Annmarie O’Connor on early-onset Parkinson's: My wellbeing was routinely challenged

Initially, tremors, stiffness, and restless legs were my symptoms, until stress and frustration from insomnia and muscular cramps joined the cohort.

This was all compounded by hormonal fluctuations consistent with my monthly cycle (a perfect storm for dopamine depletion) and the onset of perimenopause. So my emotional wellbeing was routinely challenged.

It took a chat with Lisa Wynne, the specialist nurse at Parkinson’s Ireland, to help me understand that my experience was not uncommon, despite no two people having the same combination of 40-plus symptoms. In fact, adjustments to diet and exercise could significantly assist my mood and movement, marking a new era for my self-management: I knew the rules of engagement and was also the referee.

I’m not alone. Mental-health issues are common in people with Parkinson’s, whether part of the disease, medication side-effects, or the result of having a long-term illness. “From my experience, through the Freephone charity support line, anxiety is one of the most frequent issues on 90% (or more) of touch points,” says Wynne.

The emotional weight didn’t resonate until I was forced to reckon with Parkinson’s impact on my ability to make a living. As my anxiety amplified, so did my symptoms.

The good news? According to Wynne, this vicious cycle can be broken by finding ways to relax, distract, and discuss.

“We need to have tools to bring the mind and body back to a state of calm, so they can work in a symbiotic relationship,” she says, whether that’s listening to music, or, in my case, taking a long bath. Most of all: “Don’t be afraid to talk about it with family and friends, so that they understand the more complex side of the disease. Break the stigma; break the cycle.”

Knowledge is power, something I learned from Richelle Flanagan, dietitian and co-founder of My Moves Matter, an app that helps women with Parkinson’s to live better.

In a survey of 240 women worldwide conducted by Flanagan in collaboration with the Women’s Parkinson’s Project and the PD Avengers, 80% of menstruating women reported a worsening of their Parkinson’s symptoms in the week before and the week during their period. This crucial piece of data saved me hours of unnecessary worry that my tremor was progressing and encouraged me to lighten my workload on those days. I’m now trialling the app as part of my health toolkit to understand what works for me.

Says Flanagan of the app, “We developed My Moves Matter to give people the power to notice these things…and to realise what will help you get through that week.

“Sometimes, when you’re in a low mood, the last thing you want to do is focus on healthy eating, but one of the primary things you should do is nourish yourself through those dips and make sure you’re doing gentler exercises, like yoga. It’s preventative, rather than being in the hole and thinking, ‘Oh, here I am again’.”

The My Moves Matter pilot study, in collaboration with University College Cork, is looking at the impact of different hormonal stages on a woman’s Parkinson’s symptoms.

“The top non-motor symptoms that came across for women,” says Flanagan, “were feeling anxious, tense or nervous, crying spells, irritability, mood swings, lack of interest or apathy — and fatigue.”

4972[/contentbox

Results will be published next year and should help towards the development of clinical guidelines for the treatment of women with Parkinson’s.

Exercise is also equally empowering for improving Parkinson’s symptoms, in particular disease-specific programmes like PD Warrior and LSVT BIG. Findings from a 2023 study, conducted by Claire Tucak on the effects of the PD Warrior 10-week exercise challenge, reported improvement in emotional well-being, reduced symptoms of depression and anxiety, decreased fatigue, and boosted mood and motivation.

The sticky wicket? Apathy affects 40% of people who have the disease and can reduce the will to work out.

So, how can we overcome this? “Once people get started on a PD-specific programme that targets their symptoms, things can improve pretty quickly, thus helping to change a person’s whole outlook on the condition and how they see themselves living with it in the future,” says consultant occupational therapist Marion Slattery.

This shift in perspective benefits the mind and body and lifts the spirits, says Slattery: “The outcome that surprises people the most is that they feel they have hope again.”

• Parkinson’s Awareness Week virtual education conference takes place on Saturday, April 13, covering the 40+ symptoms of PD and its impact on emotional well-being.
• www.parkinsons.ie