Movers and Shakers: Embarrassing Aspects

Not for the faint-hearted

When Paul Mayhew-Archer first mentioned doing an episode of Movers and Shakers about the more embarrassing aspects of our condition, a long silence fell around the table. Then someone - I think it might have been the judge - said “what a good idea Paul, so good in fact that why don’t you do it on your own?”

But in the event we did all turn up, to hear Paul list some of those symptoms we would rather not talk about: “Constipation, erectile dysfunction, dribbling and drooling, gambling and hypersexuality.”

Paul, braver than the rest of us, goes on to describe one of his more embarrassing symptoms and, as ever, does it with disarming humour. Tune in to hear him explain why erectile dysfunction and memory loss can be a dangerous combination. He also explains exactly why talking about these matters is important:

“The reason for doing this episode is to reassure people with Parkinson's that none of us is on our own. Whatever embarrassing symptom you have, others will also have it. The other reason for doing this episode is to tell the rest of society how difficult this bloody illness is, and how much help and understanding we need.”

We latch on to constipation, a staple of British humour, as something we can all just about talk about without too much embarrassment. Mind you, Gillian goes above and beyond with her eye-popping tale of attending a class by a gastroenterology nurse on “how to go to the loo”. Probably best to wait until after breakfast before listening to this.

Paul, Rory and Gillian talking to Jason and Kirsty

But at the heart of this episode is the story of Kirsty and Jason, a couple whose lives were torn apart by an embarrassing side effect of a common Parkinson’s drug. Their marriage survived and they told us they wanted to help others facing a similar experience.

Diagnosed with early onset Parkinson’s at just 27, Kirsty was put on what is known as a dopamine agonist, a drug known to provoke amongst a substantial minority of its users compulsive behaviours such as gambling or hypersexuality. Jason says it became apparent that, while the medical team treating her were doing their best, they had very little experience of helping a young person with Parkinson’s.

“What happened was that the medication that Kirsty was prescribed actually changed her dramatically. It changed her personality. It caused her to have some mental health issues. And it escalated to the extent where Kirsty actually left myself and the two children for approximately 18 months.”

Kirsty says she can barely remember any of this period except that she became “fixated on this guy”, a man who himself had deserted his partner and children, and moved in with him. But Jason stuck by Kirsty, even after an occasion when on a visit home she nearly stabbed him with a knife, and when friends and family were telling him to get a divorce. He says this was not the woman he had married but “someone that she's morphed into because of the medication.”

He went so far as to invite the man with whom Kirsty was living to dinner:

“God knows what I was thinking at the time, but I really wanted to explain to him, this is not the woman that you can currently see. He came, and he was here for about an hour and a half. And he realised, I think, at some point, ‘Shit, this is not the fairy tale that I'm living here.’ ”

Meanwhile, Kirsty was desperately trying to battle her mental health issues while holding down a job in the NHS and feeling that she was getting no help from her medical advisors. “I kept telling them, I didn't feel right. And it was getting to the extreme - I felt like I wasn't being listened to.” Eventually she told her consultant that her brother had also been diagnosed with Young Onset Parkinson’s at just 21 and she wanted to see a neurologist who specialised in treating younger people.

That did happen and gradually her new consultant brought the dose of the drug down to a level that was safe for Kirsty. It was a long slow process, “a challenging time” according to Jason, and then there was a retreat in Sardinia for young people with Parkinson’s and that was “a life-changer”, teaching Kirsty new ways of coping with her symptoms.

On top of everything else, Kirsty then had to face a cancer diagnosis, and then a hysterectomy. But after that, she says, she began to return to her old self. “I knew Jason was there to support me and my kids. I felt, right, now is your time to be how you used to be.”

It seems extraordinary that it took so long for the medics to wake up to the damage being done to Kirsty by the drugs. I asked her whether she was angry about that:

“Anger gets you nowhere,” she said. “I just think when you're diagnosed, I think like Jason said, you need more support, you need more advice, and I don't think going straight into the medication is the way forward.” She and Jason now run a Parkinson’s support group, sharing what they have learned.

One lesson from the nightmare Kirsty and Jason have been through is that there are real dangers in not talking about the embarrassing aspects of Parkinson’s and the medication used to treat it. That is the message of our other guest, Parkinson’s Nurse Jo Bromley.

She tells us how she builds a close, trusting relationship with her patients so that they do feel they can tell her anything. But with symptoms like obsessive compulsive behaviour, even if they have been warned about it by their doctors, many feel reluctant to talk: “When you're experiencing it yourself, it's really frightening,” she says. “People go, ‘I just feel really shamed telling you this Jo’ or ‘I'm so embarrassed.’ You shouldn't be feeling embarrassed.”

While people with Parkinson’s might talk to their doctor about their motor symptoms - stiffness, tremors and so on - it seems they are more likely to feel comfortable talking to a nurse about non-motor symptoms, including the embarrassing ones. Jo talks about a survey showing 85% of people felt embarrassed at having Parkinson’s and 26% felt a sense of shame. She says her mission is to take away that embarrassment and shame.

Jo is Paul’s Parkinson’s nurse and he gives her a rave review. But for many people around the UK getting access to a nurse or other members of a multidisciplinary Parkinson’s team to advise on anything from constipation to nutrition or exercise is nigh on impossible. That is just one of the themes of our Parky Charter which we will continue to develop over the next few weeks.

If you want to let us know your thoughts about embarrassing aspects of Parkinson’s - or any other views on the podcast - you can contact us by email at feedback@moversandshakerspodcast.com. Rest assured, if we want to refer to your emails in a future episode we will contact you and you can choose to be anonymous or tell us you would rather not be featured,