Many people living with YOP say that their relationships became stronger over time.

With understanding, support, and a bit of patience, it’s possible to build deeper connections and face Parkinson’s together.

When you’re diagnosed with young onset Parkinson’s, it doesn’t just affect you; it affects the people around you, too. Your relationships with your partner, family, friends, and carers may change in ways you didn’t expect. That’s normal. But with the right support and open communication, strong relationships can help you face the challenges of Parkinson’s together.

If your friend has been diagnosed with Young Onset Parkinson’s, you might be wondering what to say, how to help, or what’s going to change. The truth is, your friendship still matters just as much, if not more.

Here’s how you can support your friend and feel confident doing it:

1. Stay connected

Don’t pull away. A simple message, a call, or a coffee catch-up can mean the world. Even if they say no sometimes, keep inviting them. Apathy is a challenge of Parkinson’s.

2. Learn a little about Parkinson’s

You don’t need to be an expert, but understanding the basics, like fatigue, movement changes, or “off” days, can help you be more supportive and less surprised.

3. Ask, don’t assume

Everyone’s experience is different. Ask how they’re feeling, what they need, or how you can help. Sometimes just listening is enough.

4. Offer practical help

Whether it’s driving them to an appointment, helping with errands, or just being there, small acts of kindness go a long way.

5. Be patient

Some days will be harder than others. If your friend cancels plans or seems different, try not to take it personally. Parkinson’s symptoms can fluctuate day-to-day or even hour-to-hour, so flexibility is key.

6. Keep things normal

They’re still the same person. Laugh, joke, share stories, just like you always have.

7. Support their carer too

If they have a partner or family member caring for them, check in with them as well. They need support too. Catch up for a coffee or lunch and let them share their experiences and feelings while offering their care partner a bit of respite.

8. Respect their independence

Offer help, but don’t take over. Let them lead the way in what they’re comfortable with.

9. Be flexible

Plans might need to change. That’s okay. Being understanding makes a big difference.

10. Remind them they’re not alone

Just showing up and being present can be the most powerful support of all.

REMEMBER: You don’t need to fix anything—you just need to be there. Your friendship can help your mate feel seen, supported, and strong.

Friends play a crucial role in providing emotional support and a sense of normalcy. However, you might find it challenging to understand the daily struggles of Parkinson’s. Educate yourselvf about the condition to foster empathy and patience.

When someone in your family is diagnosed with Parkinson’s, it can change the way your family works together. You might find yourself taking on new roles, sometimes as a carer, sometimes as a cheerleader, and always as someone who cares deeply.

It’s not always easy, but you’re not alone. Here’s how families can support each other and stay strong:

1. Talk openly and honestly

Share how you’re feeling and encourage others to do the same. Honest conversations help everyone feel heard.

2. Work as a team

Try to share responsibilities and make decisions together. Everyone’s role matters.

3. Create routines that work for everyone

Having a plan can reduce stress and help things run more smoothly at home.

4. Look after your own wellbeing

You can’t pour from an empty cup. Make time for rest, hobbies, and your own health.

5. Be patient with each other

Everyone is adjusting in their own way. Some days will be harder than others.

6. Join a support group

Talking to other families going through similar things can be a huge relief. You’ll get tips, support, and understanding.

7. Celebrate the small wins

Whether it’s a good day, a shared laugh, or a task completed, acknowledge the positives.

8. Support young family members

If you have children or teens in the family, help them understand what’s happening and give them space to talk. Check out supports and information for young carers.

9. Ask for help when you need it

You don’t have to do it all alone. Reach out to friends, neighbours, or services for support.

10. Stay connected as a family

Keep doing things you enjoy together, even if they look a little different now. Connection is key.

Family members often become primary carers, balancing their responsibilities with their own lives. This dynamic can strain family relationships, but maintaining honesty and seeking support are vital. Families should strive to establish routines and systems that work for everyone and consider joining care partner support groups to connect with others in similar situations.

Being a care partner to someone with Young Onset Parkinson’s is a big role—and it’s one that often comes with little warning. You might be helping with daily tasks, managing appointments, or simply being there through the ups and downs. It’s a role filled with love, but also with challenges.

