Podcast: Breaking the silence on impulsive and compulsive behaviours

Episodes

Author: Johanna Stiefler JohnsonPublished: 24 February 2022

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A composite image of Vicki Dillon and Dr Angelo Antonini.

In a powerful and poignant conversation, two members of the Parkinson’s community share how impulsive and compulsive behaviours can impact the lives of people with the condition. Find out about our latest podcast episode which highlights this ‘taboo’ topic


When UK-based campaigner Vicki Dillon was diagnosed with Parkinson’s disease, she felt embarrassed about what she, at the time, viewed as “an old person’s disease that didn’t fit me or what I represented”.

“I just wanted to be able to take a pill to make it all go away,” she tells Italian-based neurologist Dr Angelo Antonini in the latest episode of the Parkinson’s Life podcast.

In fact, shortly after her diagnosis, Vicki was prescribed the highest dose of a dopamine agonist – a medication that imitates the action of dopamine to treat Parkinson’s symptoms. “I was more or less swinging off the chandeliers half the time,” she recalls. “I had a boundless energy, didn’t need to sleep, would do crazy things. No brakes, no awareness of danger – no control over money at all.”

Living in a “bubble” of positive energy, with the symptoms of her condition at bay, Vicki says she thought: “Oh my God, this isn’t so bad. I can cope with this.”

But suddenly her life came “crashing down”. The onset of impulsive and compulsive behaviours associated with the medication caused changes in Vicki’s family life, career and personality that would impact her for years to come.

An image of Vicki Dillon.

Vicki Dillon.

Stigma, silence and strength

Angelo says this is, unfortunately, an experience Vicki shares with “many other people”. With around 30 years’ experience supporting people with Parkinson’s, Angelo recognises the importance of treating the challenges of impulsive and compulsive behaviours with support, empathy, and open communication about the possible effects of dopamine agonists.

“In a normal condition, the brain is able to deal with dopamine in a very accurate way,” he explains. “When we provide medications, this process is no longer relying on normal feedback in the brain. People with Parkinson’s may start experiencing an excessive drive to entertain and engage themselves in pleasurable activities.”

A portrait of Dr Angelo Antonini.

Dr Angelo Antonini.

This drive can then lead to “behavioural problems” while people can also encounter the stigma attached to subjects like compulsive gambling and hypersexuality. “This is a difficult topic,” says Angelo. “I think it is very important to make people aware. Talking is very important. Communication is key.”

As Vicki’s story highlights, there is hope for others experiencing these challenges. Several years on from what she calls “the darkest time in my life”, she feels optimistic about the future.

“I turned 50 last year, and it was probably the best birthday I’ve had,” she says. “I feel free from a lot of negativity regarding my condition. I feel proud. ‘Parkie’ and proud!”


This podcast has been supported by a grant from the Boston Scientific Foundation Europe, whose mission is to improve patient wellbeing, using digital or innovative solutions.


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