Blogging with Parkinson's

A personal perspective on Young Onset Parkinson's


Sarah Nock’s “Ponderings on Parkinson’s”

I’ve been dipping into this delightful volume on and off for a few weeks now. It’s that type of book; you can tell from the title. Sarah Nock may not be a “Young Parkie” (she writes, at one point, of having become “embroiled with PD at the optimum age: l was still needed, perhaps, but I certainly wasn’t indispensable.” I’m not sure that she mentions the age at which she was diagnosed, but one gets the impression that she may have been in her 60s.

Reading this book is a bit like going back in time, to an indeterminate period when everybody was more polite than they are now, and ladies had companions. (Not that there are any ladies’ companions in the book, although  the author does have a part time job as a lady’s secretary, which is vaguely similar.) It’s like sitting down and having a delightful conversation with the author, listening as she meanders from one Parkinson’s-related topic to another. She is wryly amused by the bizarre symptoms she encounters, and full of advice for other Parkies. She seems particularly fond of her folding walking-stick-cum-stool, which I think is this model from the National Trust. She’s also a fan of selected alternative therapies, which are best left to her to tell you about, if you are interested enough to get hold of a copy of the book.

It’s by no means a depressing book; Mrs. Nock has either had a reasonably easy ride of it so far (and she’s 20 years or more along her journey) or is remarkably good at ignoring the worst (possibly for her readers’ benefit). It’s a very English book, with the sort of quaint Englishness that Americans admire and which, I think, is gradually slipping from our grasp.

The book is available from Amazon UK or direct from the publisher, Ferry House Books. An audio CD version of the book is also available, as is Sarah Nock’s own selection of favourite poems.


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John Harding, “What we did on our holiday”

This is a novel that describes advanced Parkinson’s in a family member. It is an “end of life” Parkinson’s book, not unlike Franzen’s The Corrections or Mistry’s Family Matters. As such, it can be a difficult read. Nick’s father is in the advanced stages of Parkinson’s. He is severely disabled, although his wife seems bizarrely grateful that “he hasn’t got the shaking kind” (there: myth number one about Parkinson’s debunked).

Nick and his wife, Laura – and, predictably, not all is completely tickety-boo in that relationship – decide to take Nick’s parents on holiday to Malta, where Dad (whose name is Jim) was stationed during World War II. The novel opens with the aeroplane journey, which sets the scene by introducing the awful difficulties of dealing with an aged parent’s disabilities and the frustrations experienced by each of the group. Well, all of them except for Dad. Dad finds it difficult to express himself coherently. Dad has, essentially, lost his voice as a character… or has he? Glimmers of personality emerge now and then, the more achingly precious for their rarity, and the ending rests upon a full understanding of a request from father to son. Continue reading

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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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What Michael Robotham did next…

Robotham followed The Suspect with a series of related novels in which he develops one of his character ensemble. The Suspect was narrated by Joe O’Loughlin, psychologist – who just happens to have young onset Parkinson’s. O’Loughlin appears as a minor character in The Drowning Man and is featured in The Suspect, Shatter, and Bleed for Me.

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Michael Robotham, “The Suspect”

So, what do we have here? Let me tell you. We got a psychologist with Parkinson’s disease. It’s as plain as the nose on your face, even if he doesn’t mention PD until chapter flippin’ 7!

Actually, leaving the name of the disease until chapter 7 is an act of genius. It allows the reader to get to know the main character – Professor Joseph O’Loughlin, working as a clinical psychologist in London – and to get stuck into the story before introducing the tricky condition. O’Loughlin tells another character in the very first chapter that “I have a disease too”, but – despite an accurate set of symptoms being alluded to in the intervening chapters – I doubt that the average reader would know what was wrong with him until the moment they encounter the words on the page. I certainly wouldn’t have known, two years ago.

