Blogging with Parkinson's

A personal perspective on Young Onset Parkinson's


Back for the future: Nike MAG and the Michael J. Fox Foundation

2011 Nike MAGAnyone who has been paying attention to the activities of the Michael J. Fox Foundation cannot fail to have noticed a certain amount of fuss over a shoe. A “sneaker”, as they call it in North America. Here in the UK, we might call such a shoe a “trainer”, albeit with one caveat – which I’ll come to later.

The genesis of this shoe – the Nike Mag – happened in 1989 as part of the production of the film Back to the Future II. The film people called Nike – whom we should probably call the shoe people, although I don’t want to make that sound too definitive – and asked for a futuristic shoe (the future, in this case, was 2015). Nike got all excited and delivered the Nike Mag, which was very tall and had all sorts of pseudo-magical features.

Apparently, people were rather struck by this shoe.

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“There is no Department or Secretary of Cures. It’s us.”

Michael J. Fox is calling for volunteers to participate in medical studies. His statement appears in the Democrat and Chronicle, a daily newspaper from Rochester, New York; he also refers to the Parkinson’s Progression Markers Initiative, a study that is seeking a biomarker for Parkinson’s. Researchers at the University of Rochester are participating in this important study.

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Hair Scare: Rasagiline (Azilect) and Hair Loss

Illustration by A. H. Watson: "I Come, Rapunzel!"

All drugs have their side effects. Some, like dopamine agonists, have side effects that are downright terrifying. Some, like rasagiline (brand name Azilect; “almost a vitamin”), have side effects that are rare or not really very scary.

I chanced upon mention of one of rasagiline’s known side effects in a thread on the Parkinson’s UK’s Web site. You can see the mention – and my reaction – on page 2.

I was somewhat perturbed by the fact that hair loss is a known side effect of rasagiline (a “less serious” side effect). Because, you see, I have noticed that I have been shedding a little more hair than usual of late. I had put it down to some seasonal shedding or moulting event – it is summer, after all (although you might be excused if you hadn’t noticed. The English summer this year has been cool even by local standards), but it still seemed to be more than usual…

The jury’s still out on what’s causing this shedding. It could be seasonal. It could be down to the drug. It could be a combination of the two.

Now, I have lots of hair on my head. Hairdressers often remark upon its thickness. So I haven’t got any bald patches or even any noticeable thinning; the thing that concerns me is that if this continues, even my head of hair may become noticeably depleted. And I’m secretly quite proud of my mop of straight, thick hair. You might not be able to tell – I don’t go to the hairdressers often enough, I have only the faintest idea of where my hairdryer is and I never style it (I gave up when it became apparent that it would just do what it wanted to do – which was usually hang straight down – regardless of any attempt to modify its behaviour). But I’ve become accustomed to it. And it’s not going grey, either, so there’s another point in its favour. I’ve never coloured it, either.

Nobody likes the idea of going bald, but at least if you’re male it is accepted as being something approaching normal. Women with alopecia often find it quite hard to accept. I suppose I could try the Sinead O’Connor look – I’ve occasionally wondered what shape my skull is – but I have a feeling that it won’t suit me.

Of course, if I stop taking rasagiline – and I won’t do that without taking advice from a professional (probably my Parkinson’s Nurse) – then the hair loss, if it is caused by the drug, should stop and my hair should regenerate at its usual rate. But I don’t particularly want to stop taking rasagiline. It seems to be working for me, for now, and then there’s the possibility that it might be neuroprotective – that is, it helps to slow the progression of the Parkinson’s. Perhaps. For now, I’m going to wait and see what happens. If my hair continues to desert me, and if it thins out too much, I’ll have to consider my options.

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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…