esther Labib-Kiyarash. Listen on Apple, Spotify, or YouTube.
Tracking your Parkinson’s symptoms can help you manage your condition and improve communications with your doctor.
In this Parkinson’s Spotlight Webinar, Amanda Hare, DNP, and Brianna Hood, PT, discuss the features of StrivePD, a free app that enables you to manually log symptoms, track what makes you feel better or worse, set medication reminders, learn from patterns in your activity and share your reports with your care team.
About the Presenters
Amanda Hare, DNP (ahare@runelabs.io) Title: Lead Medical Science Liaison, Doctor of Nursing Practice
Amanda Hare is a Doctor of Nursing Practice who started her career as a bedside nurse in the Neuroscience Intensive Care unit after receiving her Bachelor of Science in Nursing from The University of South Carolina. She spent over 8 years as a bedside nurse in the Neuro ICU taking care of critically ill patients who were suffering strokes both ischemic and hemorrhagic as well as spinal cord injuries and brain tumors. She then decided to advance her career since finding her passion in caring for those with neurological conditions. She graduated from The Medical University of South Carolina, receiving her Doctor of Nursing Practice and going on to care for Parkinson’s patients and other movement disorder related conditions at an academic Center of Excellence. She currently is the Medical Science Liaison for Rune Labs and practices general neurology at a private practice on a part-time basis in Charleston South Carolina where she lives with her husband and 2 children. Amanda is on the executive committee of the Association of Movement Disorders Advanced Practice Providers (AMDAPP) and recently received her Certification in Movement Related Disorders (CMRD).
Brianna Hood, PT, DPT, CSCS (bhood@runelabs.io) Title: Clinical Specialist, Doctor of Physical Therapy
Brianna began her Physical Therapy training at the University of Delaware, where she completed her Bachelor in Science in Exercise Science and Kinesiology. She continued on to pursue her Doctorate in Physical Therapy (DPT) at Rutgers University. There her passion for neurologic conditions grew, specifically her love for working with those diagnosed with Parkinson’s. Brianna has clinical experience treating Parkinson’s in a variety of settings including acute rehab, home health, skilled nursing facilities, and outpatient clinics. She is both LSVT-BIG certified and a Rock Steady Boxing Coach. She joined Rune Labs in 2022 as a member of the StrivePD Clinical Specialist team. Day-to-day, she works closely with clinicians using StrivePD, providing support and educational resources. She also uses her clinical knowledge to assist with updates to the StrivePD product, specifically around mobility metrics and exercise activity logging. She is excited to contribute to data-driven efforts of improving patient care and supporting the next generation of Parkinson’s care.
February 2025
Hosted by the Brian Grant Foundation (BGF), more than 30 people living with Parkinson’s, their care partners, and passionate advocates gathered at the Parkinson’s Advocates Happy Hour to discuss shaping the advocacy agenda for Oregonians impacted by Parkinson’s disease. This event served as an opportunity to align efforts on policies that will drive meaningful change at the state level.
Katrina Kahl, the executive director for BGF, introduced several issues that impact people with PD with the goal of identifying two top priorities for the group to rally around. Initiatives included increasing state funding for Parkinson’s research, improving prescription drug affordability, and expanding access to behavioral health services. Participants also discussed the importance of raising awareness about environmental toxins linked to Parkinson’s, securing local proclamations for Parkinson’s Awareness Month, and advocating for better social conditions, such as transportation and access to nutritious food.
BGF works at both the state and national levels to advance policies that benefit people with Parkinson’s. Through its partnership with the Unified Parkinson’s Advocacy Council and other national partners, BGF supports initiatives that increase federal research funding, expand telehealth services, and push for stronger environmental protections. However, this event underscored the need for a more localized approach, ensuring Oregon’s unique needs are addressed through targeted state-level initiatives.
Attendees were asked to complete a survey to identify the top two priorities for Parkinson’s advocacy in Oregon. Once determined, they are encouraged to take an active role in advocacy by signing petitions, contacting legislators, and sharing personal stories to humanize the impact of Parkinson’s disease. Whether through written testimony, public awareness efforts, or direct policy engagement, the Parkinson’s community in Oregon is mobilizing for action.
This event was a reminder that advocacy starts with those most affected. By raising their voices and working together, Oregonians living with Parkinson’s can influence policies that improve access to care, advance research, and enhance quality of life for all impacted by the disease.
Are you ready to join the movement? Stay informed and get involved in BGF’s Parkinson’s advocacy efforts today! Send an email to info@briangrant.org to share your story, your thoughts, and find out how you can join the group!
