Recognizing the love in a father-daughter ‘Batman and Robin’ story

“I would trade places with you,” my friend said. “You have Parkinson’s disease, but you also have people who love you. That matters.” I was speechless, but it’s true. We may take love for granted, but others notice it and wish they had it.

I chose this column for Alzheimer’s and Brain Awareness Month, now underway, when I wear purple and spread awareness for the more than 55 million people worldwide living with Alzheimer’s disease or another dementia. But also to share a story of the love for one another among my family, with my dad with Alzheimer’s and me with Parkinson’s.

We’re the Batman and Wonder Woman clan

My dad is Batman, and I’m the sidekick, Robin, in our disease-battling, dad-and-daughter duo. My sister, Lisa, and brother, Brian,  are also part of our heroic clan.

But my mom is Wonder Woman and, like all care partners, the team MVP. While she tries to do everything independently, she graciously accepts the extra support of extended families, friends, hospice, and home health aides who have become part of our Italian family. They love caring for Batman and helping Wonder Woman, a matriarch who hugs them and, like her own children, never lets them leave without eating “a little something.”

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I’m a wife and mother and cannot imagine the emotional roller coaster of my mom’s daily life. As a wife, she has been an example of unconditional love for over 60 years, even with the unexpected arrival of Alzheimer’s into their lives. As a mom, she’d trade places with me and take Parkinson’s from me. But it doesn’t work that way. Instead, she encourages me to stay in the battle even when it’s exhausting.

Her cross is daunting, but my mom’s faith never wavers. While she and I were listening to the audiobook “It’s Not Supposed to Be This Way,” the author, Lysa TerKeurst, talked about how one person’s suffering can bring good to another. My mom looked at me and said, “It’s true. Look at what you do for your dad and others with Parkinson’s.”

Finding the blessings in the burden

Taking care of myself and living with Parkinson’s have brought many challenges. But it’s also brought good into my life. I’ve met some of my best friends, it’s strengthened relationships, and it brought the duo of Batman and Robin. It’s given me more time with my parents than I would’ve had if my life were calm, cool, and collected.

Parkinson’s awareness and advocacy have become my passion and changed my life. I want to make a difference in the lives I’ve touched by sharing my story and encouraging others to do the same. Our stories are valuable, real-time, flawless data providing a window into life with Parkinson’s.

While there may be glimpses of my future self that may or may not include dementia, I take comfort in knowing that I’m not alone now and won’t be in the future. I have the Robin clan, my family, friends, and superheroes: my sons, daughters-in-law, precious grandchildren, and my husband, Mike.

There are blessings in the burden. Be grateful for them, especially your clan and your care partner, and the love you have for one another.

Let them know they matter by visiting our forums and sharing your story — and remember, your data are real and flawless.

Note: Parkinson’s News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Parkinson’s News Today or its parent company, BioNews, and are intended to spark discussion about issues pertaining to Parkinson’s disease.