Grandma, Can You Play?

As my symptoms progressed and became more apparent, I wanted to explain my Parkinson’s disease to my 6 grandchildren. They range in age from 5 to 20 years old. I have always believed in answering questions truthfully while considering the child’s age and maturity level.

Discussing Parkinson’s with young kids

I already had stair climbers inside and outside. I used walkers due to another movement disorder. Therefore the transition to discussing Parkinson’s was natural.

The 5 and 7 year olds had questions about why I didn’t drive anymore or use the stove. The 9 year old wanted to know what all the medications were for. I answered all their questions and told them that there was a lot I could still do. My goal was to reassure them that I was the same person inside.

We could still do most of the fun activities we always had done. We can still bake cookies as long as someone else mans the oven. We do crafts, read stories, play with blocks, etc.

Amazon has several books that are age appropriate and explain Parkinson’s in simple terms. My favorite is The Tale of a Parkie Princess: A Chronic Illness Described in a Fairy Tale, by Annie Konopka. All 3 of the little ones decided to write grandma’s story. It is titled: Our Grandma Has Parkinson’s and Super Powers!

Having the conversation with teens

The discussion with the 13 and 15 year old was much more difficult. Their questions were focused more on the illness itself and what it meant for the future. The 13 year old wanted to know if I was going to die soon.

She had visited me in the hospital pre-COVID when I had fallen and broken my femur. She was traumatized by seeing me under those circumstances. I have shared the positive information from The Every Victory Counts Manual from the Davis Phinney Foundation.

She, my 15 year old grandson, and I talked about all the symptoms that I do not have and may never develop. They both seemed to be less stressed by getting a better perspective of the condition.

I shared some success stories from my support group with the members permission. We agreed to do any online research together. The Davis Phinney Foundation for Parkinson's also has many suggestions for how to introduce Parkinson’s to teenagers in particular.

Talking to a young adult

I approached my 20 year old grandson by asking him what he knew about Parkinson’s. I was impressed with how much he already knew.

Having seen a recent interview with Michael J.Fox, he was aware of the progressive nature of the disease. He wanted to know what the tremors felt like. Was I frustrated by what I can no longer do? That led to a wonderful discussion on the importance of maintaining a positive outlook and a sense of humor.

I am grateful for the opportunity to talk openly with my grandchildren. They can ask me anything and I will always answer them to the best of my ability.

How have you approached discussing Parkinson's with children, teens, or young adults? Share your experience below!