Reaching the milestone of becoming a grandparent with Parkinson’s

Columnist Lori DePorter looks forward to life with her newborn granddaughter

Lori DePorter avatar

by Lori DePorter |

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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.


Michael Krukar avatar

Michael Krukar

What a beautiful article ‘Nonni’. You are a leader in aging with Parkinson’s. My wife and I are expecting our first Great grandchild this year.
We are very excited. At 66 years old it is very important for me to realize their is a future that I must keep striving for. Thank you Lori for the reminder of the future with Grandkids. Blessings, Mike

Lori DePorter avatar

Lori DePorter

Thank you, Mike! Yes, she is a blessing!

Marilyn Diane Armijo avatar

Marilyn Diane Armijo

Hello! Here I am up at 3:am as I woke up, arm is shaking. I just started worrying again about my diagnoses with P D. I have so much to say but maybe will write more later. My tremor went away after being up a bit but my hand is still dancing!
I was told 14 yrs back my Essential would not turn into P D. I was losing my ability to paint, as I am an artist. I kept going tho, it took me longer. Now my left hand is worse. I went to my Doctor Neurologist, it had been 13 yrs since I was there last and he said I have P D. I cried a whole lot. For weeks off and on. That was 7 mo. ago. I refused to take meds since they really have no answers on what causes it. The side affects!!! No way plus they can help only for 2 yrs. I am a walker for yrs and lift light weights to keep strong as I am aging. I am a small-boned women, so it is important. Then I thought to take up BOXING. I always wanted to get a bag and gloves. My husband set me up in the garage. I LOVE it. I listen to my favorite tunes to box to. STARSHIP is an oldie but goodie and I love Mickie Thomas's voice. I am nearly 72 yrs old now. It is good for the CORE, the Heart & the Brain!! My husband David is proud of me as well as our son and two grandsons. All my friends are amazed! They say YOU GO GIRL!! They need more testing for it, plus other diseases.
Thank you! Marilyn

Lori DePorter avatar

Lori DePorter

Thank you for sharing Marilyn - I am proud of you too - it's great to meet another Parkinson's Punching Grandma! How many more are out there?

Pam avatar


Congratulations on your new grand baby! I found in talking a little about my occasional shaking with my amazing 3 year old granddaughter, that she was much more concerned that the shaking might be hurting me, and once I assured her it wasn’t, she was fine with it.

Lori DePorter avatar

Lori DePorter

Hi Pam

I had a YOPD dad tell me his son thought PD "hurt" and he was ok once he knew Daddy wasn't hurting. Kids are smart - they don't miss anything. Thanks for sharing and enjoy your granddaughter.



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