How to explain Parkinson's disease to a child

Abstract

As hard as it can be to tell someone that a relative has been diagnosed with a serious health issue, to tell a child that a member of their family has a chronic degenerative disease, and to explain to them what that means, is likely to be all the more difficult. Anyone faced with this daunting conversation would be glad of an aid. Parkinson's UK's picture book My Grandad has Parkinson's is an honest and sensitive illustrated story that could help a young child to understand the changes they can expect to witness when someone important to them develops Parkinson's disease. Aimed at children aged 3–7 years, the book is written from the perspective of a grandfather recently diagnosed with Parkinson's disease as he explains to his grandson what they will both experience from the disorder. The grandfather describes the symptoms that he himself will begin to notice and how these might affect his daily life and his interaction with his grandson—eg, difficulties with eating and doing housework. The grandfather explains that he might find this frustrating, presenting the early symptoms as an annoyance. The grandfather relates symptoms in simple terms, comparing them to the child's early experiences, such as falling over when he was learning to walk, and describes similarities to and differences from how the child will sometimes feel. He warns about the freezing phenomenon, likening it to pausing a DVD, and explains what to do if this happens. Although the grandfather says that he might at times be upset or frustrated, the book's tone is calm and in control, and the symptoms do not sound distressing. What feels like the book's most important achievement is the emphasis that, despite the substantial changes on the horizon, the grandparent is still the same on the inside—important reinforcement for a child who might have to get used to seeing him look and behave very differently. The book lays out the realities of Parkinson's disease honestly, and isn't coy in preparing the child for what will happen. However, the picture isn't bleak; the life-changing symptoms are balanced by the emphasis that the grandfather wants to and will continue to be involved in his grandson's life as much as possible. Parkinson's UK has produced parallel books featuring a grandmother, a mother, and a father, to help ease the painful conversations that many families have to address.