Blogging with Parkinson's

A personal perspective on Young Onset Parkinson's


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Al-Jazeera blunder

My husband was watching the news on Al-Jazeera (I wasn’t wearing my glasses, so I was only listening). They were covering the imminent beatification of Pope John Paul II. I caught the phrase “… who died of Parkinson’s Disease”.

The statement is repeated in this article on their Web site, where it says:

He died on April 2, 2005 from his acute case of Parkinson’s.

That’s wrong. You don’t die of Parkinson’s Disease. It can severely affect your quality of life, and may sometimes contribute to a cause of death (falling, for example), but it doesn’t actually kill. Complications of the later stages of disease can cause death (respiratory problems, for instance), or (in some cases) side effects of the medication may contribute to mortality.

Al-Jazeera’s archived article about the Pope’s death in 2005 does not make this claim. Instead, they talk about his suffering from Parkinson’s but are careful to note that the Vatican’s statement “did not give a precise cause of death”. The BBC referred to his heart and kidney problems in their 2005 article. I think that that’s more likely.

Interestingly, the miracle ascribed to Pope John Paul II that permits his beatification is his alleged posthumous “cure” of French nun Sister Marie Simon-Pierre’s “Parkinson’s Disease”. My take on this is that Sister Marie Simon-Pierre was misdiagnosed and did not have Parkinson’s, but another neurological condition with similar, “Parkinsonian”, symptoms that had gone into remission for some reason. Diagnosis of Parkinson’s Disease is an inexact science, or possibly an art.

Regarding the mortality of Parkinson’ patients, the following paper may be of interest:

Mov Disord. 2003 Nov;18(11):1312-6 (abstract only)


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Mervyn Peake Award: Update (People’s Choice Award)

From today (26th April) to the 9th May, you can view the shortlisted entries for the 2011 Mervyn Peake Awards and vote, if you so wish, for the People’s Choice Award. Winners of the People’s Choice Award will be included on the 2012 calendar.

Click here to vote for your favourite entry in your region of the UK.

Previous post on this topic: Creativity and Parkinson’s: The Mervyn Peake Awards


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Tight Boots and Foot Dystonia

I mentioned in my post about socks for hill walking that my walking boots are rather tight-fitting. What I didn’t mention, because it wasn’t really relevant to the subject in hand, was that on my recent walks, the dystonia in my feet stayed at bay. This seems to be due to the tightness of my boots in the toe area; there just isn’t room for my toes to curl up in there!

This is mostly a good thing. It means that I’m not standing on the ends of my toes. But it did have one unexpected result (which I felt after the first walk, but paid it little heed because it didn’t hurt as much as the huge blisters on my heels): I have a blood blister underneath my big toe nail! The toe nail has turned an odd shade of purple, and it all feels rather tender. I’m not posting a photograph of it because, lets face it, pictures of people’s foot injuries are seldom illuminating and almost invariably not aesthetic. And it’s not really all that bad, either.

But I have drawn you a picture of how my foot likes to distort itself.

If I tell you that my dystonia takes the form of the four smaller toes curling in, and the big toe sticking itself up, I’m sure that you will be able to see how this happened; that big toe had been jabbing itself up at the hard leather of my boot, just above where the toe should have been happily sat, moving with my foot rather than against it.

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The Importance of Good Socks

So, you know I’m doing a sponsored walk in a few weeks? (You didn’t? Read this.) Well, I finally made it out onto the local downs (aka hills) for a few ‘practice’ walks and to make sure that my venerable walking boots still fit, and, um, don’t cause blisters.

I’ve had a few problems with those boots (which are illustrated in my post on the sponsored walk). They’re very nice boots – made by Scarpa, with the old “Attack” sole and bought as a gift for me by my parents in 1993 (when I was 22). They always were slightly prone to causing blisters, but more so recently. They seem tighter these last few years; this is unlikely to be the boots shrinking, so it must be my feet subtly changing shape as I’ve got older.

I always used to wear the traditional thin cotton sock under a thick woollen walking sock, even in the summer – but then, I have strange, almost permanently cold feet which hardly ever sweat, so there was no way they were going to get too hot. Having said that, I believe that this arrangement – the traditional way of wearing walking boots – actually does a pretty good job of wicking away moisture. This year, I realised that this arrangement no longer worked for me with these boots. It was just too uncomfortably tight!

I had two options: new sock arrangement, or new boots – which could be very expensive indeed. I settled on the idea of trying out a single, specialist, pair of socks. I considered wearing ‘ordinary’ socks, but shuddered at the idea of the potential blisters, so off I went to the outdoor shop. I picked up a pair of One Earth activity bamboo socks in Millets, and they were the ones I tried out first (bamboo makes a fantastic fibre – soft, naturally antibacterial, and ecologically friendly to boot; these socks have extra padding – consisting of loop pile – on the toes, sole and heel).

8.5 km (5.2 miles) and 2 hours later, I returned from a lovely walk with happy feet.

The next day, buoyed with success, I tried a pair of wool-rich trekking socks that I’d had for a while (and that I’d worn every now and then with lightweight hiking boots, but not with the real deal until now). Big mistake. These socks seemed to have the same sort of padding in the same areas, but something wasn’t right: after half an hour (barely more than a mile), my heel was hurting like heck so I stopped to inspect it – and to apply a Compeed plaster to the very large blister that had appeared there. I cut short my planned walk, but still totalled 13.5km (8.3 miles) that day. By the time I limped home, I had three blisters – all on my heels – and the Compeed had rubbed off, leaving my feet in a dreadful mess.

