MENTAL WELLBEING | Managing loneliness - Young Onset Parkinson's Exchange

You Are Not Alone: Managing Loneliness When You Have Young Onset Parkinson’s

Loneliness is one of those things that people don’t talk about nearly enough when it comes to Parkinson’s. And yet it’s one of the most common experiences people describe, especially those living with young onset Parkinson’s (YOP), where a diagnosis can arrive right in the middle of your active social life, dating, career, your parenting years, caring for aging parents, or a stage of life where your peers simply can’t relate to what you’re going through.

You might find yourself pulling back from social situations because your symptoms feel unpredictable. You might stop doing the things you used to love because of Parkinson’s apathy. You might feel like a burden, or worry about how others see you. These feelings are real, valid, and incredibly common, but they don’t have to stop you from still doing the things you love with the people that you love.

Chicago psychologist John Cacioppo wrote a book about loneliness, about how the need for social connection is so fundamental in humans that without it we fall apart, down to the cellular level. Over time blood pressure climbs and gene expression falters. Cognition dulls; immune systems deteriorate. Aging accelerates under the constant, corrosive presence of stress hormones. Loneliness, Cacioppo argued, isn’t some personality defect or sign of weakness, it’s a survival impulse like hunger or thirst, a trigger pushing us toward the nourishment of human companionship. Furthermore, he wrote:

“…people who get stuck in loneliness have not done anything wrong. None of us is immune to feelings of isolation, any more than we are immune to feelings of hunger or physical pain.”

Why loneliness hits harder with Parkinson’s

Parkinson’s can create a kind of perfect storm for social isolation. Motor symptoms like tremor, slowness, or changes in facial expression can make social situations feel awkward or exhausting. Non-motor symptoms, depression, anxiety, fatigue, speech and cognitive changes, can quietly erode the motivation to reach out. And for younger people, especially, being diagnosed with a condition most people associate with older age can leave you feeling like you simply don’t fit anywhere.

There’s also a real practical dimension: if driving becomes difficult, if work changes, if your social world was built around physical activities you can no longer do as easily, or you changed your lifestyle to limit alcohol and eat healthier, it may make it harder to interact in the ways you once used to.

What the science says: connection is medicine

The research on loneliness is striking. Chronic loneliness has been linked to increased risk of depression, anxiety, cognitive decline, and even faster physical health deterioration. The Australian Institute of Health and Welfare (AIHW) identifies loneliness and social isolation as major health and welfare concerns with impacts on mental health, chronic disease, and mortality.

One key finding? You don’t need a full social life overhaul to make a difference. Research consistently shows that even brief, warm, genuine social interactions, the kind where you feel seen and not judged, can meaningfully reduce feelings of loneliness in the moment. Quality matters more than quantity: a short conversation that feels real will do more for you than hours of superficial contact.

Studies also show that in-person contact tends to be more effective than digital interaction, though phone calls beat text messages, and any connection is better than none. The point isn’t to get it perfect; it’s to keep the thread alive.

🎧 Worth a listen

If you enjoy podcasts, Alie Ward’s Ologies recently featured a two-part episode on Salugenology, the science of what actually makes humans healthy. Guest Julia Hotz, author of The Connection Cure, digs into the research on how movement, nature, belonging, and community activities are not just nice-to-haves; they are biological needs. She also speaks directly to social isolation, what to do when depression makes it hard to do the things that lift depression, and why volunteering is one of the most evidence-based antidepressants we have. You can find the Salugenology Part 1 and Part 2 on all major podcast platforms.

She also featured an episode on Awe Psychology, her guest Dacher Keltner, from UC Berkeley, stated that just one minute of awe each day can help battle loneliness… so quietly watch that sunset or sunrise, listen mindfully to your favourite piece of music, go to the museum and gaze upon your favourite art pieces, sit back for a minute in silence and think about that experience that was full of awe for you.

Small things that make a real difference

You don’t have to overhaul your social life in one go. In fact, research suggests that building consistent small moments of connection is often more sustainable and effective than waiting for the perfect opportunity. Here are some ideas that work particularly well for people living with YOP:

Kill two birds with one stone

One of the most effective strategies is attaching a connection to something you’re already doing, or need to do anyway, but apathy might be getting in the way. This method also takes the pressure off making time for socialising as a separate activity.

- Ask a friend, neighbour, or your care partner to come with you to appointments. The drive or wait time becomes a catch-up, and you get practical support at the same time. If you don’t have any of those, get a companion driving service to drive you and attend with you. You never know, you might make a new friend!
- Invite a friend to exercise with you, it’ll make you stick to the plan even when Parkinson’s might make you not feel like it. Whether it’s to walk the dog, go to a boxing for Parkinson’s class, a gym session, or even a gentle swim, you get the well-documented benefits of movement for Parkinson’s and the wellbeing boost of company at the same time.
- Suggest a coffee catch-up instead of a big event. Low-key, short, and flexible, easier to manage if you’re having an “off” day, and easier for friends to say yes to.

