Blogging with Parkinson's

A personal perspective on Young Onset Parkinson's

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The Tale of a Parkie Princess, by Annie Konopka

Further to my posts about books about Parkinson’s for children, I have now received a copy of Annie Konopka’s “The Tale of a Parkie Princess”.

It’s a simple tale, and it seems to be aimed mainly at younger girls, although that doesn’t exclude younger boys (many of whom, untainted by society’s expectations, are quite happy to like pink and identify with female characters). The illustrations are by the author’s own children, which is sweet.

The explanations are simple – “[The doctor] told her that her brain was not working as it should, but he could give her some medicine to make her feel better” – and the drugs do, apparently, work, although they still leave Princess Parkinsonia (who is a mummy) shaking a bit, walking funny and unable to “do things as she did before…”

But everybody loves her, and love is all-conquering in fairy tales, so there is a happy ending even though she doesn’t get better (after all, how could she?).

I’m a bit ambivalent about this book. I’m trying really hard not to be annoyed by the occasional grammatical slip or that rather pointless collection of stray exclamation marks on page 9. So, ignoring that, and thinking only about the story, I find it insubstantial but appealing. My daughter loves it, and my son (who is 7) seems rather fond, too. I think that it does a good job of targeting the younger age group, and it isn’t sad and depressing. It refers to a parent – specifically a mother – with Parkinson’s, and it doesn’t feel like a rewrite of a book about a grandparent (because, of course, it isn’t). It mentions diagnosis, and expresses how shocking that can be (that’s where those exclamation marks were), and it refers exclusively (albeit obliquely) to the early stages of Parkinson’s. Which is fine, because children are not that young for very long, and their parent is unlikely to have progressed significantly during the time that they are so very young.

“The Tale of a Parkie Princess” is a good book for younger children whose parents are affected by Parkinson’s , but I don’t consider it to be essential.


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Children’s Books about Parkinson’s (part 2)

In my last post, I talked about explaining Parkinson’s to young children and discussed a couple of children’s books published by the charity Parkinson’s UK. I have been fortunate to have been loaned a couple of other books for children on the subject, and these are discussed below.

  • Rasheda Ali, the daughter of Muhammad Ali, has written an excellent reference work:

I’ll Hold Your Hand So You Won’t Fall: A Child’s Guide to Parkinson’s Disease"", by Rasheda Ali-Walsh

Although not close to her father at the time of his diagnosis at the age of 42, Rasheda has since become more involved in his life. This book was written, in part, to attempt to answer the questions that her own children had about their grandfather’s condition.

This book deals mainly with the more severe problems that Parkinson’s can cause. I do think that it does so very well, but I also think that it could be confusing and potentially scary for younger children who have only encountered the earlier symptoms. No age guidance is included, but I would guess that this book would come into its own for children aged 8 or older. To be honest, I imagine that it would also be useful for an adult.

There is a lovely interview with Rasheda here.

  • Kay Mixson Jenkins, who developed Parkinson’s at the age of 34, wrote her book, Who is Pee Dee, for her own four year old link

Who is Pee Dee?, by Kay Mixson Jenkins

Colt’s mother has Parkinson’s, but he doesn’t understand. He overhears the grownups talking about ‘PD’ (Parkinson’s Disease), and, somehow, his toy – a panda bear – becomes conflated with the condition. The toy comes to life and, without denying responsibility, explains some of the symptoms – which manifest as Pee Dee’s brightly coloured cousins – and describes how Colt can help his mother.

The reviews on are laudatory, but I have to say that I find this book a little confusing. It is a very imaginative way of dealing with the condition, and I must confess that I have not yet read the book to either of my children, but I am not sure how they will take it.
*See my comment below*

I’ll also admit – and I feel slightly embarrassed by this, because I don’t think it should matter at all – to disliking the illustrations. They are bright and colourful, and maybe it is only me who is bothered by the squashed faces, stiff figures and general awkwardness.

