Reaching the milestone of becoming a grandparent with Parkinson’s

Becoming a grandparent while I have young-onset Parkinson’s disease is a milestone, and life with Parkinson’s is all about celebrating one day, one goal, and one milestone at a time.

Diagnosed at 45, I prayed to God to help me be a good mom and, eventually, a fun grandmother. Raising three boys and knowing the men they have become have been so fulfilling. And now, after 10 years of practicing to be a grandparent (“nonni”) with Parkinson’s, it’s finally happened.

My husband and I became grandparents when our first granddaughter was born last week. My heart overflows to see my son and daughter-in-law’s joy as first-time parents. It’s time to share my heart and be my granddaughter’s cool Nonni Lori. I want us to play, get messy, and eat ice cream for breakfast.

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Each new milestone in life, from graduations and weddings to each new grandchild, also brings me back to the bargaining table. Progression is a nonnegotiable part of Parkinson’s, so my symptoms and abilities are constantly changing. Although I do everything, including dancing and boxing, to stay strong, I cannot regain what I’ve lost.

The time will come when my curious grandchildren notice my motor symptoms and wonder why Nonni moves slowly or shakes sometimes. The answer doesn’t have to be complicated. Following are a few practical tips from the Michael J. Fox Foundation for Parkinson’s Research.

• Keep information age appropriate. Decide how much to share and when. Symptoms that are bothersome now may be irrelevant later.
• Use simple language. Most of us in the Parkinson’s community know that bradykinesia means we’re slow, but it can be a big and scary word for children. “Nonni walks slowly” might work better instead. “Wiggle” could work for dyskinesia, a term for uncontrollable movements.
• Prepare for questions, because children may have many, but also learn the art of deflecting. It’s not necessary to answer all of their questions at this very moment.
• Prepare for their reactions. The diagnosis was scary for us, and it may be scary for them as well. However, they may also be indifferent. Don’t be offended. After all, they don’t know us any other way.

As a veteran parent with Parkinson’s, I’ve learned that children are resilient and will follow an adult’s lead. I’ve learned to be honest and genuine with my sons and myself.

As a rookie grandparent, I’ll embrace every moment and wear my heart on my sleeve. Today, my granddaughter and I are enjoying quiet times in the rocking chair, and one day, we’ll dance like no one’s watching. However, the best is yet to come. What’s cooler than miniature boxing gloves and a Parkinson’s-punching nonni?

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.