“Parkinson’s Disease (PD) is a neurodegenerative disorder that affects predominately the dopamine-producing (‘dopaminergic’) neurons in a specific area of the brain called substantia nigra.” -Parkinson’s Foundation
A misconception about Parkinson’s Disease is that it only affects men, but 40% of people with Parkinson’s around the world are women. It’s also not widely known that 30% of people with Parkinson’s around the world are under the age of 60.
The Women’s Brain Project had the honour and pleasure of interviewing Dietician and PD Advocate, Richelle Flanagan for our WBP Let’s Learn Series. She was diagnosed with young-onset PD 7 years ago. She shared her daily symptoms with us as well as discussed some of the stigma and various stereotypes that exist about PD.
The interview is available to watch on YouTube or even read below.
What is your name, where are you from, and what is your diagnosis?
Richelle Flanagan: “Hello, my name is Richelle Flannigan, I am based in Dublin, Ireland. I was diagnosed with young-onset Parkinson’s Disease seven years ago.”
What symptoms affect your day-to-day life the most?
Richelle Flanagan: “I am a Dietician and I really enjoy my work but unfortunately, my symptoms which are micrographia (which is small handwriting), rigidity and slowness of movement (otherwise known as Bradykinesia, cause problems with my typing so it is something that I need my medication to help manage those symptoms so that I can keep gainfully working because the reality is that people with young-onset Parkinson’s lose 20 years of work life. I’d say primarily because they’re not getting access to the services that they need.”
Do you have good access to treatment and services that meet your health needs?
Richelle Flanagan: “I have been lucky that I have got access to an OT, and a speech and language therapist but that was because as a dietician I knew I had to push to get those services, I knew what I needed but many people with Parkinson’s don’t realise that they need the input of different therapies to really help them live better with Parkinson’s Disease.”
Have you experienced sex and gender bias in your healthcare journey?
Richelle Flanagan: “In terms of gender and sex bias, certainly, in my own case, my neurologist felt that I was probably too young and as a woman unlikely to have Parkinson’s so I had to have a brain scan, a nerve test, and also wait until my daughter was born and breastfed to have a CAT Scan which confirmed that I did have early-onset Parkinson’s.
However, I also know that many women that I am friends with have reported that they have had a late diagnosis of Parkinson’s. It’s probably due to the fact that the branding of Parkinson’s is an older white male, when actually 40% of people with Parkinson’s around the world are women and also 30% of people with Parkinson’s around the world are under the age of 60. A lot of people don’t realise that.”
What do you know about the Women’s Brain Project, how have they supported you?
Richelle Flanagan: “I know that they are a fantastic organisation. I reached out to Dr Maria Teresa Ferretti at one of her conferences a number of years ago and asked, you know, if could they include Parkinson’s. Maria and the Women’s Brain Project have been very great supporters of raising the unmet needs of women with Parkinson’s. Maria has supported us on a paper that we published on the unmet needs of women with Parkinson’s Disease with Professor Elena M0ro and Dr Indu Subramanian. And also Maria actually put me forward as a potential Brain Health Champion for the Day 1 Health Hackathon in Switzerland.
And actually, as a result of that, I have now co-founded a company that has a digital self-care companion called My Moves Matter, for people with Parkinson’s, initially focusing on women and the unmet needs of women in terms of their Parkinson’s symptoms being impacted by their menstrual cycle and their menopause. So Maria has been a great supporter and the Women’s Brain Project, in terms of raising the unmet needs of women with Parkinson’s Disease.”
How important do you believe the work of the Women’s Brain Project is?
Richelle Flanagan: “What I would say about the Women’s Brain Project in terms of sex and gender work that they’re doing is really important. They published a White Paper there, and obviously, there’s a huge area in terms of the unmet needs of women that need to be addressed, and the Women’s Brain Project are really moving the needle on that.
But that’s not to say that men are left out of the picture, you know, you’re really focusing on the sex-and-gender-specific needs. Women approach living with neurological conditions differently than men and also, the system cares for them differently. We need to look at the disparities and improve care and research for both— for all genders and all ages and all ethnicities. ”
What do you wish more people understood about brain and mental disorders?
Richelle Flanagan: “Really I suppose in terms of Parkinson’s that it’s not just an ‘older white man’s shaky disease’, and that all ages, genders and ethnicities can get Parkinson’s Disease. Because by people being more aware of that and raising the awareness it means that people who are, you know, suffering from symptoms may get diagnosed earlier, or people who are suffering with Parkinson’s will not fear the stigma and actually you know, look for the help that they need. ‘Cause I know myself and I was diagnosed first as a dietician, I hid my diagnosis for two years for fear of stigma but I realised when I attended the World Parkinson’s Congress in Kyoto in 2019, that it was really important that I did step out and step forward with regard to my own Parkinson’s and it enabled me to improve my own care but also hopefully raise awareness for other people to get better access to care. ”
If you had one message of hope for those living with a brain or mental disorder, what would it be?
Richelle Flanagan: “If I had one message of hope for those living with a brain condition is really that it’s very important for the brain that you are connected and that you do not isolate. We know through Covid that people with brain conditions worsened. Particularly, with Parkinson’s Disease, which affects dopamine and dopamine is the neurotransmitter of connection is really important. So if you’re hiding away at home you potentially are going to get worse.
You need to connect to the community, you need to connect with your health services and raise the voices to raise awareness of brain conditions because unfortunately, they are, you know, growing rapidly and Parkinson’s Disease is the fastest-growing neurological condition in the world after Alzheimer’s.
We need more awareness and more funding to go towards research, prevention, better treatments and hopefully a cure for some of the conditions, including Parkinson’s. ”
Thank you for allowing us to learn about Parkinson’s Disease through your story.
Richelle Flanagan: “So thanks to the Women’s Brain Project for everything you do and for doing this interview with me for World Parkinson’s Month and we look forward to continuing to work together.”
A note from WBP
No one should experience any form of bias when seeking medical care. No one should feel shame or embarrassment when receiving a diagnosis— we must break the stigma around women with brain and mental disorders. This is why the Women’s Brain Project is working to establish the first Research Institute for Sex and Gender Precision Medicine for a Precision Medicine approach for all. Please consider donating to our organisation.
About Richelle Flanagan
Richelle Flanagan is a Co-Founder of the Women’s Parkinson’s Project and the Co-Founder of My Moves Matter. She was diagnosed with Parkinson’s disease a few months after giving birth to her second child. Richelle has a Masters in Nutrition & Dietetics and a Postgraduate Certificate in Allergy. She is a founding member of the PD Avengers and WPC 2023 Ambassador for the 6th World Parkinson Congress. She is based in Dublin, Ireland.
Follow her:
Twitter: @RichelleFlan
Instagram: @richelleflanagan
LinkedIn: My Moves Matter