Related Posts
How do you manage your medications? Do you know what a dopamine agonist is? Do you know how to travel with your medication? Shannon Anderson, M.P.A.S., PA-C, Oregon Health Sciences University, starts at the beginning and talks about the basics of medications and Parkinson’s with Get your pill boxes ready!
About the Presenter
Shannon Anderson, M.P.A.S., PA-C is an Associate Professor of Neurology, School of Medicine and Physician Assistant in the Parkinson Center of Oregon primarily seeing movement disorder patients. She is also a part time faculty member at the OHSU Physician Assistant school. Her interests include Neurology, Movement Disorders, PA education, and Telemedicine.
January 2025
Senator Chris Gorsek, who introduced SB 718, appeared with BGF Executive Director Katrina Kahl, with advocates Kevin Mansfield, Sarah Winter, Patti Togioka, Sarah Lambert, and Brian Grant’s son, Jaydon Grant, all testified in support of a measure to establish a Parkinson’s registry in Oregon.
A Parkinson’s registry in Oregon would help us:
Identify high-risk groups, support patient contact studies and serve as a valuable data resource to bolster continued research of Parkinson’s disease.
Determine an accurate rate of incidence and prevalence of Parkinson’s by state.
Help researchers study patterns of Parkinson’s disease over time.
Improve our understanding of potential links, such as pesticide usage and military service, and the development of Parkinson’s disease.
View video testimony from BGF Executive Director, Katrina Kahl (2 min) and Brian Grant’s son, Jaydon Grant (2 min).
View entire the testimony supporting SB 718, ruling on establishing a Parkinson’s Registry in Oregon (Length-28 min): LINK
The Michael J. Fox foundation has also developed a web page that has additional information, including states where registries have already been created: https://michaeljfox.quorum.us/statewideregistries/
Dance has been shown to benefit people with Parkinson’s physically, cognitively and socially. It can increase the sense of enjoyment and provide opportunities for social interaction.
David Leventhal, the director and founding teacher of Dance for PD, guides us through the research backed benefits of dance. Remember to put your dancing shoes on as we will also learn a few new moves.
About the Presenter
David Leventhal is a founding teacher and Program Director for Dance for PD®, a program of the Mark Morris Dance Group that has now been used as a model for classes in more than 300 communities in 25 countries. Leventhal, who performed with the Mark Morris Dance Group from 1997-2011, leads classes for people with Parkinson’s disease and trains other teachers in the Dance for PD® approach around the world.
By Theresa Harczo, RN, Providence Brain and Spine Center, Portland, OR
Living in Oregon means living through four distinct seasons every year. Seasonal changes in temperature, sunlight, and activity can affect people with Parkinson’s in unique ways. Read on for tips to manage these changes and make the most of the winter months.
DARK vs LIGHT times in winter
During these months weather conditions can be harsh, not just the drop in temperature, but power outages can leave you in the dark. Have an emergency kit ready including flashlights and fresh batteries. and lanterns to safely navigate around your home. *
Watching the weather channel or signing up for text message weather alerts from your County can prepare you in advance. Remember to refill your medications and connect with neighbors and family who may worry about you when roads are too dangerous to travel.
COLDER WEATHER can affect your Parkinson’s symptoms
A drop in temperature can make walking more difficult and the body feels stiffer. **
Consider layering your clothes with a base layer of silk or polyester, then a warm middle layer like fleece and, if you plan to head outdoors, a wind or waterproof coat. Insulated gloves, a hat and warm socks will help keep you cozy.
Parkinson’s can affect the body’s ability to regulate temperature. Consider warm baths and showers for stiff muscles, getting massages to help improve your circulation, a down comforter or heated blanket for overall comfort.
EXERCISE is year-round activity
If you are a walker and want to avoid the cold or wet weather, head to a mall to keep up your pace.
To enhance your energy, eat lean proteins and complex carbohydrates.
Enjoy yoga, tai chi, or a stationary bike indoors. Many classes are available online. Start googling and check out what YouTube has for you. **
FOOD for the winter months
Our body uses more energy to stay warm. Salmon and walnuts have high amounts of Omega-3 fatty acids which help combat inflammation. **
Water intake tends to drop during the winter months, consider warm herbal teas as an alternative.
Enjoy the seasonal foods of winter. Apples, Avocados, Beets, Cabbage, Carrots, Onions, Potatoes, Pumpkin, Sweet potatoes and yams, Winter Squash and much more. ***
