I recently read – and reviewed – a book that had a character with Parkinson’s in it. He was a minor character, it is true, and an elderly gentleman, which does not break any stereotypes, but he was there, he was fairly represented, and, in fact, he led the main characters to an important clue.
“A pensioner […] Jarl Hammar is a thin man who is clearly suffering from Parkinson’s disease. He is neatly dressed in a cardigan, with a handkerchief knotted around his neck.”
– Lars Kepler, The Hypnotist
Awakenings is an extraordinary and remarkable book, but it is not an easy read – not least because of the depth of medical detail included (although this is alleviated by Sacks’ skillful writing). It is also emotionally challenging – particularly when you, or someone close to you, has Parkinson’s.
Of course, most of the people described in this book do not have Parkinson’s. They have Parkinsonism, which is a term used to denote “symptoms similar to those described by Parkinson”, and their symptoms are frequently much more extreme than those experienced by people with “ordinary” Parkinson’s Disease. These people are the survivors of a mysterious “sleepy sickness”, encephalitis lethargica, that struck in 1916-17 and ceased – suddenly and mysteriously – in 1927. Some had apparently recovered completely, only to relapse in later life into a form of torpor that necessitated hospice care. By the 1960s, there were several groups of these patients in a number of institutions around the world. Oliver Sacks, a neurologist, worked with one of the largest of these groups in a hospital in the United States; in 1969 he was instrumental in prescribing what was then a new drug, L-DOPA (levadopa), to these patients, and witnessed their extraordinary “awakenings” from their illness – and their subsequent “tribulations”, caused by the drug.
The book’s core – and its most readily digestible part – is the series of case studies that make up the majority of its pages. These tales were controversial in academic medical circles at the time of publishing (they were seen as being overly anecdotal, too subjective), but they account for the book’s popularity and longevity – and, of course, for the many adaptations that have been made of it, from documentary to stage play (Harold Pinter’s A Kind of Alaska) through to the well-known film starring Robert De Niro and Robin Williams.
Sacks, who worked with these patients for many years, tells the tales succinctly but with great empathy and sensitivity. He also presents the medical background and, from the 1990 edition on, discusses the history of the book and its legacy. He talks about “Parkinsonian Time and Space” – which seems to be highly mutable and to have only a passing resemblance to “normal” reality (it sounds very redolent of a science fiction novel, but the subject is just to big to treat in parentheses) – and suggests that chaos theory may be a useful tool in investigating the condition. All of this is genuinely fascinating, but does require the reader to paying proper attention.
There are a few case histories of people with Parkinson’s included in the book. Sacks refers to them as having “normal” Parkinson’s, and is careful to note the differences between the “enkies” (the jocular term used in the book to describe sufferers of post-encephalitis lethargica) and the “parkies” (an equally jocular term, but not one used in the book). The enkies tend to have very extreme symptoms, from which their awakenings are very dramatic. They also tended to crash into the tribulation phase very quickly, but, should they manage to reach an “accommodation” with the drug, the non-progressive nature of their condition meant that the accommodation, or compromise between their illness and the drug-induced tribulations, could be maintained almost indefinitely.
In the third part of the book, “Perspectives” (after the case histories), Sacks says, by way of reassurance, that:
the patients considered in this book do not constitute […] a ‘fair sample’ of the Parkinsonian population at large; the fact that many of our patients have run into exceedingly severe, complex and intractable problems is an index of their situation, which is far worse, in almost every way, than the situation of their more fortunate Parkinsonian brethren outside institutions. Their reactions to L-DOPA, in almost every way, are hyperbolic and extreme […] [Q]uantitatively, their reactions far outstrip in magnitude those likely to e seen in the vast majority of Parkinsonian patients, but the quality of their reactions is the same, and casts light on the reactivity and nature of all Parkinsonian patients, and of all human beings.
I do kind of wish that I had read that sooner (although something of the kind had been intimated earlier).
Awakenings is a highly complex book, and I am aware that I have scarcely expressed an opinion beyond the opening paragraph’s “extraordinary and remarkable”. It is extraordinary; it is remarkable; and I would wholeheartedly recommend it to all inquiring minds – with the caveat that some of the real life stories related within are potentially upsetting, especially if you are affected by Parkinson’s. I was frequently moved to tears, but as I progressed through the book, those tears were less in fear for my own future – remember, I have not taken L-DOPA at the present time, although I am fully aware that it is almost inevitable that I will, one day, need to take it – and more in sympathy with the people whose lives are described.
Awakenings is well worth the effort required to read it. It is not a dense, heavy-going medical text; Sacks is an excellent writer whose humanity and compassion shines through. His text is a paragon of science writing; it is literate, well formed, and is pitched just right – it neither patronizes the reader nor does it leave key concepts unexplained (there is a glossary included at the back of the book, but most of the terms were explained in context and I did not, personally, feel the need for it). L-DOPA is not the miracle drug that it was once believed to be; Sacks does not propose any alternative, but he does intimate that the experiences of his patients may prove helpful in future research on Parkinsonism. From a wider perspective, Awakenings helps the reader achieve a small insight into clinical neurology, and a much larger one into human nature – as all the best literature ought to do.
Buy Awakenings on Amazon.co.uk
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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.
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.
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 Amazon.com 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: www.whoispeedee.com 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.
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:
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.
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.
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.
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