Why does mom shuffle and stagger when she walks? What makes grandpa’s hand shake? Will grandma die of Parkinson’s disease (PD)?
When there is a diagnosis of Parkinson’s disease in the family, these questions may be on everyone’s minds. If we imagine the experience through the eyes of a child, it is easy to see how such questions can be even more overwhelming.
And while we may want to shield children from the facts, it turns out (according to a recent survey) that 40 percent of children want more information about Parkinson’s. Open communication is key to easing their worries and helping them cope with the disease.
That’s why just a few months ago, PDF partnered with Elaine Book, M.S.W., R.S.W, to host a special webinar discussing this topic. It provides a host of practical tips for talking to children and helping them to understand Parkinson’s disease.
And it is why, in recent months, PDF has been excited to see new books and articles covering this often overlooked topic. For instance, just a few weeks ago, Soania Mathur, M.D, a mother living with young onset Parkinson’s disease, announced two new illustrated children’s books she has written, the first My Grandpa’s Shaky Hands, and the second, Shaky Hands — A Kid’s Guide to Parkinson’s Disease. Her books are designed respectively for pre-schoolers and elementary school children, and aim to help get the conversation going between adults and children.
Not only that, Dr. Mathur’s books become the third and fourth in this genre in the past two years. In 2013, Kirk Hall, a PDF Research Advocate living with Parkinson’s, published his children’s book Carina And Her Care Partner Gramma, as a follow-up to his first, Carson And His Shaky Paws Grampa. His latest story is designed to help young children understand Parkinson’s symptoms and how care partners help their loved ones.
If we imagine how a Parkinson’s diagnosis in the family might be perceived through the eyes of a child, we can easily see that it is only natural to fear the unknown. And just as knowledge is power for adults, so it is for children. And luckily, now there are several resources to help answer children’s questions as they arise.
What do you think? How have you helped your children cope with PD?
View PDF’s free resources below and a blog post by PDF Research Advocate Maria De Leon, M.D. to help address your children’s concerns.