An interview with Richelle Flanagan from the Women’s Parkinson’s Project & World Parkinson Congress on August 12, 2023 by George Ackerman, Ph.D, J.D.
Biography
Richelle Flanagan is a registered Dietitian and was diagnosed with YOPD shortly after the birth of her second child. She is an ambassador for the World Parkinson Congress in Barcelona, 2023. She is particularly passionate about two areas (1) the importance of diet for PD and (2) the unmet needs of women with PD. She is a co-founder of the Women’s Parkinson’s Project www.womensparkinsonsproject.com and co-founder of a digital health start-up, My Moves Matter www.mymovesmatter.com, a digital self-care companion to empower people with Parkinson’s to live better lives.
I was working as a Dietitian in my clinic when a patient came back to see me after a 5-year gap. I noticed that my handwriting was a lot smaller than it had been when I had last written in the patient’s record card. I thought that’s odd and when I tried to make it bigger I couldn’t. That was even more weird and led me to research the causes of decreasing size of handwriting and unfortunately micrographia related to PD kept popping up on Dr Google. I asked my GP for a referral to a neurologist. I was 3 months pregnant at the time with my second child. I had also been getting physio for an aching upper arm/shoulder pain but otherwise I had no other symptoms which I subsequently learnt were prodromal symptoms of PD. I was put through a trapped nerve test and a CT scan to rule out a tumor. My neurologist felt I was healthy and my symptoms so mild that is was unlikely PD but scheduled a DAT Scan to be sure. I had to wait until after my daughter was born and breastfed before I could have the DAT scan and it confirmed that I did have PD.
I had been the president of my professional body, the Irish Nutrition and Dietetic Institute and done a lot of advocating for better nutritional care for people with chronic disease. Having coeliac disease, I was also on the board of the Coeliac Society of Ireland for whom I did a lot of advocacy work. Unfortunately, lack of access to dietetic care is poor in Ireland as it is in many countries around the world. When I attended the World Parkinson Congress in Kyoto in 2019, I was looking forward to hearing about nutrition for PD and to meeting other dietitians. I had signed up for the health professional networking evening to find that there was no dietitian break out room as there weren’t enough Dietitians! After Kyoto I felt things had to change and so I applied to be a WPC Ambassador and was successfully selected. My goal was to raise awareness on the importance of diet for people with PD and to ensure we had a Dietitian break out session in the next WPC in Barcelona. I had hidden my diagnosis for the 2 years prior to Kyoto for fear of my clients and colleagues thinking that I was not capable of doing my job anymore but meeting so many wonderful advocates at WPC Kyoto blew that out of the water and soon after I got home, I wrote an article for my professional body magazine on the unmet nutritional needs of people with PD and there began my PD advocacy journey.
Can you tell me more about your advocacy?
My focus has always been on better nutritional care for PwP but one other phenomenon was as a result of my experience where my PD symptoms appeared to be worse the week before my menstrual period. I realized that other women I met through Kyoto were experiencing the same issue and as were many women on various support groups. We felt generally that women with PD needed more focus and that our needs were different to men with PD. Myself and two wonderful people who are now good friends, Kat Hill and Sree Sripathy from the USA decided to set up the Women’s Parkinsons Project to raise the voices of women with PD. I suggested we do a survey of women to about hormones and PD. The results were astounding, 81% of women still menstruating reported worsening of their symptoms the week before their period and 51% the week of their period.
In addition, 88% of women reported that their neurologist never discussed hormones & the possible impact on PD symptoms. 95% reported that their neurologist had never adjusted their medications around their menstrual cycle and 96% reported that their neurologist never suggested HRT. When I looked into the evidence behind the phenomenon of PD symptoms worsening around the period and also perimenopause, I found that estrogen drops before the menstrual period and with this dopamine levels also fall and similarly as a woman transition to menopause her estrogens levels drop also affecting dopamine levels.
