Annmarie O'Connor: New Parkinson's podcast gets personal

Irish Examiner fashion editor Annmarie O’Connor on the upcoming five-part series, which explores the 'lived experience' of the neurodegenerative condition  

Annmarie O'Connor, Irish Examiner fashion editor (right) and Lisa Wynne, Parkinson's Association of Ireland specialist nurse. Pic: Larry Cummins

HAVING been diagnosed with early-onset Parkinson’s disease in her 40s, Irish Examiner Fashion Editor, Annmarie O’Connor, has become an outspoken advocate for people with the condition.

In December 2021, the stylist and bestselling author was told she had the incurable neurodegenerative condition that affects movement, balance and speech.

The exact cause of PD remains unknown, although scientists believe it results from genetic and environmental factors that cause nerve cells producing dopamine — the motivation or reward chemical in the brain — to die off.

Annmarie hopes to spread awareness about the condition and bring about positive social change through her five-part series, Living Your Best Life: A Parkinson’s Podcast. It debuts on Tuesday, April 11, World Parkinson’s Day.

“People can be scared or ashamed when diagnosed with PD and are not sure where to turn,” says Annmarie.

“A lot of the episodes will be based on tips that people with Parkinson’s have used for living their best lives. It’s something that you can live with, although it challenges you every day. Having a sense of community is crucial in terms of how we move through the world and navigate the changing landscape of Parkinson’s.”

The podcast series is aimed at the 15,000 people in Ireland with Parkinson’s and the people in their lives. One in 100 people over 80 lives with the condition, which affects between one and two people in 1,000 of the general population.

Around 10m people have PD worldwide, and while most people get diagnosed when they’re over 60, an estimated one in 20 people will first experience symptoms under 40.

A problem shared

As well as sharing her own story, Annmarie will speak to people at different stages and onsets of the condition.

The inspiration for the podcast came from the huge reaction she received when she wrote about her diagnosis in the Irish Examiner last August, and subsequently discussed it on TV and radio with Tommy Tiernan and Brendan O’Connor.

Many people reached out to her via social media and email, and she realised all were experiencing the condition in different ways. Some had chosen to stay silent.

“It always upsets me when I hear people say they haven’t told anyone, apart from maybe their partner or mother,” she says. “The emotional weight of dealing with a secret is huge, let alone when you’re trying to hide motor symptoms. Some people may have tremor or swallowing issues or stiffness and rigidity, and are alone dealing with the physical and emotional impact of this disease. I have found when we share, the community will rush in to help and support us.”

The reluctance to share their diagnosis can stem from people’s embarrassment around the involuntary tremors that affect 70% of people with Parkinson’s or dyskinesia — spontaneous movements of the face or body that can result from medication. Some people may shuffle when they walk or have gait, balance and coordination issues. There’s also a symptom called “masking”, where low dopamine can affect the person’s ability to emote physically. They develop a “masked” face and others may wrongly assume they’re cranky or in a bad mood.

Along with covering common symptoms, the podcast will help explain the “invisible” symptoms of Parkinson’s, which include anxiety, depression, apathy, fatigue and cognitive changes. They’re not always obvious to others, but they cause a lot of distress to people with PD.

Annmarie O'Connor, Irish Examiner fashion editor speaking with Lisa Wynne, Parkinson's Association of Ireland specialist nurse.

Low mood

Lisa Wynne is a guest on the podcast and a specialist nurse with the Parkinson’s Association of Ireland (PAI). She estimates that psychological support forms 80% of her work through the support line.

“Low mood is something I see an awful lot of and there are huge anxiety issues,” she says. “The more worried or stressed someone is about a tremor, the worse it’s going to be, and it can result in people withdrawing from social occasions. Apathy can also be present as dopamine becomes depleted. So when I say to people that they need to exercise and meet up with friends, the lack of motivation is there because their dopamine levels are low.”

Annmarie understands why people want to withdraw as she said no to a lot of things in the first few months following her diagnosis. Her medication hadn’t hit the “sweet spot” so her main symptom — a tremor — was more marked.

