Relationships the living with parkinson's council

During our July Living with Parkinson's Meetup, panelists discussed how their relationships have changed since being diagnosed with Parkinson's. As always, our panelists speak with honesty and emotion and make everyone affected by Parkinson's feel less alone.

Join us on the third Thursday of every month at 1 pm MDT! Click here to register.

You can download an audio file of this month's webinar here: Audio LWPMU July 2023

You can download a transcript of this month's meetup here: Transcript LWPMU July 2023 .

Note: This is not a flawless, word-for-word transcript, but it’s close.

Notes from this month's meetup

While living with Parkinson's, your relationships will change and evolve. Sometimes, this will have nothing to do with Parkinson's, but other times, living with Parkinson's is why the relationships change.

For example, some people may not reach out to you as often as they used to. In some cases, you are the one to withdraw from friends and family. Some other reasons relationship change due to Parkinson's may include:

  • Fatigue and apathy that cause you or others to feel uncertain about how to engage socially
  • Physical changes that limit your ability to do things you used to do with others
  • Speech issues that make it hard to communicate
  • Lack of understanding that causes your friends and family to feel unable to connect with you
  • Social isolation that can result from not working or being out as often as you were in the past

However, the other side of these changes is that Parkinson's can facilitate new relationships, highlight opportunities to connect with people and activities you might not have previously engaged in, and even drive a new or revitalized sense of purpose.

Tools to help you navigate relationship changes

General Tips

Whether you are starting a new relationship or maintaining one that has evolved over time, there are some ways you can help facilitate strong bonds with friends and family.

  • Have compassion for yourself and others. Parkinson's is hard no matter how it touches your life.
  • Practice self-advocacy by being candid about what you're going through and your needs with those you want to connect with.
  • Be open to new ways to relate with people you have a longstanding relationship with or people you might have a new connection with.
  • Use social media and other digital tools to communicate and stay in touch.
  • Develop introspection by journaling. This can help you to better understand yourself and your relationships.
Support Groups

Support groups are a great way to forge new connections, learn from others, and find encouragement. Support groups can be challenging, too.

One challenge is finding the right group for you. Three key factors are

#1. Location: Do you prefer to meet online or in person?

#2. Time: What time works best for you?

#3. Group: Do you want an open group or a group for women with Parkinson's, YOPD, etc.?

We often hear from people who have been newly diagnosed that they hesitate to go to support groups because they don't want to see their future. In this case, a regional Parkinson's organization can be helpful for finding information about different types of support groups in your area.

Spread Awareness about Parkinson's

There is a lot of misunderstanding about Parkinson's, even amongst care providers in sophisticated hospital systems, and the panel said that one way anyone with Parkinson's can help foster stronger relationships is to help spread awareness about Parkinson's.

Being open about your experience living with Parkinson's can help improve social experiences for you today and for people with Parkinson's in the future.


The longer you live with Parkinson's, the more likely you are to find that Parkinson's will change what you're capable of doing, and in this way, you may find that Parkinson's changes your relationship with yourself. Developing a practice of mindfulness can help you navigate these changes.

Mindfulness doesn't necessarily mean becoming a monk or a meditative master; mindfulness can be as simple as acknowledging how and what you feel at any moment.

Taking time to practice paying attention to how you are in a moment can help you become accustomed to and comfortable with the inevitable changes in your life, regardless of whether or not the changes result from Parkinson's.

Resources referenced during this Month's Meetup

Mindfulness and Meditation Webinar

Fatigue and Parkinson's

Apathy and Parkinson's

Relationships and Community Hub

Find a Davis Phinney Foundation Ambassador

Parkinson's Care Partner Meetup

Moments of Victory

Heather's Video About ERs and Trauma Centers

Heather's Davis Phinney Foundation Content

Micrographia Overview

Let's Combat Micrographia

Creative Neurology

APDA Local Resource Hub

Gear and Gadgets for Living Well with Parkinson's

Urban Poling 

Breathing and Swallowing Resources


Monthly News Wrap Up: Including a List of Clinical Trials

Mindful Pivoting

Aging in Place Webinar

Care Partner Resources

Dance for Parkinson's 

Touch the Top of the World

Sir Paul McCartney Addressing the Parkinson's Community at World Parkinson Congress via Video

Parky Raccoon Song, Presented at World Parkinson Congress


You can learn much more about living well with Parkinson’s today through our Every Victory Counts® suite of resources. Each manual is packed with up-to-date information about everything Parkinson’s. Click the link below to order your manual(s).

Order Your Manual(s) Now

Thank you to our 2023 Peak Partners, AbbVie, Amneal, and Kyowa Kirin, and our Every Victory Counts Gold Sponsor, AbbVie Grants, for their ongoing support of these must-have manuals. Additionally, we’d like to thank Barbara and Dale Ankenman, Abby and Ken Dawkins, Bonnie Gibbons, Gail Gitin in loving memory of Gene Gitin, Irwin Narter, and Lorraine and J Wilson for their generous donations that allow us to make these resources available and free to all. 

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