Blogging with Parkinson's

A personal perspective on Young Onset Parkinson's


TV Alert: “Barbara Thompson: Playing Against Time” (BBC FOUR)

On Sunday 19th February, at 9.00-10.15pm, BBC FOUR will be showing a film about Barbara Thompson, professional jazz saxophonist and composer. Who just happens to have Parkinson’s. It goes without saying that music must play a vital part in her battle with the condition, although I imagine that there is a terrible fear that she will lose the ability to play. Thompson and her husband, Jon Hiseman (jazz-rock drummer and mainstay of the jazz-prog-rock band Colosseum) are apparently remarkably candid about their experiences with Parkinson’s.

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John Harding, “What we did on our holiday”

This is a novel that describes advanced Parkinson’s in a family member. It is an “end of life” Parkinson’s book, not unlike Franzen’s The Corrections or Mistry’s Family Matters. As such, it can be a difficult read. Nick’s father is in the advanced stages of Parkinson’s. He is severely disabled, although his wife seems bizarrely grateful that “he hasn’t got the shaking kind” (there: myth number one about Parkinson’s debunked).

Nick and his wife, Laura – and, predictably, not all is completely tickety-boo in that relationship – decide to take Nick’s parents on holiday to Malta, where Dad (whose name is Jim) was stationed during World War II. The novel opens with the aeroplane journey, which sets the scene by introducing the awful difficulties of dealing with an aged parent’s disabilities and the frustrations experienced by each of the group. Well, all of them except for Dad. Dad finds it difficult to express himself coherently. Dad has, essentially, lost his voice as a character… or has he? Glimmers of personality emerge now and then, the more achingly precious for their rarity, and the ending rests upon a full understanding of a request from father to son. Continue reading


Adventurous Folks

I recently came across an article in the BBC’s online news magazine that pondered the question “Why do so many disabled people embark on dangerous feats?

It reminded me of a chap called Alex Flynn, who was diagnosed with Parkinson’s in 2008 when he was 36. He’s set himself a series of challenges that include adventure trekking, triathlons, long distance running and all sorts of outrageously excessive physical challenges, all of which are undertaken with the intention of raising money for a Parkinson’s charity. He wasn’t mentioned in the BBC article – nobody with Parkinson’s was – but Parkinson’s is, after all, a recognised disability. And I am seriously impressed by Alex’s drive.

The BBC article started with a number of wounded servicemen (notably the four who will accompany Prince Harry to the North Pole – this will be featured in a current documentary series), and moves on to look at other disabled adventurers. Perhaps not surprisingly, all of the featured adventurers and other daring types are men. Most – but not all – seem to have been daring, adventurous types before acquiring their disability (I don’t think it’s unreasonable to assume that someone who joins the armed forces is the daring type).

The article doesn’t come to any definite conclusions in answer to its own question. It suggests that

… taking on adventures [might be] a substitute for lack of success in life against ordinary measurements …

One of these ‘ordinary measurements’ is employment. It can be difficult to gain employment if you are disabled, despite the Equality Act (2010, UK). Rather shockingly, 70% of blind people of working age are unemployed. The blind adventurer, Myles Hilton-Barber, uses his feats as publicity for his new role as a “motivational speaker”. He also seems to appreciate media attention for its own sake:

“[…] Disability robs you of your confidence. I lost my dignity, my independence, but I can jump out of a plane and people will have respect for me.”

As noted in the article, the media seem to relish tales of plucky disabled adventurers doing things that the able-bodied might balk at.

Disability activist and campaigner Barbara Lisicki points out that this is effectively the easy option:

“The press is always happy to focus on the old tragic but brave stereotype. Earlier this year, 5,000 disabled people marched against government cuts. This got very little media coverage, because people find looking at a collective of disabled people uncomfortable.

“It’s much easier for them to focus on one individual and say ‘aren’t they marvellous?'”

I can’t help but think that the BBC article itself comes very close to falling into this trap. There is an unfortunate tendency to lump all “disabled people” together, when really the loose grouping of people with disabilities is incredibly diverse, and naturally includes some people who are more adventurous than others – not to mention the fact that some are more capable than others.

Lisicki also talks about what she calls ‘supercrip syndrome’ and notes that not everybody “feel[s] the need to prove [them]selves”. Of those who do, however, the BBC article posits that some of the motivational factors may be

[…] the love of adventure, to prove that disability is no barrier or, as Jaco from Harry’s Arctic Heroes says, “to bring back the feeling of being able to do something again” […]

I would add to that list a few extra possibilities:

  • The desire to do something while you still can. Many disabilities are progressive (like Parkinson’s, or Arthritis), or may come with a reduced life expectancy.

When I was at university, many years ago, I knew someone with multiple sclerosis (MS). She had quit her job and was doing a degree simply because she wanted to do it.

One of the reasons that I am making a point of taking my painting equipment out on recent walks is that I want to do the landscape painting now that I had always fondly imagined that I would do later, possibly in retirement. I suppose that doing it now makes it more likely that I might be taken seriously, though…

  • Because, not having a job (possibly due, in part, to the disability), you have the time to do it! And, of course, doing something significant means that when you do get a job interview, you can talk about it and you don’t sound like someone who sits around on their backside all day.
  • The desire to raise funds, often for a relevant charity. This was a large part of my motivation in signing up for the Just Walk event. That and the fact that I like walking.
  • Anger may be another motivator. In a recent news post, Alex Flynn wrote:

I freely admit that I am bloody angry about having Parkinson’s and frank about the fact that I channel that anger to more positive and constructive outcomes. It often pulls me through the toughest races and, certainly, assisted me in running 20 marathons in 10 days when injured.

  • I also wonder whether some people acquire a “don’t care” attitude along with their disability, a sort of semi-suicidal impulse that overrides the standard sense of self-preservation. I can understand how this might work; you feel as if your life is worth less now – perhaps it is bound up with the fact that you know that your life will be curtailed or restricted by your disability or illness – and you decide to take risks.


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: