Blogging with Parkinson's

A personal perspective on Young Onset Parkinson's


I got me ten fine toes / To wiggle in the sand…

My toes don’t always behave themselves. That dystonia that I mentioned once or twice makes them curl up and squash together. The curling up makes shoes a problem, as the toes rub on the uppers. But even without the friction, cured up feet are difficult to walk on, particularly (and here’s the weird bit) in confined spaces. Like indoors.

I am seeing the podiatrist again in just over a fortnight’s time.

But I also had an idea, and I’m trying it out.

Vibram Five Fingers

Strange shoes, with toes!

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Boots, Made for Walking

I’ve had a few problems walking lately.

It’s not the characteristic Parkinson’s shuffle; it’s a lopsided hobble. It’s almost definitely down to the dystonia that (literally) screws up the toes on my left foot. Continue reading

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Slender Threads – A book by Pete Langman

Have you come across Pete Langman? He’s another blogger with young onset Parkinson’s – you’ll find his blog at

He was diagnosed five years ago, and seem to have had a bit of a rough time of it. Now he has written a book on the subject, based on his own experience. The book is called Slender Threads: a young person’s guide to Parkinson’s Disease. He’s a talented writer; I have high expectations. Continue reading

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Working with Parkinson’s (part 2)

I’ve been working full time for almost 9 months now, and, you know what? It isn’t all that bad. I’d still prefer to be part time, but that has far more to do with having young children and a busy life (not to mention the burgeoning artistic career, of course) than it does with my medical condition.

I can still do my desk job perfectly well. I might get a bit stiff sometimes, but a brisk walk down the corridor to fetch a drink usually sorts that out. And I do feel a whole lot better if I get out for some fresh air and a bit of exercise at lunch time, but that probably applies to everybody, to some extent. I still ride my bike, and it comes in jolly handy at times, too. My dexterity has been largely restored by the ropinirole, but any thoughts I might have had of touch-typing properly with both hands have been dashed to pieces. Not that I could ever touch-type, mind. It’s just that the left hand wouldn’t be able to keep up.

It seems that the drugs do work. Mostly.

Of course, they’ll need adjusting now and then, and eventually things will change and no doubt strange little things will occur. But Parkinson’s is generally slowly progressive, and I’m still holding on to the idea that I (probably) get a good ten years out of levadopa. Which I haven’t started yet.

Oh, and my consultant is happy; she’s extended the interval between appointments to 9 months rather than 6. I’m sure that it’s not just a cost-cutting measure.

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Someone Else’s Story

The EPDA (European Parkinson’s Disease Association) shared a link to this story on Facebook. I’m passing it on:

Living with Parkinson’s: Young father learning to cope with early onset diagnosis

It’s a local interest story from Spartanburg in upstate South Carolina, USA. One of the things they talk about is Early Onset (Young Onset) support groups (as distinct from general purpose Parkinson’s support groups, which tend to be dominated by the older PWP – whose perspectives, needs and interests are often quite different to that of the younger person). Now, I do know of one such group not far from me – I just haven’t managed to do anything about it yet. This has reminded me, and pushed the idea further up the to-do list.

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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…