What to Say to Someone with Parkinson’s and What Not to Say
When initiating conversations with someone who has Parkinson's, it's important to choose topics that are considerate and engaging. Show genuine interest and create an open space for them to share as much or as little as they're comfortable with.
Here are some conversation starters:
Hobbies and Interests:
"I remember you're into Lego. Have you built anything interesting lately?"
"How's your experience with improv going? Any memorable moments?"
"I recall you enjoy movies and TV. Seen anything great recently?"
Parkinson's Advocacy:
"I admire your work in advocacy and activism. Any recent milestones or projects you're excited about?"
"How can others get involved in Parkinson's advocacy? Any events coming up?"
Technology and Podcasting:
"Any new tech gadgets or apps that you find helpful or interesting?"
"Any new favorite podcasts you’re listening to?"
Books and Writing:
“I remember you were taking a writing workshop. How’s that going?”
"Are there any books or authors you've been enjoying lately?"
Daily Experiences:
"How do you manage your day-to-day activities? Any tips or routines that work well for you?"
"Have you discovered any strategies for making certain tasks easier or more enjoyable?"
Health and Well-being:
"How have you been feeling lately? Any positive changes or challenges you're navigating?"
"I'm curious about your approach to maintaining well-being. Any particular exercises or practices you find beneficial?"
Parkinson's Community:
"I'm curious, have you connected with others in the Parkinson's community? Any memorable stories or friendships that stand out?"
Favorite Local Restaurants:
"With the diverse culinary scene in Vancouver, any favorite local restaurants or hidden gems you like to frequent?"
Community Impact Goals:
"In your community involvement, what goals do you have for making a positive impact locally, especially considering your passion for Parkinson's advocacy?"
Parkinson's Research Updates:
"Given your interest in ending Parkinson's, are there recent advancements in research that have caught your attention? Anything promising on the horizon?"
Night Time Symptoms
When initiating a conversation with someone with Parkinson's, it's essential to be mindful of certain considerations. Remember, the key is to approach the conversation with empathy, respect, and an open mind. Listening actively and following their lead can help create a positive and inclusive interaction.
Here are things to avoid:
Assuming Limitations:
Avoid making assumptions about what the person can or cannot do. Parkinson's affects individuals differently, and it's best to let them share their experiences.
Insensitive Remarks:
Steer clear of making insensitive comments or jokes about Parkinson's. Humor is subjective, and what might be funny to some could be hurtful to others.
Overlooking Non-Motor Symptoms:
Don't solely focus on motor symptoms. Parkinson's also involves non-motor symptoms, and discussing these aspects can provide a more holistic understanding.
Interrupting or Rushing:
Be patient and avoid interrupting. Parkinson's may affect speech and movement, and giving the person ample time to express themselves is crucial.
Ignoring Personal Space:
Respect personal space, especially considering potential mobility challenges. Allow the person to dictate the level of physical interaction comfortable for them.
Pushing for Details:
Avoid pushing for detailed information about their health unless they willingly share. Some individuals may prefer to keep certain aspects private.
Offering Unprompted Advice:
Refrain from providing unsolicited advice on treatments or lifestyle changes unless the person specifically asks for input.
Ignoring Communication Preferences:
Everyone has different preferences for communication. Some may prefer written communication, while others may be comfortable with verbal interaction. Respect their choice.
Underestimating Abilities:
Avoid underestimating the person's capabilities. They may have developed effective strategies to manage their condition, so treat them with the same level of competence as anyone else.
Pity or Overemphasis:
Resist expressing pity or overly emphasizing their condition. Treat them with the same dignity and respect you would offer to anyone else.
Avoiding Eye Contact:
Parkinson's might affect facial expressions, but that doesn't mean avoiding eye contact. Maintain respectful eye contact during the conversation.
Comparing Experiences:
Refrain from comparing their experience to others with Parkinson's. Each journey is unique, and making comparisons may not be helpful.
Discussing Cure Guarantees:
Don't make promises about cures or treatments unless you have reliable and current information. False hope can be detrimental.
Overusing Medical Jargon:
Be mindful of using excessive medical jargon. If discussing medical aspects, ensure that the person is comfortable with the level of detail you're providing.
Focusing Solely on Illness:
Avoid letting the conversation revolve solely around Parkinson's. Engage in diverse topics to ensure a well-rounded and enjoyable conversation