“I would be quite a confident person but I limited myself to a certain degree,” she admits. “Then I had a chat with myself and decided to put my story out there so that people could hopefully get something from it. My medication is helping a lot so my restless legs and insomnia are pretty much taken care of and my tremor is mild compared to what they used to be. It has its moments, like a wilful toddler kicking off in the supermarket, but it is 85% better than it was.”

Annmarie says it’s vital for people to educate themselves about the medication they’re on, such as dopamine agonists that stimulate the parts of the brain influenced by dopamine. While incredibly effective, they can have side effects.

“Roughly 17%, or one in six people, will experience impulse control problems, which range from gambling and overspending to hypersexuality and becoming obsessed with hobbies,” she says. “These issues come on slowly, so it’s crucial to be aware and keep the lines of communication open with your care providers.”

Lisa recalls how one person who contacted her after hearing Annmarie speak publicly hadn’t told anyone that they had been living with the condition for eight years.

“It’s due to stigma,” she says. “People still believe that it’s the disease of an older person and couldn’t possibly affect somebody in their 40s or younger. Some people are afraid of what the perceptions of others will be and don’t want people to treat them differently.”

Annmarie O'Connor, Irish Examiner fashion editor and Lisa Wynne, Parkinson's Association of Ireland specialist nurse.

Different symptoms

From chatting to people with Parkinson’s, Lisa has found that the condition often presents as a slowing or restriction of movement, such as a frozen shoulder, a tremor in the hand and constipation — due to the improper functioning of the autonomic nervous system.

“Constipation occurs because the messages from the brain to the bowel are disrupted and it slows down,” she says. “I find in people with younger onset PD that psychological symptoms like heightened anxiety might have been there for years beforehand.”

Annmarie hopes the podcast series will give people a sense of agency over the condition, so they will reach out for the help they need. This may be through the PAI, which helped her enormously. Since going public, she has been told that some people didn’t realise that women can develop Parkinson’s and that it also affects younger women. She is keen to explore women’s experiences as she feels the representation of Parkinson’s needs to be much broader in scope.

“When Parkinson’s was suggested as a possibility prior to my diagnosis, I summarily ignored it because I thought, ‘Oh, this is something that happens to elderly men, not women in their 40s like me,’” she says. “I’ll be speaking to a dietitian on the podcast with early-onset Parkinson’s, who has become an advocate for the unmet needs of women [with the condition].”

These needs relate to the additional challenges women face due to hormone fluctuations, which impact everything from menstruation to menopause.

Annmarie found that her tremor got worse for around three days per month, preventing her from writing. As a freelancer with deadlines to meet, this proved especially troublesome.

Lisa explained that she was experiencing an augmentation of her symptoms before her monthly menstrual cycle, a common feature of the condition.

According to Lisa, women’s medications may need to be tailored to work optimally at different times of the month. Parkinson’s also poses particular challenges to women experiencing perimenopause and menopause, and she would welcome more research into this area.

“How do you tell if symptoms like restless legs, sleeping issues, issues with pelvic floor, aches and pains and higher levels of anxiety are due to menopause or Parkinson’s?” she asks.

Not giving up easily

When it comes to early-onset Parkinson’s, Lisa acknowledges that the diagnosis can be quite difficult. It grieves her that there are not enough services available and there are long waiting lists for the ones that do exist.

“There are more drug options available to treat younger-onset people, and I find that they can be more motivated to do the exercises, get involved with classes and do research,” she says. “Younger people tend to fare quite well compared to the older group.”

Annmarie is excited about sharing what she has learned so far with others through the podcast series, and is determined to create awareness and help others to deal with their own journeys with Parkinson’s.

“I’ve spent 49 years creating a life that I like, and I’m not going to give it up that easily,” she says. “I want to uplift people’s voices through the podcast and look at how we can raise positive visibility of people with PD.”

• Living Your Best Life: A Parkinson’s Podcast, will be broadcast from April 11 to 15 on irishexaminer.com and other podcast platforms.
• The Parkinson’s Association of Ireland’s nurse helpline is available on 1800 359 359 from Monday to Friday, 9am to 5pm.
• See: parkinsons.ie