This is the first of a number of books featuring the character of O’Loughlin. A kind reader of this blog put me onto the author with a comment on my Fictional Characters with Parkinson’s post. I was going to read the series and then post, but this first book was so very much the sort of thing I was thinking of when I originally posted that I decided to talk about it on its own.

O’Loughlin is the central character here. The fact that he has Parkinson’s is an integral part of the plot, but the guy is emphatically not presented as a victim because of his Parkinson’s. His condition is used several times – his anger and confusion at the initial diagnosis causes him to act against character; this action is something he later regrets and tries to hide, despite the fact that it negates a more serious accusation. Later in the book, his Parkinson’s symptoms create problems in his ability to follow another person effectively, to convince someone of his good intentions (the “Parkinson’s mask” makes his face unreadable; he cannot show an expression of his feelings on his face). And, in a beautiful moment of serendipity, his lack of physical coordination (a combination of tiredness, stress and his Parkinson’s symptoms) allows him to go unnoticed on a crowded train:

Staggering drunkenly along the aisle, I topple into people and mumble apologies.

Only children stare at drunks. Adults avoid eye contact, hoping that I keep moving and choose somewhere else to sit.

The novel is well worth the read even if you don’t have an interest in young-onset Parkinson’s. If I had any criticisms, it would be the proliferation of stock characters that appear, and the occasional clichéd plot element. For example, we have the academic type who is no good at sports (I know that one all too well) and who is a square psychologist peg in a round medical family hole; his disapproving father; an “old school” policeman who’s hit a glass ceiling beyond which he won’t be promoted because he ruffles too many feathers… then there’s the inevitable confrontation between the perpetrator and the hero, in which the hero appears to be getting the worst of it…

But some of these stock characters and clichés aren’t quite what they seem. Robotham is adept at turning them around, giving them a new twist. Even where he doesn’t quite manage that trick, the observational writing is so good that you don’t mind. It’s those little details that truly make a novel like this; some of them are there simply to create an atmosphere, some of them are things that get picked up on later and are essentially clues to the mystery at the heart of the book – the who, the how, and the why.

I couldn’t help but wonder why Robotham gave O’Loughlin Parkinson’s Disease. I wondered if the writer had Parkinson’s, or if he knows someone who did; from what I can find on the Web, it seems not. In an interview reproduced on the author’s Web site, Robotham says,

… I was reading a story in a magazine about a sufferer of Parkinson’s disease. A journalist who had Parkinson’s disease; and it was almost a single line in the midst of the story when he said, “I know when it’s going to be a good day when I can bend down and tie my shoes”. There was just something about that line, and I suppose the self-deprecating sense of humor that he portrayed; and I thought there’s my voice. That’s where [Joseph O’Loughlin] came from.

Later in the same interview, the question of whether The Suspect was intended to be a standalone work is raised. Apparently, it was (in part because Robotham didn’t want to have to repeat the character’s back story in every new novel) – and O’Loughlin’s Parkinson’s was part of that:

It was intended to be a standalone. And, oddly enough, as much as I wanted to give him Parkinson’s because it made Joe that little bit more vulnerable as when his life is disintegrating, so is his body, in the back of my mind I thought the only really good thing about it is that it could be standalone because no one is going to ask me to carry him on if he’s got Parkinson’s. It doesn’t work that way! The BBC jumped at it. Their scriptwriters said, “Listen, Joe’s got ten to fifteen more years with Parkinson’s. There is new genetic research, new operations, there are all sorts of things we can do to prolong all this”.

Apparently the BBC bought the TV rights for a mini-series. I’m not aware of one having been made (this would have been 5 or 6 years ago), but I may just have been plugging the wrong terms into my search engine…

Buy The Suspect from Amazon UK

You can also buy this novel as part of an omnibus edition with The Night Ferry. Which I haven’t finished reading yet, but which doesn’t seem to feature Professor O’Loughlin (although some of the other characters recur). I’ll let you know later…

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Michael J. Fox’s autobiographical writings – volumes 1 and 2

Michael J. Fox, “Lucky Man: A Memoir”, “Always Looking Up: The Adventures of an Incurable Optimist”

In the past, I was always quite ambivalent towards Michael J. Fox. He was just another actor; I remember seeing a number of his films – the Back to Future franchise, Teen Wolf, etc – and, later on, we watched Spin City with some enjoyment. But his boyish charms didn’t work their way under my skin (I remember making a facile judgement about his height).

Now, however, I have a great deal of respect for the man.

When I was first diagnosed with Young Onset Parkinson’s, I was reminded that Fox, too, had the condition – he was diagnosed at the tender age of 29, ten years younger than me. I knew that he’d written a book about it (“Lucky Man”), but I didn’t feel up to reading it straight away.

However, I can’t resist the idea of reading a book for long. I duly ordered a copy from Amazon and was about to add it to the pending pile when I decided to have a sneaky peak at the first few pages. I could barely put it down.

Fox adopts an engaging writing style, and he doesn’t allow himself to wallow in his misfortunes. “Lucky Man” tells the tale of how a self-proclaimed “army brat” from Canada made it big in Hollywood (at least in part by being the right face, in the right place, in the right time), and then what happened to his career – and his life – when he was diagnosed with a neurodegenerative disease. This isn’t, however, your usual celebrity biography (although I’m not sure how I know that, as I don’t make a habit of reading celebrity biographies; perhaps I should say that this isn’t what I imagine a standard celebrity biography to be).

Fox doesn’t dwell on the Hollywood successes; he skims through that era, peppering wry observations here and there, stopping to describe significant events such as his wedding to Family Ties co-star Tracy Pollan and the lengths that they went to to avoid the paparazzi. But the subject that this book revolves around is his diagnosis of Parkinson’s – his denial, his subsequent acceptance and the various coping mechanisms he adopted. Fox also documents  his partial retirement from acting and the beginnings of a new ‘career’ as an advocate and activist on behalf of other Parkinson’s patients.

“Always Looking Up” picks up pretty much where “Lucky Man” finishes. Fox talks about his last days as a full time actor, and about the genesis of his previous book. He talks about how the idea of a Foundation for Parkinson’s research evolved – how he was inspired by Lance Armstrong (Tour de France champion cyclist and cancer survivor) and Christopher Reeve (former actor, quadriplegic after a horse-riding accident).

Fox also touches base with Muhammad Ali (former boxer and fellow Parkinson’s patient) and has a run-in with Rush Limbaugh (radio talk show host), who accused Fox of faking or exaggerating his symptoms in a political television advertisement in which he (Fox) advocated funding for stem cell research. The latter incident, while plainly uncomfortable for Fox, seemed to work in Fox’s favour, particularly as Fox retained his dignity by refusing to enter the fray.

The political furore over stem cell research features quite heavily in this latter book. I must admit to having an imperfect grasp on the reasons for this; Fox’s explanations neatly cleared up my confusion.

Both of these books are a joy to read. I would recommend these books to anyone, with or without a connection to Parkinson’s or a penchant for Michael J. Fox. Fox reveals himself to be an entertaining writer; witty, thoughtful, warm and intelligent. Neither book is dull (even the passages about American sports and American politics – neither of which I understand as fully as Fox seemed to imagine his audience might – were interesting and, on occasion, informative – I was particularly tickled by the description of the “antiquated voting machines” used in his district of New York. A machine? For voting? I’ve ony come across the methodology that employs a pencil, a slip of paper and a box). My only caveat is that Fox occasionally comes across as being a bit too optimistic (is he too good to be true?), and that his slight “New Age” tendencies can be a bit wearing at times.

Of course, Michael J. Fox is a wealthy man, and with wealth comes privilege, and high quality health care.  He does not have to put himself in the public eye, but I, for one am glad that he has done so, and continues to do so. His fundraising and political clout is valuable for funding research, and his visibility is a constant boost to public awareness of Parkinson’s, with the bonus that it highlights the fact that younger people can get the condition, too.