We did two webinars on the survey results, the first with the Cure Parkinson’s Trust thanks to the support of Helen Matthews and with the PMD Alliance thanks to Dr Indu Subramanian. Over 600 women attended across the 2 webinars and the issues were not just about the menstrual cycle and PD but the menopause, stigma, fear of dementia, future care, juggling work and parenting to name a few. We decided we needed to write a paper on the unmet needs of women with PD which was well received by the PD community and put more focus on the need for personalized care based on sex and gender. https://www.parkinson.org/blog/science-news/women
I am also on the committee of the Dublin branch of the Parkinson’s Association of Ireland where I have advocated for better access to PD specialist nurses in Ireland with a petition that gathered almost 6K sign ups https://my.uplift.ie/petitions/proper-care-for-people-living-with-parkinson-s-disease. I developed survey to assess nutritional care of PwP in Ireland and campaigned for better access to dietitians. I have also spoken on women and PD in the European Parliament in Brussels by invitation of the European Federation of Neurological Associations. https://www.efna.net/mep-interest-group-on-brain-mind-and-pain-meeting-report/.
I was very honored to have been nominated and awarded one of the WPC Community Award https://www.worldpdcoalition.org/page/WPC_Award
What is your passion and how did you get involved in Parkinson’s awareness and hope for a cure?
My passion is about better nutritional care for people with PD and equitable personalized care for PwP based upon their sex, gender, age, and ethnicity.
I think we all want a cure but like cancer, it seems there are many forms of PD so there may be a need for several cures. I do, however, wish for something to halt progression. If I could halt my progression where it is today, I would be happy.
What type of goals do individuals with Parkinson’s awareness have when working with you?
I don’t work individually with PwP now as I have been focusing on developing an app for PwP called My Moves Matter. The app is called My Moves Matter because every choice we make matters. Our next move – are we going to exercise, take out medications on time, eat more fruit and veg, get more sleep. Our choices today impact how we not only feel today but also tomorrow.
What effect can your advocacy have on an individual with Parkinson’s awareness?
Attending WPC in Kyoto I saw people of all stages of PD living their best lives no matter what they were facing, this empowered me and so I hope that my advocacy can help pwp to take whatever control they can of their PD rather than PD taking control of them.
What would you like to see as a future goal for your advocacy?
To see better access to nutritional care for PwP and for more equitable personalized care for PwP based that considers the differing needs based upon sex, gender, age and ethnicity.
What events do you participate in?
I was asked to take part in a Digital patient centered hackathon run by an organization called Day One in Switzerland. I brought the idea of developing an app to enable women to track their PD symptoms in relation to their menstrual cycle so we could provide women with a means of being able to show neurologists that this was a real issue. I couldn’t believe it when we won the hackathon and that there was a prize fund which was €15000. I really felt that the money had to be spent on developing the app. I also approached my local enterprise board for further feasibility funding and started an Enterprise Ireland start up program which came with a stipend which I also used to develop the app called My Moves Matter which just launched on the apple and google store and is free to download. Although we started with a focus on women, the app is for any gender as we wish to develop the app for the delivery of personalized care for PwP. Women can indeed track their hormones on the app, and we have now added the ability to track exercise. It also enables people to log their symptoms by not just text but by voice, video, and images as we know too well that when you want to log a symptom, we are often not able to type as easily. We will be also running a pilot trial with Professor Aideen O’Sullivan of University College Cork to track hormones and their impact on women with PD.
How does this also assist the caregivers?
The My Moves Matter app also can help caregivers as they can use it to track their loved one’s symptoms and medication. Theres also a journal to help further log what issues are happening for their loved ones. We all know what it’s like with PD, there are so many moving parts that we often forget the details when we come to the neurology appointment. The app enables PwP and their loved ones to share what’s been going on and a picture tells a thousand words. Often people don’t even know what symptoms they are having and so logging a video of what’s going on provides the neurologist with the info they need to inform their decisions. Because let’s face it, people tend to do better in their exam with their neurologist than when they are at home. This is the dopamine effect where the anticipation of meeting their neurologist can boost the dopamine and they seem better in clinic. There is research on this phenomenon. The app also enables people to relay life at home living with PD. They can also use it to see how a new drug affects them or how a new lifestyle change affects their symptoms.
How can someone get in touch? What is your website?
The website is www.mymovesmatter.com and the app can be downloaded for free from https://apps.apple.com/ie/app/my-moves-matter/id6444953898 or https://play.google.com/store/apps/details?id=com.mymovesmatter.app&hl=en-IE
If you had one final statement or quote you could leave for the Parkinson community, what would it be?
‘Start where you are, use what you have, do what you can’ was a quote I came across by the famous tennis player Arthur Ashe and it really resonated with me.