Here’s what we want every care partner to know:

1. You are not alone

There are thousands of care partners across Australia walking a similar path. Reach out, connect, and share your story. Carers Australia and the Carer Gateway are great places to start. Don’t forget about your local state or territory Parkinson’s organisation, they can put you in touch with your local support groups.

2. Your wellbeing matters

Looking after yourself isn’t a luxury, it’s a necessity. You can’t care well if you’re running on empty.

3. It’s okay to feel overwhelmed

This journey can be emotional. Frustration, sadness, and even guilt are normal. Talk to someone you trust or seek professional support.

4. Ask for help

You don’t have to do it all. Whether it’s family, friends, or carer and NDIS and services, let others help you too.

5. Stay informed

Learning about Parkinson’s helps you feel more confident and prepared. Knowledge is power.

6. Keep your identity

You’re more than a care partner. Make time for your hobbies, friendships, and goals.

7. Celebrate the small wins

A good day, a shared laugh, a task completed, these moments matter.

8. Join a support group

Talking to other care partners can be a lifeline. You’ll find understanding, advice, and friendship.

9. Plan together

Work with your loved one to make decisions and set routines that work for both of you.

10. Be kind to yourself

You’re doing your best. That’s more than enough.

You are a vital part of the journey. Your care, strength, and love make a real difference, every single day.

Whether family members or professionals, carers face the demanding task of managing both physical care and emotional support. Carers need to practice self-care and seek respite when needed. Utilising available resources, such as respite care and counselling, can help manage the stress associated with caregiving.

  1. Talk openly – Share how you’re feeling and listen to how others are feeling too.
  2. Be honest about what you need – Let people know how they can help.
  3. Make time for connection – Even small moments together can strengthen your bond.
  4. Ask for help – Don’t try to do everything on your own. It’s okay to lean on others.
  5. Be patient – Everyone is adjusting in their own way.
  6. Seek support together – Counselling or support groups can help couples and families cope.
  7. Celebrate the good days – Focus on what you can still enjoy together.
  8. Stay involved – Keep doing the things you love with the people you care about, even if you need to do them differently.
  9. Educate your support network – Help them understand Parkinson’s and how it affects you.
  10. Look after yourself – Your wellbeing matters too.

  1. Pick the Right Time
    Choose a quiet moment when everyone is calm and you won’t be rushed. This helps your child feel safe and heard.
  2. Be Honest, But Keep It Simple
    Use clear, age-appropriate language. You don’t need to explain everything at once—just the basics to start.
  3. Let Them Know You’re Okay
    Say something like, “I have something important to tell you, but I’m okay.” This helps ease their worry.
  4. Show Your Feelings
    It’s okay to cry or feel emotional. It shows your child that it’s normal to have big feelings.
  5. Invite Questions
    Let your child ask anything they want. If you don’t know the answer, it’s okay to say, “Let’s find out together.”
  6. Reassure Them
    Children may worry about death or big changes. Reassure them that Parkinson’s isn’t something you’ll die from suddenly, and that your care team is helping you stay well.
  7. Keep Life as Normal as Possible
    Stick to routines and enjoy time together. Even if you’re tired, cuddles, movies, and chats still matter.
  8. Talk About What Might Change
    Explain gently if you’ll need surgery, rest, or help from others. Let them know who will look after them and how long you’ll be away.
  9. Involve Them in Small Ways
    Let them help with little things like bringing your water bottle or reminding you about medicine. It helps them feel included.
  10. Build a Support Circle
    Let your child know who they can talk to, like a teacher, school counsellor, or family friend. You don’t have to do this alone.

Why relationships matter

Strong, healthy relationships give you emotional support, practical help, and a sense of connection. They remind you that you’re not alone. Whether it’s your partner helping with daily tasks, a friend checking in, or a support worker helping in your home, these connections are key to living well with YOP.

Common challenges

  • Changes in roles – You or your partner might take on new responsibilities at home or work, but you can make things work in your new normal.
  • Emotional stress – Anxiety, frustration, or sadness can affect how you relate to others, but being open about this and having support is important for wellbeing.
  • Communication difficulties – Changes in speech or facial expression can make it harder to connect, but learning other ways to communicate can help.
  • Fatigue and energy levels – You might not always feel up to socialising or doing what you used to, but connection is as important as exercise.
  • Intimacy and closeness – Physical and emotional intimacy may change, and that can be hard to talk about but there are strategies to help you do this.

Shared activities

Engage in activities that everyone enjoys. Shared activities can strengthen bonds, whether a hobby, a sport, or simply spending time together.

Professional help

Don’t hesitate to seek professional help, such as counselling or therapy, to navigate the emotional complexities that come with Parkinson’s. A multidisciplinary care team is an integral part of any Parkinson’s journey. You will be with these practitioners for the long haul so you have to make sure they are a good fit for you and your partner.

Building and maintaining strong relationships can significantly improve the quality of life for everyone involved. Remember, it’s a journey you don’t have to walk alone.

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  • RELATIONSHIPS | Parenting with Parkinson’s

    Navigating the conversation about a YOPD diagnosis with your children can be daunting. How do you explain such a complex condition in a way that is both honest and comforting? Explore practical strategies to help you communicate with your kids, ensuring they feel supported and informed. From using age-appropriate language to addressing their fears and misconceptions, we provide a roadmap to foster open, empathetic dialogue.

  • RELATIONSHIPS | Effective Communication

    Strengthening relationships with Parkinson’s Clear and open communication is vital in managing any relationship, especially those affected by Parkinson’s. Effective communication is crucial in relationships because it helps both partners understand their needs, fears, and expectations. Parkinson's can bring significant changes, including difficulties with speech, movement, and cognitive functions, which can strain relationships. By maintaining [...]

  • RELATIONSHIPS | Let’s talk about relationships

    Relationships, sex and intimacy issues have been highlighted as key areas to consider for people with young onset Parkinson’s (YOPD). Some people are doing Parkinson’s solo, some are in long-term relationships, and some met their partner following their diagnosis. Changes in relationship responses and functions that come with YOPD can be a result of the [...]

Carer tips

  1. Keep walkways clear: Make sure floors are free from clutter, cords, and loose rugs. This helps reduce the risk of tripping or falling.
  2. Install grab rails and non-slip mats: Put grab rails in the bathroom and non-slip mats in the shower or bath. These small changes can make a big difference.
  3. Use good lighting: Make sure all rooms, hallways, and stairs are well lit. Motion-sensor lights can help at night.
  4. Encourage regular movement: Help your loved one stay active with gentle stretching or walking. Movement helps with stiffness and balance.
  5. Watch for changes in walking or balance: If you notice more shuffling, freezing, or falls, talk to a physiotherapist or doctor. Early support can prevent injuries.
  6. Support safe eating and swallowing: If swallowing becomes hard, a speech pathologist can help. Sit upright during meals and take small bites.
  7. Plan ahead for fatigue: Fatigue is common. Help plan the day with rest breaks and avoid rushing. Try to do harder tasks when energy is highest.
  8. Use assistive technology: Simple tools like walking sticks, shower chairs, or voice-activated devices can make daily life safer and easier.
  9. Stay calm during freezing episodes: If your loved one “freezes” while walking, don’t push or pull. Instead, try cueing them with a rhythm or stepping over a line.
  10. Look after yourself too: Your wellbeing matters. Take breaks, ask for help, and connect with care partner support groups. You’re not alone.

  1. Check out Carers Australia and the Carer Gateway:  learn what support, payments, and services you can get.
  2. Talk to your workplace: Let your employer know you’re a carer. Ask if they’re part of the Carer-Inclusive Workplace Initiative. There are tools to help them support you to stay in work longer.
  3. Ask friends for small favours: It’s okay to ask a friend to take your loved one out for a coffee or sit with them while you run errands. Even short breaks can help you recharge.
  4. Reach out to family: Don’t try to do it all alone. Ask family members to help with meals, transport, or just spending time with your person with Parkinson’s.
  5. Join a support group: Talking to other carers who understand what you’re going through can make a big difference. You’ll get tips, support, and friendship.
  6. Use respite care: Respite services give you a break while making sure your loved one is safe and cared for. Even a few hours can help.
  7. Speak to your GP: Take the carer check-in in the YOPX app and bring to your GP. They can help you find local services, mental health support, and carer health checks. Your wellbeing matters too.
  8. Ask for help with paperwork: NDIS forms, Centrelink, and medical paperwork can be overwhelming. Ask a support coordinator or social worker to help you through it.
  9. Let your community help: Neighbours, local groups, or faith communities often want to help but don’t know how. Let them know what you need. LACs can help you identify groups in your area as part of the community connections NDIS process.
  10. Say “yes” when help is offered: If someone offers to help, say yes—even if it’s just a meal or a chat. You don’t have to do everything on your own.

  1. Learn about the symptoms of YOPD and how they differ from older onset.
  2. Understand that symptoms can change over time and vary from day-to-day.
  3. Know the emotional impact of diagnosis on both your loved one and you.
  4. Learn about the stages of Parkinson’s and what to expect.
  5. Early lifestyle changes, treatment and support can make a big difference.
  6. Stay updated on new research and treatments.
  7. Understand how medications work and their side effects.
  8. Learn about non-motor symptoms like anxiety, apathy and sleep problems.
  9. Remember: Parkinson’s affects everyone differently. The Parkinson’s MOOC is a great place to start.
  10. Subscribe to Parkinson’s Australia’s newsletter and socials for updates and support.

  1. Self-care isn’t selfish. It’s essential.
  2. Take regular breaks to rest and recharge. Check out respite options.
  3. Set boundaries and say no when needed.
  4. Make time for things you enjoy.
  5. Stay connected with friends and family.
  6. Join a carer support group.
  7. Eat well and stay active.
  8. Try mindfulness or yoga to manage stress. Check out the Parkinson’s Australia YouTube channel for free videos.
  9. Keep a regular sleep routine.
  10. Ask for help if you’re feeling overwhelmed. Contact the Carer Gateway to register yourself as a carer and take advantage of their supports.

  1. Create a daily routine that works for both of you.
  2. Use reminders and visual cues for tasks.
  3. Break tasks into smaller steps.
  4. Encourage gentle movement and stretching.
  5. Use aids like walking sticks or voice-activated devices.
  6. Add home safety features like grab rails and non-slip mats.
  7. Plan ahead for outings and appointments. Use this checklist if your partner needs to be admitted to hospital.
  8. Keep a diary of symptoms to share with doctors.
  9. Be flexible, some days will be harder than others.
  10. Celebrate small wins together.

  1. Talk openly about changes and challenges. Effective communication techniques can help.
  2. Listen with care and empathy.
  3. Use clear, simple language.
  4. Give them time to speak and respond.
  5. Talk about changes in roles and intimacy.
  6. Spend quality time together.
  7. Seek counselling if needed. Explore how to deal with ambiguous loss.
  8. Join carer support groups.
  9. Encourage social activities and maintain your own.
  10. Respect your loved one’s independence and choices.

  1. Get a social worker in you care team early to help you navigate the systems.
  2. Learn how the NDIS can support you.
  3. Find the right health professionals (e.g. neurologists, OTs, AEPs, PTs, GPs).
  4. Keep track of appointments and reports with digital health tools.
  5. Know your rights as a carer.
  6. Ask for help with paperwork.
  7. Stay updated on NDIS policy changes.
  8. Connect with local support services.
  9. Use online forums for advice.
  10. Ask questions, don’t be afraid to speak up.

  1. Talk to your employer about flexible work options.
  2. Budget for care-related costs.
  3. Review your superannuation and insurance.
  4. Get financial advice if needed.
  5. Look into carer payments and allowances.
  6. Plan ahead for future care costs.
  7. Look at covering some school-related costs with a Young Carer Bursary if you have a child between the ages of 12-25.

  1. Explain Parkinson’s in a way kids can understand.
  2. Balance parenting and caring roles by making time for one on one time with each child.
  3. Help kids cope with changes at home as they may need to take on additional responsibilities.
  4. Keep communication open and honest.
  5. Talk to teachers and schools for support.
  6. Join family support groups or young carer groups.
  7. Plan fun activities everyone can enjoy.
  8. Teach kids about kindness and empathy.
  9. Be flexible with routines.
  10. Celebrate family milestones together.
Portrait of group of friends

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