What does a registered dietitian do when she discovers she has young-onset Parkinson’s? She turns her diagnosis into a mission — building the tools and programs she wished had existed for herself and the thousands of others navigating the same uncertain road.
Richelle Flanagan has spent 21 years as a registered dietitian advocating for people to get access to quality nutrition care. When she received her own diagnosis of young-onset Parkinson’s, while three months pregnant, she found herself on the other side of the consultation room. In this episode of LSVT Global’s Think BIG and LOUD podcast, hosted by Beth Peterson, Richelle shares her story and the practical, evidence-based wisdom that has grown out of it.
A Diagnosis Hidden in Plain Sight
Richelle’s path to diagnosis began with something almost imperceptibly small: her handwriting. While seeing a patient at her clinic, she flipped back through an old record card and noticed that her entries from five years prior were dramatically larger than what she was writing that day. No matter how hard she tried to write bigger in that moment, she couldn’t.
A search for “small handwriting” led her to the term micrographia, and from there, almost inevitably, to Parkinson’s disease. Combined with a nagging ache in one arm, which she’d been attributing to carrying bags, she sought a neurologist’s referral. Because she was pregnant, a DaTscan — used to confirm a Parkinson’s diagnosis — had to wait until after her daughter was born and had finished breastfeeding. By the time she received her official diagnosis, she had known in her heart for the better part of a year.
“It was obviously a very bittersweet delivery,” she reflects. A new daughter and a life-changing diagnosis arriving at nearly the same moment.
For two years after her diagnosis, Richelle told no one outside her closest circle. She didn’t have a tremor, the symptom most people associate with the condition, which made it easy to keep hidden. Fear of judgment from colleagues and clients kept her quiet. It was a trip to the World Parkinson Congress in Kyoto in 2019 that finally changed things. Surrounded by other young-onset women who were openly advocating, she remembered who she was: someone who had spent her entire career fighting for people’s access to good care.
I’ve advocated for many years for other conditions. Why am I not advocating for this one? – Richelle Flanagan
The Hormonal Factor No One Was Talking About
When Richelle returned from Kyoto, she kept in contact with other young onset women she’d met there. Together, they started noticing a pattern: their Parkinson’s symptoms seemed to worsen in the week before their menstrual period. After connecting with researchers and co-founding the Women’s Parkinson’s Project, they designed a survey to find out if others were experiencing the same thing.
240+
Women worldwide completed the survey
84%
Reported symptom changes linked to hormonal cycle
~50%
Noticed worsening during the week of their period
90%
Said their neurologist never discussed hormones with them
The science behind it is straightforward: estrogen drops before a menstrual bleed, which affects dopamine and other neurotransmitters. For women without Parkinson’s, this can mean mood swings, brain fog, and irritability. For a woman already low in dopamine, the effect is compounded significantly. Yet the overwhelming majority of neurologists — through no fault of their own, Richelle is careful to note, as they simply aren’t trained in it — were never raising this with their patients.
The finding drove Richelle to build something concrete: an app that would let women track their symptoms alongside their hormonal cycle, giving them real data to bring into the consulting room.
My Moves Matter: Putting Evidence in Your Pocket
The My Moves Matter app was born out of a hackathon in Switzerland — an initiative Richelle entered as a “patient champion” with the idea of building a symptom-tracking tool specifically designed for women with Parkinson’s. Her team won, the prize money tripled to 15,000 Swiss Francs, and with additional support from Ireland’s Local Enterprise Office, the app became a reality.
It’s free to download on the Apple App Store and Google Play, and it’s designed with Parkinson’s in mind: large, easy-to-tap buttons, voice and video logging for when typing is difficult, and the ability to track medications (including hormonal contraceptives and HRT), Parkinson’s symptoms, exercise, and menstrual cycle data all in one place.
Its most distinctive feature: it’s currently the only app in the world that looks at the correlation between neurological symptoms and the menstrual cycle, and the only one used in a global study specifically examining that relationship. Trials are underway with University College Cork and, more recently, through funding from France Parkinson’s, studying young-onset women across four neurological centers in France.
HOW CLINICIANS CAN USE IT
→ Encourage clients to track symptoms before and after starting new medications or interventions
→ Use voice and video logging to capture speech quality, wet-sounding voice, or dyskinesia episodes
→ Ask clients to photograph modified-consistency meals to review with a swallowing therapist
→ Use medication reminders as a prompt to log 200ml of water with each tablet
→ Bring logged data to neurology appointments as concrete, timestamped evidence
For speech-language pathologists in particular, Richelle highlights an unexpected benefit: recording her voice before and after LSVT LOUD® exercises gave her measurable, motivating proof that the exercises were working. “It was actually really powerfully motivating,” she says. “Oh my god, that really worked, it really made a difference to my voice.”