I’ve got a couple of pairs of those two layer socks to try out (these have a tactel inner and a cotton outer and are described as being for ‘lightweight’ hiking). I managed to snag one of them and the tactel inner has a nasty run in it, so I now only have three socks (one and a half pairs!) like that. They didn’t seem to like being washed very much, either – I’m at the small end of their stated range and after the first wash the socks seemed to barely fit. They don’t have any padding, either. To be honest, I don’t much like them, and have little confidence that they will do the desired job in my – seemingly rather harsh – boots. I reckon they’ll be fine for less serious jaunts in lightweight boots, though.

In the meantime, me and my healing blisters are off to Millets in search of more bamboo socks!

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“Awakenings”, by Oliver Sacks

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

(Use this link and I will get a small percentage commission)


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Why Blog?

Dear DiaryThis is something I’ve been thinking about recently. Why do I feel the need to blog about my medical condition? There are several reasons:

  • I like writing. I suppose, in  way, I’ve been waiting for a subject to blog about.
  • I hope that other people who are affected by Parkinson’s will find my blog useful and interesting.
  • I find Parkinson’s difficult to talk about. Even – or possibly especially – to people that I know well. Emotions come to the surface more often in person, and it’s all too easy to get distracted from the subject.
  • It gives me an excuse to find out more – and something to do with the more when I do discover it.
  • The blog acts as a sort of diary to remind me what happened when.
  • Blogging allows me to ‘compartmentalise’ the fact that I have Parkinson’s. It’s always there, of course, but when I think about the condition, I quite often think about blogging about it, and that makes it easier to cope with.
  • It also allows me to direct friends and acquaintances somewhere if they want to know more than is comfortable to tell them in person (or in a letter, or an e-mail, or even on Facebook); they can visit or not, and read as much, or as little, as they like. This makes me feel better, because I am not boring my friends with details.
  • It’s quite similar, particularly when I’m putting together a researched post, to the sort of work that I used to do before my children were born (the sort of work that I still hope to return to). Blogging helps me feel that I am ‘keeping my hand in’.

When I first started looking on the Internet for information about what was happening to me, most of what I found was from the United States. There’s nothing wrong with that – after all, a neurological condition knows no national boundaries – but the American health system is a little different to the one here in the UK, and there are a few cultural differences, too. I also found relatively little about Young Onset Parkinson’s.

I’ve just posted a ‘Links’ page (up there at the top, there’s a tab that’ll get you there). Just in case you’re interested. And me – I’m interested in what you think. Do comment, if you have something to say. There’s an automatically generated “Leave a Comment” button to the top right of every post (and if you’re reading the post itself, rather than the home page, there’ll be a comment box at the bottom. Cheers!


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Creativity and Parkinson’s: Introduction

Tulips: Pink and Yellow

Tulips: Pink and Yellow, by Zalamanda

OK, so I jumped the gun a little by posting about the Mervyn Peake Awards, but there was a time issue at stake there, as the closing date was fast approaching.

Anyway, there is quite a lot of interest in encouraging Parkinson’s patients to explore their creativity. It’s a subject very close to my heart, because I enjoy being creative; as you may be able to tell, I like to write. I also like to paint (and to draw).

How does art help? There doesn’t seem to be any definitive answer to that, but most of the Parkinsonian artists who talk about their art refer to being focussed on their work, and many say that their symptoms do not affect them while they are thus engaged. A clinical note that is available on-line discusses the art of one gentleman with Parkinson’s; among his symptoms are micrographia (a common complaint with Parkinson’s, where a person’s handwriting is abnormally small); his writing also displays evidence of his tremors. However,

He draws with his right hand despite its tremor, rigidity, and bradykinesia.

[…] his artistic movements were fluid. He did use the kind of cross-hatching style [common in Parkinsonian artists, and which makes use of tremor in the hand …], but his dominant use of line demonstrated exquisite control over larger amplitude sinuous movements that did not change directions suddenly.

Anjan Chatterjee et al, “Art produced by a patient with Parkinson’s disease”, Clinical Note published in Behavioural Neurology 17 (2006) 105–108

The gentleman in question is described as being ‘obsessed’ and ‘preoccupied’ by his art.

As far as I’m aware, those last two adjectives could be applied to many artists without Parkinson’s. It’s quite easy to get ‘lost’ in your art, and temporarily forget the world around you. I am fairly certain that this is one of the reasons that art helps with Parkinson’s – creativity often involves intense focus and a consequent ‘letting go’ of everyday life. Related to this, but possibly not quite the same, is the way in which practising art permits you to enter into a kind of different mode of being.

I think that this last point (despite being my own) is quite interesting. When discussing the progression of Parkinson’s with various health professionals, and also when reading around the subject, the idea of ‘finding new ways of doing things’ – usually everyday, movement-related things – has cropped up several times. This quite often refers to the difference between conscious and unconscious movements (for example, many people in the later stages of Parkinson’s have to think about moving their legs before they can walk; the normal mode of walking is almost entirely unconscious – see here for a scholarly article discussing this).

There was also the fact that, although I have lost the natural ‘swing’ in my left arm while walking, the same arm still knows how to move when running. When I mentioned this to my consultant, he told me it was because running is a different mode to walking and is governed differently by the brain.

Further reading:

  • The Parkinson’s Disease Foundation (in America) has a dedicated section of its Web site for creativity. It includes a large gallery featuring artists from many nations
  • “Lifeworks: Art Movements” – A brief, and very readable, article published in 2002 by the Canadian Medical Association Journal (CMAJ), describes an exhibition put on by a group of people with movement disorders and includes quotes from a number of Parkinsonian artists. I particularly like this one:

“When I paint I’m in the best place because I’m doing only that. There’s no planning, no hierarchy of actions, but just the urgency of living.”

Johanne Vermette, quoted in the article “Lifeworks: Art Movements”, by Susan Pinker