Living with Parkinson’s | Bryce Perry9 Nov

What Parkinson’s Care Partners Are Afraid to Admit

“I love you with everything I have, but sometimes living beside Parkinson’s is really hard.”

Those are words many care partners feel but rarely say out loud.

We talk about medication, appointments, symptoms, and helping the person we love. But what about our own fears, exhaustion, frustration, and the feelings we're sometimes afraid to admit?

In this special episode of Living with Parkinson’s: The Good, the Bad, and the Reality, I'm stepping aside and handing the microphone to my wife, Carmen, for an honest conversation about what it's really like being a Parkinson’s care partner.

Carmen shares the things care partners don't always say:

• “I'm scared too.” The worry about what Parkinson’s may bring next.

• Always watching: Constantly noticing changes, potential falls, medication timing, and safety concerns.

• Knowing when to help: Balancing the desire to protect someone with respecting their independence.

• Feeling frustrated: Why loving someone doesn't mean you never get irritated or overwhelmed.

• Grieving the future you imagined: When Parkinson’s changes plans, dreams, and expectations.

• Feeling helpless: When you desperately want to fix something that love alone cannot fix.

• Protecting your relationship: Remembering you're still partners, not just a patient and caregiver.

• Taking care of yourself: Why care partners need their own friendships, happiness, rest, and support.

And then Carmen talks about one of the hardest feelings to admit:

Resentment.

Sometimes you resent Parkinson’s. Sometimes you resent the responsibilities. And sometimes you even feel frustrated with the person you love.

Having those feelings doesn't mean you've stopped loving them.

Carmen also shares something deeply personal. She never knew me before Parkinson’s. But that doesn't mean she hasn't experienced grief over the future we imagined together.

Because Parkinson’s doesn't just affect the person diagnosed.

It affects the relationship, the household, and the person standing beside them.

And Carmen's message to care partners is one I hope everyone hears:

“You don't have to be perfect to love someone well. You just have to keep choosing the person again and again.”

Carmen-ism of the Episode

"Sit down before gravity makes that decision for you." 😂

The Message of the Episode

"Parkinson’s may live in our house, but it does not get to own the relationship."

For more Parkinson’s tips, tools, and community support, visit:🌐 ⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠https://dolifetoday.com⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠⁠

You’ll find guides, community resources, and practical strategies to help you keep doing life today.

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“With Parkinson’s, medication is like coffee. It’s not about how strong it is. It’s about when you take it.”

⚠️ Important Note

This is my personal Parkinson’s journey. What works for me may not work for everyone. Parkinson’s is different for each person, and medication plans should always be discussed with your doctor or healthcare provider.

#Parkinsons #ParkinsonsDisease #ParkinsonsIsolation #LivingWithParkinsons #ParkinsonsPodcast #ParkinsonsSupport #ParkinsonsTips

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