Note: The edition that I have to hand has a Web address on the back: but, sadly, it seems that the site no longer exists.

Additional Note (post script): A Web edition of the book, read by a lady with an English accent, is available as a resource at the pan-European site, Parkinson’s Voices.

While researching this post, I also came across another children’s book, entitled “The Tale of a Parkie Princess” by Annie Konopka. Edit: You can read my review of that book here.

I really ought to steel myself to reading some of these books with my children. I think I’ll find it harder than they will.

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Children’s Books about Parkinson’s (part 1)

Following on from my last post, another difficult topic that a young child may need to begin to understand is, of course, Parkinson’s. Particularly if a parent has Young Onset Parkinson’s. I don’t know how much they need to understand; of course, it depends on so many factors: the age and maturity of the child, the nature of the parent’s symptoms, and, of course, how ‘open’ the parents choose to be.

So far, I have talked to my children about my ‘poorly arm’, and how it doesn’t work as well as it used to. This is the most obvious aspect of my condition, and both children (ages 6 and 4) accepted my simple explanation, which (in its extended version) included an analogy with a computer. They also seem to accept that it isn’t going to get any better, and that mummy can’t help them much with buttons or shoelaces (I can just about do my own laces, but somehow it is much harder to do someone else’s).

There does not seem to be a glut of books about Parkinson’s for children. These are the ones that I have read:

  • Virginia Ironside, agony aunt, columnist and author, has written a story for children aged 3-7 that is published by Parkinson’s UK in four versions:

My Dad has Parkinson’s
My Mum has Parkinson’s
My Grandad has Parkinson’s
My Gran has Parkinson’s

I have seen My Mum… and My Dad… , which are basically the same, with superficial differences in the text. Parkinson’s is explained to a fictional child by the parent without the condition, and the afflicted character doesn’t really do anything and does not have a voice in the story.

The explanations are good, although a bit lengthy for a 3-year-old, and the story is quite upbeat as the child is reassured at the end.

Virginia Ironside’s books are available free of charge from the Parkinson’s UK Web site.

  • Parkinson’s UK also publish the following story for slightly older children (ages 8 to 11):

Karen Goodall, My Mum has Parkinson’s

I like this book very much. It is written by a primary school teacher who has Parkinson’s herself, and it does a pretty good job of describing the early stages of Parkinson’s from the point of view of her daughter, Megan. Megan has an older brother and a younger sister, and their mum is a single parent. Megan’s voice is cheery and chatty. Megan’s mum is portrayed as being capable and independent despite the difficulties she encounters.

Karen Goodall’s book is available free of charge from the Parkinson’s UK Web site.

This post is getting a little long. I’ll talk about a couple more books – both published in America – in another post.

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Children’s Books: Difficult Subjects for the Very Young

Many topics have been covered in children’s books. Sometimes, fiction is the best way to understand something – it can help both children and adults come to terms with difficult situations. Of course, this doesn’t preclude non-fiction; sometimes a clear explanation is all that is required.

I think that the really ‘heavy’ topics are very difficult to address for very young children. Of course, many would argue that the very young do not need to understand this sort of thing, but there are circumstances that seem to require accelerated understanding. Small children can, also, be surprisingly open to understanding. In many cases, the difficulty lies in finding an appropriate way to introduce such a topic, and this is where parents and carers may find a book useful as a prop.

One of the most dramatic topics that a young child may need to understand is that of death.

My son was just three when one of his young cousins died. I discovered then that the available books for his age dealt largely with the deaths of older relatives or of pets. It isn’t surprising; these are probably the most likely losses that a child will have to deal with, and, to be honest, a book about the death of a young child could be disturbing to the writer, the reader and the listener.

We settled on a book called Badger’s Parting Gifts, by Susan Varley. It’s a gentle, secular exploration of what the loss of a valued member of a community means to those left behind. Another book that was recommended to us at the time was Goodbye Mog, by Judith Kerr, the last in the series of Mog the Cat books.

My next post discusses children’s books about Parkinson’s.