Nutrition PD: Bridging the Gap in Dietitian Access
Eight out of ten people with Parkinson’s don’t have access to a dietitian. That statistic, borne out in an Irish study that Richelle suspects reflects the global picture, is what drove her to build Nutrition PD, a suite of online education programs designed to bring evidence-based dietary guidance directly to people with Parkinson’s and their families.
The programs are delivered through an avatar, a deliberate choice to allow content to be scaled, updated, and eventually personalised for different cultural and demographic groups. A pilot funded by Parkinson’s UK showed promising early results, including improvements in constipation, and the program has since expanded to include a dedicated gut health course covering slow stomach emptying, SIBO, H. pylori, reflux, and dysphagia.
The first program centres on the Mediterranean diet, the eating pattern currently with the strongest evidence base for people with Parkinson’s, owing to its anti-inflammatory properties. Crucially, Richelle is quick to point out it isn’t about eating “like an Italian.” The program provides culturally adapted recipe swaps so the principles can be applied to whatever someone’s heritage and food traditions.
Each program (priced at £100 for three months’ access) includes video content, recipe books, fact sheets, a monthly live webinar with registered dietitians, and a chat support group where participants can ask questions between sessions.
The Nutrition Principles Everyone with Parkinson’s Should Know
1. Protein and levodopa: the interaction that changes everything
Protein in food competes with levodopa for absorption across the blood-brain barrier. For anyone on four or more doses of levodopa daily, the timing of meals relative to medication can be the difference between symptoms being well-controlled and not. Richelle calls this “the lowest-hanging fruit”, something pharmacists, neurologists, and all clinicians should be routinely discussing.
The nuance: for those with dyskinesia (involuntary movements caused by excess levodopa), separating protein from medication means more levodopa is absorbed, which can worsen involuntary movements. In that case, the priority is often ensuring adequate caloric intake while potentially lowering the levodopa dose in conversation with a neurologist, not simply restricting protein.
2. Check vitamin B12 and vitamin D annually
Research indicates that B12 deficiency is common in Parkinson’s even before diagnosis, and that increasing levodopa doses over the years further depletes it. The symptoms of B12 deficiency — fatigue, low mood, anxiety, weakness, neuropathy — can closely mimic a worsening of Parkinson’s symptoms, meaning people may be attributing a treatable deficiency to disease progression.
Vitamin D matters for bone density. Given the elevated fall risk in Parkinson’s, maintaining strong bones isn’t optional, and postmenopausal women should be automatically referred for a DEXA scan to check bone density.
3. Hydration and fiber: simple, underutilised, effective
People with Parkinson’s often lose the automatic cue to drink water. Dehydration worsens constipation and cognitive function. A practical tip from Richelle: pair a water reminder with the medication reminder already set in My Moves Matter, and aim to drink 200ml with each tablet.
More fruit and vegetables bring both soluble and insoluble fiber (improving stool consistency and bowel movement), antioxidants with anti-inflammatory properties, and prebiotics to feed a healthy gut microbiome, which in turn supports brain health through short-chain fatty acid production.
There’s no point doing all that exercise if you haven’t got the energy to do it, and you’re losing weight from it. – Richelle Flanagan
4. Don’t let unintentional weight loss go unaddressed
Richelle urges all clinicians to weigh people with Parkinson’s at every appointment. Weight loss, driven by dyskinesia burning excess calories, protein restriction to manage levodopa timing, or gut issues reducing appetite, can quietly undermine even the most dedicated exercise regimen. If someone is underweight, addressing that is the nutritional priority, not beginning restrictive diets like intermittent fasting or ketogenic eating.
A Message for the Newly Diagnosed
Richelle’s advice to someone newly diagnosed is less about dietary specifics and more about mindset. The disabling framing that often accompanies a Parkinson’s diagnosis, “you have a neurodegenerative condition; here are the things that will happen to you”, is not the only possible framing, nor is it the most helpful one.
“It’s a bit like diabetes,” she says. “It’s a progressive condition, but you’re also told: this is what you need to do to manage it. These are the levers you can pull.” Exercise, diet, sleep, and social connection — the evidence increasingly supports that these are genuine disease-management tools, not consolation prizes.
She also advocates strongly for acceptance as a precondition for action. “There’s no point in me telling someone to follow the Mediterranean diet when they’re in absolute shock. To be able to accept it, and then say ‘I’m going to start taking action’, that’s when change happens.”
Listen to the full episode of Think BIG and LOUD wherever you get your podcasts. Resources mentioned in this episode, including links to My Moves Matter and NutritionPD are available in the show notes.
AI (Claude) assisted in the translation of this content from a podcast to a blog, edited by humans of course.