Over 100 people in Portland turned out for BGF’s The Parkinson’s Plan Book Listening Event on October 23, 2025. Dr. Ray Dorsey, neurologist and champion in Parkinson’s disease research and care, spoke about The Parkinson’s Plan, the new book he co-authored with Dr. Michael Okun. Watch our event video to learn more about the PLAN for prevention and treatment. Watch the presentation HERE.
Our Lunch & Learn series continues to explore topics that support living with Parkinson’s disease. On October 20, 2025, members of our Program Advisory Council and others in the community discussed how people with Parkinson’s and their care partners navigate roles, boundaries, emotions, daily life, and community support. Participants shared lived experiences, practical strategies, and resources for others in the Parkinson’s community.
The Partnership
What “care partner” means (and why it varies)
Participants emphasized that “care partner” can be a spouse, family, friends, clinicians, or a broader circle—whoever shows up to help. “A care partner can be more than just one person, it can be anybody that is there helping you out.” — Marlene K
For those living alone or without nearby family, “Providers and drivers often become essential partners.” — Sharon K
Role identity
The role of some partners can change over time: “I feel like ‘husband’ is sufficient right now, but this is an ever-evolving disease. I’m riding in the car that’s going down the Parkinson’s road.” — Bestin R
“Our relationship didn’t change when I got Parkinson’s, but it changed when my partner learned what his role is. That has made me feel like he’s more of an involved care partner.” — Marlene K
Engaging care partners
Going to care partner meet ups and attending doctor appointments have motivated some partners: “He came out of that session saying, ‘I’m going to your doctor’s appointments with you now.’ Since then, he pays attention when I have a new symptom.” — Marlene K
“Listening to others who are going through the same experience can help reluctant partners tiptoe in and feel less exposed. — Amy L
Partnership takeaways
Encourage engagement with other care partners in the Parkinson’s community as well as seeking out other resources for support.e. I want to do everything. But my body just won’t let me.”
— Caren Masem
Define who’s in your care circle (home + clinic + community).
Revisit roles regularly; what works this month may change.
List it, label it, and schedule it. Once the tasks are visible (documented, listed, and time-bound), they’re no longer silently defaulting to one person.
Others described anxiety about being misunderstood or perceived as “lazy” or “fine,” especially when symptoms aren’t visible. Speech issues, mobility challenges, and the mental toll of constant planning also came up often.
“It’s exhausting to plan out each step you take so you avoid situations. And that leads to more isolation.”
— Jess Caudill
“I used to just show up and be myself. Now I think about everything—how I feel, how I’ll be perceived.”
— Steve Stryker
Strategies include:
Emotional Impact
Different coping styles
People described having different ways of coping as being challenging to work through. One member shared how their cultural/family norms discouraged talking about illness or emotions—making PD conversations hard until new habits formed. “Everybody grows up in different homes with different communication styles. My family was open. My husband grew up in a family that avoided talking about emotions so that’s been something we’ve been working on.” — Megan T
Guilt and care-partner fatigue
Stories were shared about care partners who voiced guilt about feeling tapped out and pressure to be “superhuman” while putting their own needs aside. Sometimes it makes sense to agree on scheduled “me time” for the care partner. “The caregiver has a life and has needs also. Sometimes you have to give in and that piece is sometimes left out.” — Lynn H
Communication
Much of the discussion centered around clear communication and when to say what. Clear “ask vs. anticipate” awareness helped couples avoid over or under helping: “He doesn’t need to say ‘let me help you’ when I’m trying to do something myself. And, no calling across a room, ‘Did you take your meds?!’” — Lynn H
“My husband will sometimes say, ‘Are you parkie?’ or ‘Are you waiting for the bus?’” (waiting for meds to kick in). — Amy L
What helps emotionally
Resources & Community
Final Thoughts
This conversation underscored a shared truth: care and independence can coexist when couples name fears, set clear agreements, adopt small communication tools, and build community around them. Whether you start with a code word, a shared note, or a single event, each step strengthens the partnership—today and for whatever comes next.