Fox has since written a third memoir. This volume, “A Funny Thing Happened on the Way to the Future: Twists and Turns and Lessons Learned” seems to be a collection of anecdotes rather than a conventional autobiographical tome. Of course, I haven’t actually read it, yet, so I can’t tell you any more about it…


Jonathan Franzen, “The Corrections”

The back of my paperback copy of this novel has a quote on it, from a review in Elle. Will Blyth describes the book as “the first great American novel of the twenty-first century.” I must confess that that one phrase (“great American novel”) very nearly put me off. Other novels that I have read that have been lumbered with that description have not been to my tastes. Quite often unbearably pretentious, excessively intellectual – basically, trying too hard. I usually find the characters (who are often dissolute, lecherous types) difficult to identify with. I won’t name names – in part because I have tried to excise the memory of reading such books from my mind.

Fortunately, Franzen’s “The Corrections” isn’t like that. It’s an engaging read, intelligent and warm. The characters are not universally appealing, it is true – but they do seem real, and each of the main characters is given time to develop into a person you can feel for.

“The Corrections” is a book about a the various dysfunctional members of a family. The children are al adults and have all left home. The parents remain in the family home.

The father, Alfred is, in many ways, the central character despite being the one who remains the most aloof. His distance is part of his character – he has always been very ‘correct’ in his opinions and his behaviour, and seems to find it hard to express emotions. One might say he is repressed. His family seem to think he is depressed. Now an old man, he has Parkinson’s.

Enid, his wife, is a disappointed woman. Her husband disappoints her by his distance and his inaction. She tries very hard not to let her children disappoint her, to the point of telling herself untruths about their lives. She yearns for happier days when the family were all together. As her husband’s condition deteriorates, she sends out the call for one last family Christmas.

But each child has their own reasons for wanting to avoid the parental home.

Gary, the eldest, is – on the face of it – the most successful. He has a good job in the banking sector, a wife and three children. But his wife – who seems a little unstable – does not get on with her in-laws, and refuses point blank to go to their house for Christmas. Gary himself is struggling with his own mental health – might he, as his wife suggests, be depressed?

Chip, the intellectual with an overt “alternative” lifestyle (basically, he doesn’t have a steady job), has financial concerns. And his girlfriend has just left him. Then he is made an unconventional but lucrative offer that involves overseas travel…

Denise, the youngest, is a successful and highly regarded chef (this is a source of pride to her mother, but Denise’s recent divorce and lack of children causes disappointment). But she is also undergoing a sort of identity crisis, which ultimately results in her losing her job.

Taking in the American midwest, Philadelphia, New York, a sea cruise and the perils of Lithuania, the story ricochets between the family members as we learn more about their pasts and their present situations. There’s a sub-plot involving a hyped fictional cure for Parkinson’s, and a few twists that I, for one, didn’t expect.

Alfred, the character with Parkinson’s, is, I think,  a complex fellow with hidden depths. We don’t really get to explore these, but they are hinted at. His supposed depression predates the onset of his Parkinson’s (not, in itself, unheard of – not least because dopamine losses typically begin up to ten years before external symptoms appear). He may not be the most attractive character I’ve ever come across, but – to borrow a phrase from Burns – a man’s a man for a’ that, by which I mean to say that he is a human being, and that Franzen manages to portray him as such (Burns’ poem is  proto-socialist recognition of the humanity of the poor, so it’s not quite appropriate here; nonetheless, the phrase insinuated itself into my review and I couldn’t resist it). He is, by turns, stiffly dignified, intensely focused, desperate and confused, among other states. And his family members revolve around him.

Franzen seems to be aware of many of the issues surrounding Parkinson’s – either he’s done his research or he has encountered the condition in his personal life. This isn’t a book about Parkinson’s – it’s a book about human relationships, and as such it is a book with wide appeal – but it is a book in which Parkinson’s features heavily.