Build in regular contact, however small

Consistency is what keeps relationships alive. It doesn’t have to be a big production.

- Call a family member once a week. It doesn’t need to be long; even a ten-minute catch-up keeps the connection warm.
- Send a voice message instead of a text. For days when typing is difficult, voice messages are a more personal, lower-effort way to stay in touch.
- Let people know when you’re having a rough patch. Giving friends and family a simple heads-up, “I’m having a tough week, but I’m okay” keeps them in your world without requiring you to perform wellness you don’t feel.

Get out of the house for a reason

Having a purpose or a role in your community gives social connection a built-in structure; you don’t have to work up the motivation from scratch each time.

- Join a group. Men’s Shed, a community garden, a music, art, or book club, a craft group, environmental/tree planting group, walking group or any regular community activity that fits your interests and energy. Contact your council to see what’s in your area. The Parkinson’s-specific versions of these (like exercise or boxing groups) have the added bonus of being with people who genuinely get it.
- Volunteer. Research strongly supports volunteering as one of the most effective activities for combating loneliness, improving mood, and providing a sense of purpose. Even a few hours a month can make a meaningful difference. Organisations like Volunteering Australia can help you find something that fits your capacity.
- Try a social prescribing program. Some GPs and health services in Australia now offer “social prescriptions”, formal referrals to community activities as part of your health care. It’s worth asking your GP if anything like this is available in your area.
- Become an advocate. Share your story with your local community. Meet with politicians and advocate for the Parkinson’s community, or whatever you are most passionate about (e.g. the environment, community sports, road safety).
- Sign up for a challenge. There’s always a fundraiser to join, or a community bike riding challenge, or just make up your own challenge to complete. It will motivate you if you make it public.

Parkinson’s support groups: people who actually get it

There is something genuinely different about being in a room, or a Zoom call, with people who understand Parkinson’s from the inside. You don’t have to explain yourself. You can share frustrations that might feel too heavy to put on family or friends. And you often pick up practical tips that no one else would know to tell you.

Support groups exist across Australia, both face-to-face and online, and many state organisations now offer groups specifically for people with young onset Parkinson’s.

State-based organisations with active support group networks include:

Fight Parkinson’s (VIC) 68 peer support groups across metro, regional, and rural Victoria, plus online groups
Parkinson’s NSW 60+ in-person and 5 online groups, including young onset-specific groups
Parkinson’s Western Australia support groups across WA
The Hospital Research Foundation – Parkinson’s
- Parkinson’s SA & NT (THRF) groups in metro and regional SA, including recreational, exercise, and specialised groups like the Young Onset Parkinson’s SA private facebook group’s Sunday lunches
- Parkinson’s ACT (THRF) groups and calendar of events
Parkinson’s Queensland over 30 peer support groups across metropolitan and regional Queensland
Parkinson’s Tasmania support groups
National Parkinson’s InfoLine: 1800 644 189 to be connected to the state or territory you are calling from.

Your mental health matters

Loneliness and mental health are deeply connected. Unexplained depression and anxiety are recognised non-motor symptoms of Parkinson’s disease itself; they’re not just a reaction to the diagnosis, but part of the brain chemistry you now have. This means they deserve proper clinical attention, and some meds can help.

If you’re struggling with persistent low mood, anxiety, or feelings of hopelessness, please talk to your GP or neurologist as soon as possible. It could be a symptom or side-effect of medications and might have an easy fix.

A Mental Health Treatment Plan from your GP gives you access to Medicare-rebated sessions with a psychologist, typically up to ten individual sessions per year. Many psychologists also now offer telehealth, so driving and geography are less of a barrier than they used to be.

A social worker can also be invaluable for your care team. Not just for practical support with navigating the NDIS or carer financial supports, but for help in realising the emotional load of a chronic condition and the need to access community services you might not know exist.

In an emergency, dial 000 or contact Beyond Blue: 1300 22 4636 | beyondblue.org.au Lifeline: 13 11 14 | lifeline.org.au

A note on care partners & family

If you have a care partner, family member, or close friend who supports you, they can be a big part of managing loneliness, but it’s also worth being aware that care partners often experience isolation of their own, which can lead to carer burnout. Sharing the load of appointments and activities with friends and family, or even a regular companion driving service, can have connection-building benefits for the both of you.

Encouraging your care partner to access their own support, through Carers Australia, local carer support groups, or their GP, means the whole household has a better chance of staying well and connected. Carers Australia and the Carer Gateway (1800 422 737) offer free support, counselling, and respite services for carers across Australia.

You don’t have to do all of this at once

Managing loneliness is not about filling every hour or forcing yourself to be social when you’re fatigued or having an “off” day. It’s about keeping small, consistent threads of connection woven through your life.

Pick one thing from this article. Try it for a few weeks. See how it feels. Then add another. Connection, like exercise, tends to build on itself because the more you have, the more you want.

And if it feels hard right now? That’s okay too. Reach out to your GP, support worker, mental health services or the YOP community. Someone will help you find the next step.