App aims to help women with Parkinson’s disease improve their quality of life

Most neurologists never discuss impact of menstruation on disease activity or how medication regime might be adjusted to help ease impact, survey found

Women make up 40 per cent of those living with Parkinson’s disease, yet few, if any, clinicians take the monthly fluctuations in female hormones into account when putting their treatment programmes together. This oversight is material, as Richelle Flanagan, co-founder of soon-to-be-launched Parkinson’s management app My Moves Matter, had noticed that her symptoms got worse just before her period.

To establish whether other women were experiencing the same thing, Flanagan ran an online survey. More than 140 women responded, and 86 per cent reported intensified symptoms in the week before menstruation. “The survey also highlighted that, although these women were suffering, their neurologists either never discussed the issue or never discussed adjusting their medications to help,” Flanagan says.

Determined to do something to improve life for those affected, Flanagan, who has young onset Parkinson’s, took part in a digital health hackathon where she teamed up with data, machine learning and AI expert, Rene Reinbacher. What subsequently emerged from their meeting of minds was the outline for an app that would help women to monitor how hormonal changes – as well as other factors, such as what they ate and when – affected their symptoms.

“When you live with Parkinson’s, everything matters – your diet, your exercise, your sleep and when you take your medication, because they all make a difference to how well you can live day-to-day,” Flanagan says. “But keeping track of it all is a full-time job, especially when you’re trying to hold down a job and look after kids or grandkids, on top of living with a disease that impacts how you move and feel.

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“The majority of digital health applications are focused on tracking or sensors, not on empowering a person to self-manage their condition alongside their traditional treatment.”

Flanagan is passionate about the need for self-management tools for those living with Parkinson’s, not least because most people have limited access to their neurologist, often seeing their consultant only once a year. In addition, help for those under 60, who account for 30 per cent of the estimated 10 million people worldwide living with Parkinson’s, can be very hard to find in many countries.

“My Moves Matter will work wherever someone is, and will help them to unlock the power of knowing what works for them so they can take back some control and live their best life with Parkinson’s,” Flanagan says. “This app is not just about health and wellbeing. It goes much deeper, and is best described as a digital self-care companion that will deliver personalised evidence-based therapeutic interventions driven by AI and machine learning to help people proactively manage their Parkinson’s.

“The app and the digital therapeutics can be used independently or in concert with medications, devices and other therapies to optimise their care and health outcomes.”

Flanagan, a physiologist who subsequently retrained as a dietitian, has been working in the field of nutrition and dietetics for almost two decades. She is highly active within the Parkinson’s community and is a co-founder of the Women’s Parkinson’s Project, an information resource with international reach aimed at those living with the condition.

My Moves Matter was set up in September last year and to date roughly €45,000 has been spent developing the prototype, sourced variously from prize money in the hackathon, feasibility funding from LEO South Dublin and backing from the New Frontiers programme at TU Tallaght.

Version one of the app will be launched in March and potential users can sign up from February at a discounted rate of €49 for the year. The full cost will be in the order of €99.

The next step for the company is a fundraising round of €150,000, which Flanagan says will most likely happen via a crowdfunding campaign to allow the wider Parkinson’s community the opportunity to back the idea.