Raise Awareness

Tips to Fight Loneliness and Social Isolation in Parkinson’s Disease

May 11, 2023

Asian man looking out the window while drinking coffee

The need to belong and form relationships is as basic as our need for food and water. In fact, studies show loneliness can negatively impact our physical and mental health, possibly contributing to a number of health conditions, such as poor sleep, depression and thinking changes.

If you are living with Parkinson’s disease (PD), you may be at an even higher risk for feeling lonely and disconnected. Movement symptoms, such as stiffness, slowness and balance problems, can interfere with mobility and the ability to navigate group situations. Tremor and dyskinesia (involuntary movements) — at times visible to others — may lead to avoidance of social settings. Though less recognizable, non-movement symptoms, including fatigue, anxiety, depression and apathy, can also cause people to withdraw.

Our new Mental Wellness Series is dedicated to mental health conversations. This article accompanies our virtual round-table conversation, Finding Connection and Support While Living With PD. The following tips can help you build meaningful connections and stay engaged.

1. Make plans strategically.

Being social is tough when you’re feeling stiff, tired, depressed or anxious, but it’s important to stay engaged, even if you don’t feel like it. Set time aside to connect with your family, friends and neighbors every day — in person, over the phone, by text or through social media.

Build social activity into your routine by scheduling outings (such as exercise or hobbies with friends) a week in advance. Let your new friends know (and remind old friends) that Parkinson’s is not always the same or predictable. Meeting times may need to shift now and then, and that’s OK. If you are worried about “off” times, coordinate your social activities with medication “on” times.

Care Partner Tip

People navigating mood symptoms may require extra support from their care partners. If your loved one has been diagnosed with apathy or has low motivation, you may need to suggest or schedule structured, regular activities rather than asking open-ended questions that require more energy. Aim to make outings fun; involve people your loved one enjoys spending time with and include small rewards throughout your daily routines.

Don’t forget about your own emotional and social needs. Figure out what “fills your tank” and build in time for that as well.

2. Connect with the right support for you.

Just as the best partners and friends empower us to shine, the right social groups are ones that make us feel understood, encouraged and welcome. For some people, finding people who share common ground — perhaps of a similar age or cultural background — can be key to feeling comfortable and seen. Participating in Parkinson’s-specific support groups, exercise classes and events provides opportunities to connect with people who understand what you are going through.

“When I first got diagnosed, you know, I didn’t see anyone like me. I now have a family that I never thought I would have.”
—Gregory, person living with Parkinson’s

Ask your healthcare team or call our Helpline at 1-800-4PD-INFO (1-800-473-4636) for information on groups in your area. Explore PD Conversations, our online network of support, or consider getting involved with your local Parkinson’s Foundation chapter.

3. Branch out.

Loneliness can run deep or come and go. Though it may be easier for people living alone to lose connection with others, even those surrounded by family and friends can yearn for a different kind of connection. Fostering relationships in different social spheres among family, friends and community builds a strong web of support to help you navigate the day-to-day challenges of Parkinson’s.

Look for opportunities to make an impact in any way that speaks to you. Some options include supporting a friend in need or getting involved in a cause close to your heart. Consider volunteering to help make life better for people living with Parkinson’s.

4. Reconnect with your passions.

Facing changes in your abilities can be disheartening, but don’t let yourself get stuck. Explore ways to modify an activity or change your environment to continue doing what you enjoy. For example, golfing may look different. Maybe now you play nine holes instead of 18. Fortunately, humans can adapt, find joy and create meaning even under difficult circumstances — particularly when we stay connected and engaged.

Did you know an occupational therapist can also help you discover ways to adapt your favorite pastimes and stay engaged with people?

5. Rely on your healthcare team.

Breaking out of your shell when you are feeling lonely and isolated is no small feat. Lean on your healthcare team. One of your providers could be the lifeline you need to get out of a dark place, either by asking a question that helps you recognize mood changes or prompting you to seek mental health treatment.

Your healthcare team is there to help support your goals and work with you to identify the best treatment options. You may need to switch providers to find the right fit for you.

“The nurse told me, ‘You know, you're going to be working. You're going to be doing things.’ Basically, she was challenging me. I was in total darkness. I didn't go anywhere. I didn't do anything. But that little window of opportunity switched my light on and, before I knew it, I was participating in boxing and the rest is kind of history.”
—Alharvey, person living with Parkinson’s