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.”