See more Lunch and Learn session resources:
Talking About Your Parkinson’s with Others
Speech Challenges and Communication Strategies for People with Parkinson’s
Social Isolation and Building Connections for People with Parkinson’s
On September 8-10, 2025, the Brian Grant Foundation was proud to be part of the 2025 Parkinson’s Policy Forum let by the advocacy arm of the Michael J. Fox Foundation. We were among 250 advocates from 45 states that gathered in Washington, D.C. to elevate the voice of the Parkinson’s community directly to members of Congress.
Attendees include people living with Parkinson’s, care partners, families, clinicians, researchers and representatives of PD and atypical parkinsonism organizations. Together we met directly with our respective federal officials and their staff who influence policy and funding decisions.
Key Outcomes
Attendee Stats
Hill Meeting Stats
Legislative Asks
Key Moments
Why It Matters
With Parkinson’s now the fastest-growing neurological disease, these meetings ensure research funding and federal action stay top of mind for decision-makers before a major budget vote. The Parkinson’s Policy Forum empowered all of us as advocates to carry this momentum home — engaging district staff, attending town halls, and keeping Parkinson’s issues front and center year-round.
Add Your Voice
1. Send a letter to Congress urging them to protect and expand funding for the National Institutes of Health (NIH): https://michaeljfox.quorum.us/campaign/131672/
2. Ask your state lawmakers to prioritize Parkinson’s policies in your state as they prepare for the 2026 legislative session: https://michaeljfox.quorum.us/campaign/132913/
Dr. Carol-Ann Nelson talks about the science, like the neuroplasticity, why gait matters, and ways to maximize the benefits of walking.
If it is hard to get outside, find tips on walking using a treadmill.
Living with Parkinson’s can sometimes feel like navigating a world that is pulling away just when connection matters most. At our April 7, 2025, Lunch & Learn, people from the Parkinson’s community and members of our Program Advisory Council gathered to talk candidly about social isolation and the challenges of staying connected. Their stories offer practical insights and strategies to support others in the Parkinson’s community.
1. Understanding the Barriers to Connection
Parkinson’s doesn’t just affect mobility and speech—it impacts emotional energy, confidence, and the logistics of getting out into the world. Participants spoke openly about the ways apathy, fatigue, fear of judgment, and physical limitations contribute to isolation.
“Apathy hits without warning and suddenly even going somewhere you were excited about feels impossible.”
— Megan Taye
“For me, it’s fatigue. I want to do everything. But my body just won’t let me.”
— Caren Masem
Others described anxiety about being misunderstood or perceived as “lazy” or “fine,” especially when symptoms aren’t visible. Speech issues, mobility challenges, and the mental toll of constant planning also came up often.
“It’s exhausting to plan out each step you take so you avoid situations. And that leads to more isolation.”
— Jess Caudill
“I used to just show up and be myself. Now I think about everything—how I feel, how I’ll be perceived.”
— Steve Stryker
Strategies include:
2. Redefining Support and Relationships
One of the most difficult changes Parkinson’s brings is in relationships. People may drift away out of discomfort, while others become unexpected lifelines.
“If a relationship requires you to dismiss those elements of yourself, do you really want to engage with that person?”
— Serena Griffin
“We find ourselves spending time with people who can meet us emotionally—who aren’t uncomfortable with where we are.”
— Bestin Roy
Participants highlighted the emotional toll of missing events or needing to change plans last-minute. The impact is felt not only by the person with Parkinson’s, but also their partners, friends, and family members.
“Sometimes it’s my husband stepping in and saying, ‘I’ve got it.’ And that’s hard. There’s guilt.”
— Amy Lavallee
Strategies include:
3. The Role of Care Partners
Care partners shared their own struggles: pushing too hard, not pushing enough, carrying emotional weight, and wanting to preserve their partner’s independence.
“I push him sometimes, because I know he’ll be glad he went. But I try to respect when it’s too much.”
— Cynthia Caudill
“The decisions we make together affect our future. It’s hard to separate cause and effect.”
