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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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…

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Cecil Todes, “Shadow Over My Brain”

AmazonCecil Todes (1931-2008), a leading child psychiatrist, was 39 when he was diagnosed with Parkinson’s. One of the first indications of his condition was the apparent malfunction of his cherished automatic watch (this sounded very familiar); he sent it back to the manufacturer twice before settling on the solution of wearing on his right wrist, where it worked perfectly. Much as in my own case, this happened a few years before Parkinson’s was diagnosed and Todes eventually made the same realisation that I did: there was nothing wrong with the watch; it was the arm that was at fault, lacking the requisite amount of movement to keep the watch going.

Over the next 20 years – the period covered by this book – Todes sought a cure for Parkinson’s. He used his medical connections to locate new treatments and endeavoured to sample many at an early stage of their development. His attempts to cure himself often seem desperate; how much of this is an understandable desire to be rid of Parkinsonism, and how much is due to an expectation that medical science should be able to cure it is unclear.

Todes also sought a reason for his affliction. In Shadow Over My Brain, he attempts to tie the condition to personality, specifically to early loss (his own mother died just before his seventh birthday), with an underlying genetic predisposition. This would be a psychosomatic cause for Parkinson’s (“psych” = mind, “soma” = body; psychosomatic, in this context, means that the mind is contributing to an illness of the body).

Writing about his own experiences does not seem to have come easily to Todes. His prose is occasionally a little stiff, but there is never any cause to doubt what he says. He is always frank and believable. His experiences offer an insight into the nebulous area where a doctor is also a patient, and so into the doctor-patient relationship in general. Do doctors make good patients? Is it easy for other doctors to treat a doctor-as-patient? Todes kept working for many years after his diagnosis; it seems that other doctors found it difficult to relate to him in his role of patient-as-doctor.

Todes does make one point that stands out in my mind. He claims that working (in his case as a doctor) helped him face and cope with his Parkinsonism. I would be inclined to agree with this. My limited experience suggests that keeping oneself engaged does help enormously.

This is, I think, an important book. (Oliver Sacks, who provides the effusive introduction and who also mentions Todes in the preamble to Awakenings, also thinks it is an important book.) Todes’ clinical experience leads him to describe all aspects of his condition as they occur in a dry, succinct manner; he does not stint and he does not bury then under unnecessary detail. His courage in facing all that Parkinson’s has thrown at him and in attempting novel cures, is vast. Although Todes does touch upon the subject of depression (a common non-motor symptom in Parkinson’s Disease), the book is not, on the whole, depressing; Todes contrives to inject a genuine message of hope.

The book itself is not long (my hardback edition runs to 158 pages excluding the bibliography) and it has a single, simple narrative.  It is not, however, an easy read; there is some thinking to do long the way, and there are one or two medical concepts to understand (although this is emphatically not a scientific discourse; it is a personal story).

Shadow Over My Brain: A Battle Against Parkinson’s Disease is out of print, but second hand copies seem to be readily available at Amazon and elsewhere.


Hard Sell: The Evolution of a Viagra Salesman


Buy at AmazonHard Sell: The Evolution of a Viagra Salesman is a book by Jamie Reidy. It is a factual account of his time as a pharmaceutical representative working for Pfizer, and has been made into a film, Love and Other Drugs, starring Jake Gyllenhaal and Anne Hathaway.

I haven’t seen the film, but I did stumble upon a review of it, and subsequently read a plot synopsis (IMdB has a full synopsis, complete with spoilers) which described how Reidy gets romantically involved with Maggie, a woman suffering from Young Onset Parkinson’s. My interest was piqued.

But I don’t get out to the cinema very often (I have young children and no established baby sitter), so I thought I’d check out the book it was based on. I usually prefer the book to the film, anyhow – and, besides, the film has had some truly bad reviews. I found a reasonably priced copy of the book on Amazon and read it almost as soon as it arrived.

Maggie isn’t in the book. The book doesn’t mention anyone with Parkinson’s, Young Onset or otherwise.

Are you still reading? Well, I was. I was looking out for Maggie – surely the movie studio wouldn’t just invent such a big part of the story? (Answer: yes, they would; it seems that the book and the film bear only a superficial resemblance to one another.) But I was also quite enjoying the book. Reidy is a likeably intelligent slacker who coasts through college and army life. He quits the army and returns home, much to his parents’ chagrin. The job of pharmaceutical rep. at Pfizer lands in his lap and he accepts it. He soon works out how to play the system, doing the bare minimum of work, and somehow ends up being ‘promoted’ to the urology team in California, just in time for the launch of Viagra.

The author comes across as a pretty standard sort of guy – I think I’ve met his English counterparts a fair few times – he’s a lazy, competitive underachiever mostly interested in beer, football and sex, although faintly embarrassed by the latter. There is no romance in the book; a girlfriend is left behind in Chicago, and that’s the last we hear of her, and while there are intimations that Jamie’s got some sort of love life, the girls aren’t mentioned for the simple reason that they have nothing to do with the subject of the book: Jamie’s rather unspectacular career.

The book is fast-paced and well written, with a wry, self-deprecating wit. It throws a little light on many things: the US medical system, big pharma’s relationship to the American medical system, and, of course, the minutiae of American society in general. But it doesn’t pause too long, lest the reader get bored. It is, in truth, a fairly superficial book, written for comedic effect rather than deep insight. In the ‘Epilogue, continued’, added after the book was initially published, Reidy admits that he failed to properly reveal his ‘hopes, dreams and fears’.

But it’s still an entertaining – and, to a certain extent, enlightening – read.

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