Blogging with Parkinson's

A personal perspective on Young Onset Parkinson's


Contentious Theory of Mind in Young Onset Parkinson’s

The EPDA alerted me to a scientific paper that described advanced Theory of Mind in Young Onset Parkinson’s. The paper, which is by R-L Yu et al from the National Taiwan University, and is published in the journal Parkinsonism and Related Disorders, is available in full online.

I didn’t know what Theory of Mind was (let alone the advanced version), but the abstract helpfully explains:

Advanced Theory of Mind (ToM) refers to the sophisticated ability to infer other people’s thoughts, intentions, or emotions in social situations. With appropriate advanced ToM, one can behave well in social interactions and can understand the intention of others’ behavior.

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Influenza: A Possible Cause of (Young Onset) Parkinson’s?

Influenza A H5N1 virus. Image courtesy of the Centers for Disease Control and Prevention's Public Health Image Library (PHIL), with identification number #1841, via Wikipedia. Photo Credit: Cynthia Goldsmith.

When I was considering reasons why the ‘flu jab was recommended for Parkinsonians, and before I came across the prevalent suggestion that we’re more likely to catch the ‘flu, to get it bad, and to suffer complications, it occurred to me that influenza might possibly make Parkinson’s – and other neurological conditions – worse.

I wondered if there was a link to inflammation (of the brain) – thought by some to be a cause of Parkinson’s – and there certainly seemed to be a suggestion that the inflammation caused by influenza may encroach upon the brain. Continue reading


Sex, Lies and Parkinson’s on Channel 4

I didn’t manage to see this programme when it was broadcast on Friday (and I forgot to record it, too), but that’s alright because Channel 4 offer an Internet-based “on demand” service for four weeks, so I watched it today.

Edit: The “on demand” service is no longer available, but I’m sure that the press coverage, summarised below, still is.

Sex, Lies and Parkinson’s

Vicki Dillon was 35 when she was diagnosed with Parkinson’s, five years ago. Mother of two boys, she also has a successful career as a pediatric nurse. The medication she is on helps her cope with her busy life – basically, to keep moving – but it has also caused problems. She has been taking ropinerole (brand name Requip), a dopamine agonist. This drug has become notorious because it works on the brain’s dopamine receptors (and hence on the “pleasure centre” or “reward centre”) and has been known to cause Impulse Control Disorders or Obsessive Compulsive Disorders. The most newsworthy of these disorders are, of course, hypersexuality (“sex addiction”), compulsive gambling and compulsive shopping. Poor Vicki has been hit with two out three (and apologies to Mr Meatloaf, but in this case that is bad). However, she’s aware of her problems and she’s fighting back at them. From what I saw, I think she’s winning.

This is Vicki’s story. It is not intended to represent everyone with Parkinson’s. It is not intended to represent everyone with Young Onset Parkinson’s. It is not intended to represent everyone with Young Onset Parkinson’s who is taking a dopamine agonist. I understand that one of Vicki’s hopes in allowing this programme to be made – and it is quite intrusive in her life, and in her family’s life – was to raise awareness of the fact that it is not always older people  who suffer from Parkinson’s. I think that she has succeeded in that aim. I also think that it is a shame that a slightly sensationalist approach was required to do that (however, while the film – a mere half an hour long – is a little sensationalist, the reactions of some parts of the press were far more so). The film is edited in such a way that she seems to be almost permanently taking drugs (of the prescribed kind) or partying and flirting with other men.

The film has been criticised as being too scary. I think that Parkinson’s is scary. I think that the prospect of taking mind altering drugs just so that you can live your life is scary (I haven’t started taking ropinerol yet, but I do have a starter pack in the house). I think that Vicki finds it all very scary, too – and so, in that respect, I think the film is very honest.

There is a scene where Vicki is driving home from an appointment with her consultant at the hospital. She is visibly upset. The thing that seems to be upsetting her most is the feeling that she does not want to be like the other patients (probably more advanced in years and in their Parkinsonism than she is) that she encountered in the waiting room. She does not want to be ill. She does not want to be old before her years. I should emphasise that this is my interpretation of how she might have been feeling (she talks about it in the car, but she doesn’t use the words that I have done). It’s kind of how I feel sometimes. And then I feel bad for trying to disassociate myself from those others – just because they are older.

There is a short excerpt of the documentary available on Youtube, and there are also a number of features in UK tabloid newspapers:

  • The People uses the sensationalist (and inaccurate) headline “Parkinson’s turned me into a sex addict“.
    They also seem to have run out of apostrophes and other useful punctuation marks, such as quotation marks. It has to be said that this article is as bad as its title indicates, overemphasising the sex-craving aspects and, I think, misrepresenting Vicki and the Channel 4 documentary quite badly.

Rather unfortunately, it seems as if the more sensible parts of the UK press have steadfastly restricted themselves to brief reviews, such as this one in The Guardian. Perhaps they were scared off by the film’s title. However, the local press seem to have stepped into the breach:

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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.


Illuminate Parkinson’s

Here’s a great project that one of my friends pointed out to me yesterday:

Illuminate Parkinson’s is a photographic project that will consist of a travelling exhibition (initially proposed shows are in Los Angeles, Edinburgh and Berlin) and a book. There are a number of celebrities – mainly from the slightly alternative world of grown-up comics (Neil Gaiman, Terry Gilliam, Grant Morrison, Kevin Smith – oh, and Stephen Fry) – involved, and, of course, one seriously good portrait photographer, Allan Amato. But the core portraits will be of people with Parkinson’s.

Allan has been inspired to do this by his best friend, Becky, who discovered that she had Parkinson’s at the age of 29.

Now all they need is the capital to get the project rolling… which is where Kickstarter comes in. Kickstarter allows people to float the idea of creative projects out to the world at large (in the form of the Internet). There’s a stated cash requirement, a deadline by which the project owners must collect pledges to meet that cash requirement, and supporters. Supporters are the multitude, who can pledge to pay as much towards the project as they wish. There’s also incentives, which basically means stuff the project owners will give the supporters when the project is complete.

You’ll find Illuminate Parkinson’s on Kickstarter here. I reckon it’s worth a few bob just to see this project get underway.

Here’s a few of the celebrity supporter images:

Illuminate Parkinson’s is linked to the Illuminate ‘brand’, created to assist in raising funds for The Cure Parkinson’s Trust. Both of these are UK organisations, although, of course, any benefit that their work brings will be to Parkinson’s sufferers worldwide.

The purpose of Illuminate is to raise not only the funds to find a cure for Parkinson’s Disease but also to educate and inform young people about its effect thus “Helping to throw light on Parkinson’s”


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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High Heels and Dystonia

Dolcis block heel shoes, bought circa 1996

These be the shoes...

I don’t often wear high-heeled shoes, but I had occasion to do so yesterday, when I had a job interview. I also had a good wander around Andover, where the interview was.

I decided not to wear the orthotic insoles. They don’t actually seem to help very much, and in some shoes they make my feet ache more than they would without the insoles. I gave my interview shoes (block-heeled lace-ups which go nicely with a trouser suit) a spit and polish and off I went. By the end of the day (not-very-stressful interview and a couple of hours of fairly purposeful town-walking), my feet were fine. I realised that I had scarcely been bothered by the dystonia at all.

The only problem with heels is that I haven’t mastered the art of running in them.