226. Sex and drugs and rock and roll…

“I was taking Entacapone … and it powered up hypersexuality.   It was replaced with Tolcapone which fixed the job.  I was pleased as I was nearly 60 and really could not be bothered.” (Person on PUK Forum)

Way Back When, I was lucky enough to have the chance to talk with BTMan: the first person I’d met with Parkinson’s who was neither mad nor dead nor both.  Those of you who have studied my juvenilia might remember him explaining that some Parkinson’s medications cause, as an unfortunate side-effect, a reduction in impulse control.  This can lead to excessive spending or gambling; or to over-eating; or to a greatly increased sex-drive, even in term-time.

BTMan went on to assert that, therefore, if he was found at the bookies with one hand round a blonde and the other round a pie, he could not be held to blame. Fair enough.

I’ve been trawling the internet to see how other people have got on with Entacapone, which  does sound beguilingly like an Italian soft cheese; I’m sad to report a complete absence of tiramisu recipes.

The drug is supposed to work alongside one’s dose of levodopa – the latter being artificial dopamine.  You’ll remember from your background reading that the key thing about Parkinson’s is that the cells which are supposed to produce dopamine have inexplicably stopped working – like Southern Railways. So there is not enough natural dopamine sloshing around in the system and the artificial stuff is needed to top you up.

Trouble is, as the cells continue to die off, there is less and less of home-grown, artisan dopamine so there is more and more need for the imported stuff.  So you’ve either got to increase the dose of levodopa or find a way to make it last for longer.

I’ve been pretty much on the same dosage since being diagnosed back in 2012, so it’s not a surprise that my levodopa now wears off before the next dose is due.  This means that my tremor has got more bothersome, on occasions seriously impeding my ability to text, tweet and google.  Nightmare.  Hence at my review the other week, Professor Plum suggested that I try Entacapone which is designed to make the levodopa hang around in the system for longer.

A couple of weeks into the drug regime and I’m pleased to say that I seem to have got away without developing any compulsive behaviours; in fact, I’ve got twenty to one at Ladbrokes that this remains the case.  But, alas, I’ve not really noticed any positive impact on the old tremor – if anything, it seems to me to be quite a lot worse.  Which is why I’ve been googling to see how other people have got on; perhaps this is just teething problems.

Trouble is, these things are awfully subjective.  Like with a naughty child, just paying attention to the tremor makes it play up more.  Moreover, it’s been awfully cold this week; William Hill is offering a hundred to one on the Thames freezing before Easter, I see.   My tremor is definitely worse in the cold.  In fact, if Prof Plum really wanted to help, she’d pay for me to winter in the Italian Riviera: another example of the NHS falling short, I fear.

So far, the internet has given me mixed messages about what to expect from this drug.  Though, of course, people generally only comment when they’re having problems with something.  Luckily for me, I have ready access to an excellent Parkinson’s nurse.  I’ll email her on Monday for advice, and I’m willing to bet that before the ink is dry on this blog, she’ll have sorted me out.  I’m offering 5/4 on that – anyone??


By the way, I gather from one of my spies at Parkinson’s UK that I no longer have Parkinson’s Disease.  Before you get too excited, I do still have Parkinson’s – it’s just that they’ve dropped the word ‘Disease’. That’s fine by me: ‘disease’ does sound awfully unfriendly.  In future, I think I’ll just call myself dopaminely-challenged.

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