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Caring for the Care Partner

01/11/2024 2:40 PM | Anonymous

Caring for the Care Partner: A Two-Way Street in Young Onset Parkinson's

Living with Young Onset Parkinson's (YOPD) is a journey, and it's one you rarely take alone. Whether you're the person with YOPD or the amazing human beside them, the road can be filled with bumps, triumphs, and everything in between. But here's the thing: it doesn't have to be a solo trek. In this two-way street called YOPD, strong care partners and mindful people with YOPD make the journey smoother for everyone.

For the Care Partner: Supporting with Strength and Grace

Being a care partner is a role filled with love and resilience, and can sometimes be overwhelming. But guess what? You, the rockstar care partner, are vital to this journey. Your support, love, and unwavering presence can mean the world to someone living with YOPD. But here's the catch: you can't pour from an empty cup. Taking care of yourself is just as crucial as taking care of your loved one.

So, how do we find the balance between helping your loved one and taking care of yourself? How do we stay strong, mentally and physically, while ensuring our loved ones with YOPD feel supported and appreciated? Buckle up, because we're diving into the world of two-way care in Young Onset Parkinson's.

Here are some tips to navigate this path with both mental and physical strength:

  • Embrace the Team Spirit: Remember, you're not alone! Connect with other YOPD care partners through online communities like YOPN or local support groups. Sharing experiences and tips can be a lifesaver.

  • Prioritize Your Wellbeing: Self-care isn't selfish, it's essential. Schedule "me-time" for activities you enjoy, whether it's a brisk walk, a yoga session, or simply curling up with a good book. A recharged you is a better support system.

  • Communicate Openly and Honestly: Talk to your loved one with YOPD about their needs and preferences. Don't be afraid to ask for help – that's what teams are for! And remember, it’s okay to ask for clarification. Clear communication avoids misunderstandings and strengthens your bond.

  • Fuel Your Body, Fuel Your Mind: Eating healthy, exercising regularly, and getting enough sleep are non-negotiables. These nourish your body and mind, giving you the stamina to face anything YOPD throws your way.

  • Set Boundaries, Embrace Support: You're not alone! Don't be afraid to say "no" when you need a break. Lean on family, friends, and support groups. Remember, asking for help is a sign of strength, not weakness.

  • Invest in Knowledge: Learn about YOPD, its symptoms, and available treatments. The more informed you are, the better you can navigate its challenges and support your loved one effectively.

  • Celebrate the Victories, Big and Small: Every positive step, every smile shared, every hurdle overcome – these are victories worth celebrating. Acknowledging progress keeps spirits high and fuels the journey forward.

  • Embrace Your Own Journey: YOPD impacts everyone differently. Allow yourself to feel your emotions, and remember, it's okay to grieve, to be frustrated, and to have moments of doubt. Seek professional help if needed, and prioritize your own mental well-being.

for the Person with YOPD: Showing Appreciation and Respect

Living with YOPD can be isolating, but remember, your care partner is in your corner. 

Here are ways to show your appreciation and keep the two-way street thriving:

  • Express Gratitude: A simple "thank you" goes a long way. Let your care partner know how much you appreciate their support, big and small gestures alike.

  • Communicate Your Needs: Don't bottle up your frustrations or challenges. Open communication lets your care partner understand how best to support you.

  • Be Patient and Understanding: YOPD can be unpredictable. Be patient with yourself and your care partner, and remember, everyone is doing their best.

  • Stay Involved in Decisions: As much as possible, be involved in discussions about your care plan and treatment options. You're the captain of your own ship, and your voice matters.

  • Offer Help In Return: Even with YOPD, there are things you can do. Maybe it's folding laundry, making coffee, or simply offering a listening ear. Sharing the load strengthens the partnership.

  • Celebrate Together: Share your victories, big and small, with your care partner. Their happiness is your happiness, and vice versa.

  • Respect Their Boundaries: Your care partner needs time for themselves too. Respect their need for breaks and don't guilt them for taking time for their own well-being.

  • Remember, You're Still You: YOPD may be part of your journey, but it doesn't define you. Keep your passions alive, engage in activities you enjoy, and remind yourself and your care partner that you're still the bright, vibrant individual you've always been.

The YOPD road may have its twists and turns, but with mutual respect, open communication, and a commitment to well-being, care partners and people with YOPD can navigate it together, stronger and more united than ever.

To the care partners: Thank you for being the unwavering heroes of these YOPD journeys. Your dedication and love are both an inspiration and invaluable. Remember, you, too, are not alone in this. The YOPN community offers a space for knowledge, resources, and support waiting to embrace you. 

Together, let's make this two-way street of YOPD a journey of shared strength, resilience, and unwavering love.

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Young Onset Parkinson’s Network is sponsored in part by a grant from the Parkinson’s Foundation.

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