Two Books Start Dialogue with Children About Parkinson's Disease

Even our youngest are affected...

For Preschoolers. Soania Mathur

Parkinson's disease is very difficult to manage at times given the vast array of symptoms that may be experienced. It is an illness that impacts us physically, emotionally and socially. It is also an illness whose impact is felt by those around us. The challenges of Parkinson’s disease extend beyond those diagnosed to the whole family, including those most vulnerable, our children.

Not sheltered from the reality of this disease, many children observe the challenges grandparents, other relatives and sometimes their own parent faces.

 Children may wonder why their loved one is acting a certain way? Why do they move like that? Why are they no longer able to do their normal activities? Why do they take so many medications? What's going to happen in the future? All these are normal questions that may arise in the mind of a child who is witnessing a loved one - parent, grandparent, other family member or friend - that is faced with the challenges of Parkinson's disease. And bearing witness to these changes if not explained, can lead to a normal fear of the unknown and anxiety.

As a physician, person living with Parkinson's and a mother of three daughters, I know that education is key for all those impacted by this disease. And I have written two books, “My Grandpa’s Shaky Hands” and “Shaky Hands - A Kid’s Guide to Parkinson’s Disease” to start a continued exchange of information on the disease and its effects in an age-appropriate and empowering way, to facilitate dialogue within families affected by Parkinson’s.

 Talking about the disease and what children can do, be it go for a walk with their loved one or be patient if activities take longer than expected, can make it less scary and give them a role to play in their parent or grandparents’ wellness.

Suitable for preschoolers, “My Grandpa’s Shaky Hands” honors the natural optimism that children innately possess by showcasing a child’s unwavering focus on the abilities of his hero, his grandfather, instead of on the disabilities that may be perceived by others.

It is also a touching tribute to a grandfather’s continued ability to find joy in his life and relationships despite facing the challenges Parkinson’s presents. This book is beautifully illustrated by Emmy Award-winning Hana Barbera illustrator and fellow Parkinson’s patient, James T. Walker.

“Shaky Hands - A Kid’s Guide to Parkinson’s Disease” is directed towards older elementary-age children. Since we fear what we don’t understand, this book serves to enlighten children about all aspects of this disease and to empower them to make a difference in their own families and the Parkinson’s community. It was written with contributions from my three daughters.

Education is an integral part of learning to cope with this disease. It is my hope that these books will not only serve as a catalyst for further conversations about Parkinson’s with the youngest members of families but will also capture their interest through the enchanting illustrations and optimistic messages. 

(There are other children's books on Parkinson's disease.

Please let me know which ones you have found the most helpful.)

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