From Women’s Parkinson’s Experiences to Evidence for Personalised Care

I first noticed a Parkinson’s symptom — micrographia, or small handwriting — while I was working in my dietetic clinic and three months pregnant. A decade later, that first small change in my handwriting has become part of a much bigger story: how women’s lived experiences can be recognised, measured and turned into evidence for better care.

At the time, I had no idea that my diagnosis would lead me on a journey that brought together my training as a scientist and dietitian, my experience in business, communications and advocacy, and my determination to see women with Parkinson’s have their experiences taken seriously in care.

As I began speaking with more women with Parkinson’s, one theme kept surfacing: hormones.

Women kept describing the same experience in different words: symptoms that shifted across the month, worsened during perimenopause, changed again after menopause, or seemed to respond differently when HRT entered the picture.

Yet these experiences were rarely being asked about in clinic. They were not being tracked consistently. And they were certainly not sitting at the centre of Parkinson’s research.

That unmet need would eventually become the foundation for My Moves Matter: a digital health platform designed to help women track symptoms, medication and hormonal changes so they can better understand and communicate what is happening in their bodies.

2022: Naming the Gap

In 2022, along with three Movement Disorder Specialists and two other women with young onset Parkinson's I co-authored the paper Unmet Needs of Women Living with Parkinson’s Disease: Gaps and Controversies. The paper made clear that women’s experiences of Parkinson’s — particularly the psychosocial, hormonal and life-stage dimensions — had been overlooked for too long.

One of its key action points was practical and urgent: women with Parkinson’s need better tools to track and communicate symptoms that may be linked to menstrual cycles, perimenopause, menopause and postmenopause.

For me, this was never just an academic recommendation. It was a call to action. 

Women needed a way to show what was happening in their bodies — not only during a clinic appointment every six or twelve months, but in real life, across hormonal stages, medication cycles and everyday routines.

From Research Paper to Real-World Tool

The next step was figuring out how to turn that unmet need into something practical.

After the paper was published, I was invited by Maria Teresa Ferretti from the Women’s Brain Project to take part in a hackathon in Switzerland. The challenge was to develop an app that could help track women’s Parkinson’s symptoms across the menstrual cycle.

That hackathon produced the first prototype of My Moves Matter — and it was also where I met my co-founder and CTO, René Reinbacher.

We went on to win the hackathon. The original prize was 5,000 CHF, and the organisers chose to triple it because they wanted to see the project realised. With matched feasibility funding from the Local Enterprise Office, and later support through all three phases of the Enterprise Ireland New Frontiers programme, the idea began to move from lived experience and unmet need into a real digital health tool.

2023: Women Told Us What Was Being Missed

In 2023, we surveyed women with Parkinson’s about the impact of perimenopause and menopause. The results were sobering.

The survey included 169 respondents, and 87% had been diagnosed with Parkinson’s before the age of 60. Women described menopausal symptoms such as fatigue, sleep disturbance, urinary urgency and night sweats overlapping with Parkinson’s symptoms — making it difficult to untangle what was menopause, what was Parkinson’s, what was medication-related, and what was all three.

More than 30% reported worsening Parkinson’s symptoms during perimenopause or menopause, especially non-motor symptoms such as sleep problems, anxiety, pain and depression. Tremor, stiffness and longer OFF periods were among the motor symptoms most affected.

Yet only 5% said their neurologist had discussed perimenopause, menopause, Parkinson’s and HRT with them. That number should stop us in our tracks. If hormones are influencing symptoms, then failing to ask about them means missing part of the clinical picture.

That was the reality in clinic: women were experiencing changes, women were asking questions, but the system was not routinely asking about hormones.

2024: Moving From Listening to Measuring

In 2024, with angel investment and support from an Enterprise Ireland Innovation Voucher, we funded research with Professor Aideen Sullivan’s neuroscience research team at University College Cork to study how hormonal changes affect Parkinson’s symptoms in women.

This was an important shift. Women would not only have a way to validate their own experiences and bring evidence into clinical conversations; we were also beginning to build the evidence needed to support what they had been saying all along.

2026: Presenting the Findings at the World Parkinson Congress

Last month, I had the privilege of presenting early findings from this work at the World Parkinson Congress on behalf of the wider research team from University College Cork and My Moves Matter.

For me, it was a full-circle moment: a decade after my own diagnosis, questions that began in lived experience were being shared as research findings at an international Parkinson’s conference.

The poster, Tracking Symptoms and Medications in Women with Parkinson’s Disease, shared findings from 493 women with Parkinson’s who completed online surveys. Of these, 131 used the My Moves Matter app to track symptoms, medication use and menstrual cycles.

The findings showed that menstruating and postmenopausal women reported different Parkinson’s symptom patterns. Menstruating women were more likely to report rigidity and dyskinesia, while postmenopausal women were more likely to report postural instability.

Non-motor symptoms also differed, with mood swings, depression, anxiety and pain more commonly reported by menstruating women.

Among women using the app, symptoms that differed significantly between menstruating and postmenopausal women included dyskinesia, irritability, crying spells, excessive daytime sleepiness, hot flushes, pelvic cramps, mood swings and increased appetite.

These are not small symptoms. They affect whether a woman can work, parent, sleep, exercise, socialise or simply get through the day. If these patterns are not asked about or tracked, they are easy to miss in routine care.

The HRT and Tremor Signal

One of the most interesting findings presented in the poster related to HRT and tremor.

Among postmenopausal women, researchers compared motor symptoms between HRT users and non-users across age groups. The strongest signal appeared in women aged 50–54, where HRT users reported substantially less tremor than non-HRT users.

The groups were small, so this finding must be interpreted carefully. It does not prove that HRT reduces tremor. But it does raise an important question: could there be a window during early menopause where hormonal support influences tremor in some women with Parkinson’s?

That question matters. Our earlier survey found that 42% of women who had taken HRT reported a positive effect on their Parkinson’s symptoms, although many were unsure. This uncertainty is itself important. Without better tracking, it can be extremely difficult to separate menopausal symptoms from Parkinson’s symptoms, medication effects, sleep disruption and day-to-day fluctuations.

HRT is not appropriate for everyone, and decisions about its use need to be made individually with medical advice. But these early findings suggest that the relationship between hormones, treatment and Parkinson’s symptoms deserves much closer attention.

From Experience to Evidence

Looking back, the thread is clear. Women described patterns that were not being routinely asked about, measured or understood. Those patterns became research questions. The research questions became tools, surveys and collaborations. And now, they are beginning to generate the evidence needed to change care.

That is what patient-led research can do. It can take what women are saying in real life, turn it into research questions, and build tools that make those experiences visible, measurable and harder to ignore.

Towards Personalised Parkinson’s Care

The findings presented at the World Parkinson Congress are an important step in that journey. They suggest that hormonal stage may influence symptom patterns in women with Parkinson’s, and that care may need to be tailored more carefully across menstruation, perimenopause, menopause and postmenopause.

We are not there yet, but this evidence is an important step towards more personalised care for women with Parkinson’s. This is not just about hormones.

It is about women being believed. It is about taking what women report seriously enough to measure it. It is about turning lived experience into evidence.

 And it is about building tools that help women advocate for themselves while also creating the evidence clinicians and researchers need to deliver better care.

Women are not smaller men. Parkinson’s does not affect us all in the same way.

The next step is clear: clinicians need to ask, researchers need to measure, funders need to invest, and women with Parkinson’s must be included in shaping the research, tools and care that affect their lives.