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Parkinson's — books for children
Gill Lea-Wilson, whose mother had Parkinson's disease, and her children Jack aged 13 years, and Maya aged 10, from London, UK, review a new set of books for children from the Parkinson's Disease Society (February 2008). My dad has Parkinson's; My mum has Parkinson's; My grandad has Parkinson's; and My gran has Parkinson's. Available from www.parkinsons.org.uk. Tel: 0808 800 0303.
Although Parkinson's disease is more common among older people, the Parkinson's Disease Society (PDS) estimates that there are about 6,000 people in the UK aged under 40 living with Parkinson's, which will inevitably include parents of younger children.
New illustrated books
My mother had Parkinson's for the last 10 years or so of her life, since about the time my first child was born. My children and I reviewed a new set of four illustrated books aimed at children aged three to seven years, to help them understand what Parkinson's is.
The books aim to explain some of the symptoms they may have seen in their parent or grandparent, and to give some reassurance. The four titles mean that a child can read the story that relates to their situation.
Each book is in the form of a short illustrated story. There is a different illustrator for each book, each with varying styles, but all four use animals to depict family members. In general, Jack and Maya liked the illustrations and felt the books would be appealing to younger children. Maya definitely had a favourite, the giraffe family in the mum book, and said “I really like the illustrations”.
The stories in all four books are very similar, covering the same points for the different family situations. They are told from the point of view of a child who is trying to make sense of why their parent or grandparent has changed and is not able to do the things they used to. Much of the story consists of a conversation that takes place between the child and one of their parents while preparing a meal. The child asks questions about the other parent or grandparent with Parkinson's, and their parent provides answers and reassurances. So while not much actually happens in the story, this format does allow for many questions to be raised and dealt with.
I think we all agree that these would be useful and appealing books to inform children about Parkinson's. A final word from my assistants — Maya: “It's a good way of explaining to small children”; Jack: “I think the books will help young children to understand what Parkinson's is and they would probably answer all the questions that I might have”.
Other publications
The PDS also publishes Parkinson's — the facts, a factsheet for teenagers; and One in twenty: an information pack for younger people with Parkinson's, which has a section called “Being, and becoming, a parent”.
Younger Parkinson's Network
Younger Parkinson's Network is a volunteer group within the PDS, which publishes a magazine, YAPmag, and has local support groups around the UK.