Blogging with Parkinson's

A personal perspective on Young Onset Parkinson's

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:


18 thoughts on “Sex, Lies and Parkinson’s on Channel 4

  1. Just read the side effects of that type of drug, what a terrifying array! Haven’t watched the programme, but it sounds like a very scary treatment.

    • I only highlighted the high profile, newsworthy, side effects. Even if someone does get an ICD/OCD as a result of taking a dopamine agonist – and while the statistics for the likelihood of that are contentious, they seem to be in the range 20 to 40% for developping some kind of obsessive behaviour – it may not be so very dreadful. I have heard of a retired engineer who repeatedly dismantles and puts back together a small appliance (I forget what, but it’s always the same one). I also understand that any such behaviour is likely to build upon habits that are already in place.

      So… I’m at risk of buying even more CDs, books and art materials, I think. Maybe obsessive blogging. Probably not at risk of anything useful like obsessive cleaning or exercise.

      You can be certain that, when I do try this medication, I shall have my husband on high alert!

      • Yes, I read the wiki on the side effects, it starts out sounding like something a psychedelic experimentalist might try for a party, but then goes down a darker path, I do hope the positives outweigh the negatives.

      • I would question the probability of developing side effects – I believe it is very much higher. The issue here is that most people do not report them as they are embarrassing to discuss. Speaking personally, I was diagnosed 11 years ago, and have been on dopamine agonists for 10, though at a much lower dosage now, alongside other meds. I managed to get my side effects under control, but the only time I have mentioned it at all was when I had a female neurologist. They are dangerous and should not be prescribed. Indeed some neurologists no longer do so.

  2. There are other potential side effects, including drowsiness and nausea. However, it’s the psychological ones that are the most terrifying.

  3. Your comments about Vicki and your view on the documentary are balanced, thoughtful and sensitively handled. I have seen the fall out in the PD community over this program in forums (which I don’t make a habit of) and websites. They are shamefully unsupportive and in the main rude. I am far more appalled at the lack of manners, the assumption and hostility than I am of Vicki’s conduct. She has struggles like so many and what it demonstrated to me the most was the impact on her family which people failed to focus on. Her husband the unsung hero. I find it hard to understand why the CPT and PUK didn’t offer Vicki some media support and communications training, as the opportunity to use her ‘voice’ was huge. Instead she has been in the main alone and was clearly unnerved by Eammon on this morning who quite knowingly called her ‘Randy’ to unnerve her which he did. Vicki remains on a rollercoaster, the last thing she said was that Wobbly WIlliams had stopped posting her blogs. Really it this is how we behave towards our own, I want no part of it. I would suggest we look to our own lives and stop judging her. And I would remind people that she has raised an enormous amount of money. More than I have and ever will. So she has my hand unconditionally. Once more your writing makes sense of the crazy world of PD. And once more thanks.

    • Thank you, lovealbany.

      I do wonder sometimes whether there really is a “Parkinson’s Community” or whether it’s merely a bunch of scared, frustrated people who scarcely know whether they are coming or going.

      Of course, the organisations – the charities, like Parkinson’s UK and The Cure Parkinson’s Trust (that name always makes me think of Robert Smith) – they should probably try harder to foster a community. The forums on Parkinson’s UK often (but not always) degenerate into a bunfight. There are, however, still many helpful and considerate people there.

      Do you know if Vicki asked for any support from the charities? They tend to be slow to move, charities – they don’t like risks and they seem to need to run everything past a committee. With reason, I think; charities have to be fully accountable. Your idea of communications training sounds good, though.

  4. I take Requip XL, up to 16mg now and have none of these side effects. I get the drowsiness occasionally but find if I get up and move around it goes away. My heart aches for people who suffer from these horrible side effects but not everyone has them. I only say this for the benefit of those people considering taking this drug. It’s not a 100% sure thing these side effects will happen to you. Tess

    • Thank you, Tess. You always hear of the bad side effects and almost never of the people who are unaffected (although I have been reassured by an older couple; the wife was keen to stress – for the benefit of my peace of mind – that her husband wasn’t suffering any adverse effects, and had been taking dopamine agonists for several years).

      I understand that the risk of psychological effects increases if you are younger, but even if the risk is 50:50 at my age, I think that it’s worth trying just in case I’m one of the 50% who won’t suffer them!

      • Thank u thank u thank u xxxxx
        God so nice to read something where I’m not the devil incarnate
        I’m now fighting for my job for various reasons since all the media interest but I regret none of it!
        it got people’s attention
        I am exhausted but my three boys ken James and Harry are all that is important and their love and support remains unfailing x
        Yes the rudeness and nastiness has never ceased to amaze me but I go by three sayings
        – nowt as queer as folk
        – don’t let the bastards grind u down
        – don’t knock it til use tried it
        Much love
        Vicki xxxx

      • Why on earth should you be the devil incarnate? It’s ridiculous. You’ve just been unlucky – first, to get PD, and second, to suffer from unfortunate side effects of a prescribed drug.

        I’m really sorry to hear that you’re having to fight for your job. That’s all you need! I’d say it sounded like discrimination, but no doubt the powers that be have managed to find a way to make it seem otherwise.

  5. I’ve put in grievance and I’ll fight- the media stuff has just brought it to the fore- had it for two yrs
    All ive tried to do is raise awareness but feel been thrown to the lions and left- not just by the media who r just after sordid details but the pd community
    Some of the stuff has been unbelievable
    Normally I rise above but today really got to me

    • The PD Community is, if it exists, fractured. Many of the people who find themselves in it are basically scared and angry. PD itself may affect how you might cope with these perfectly natural reactions (and that’s before you come to the effects of the medication!), and some people seem to lash out verbally without thinking about the consequences to others. But, then, that describes the general populace, too. It just seems to be more prevalent for those with PD. Of course, the Internet doesn’t help – there is a tendency for (some) people to forget that the words they read on a blog or a discussion thread were written by a real person, just like them. And that that person is (usually) writing about their own experences, and isn’t a paid journalist. The same thing can happen with television; it has a very distinct distancing effect, not least because we’re so used to seeing fiction on TV.

      I sometimes wonder, as well, if there is an inherent division between the two age groups within the PD “Community”. The experiences certainly seem to be different, both in life and in medical terms. It might also be worth remembering that some of the older folks are still getting to grips with all this Internet malarkey – not that it’s an excuse for bad manners or downright nastiness, of course.

      I hope that your day gets better. Remember that not everybody is judgemental or unkind, and that many of the comments were along the lines of “she’s so brave!”

      Wishing you luck with the grievance. You could always get the documentary crew back in and make a programme about discrimination and unfair employers!

  6. Thank goodness there are some sensible people out there. Can’t believe the fallout. I wrote about it on my blog too.

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