— Laurie Kilbourn
Some expressed gratitude for support, others described the exhaustion that comes from navigating every detail. As Jess put it, it’s a two-way street:
“Even if I feel like crap, I try. Because of everything she does for me, I can make that effort.”
— Jess Caudill
Strategies include:
4. Planning for Connection
Despite the challenges, the group emphasized the importance of thinking ahead to make the best of each occasion.
“I bring a folding stool, snacks, and water everywhere I go—just in case.”
— Amy Lavallee
“If I know where I’m going to park, how far to walk, and what help is available, I’m more likely to go.”
— Serena Griffin
“Even knitting during a Zoom call helps me stay focused and feel connected.”
— Caren Masem
Strategies include:
5. Community and Peer Support
Many shared the value of community—especially other people living with Parkinson’s. Mentors, peer matches, and support groups help normalize the experience and ease loneliness.
“I tell people to find peer support—someone you can talk to who really gets it.”
— Sharon Kishner
“Being around people with Parkinson’s helped me move past the shame. I realized I’m not alone.”
— Jay Freyensee
“I live in a small town. I have a lot of friends that don’t have Parkinson’s, but when they run into people who do have it, they have them call me.”
— Cathie Baker
“Just ask for help, because most of time, someone will help you.”
— Lynn Hubert
“When I’m really down, I do something for someone else. It gets me out of my own head.”
— Caren Masem
Strategies include:
The voices shared at the Lunch & Learn serve as a powerful reminder that connection is not only possible, it’s essential. Social isolation can cast a long shadow, but through intentional planning, honest communication, and the strength of community, people with Parkinson’s can find meaningful ways to engage and belong.
Our Lunch & Learn series continues to explore topics that support living with Parkinson’s disease. On June 16, 2025, members of our Program Advisory Council and others in the community discussed the unique challenges that Parkinson’s disease poses to speech and communication. Participants talked about their experiences, shared what they have learned during their journey, and offered resources to support others in the Parkinson’s community.
Speech-related symptoms often emerge gradually and can be easy to dismiss until they begin to affect daily life. Participants described moments when they realized their voice was quieter, less clear, or more difficult to project, and how those changes started impacting everyday communication.
I went to a drive-thru, and they couldn’t hear me. I thought I was projecting. That’s when I realized my voice had changed. — Michelle Garratt
I didn’t realize I was talking softly until my kids told me they couldn’t hear me. — Sharon Kishner
For a long time, I don’t think I realized it was connected to Parkinson’s. People would ask me to speak louder, and I’d just think, they need their ears checked. — Serena Griffin
Others shared how Parkinson’s affects articulation, breath control, and timing—making it hard to speak in groups, jump into fast-moving conversations, or be heard over background noise. Some described having to manage excessive saliva or swallowing issues before even attempting to speak.
Common challenges include:
Speech issues can impact everyday life and a person’s self-esteem. Participants shared the emotional toll of being asked to repeat themselves or of opting out of conversations entirely due to the fear of not being understood.
I think I speak less. I’m not sure how clear I am, or if I’m loud enough, and I end up just not talking. — Serena Griffin
I definitely avoid certain situations. Sometimes, like at the grocery store, I won’t go up and talk to somebody I know, because it’s difficult. But also, with larger groups of people. We’ll have meetings at work, and it’s hard to talk with people. I can’t get a word in edgewise or they can’t understand me. — Jess Caudill
I think I get quieter on the telephone too… when our kids call to talk, it starts off okay, and then Pat (care partner) has to remind me to keep going, louder. — Dan Baker
You tend not to go to noisier places. I just did that last week—chose a quiet place instead of a bar because I knew I wouldn’t be able to have a conversation. — Marlene Kendrick
My biggest fear is being dismissed. — Michelle Garratt
Key reflections included:
Several participants described how cognitive load can interfere with their ability to speak—especially when multitasking or surrounded by noise. This included difficulty finding words, organizing thoughts, or managing simultaneous tasks like walking and talking.
If there’s too much stimulation, I can’t get my thoughts together. It’s like you really have to be conscious in your mind to project, to enunciate. And if it’s compounded with emotion or stress? Forget about it. — Michelle Garratt
If my wife is doing a complex motor task, like unloading the dishwasher, she’s more likely to lose her train of thought. If there’s something else competing for her attention, it knocks her off track and she can’t complete the thought. — Bestin Roy (care partner)
I beat myself up for not being able to walk and talk and think of this and do that (at the same time). But I think sometimes, just give yourself a break! — Lynn Hubert
Examples of cognitive-related barriers:
Participants shared a wide range of ways that have helped them manage and improve their speech. Most emphasized that the key is practice and intentional effort. From exercises to devices and therapy, multiple approaches are often necessary. Speech therapy, including LSVT LOUD (focusing on increasing vocal loudness and clarity), was a common resource.
You can do LSVT online… Dan even did it while he was recovering from hip surgery. It was perfect timing. — Pat Baker
I sing in the car, in the shower, during boxing class. Why not get silly and have fun with it? — Michelle Garratt
I’ve been through speech therapy twice, and the second time around, my therapist takes no prisoners. She makes me do it over and over again. — Dan Baker
If I yell sometimes, I can actually talk normal… what I think is normal. — Marlene Kendrick
Reading aloud helps a lot… even reading a magazine, just reading emails out loud. That was part of my (speech therapy) homework. — Sharon Kishner
You just need to engage every day—use your voice, your brain. Otherwise, it gets harder. — Lynn Hubert
Helpful strategies shared:
Participants emphasized that supportive environments—where people feel safe to speak and be heard—can make a major difference. Encouraging one another, asking for clarity gently, and using humor all help reduce the burden.
When I’m at my dad’s (who has Parkinson’s), I say, “Dad, can I first turn off the TV for a moment, and do you mind if we go into the living room?” I’d wheel him in there and just be one on one, because he doesn’t like advocating for himself, but you can have a really good conversation. — Michelle Garratt
I think sometimes we’re hard on ourselves… just give yourself a break on not being able to do everything you want to. — Lynn Hubert
Sometimes it’s like educating people, letting them know what it is you need. — Cynthia Caudill (care partner)
I ask people that I’m in contact with a lot, let me know when you can’t hear me so I can enunciate because otherwise I don’t know that you can’t hear me. So, you are nodding your head — you’re not getting my information, and I will get frustrated. — Sharon Kishner
Reminders for allies and care partners:
Speech challenges may feel overwhelming at times, but through therapy, creativity, and support from others, people with Parkinson’s can continue to express themselves and be heard. The takeaway for this group is education, practice, understanding, and persistence—layered with the power of the Parkinson’s community.
It can be a challenge for people with Parkinson’s and their care partners to develop a meal plan. With complications like medication schedules, dysphagia, and other PD symptoms, maintaining a healthy diet is overwhelming. Kelly Morrow, MS, RDN, FAND presents on how to plan and create healthy meals that are delicious and nutritious.
About the Presenter
Kelly Morrow, MS, RDN, FAND is a Registered Dietitian Nutritionist and Fellow of the Academy of Nutrition and Dietetics. She is an Affiliate Instructor at the Osher Center for Integrative Medicine at the University of Washington and Affiliate Associate Professor at Bastyr University where she specializes in integrative and functional nutrition.
Kelly is an integrative dietitian who uses data including continuous glucose monitoring, in-depth diet tracking, biometrics, and functional nutrition labs to help clients solve complex health challenges while reducing trial and error frustration.
Apathy, fatigue, dystonia, dyskinesia and freezing can make it hard to stick to an exercise routine. Nate Coomer, founder and owner of the Parkinson’s Fitness Project presents on how to exercise with these PD symptoms.
April 2025
Social isolation is a common experience for many in the Parkinson’s community. This April, for Parkinson’s Awareness Month, we’re focusing on building social connections for people with Parkinson’s and their loved ones.
Here’s you can get involved:
On World Parkinson’s Day, April 11
Check out our tools for communicating with family, friends, and others
Join the conversation to talk about your social experiences
Meet others during one of our online classes
Learn with us
If you’re in Portland, Oregon, don’t forget:
