Blogging with Parkinson's

A personal perspective on Young Onset Parkinson's


A Weighty Matter: Weight Training Has Positive Effect on Parkinson’s

I’m interested in this story because my physiotherapist gave me some weights-based exercises right at the beginning – and because I (unexpectedly) found that I liked them. Part of the reason for that is that they don’t take long and that the equipment doesn’t, really, take up much space (although my weekend bag is inordinately heavy these days). In fact, performing the exercise itself doesn’t take up much space either.

I first spotted the news that weight training is the latest “best” exercise in a Telegraph article, which describes how two groups of Parkinson’s patients were compared, one working with weights, the other following a program called “‘fitness counts’, which includes flexibility, balance and strengthening exercises.” Continue reading


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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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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: