Hoping to provide the ‘missing piece in Parkinson’s care’, the team behind My Moves Matter have created NutritionPD, a dietitian-designed suite of programmes for the Parkinson’s community. It launched in July, kicking off with the first 12-week programme, Mediterranean Parkinson’s.
We spoke to NutritionPD founder Richelle Flanagan, a registered dietitian with young-onset Parkinson’s, to find out more.
Richelle, please tell us about NutritionPD. What does it offer the Parkinson’s community?
“I noticed my symptoms when I was three months pregnant with my daughter, and was diagnosed after she was born. My journey led me to spend the last eight years learning about how nutrition can help manage symptoms and maybe slow the disease.
“I found out that there is not much solid nutrition advice made just for people with Parkinson’s. Through research with the community, we found people felt their nutritional needs were being dismissed by neurologists. They also felt that dietitians don’t truly understand their needs, as they were not trained in Parkinson’s. And we know that only about 1 in 10 people with Parkinson’s see a dietitian. So when there is such a lack of referral to dietitians, the likelihood of them being trained in Parkinson’s is very low.
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“Of all the conditions I have worked with over the years as a dietitian, Parkinson’s is by far the one that needs the most nutrition care. So I started thinking about how this need could be met. How do we get nutrition information out to the people with Parkinson’s and their care partners?
“That’s when we decided to develop online nutrition programmes that were designed by dietitians, presented by an avatar. NutritionPD’s mission is to give people with Parkinson’s and their caregivers reliable nutrition information.
“All programmes have been designed by dietitians who understand Parkinson’s and cover topics like the Mediterranean diet, gut health, and weight management. Our first programme, Mediterranean Parkinson’s, is already helping people feel better.
How do the programmes work?
“When we did the focus groups, the majority wanted access to a self-paced online programme. So Mediterranean Parkinson’s contains 14 nutrition information video modules totalling 1.5h viewing time, supported by a library of downloadable resources.
“This includes two week meal plans and recipes, factsheets on topics like pesticides, fibre, a protein ready reckoner amongst others. We have also included factsheets on how to adapt the Mediterranean diet for different cultures. Participants also have access to an ‘Ask the Dietitian’ chat support group. They have three months access to complete the programme and download the resources.
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“When the next programme, Gut Health For Parkinson’s goes live in October, people will be able to buy the whole programme, or just the module relevant to them. We have modules on constipation, gastroparesis, dysphagia, Gastroesophageal reflux and functional dyspepsia.
“We have also developed the programmes using behaviour change principles, and support people to make changes they identify through the programme.
“In the case of the Mediterranean Parkinson’s programme, it includes two quizzes that they complete at baseline and at the end of the programme. A nutrition quiz helps to show participants how much they have learnt. Because research shows that understanding the context of the nutrition information helps people to make dietary changes.
“People also complete the Mediterranean diet score. We know that the Mediterranean score in the Parkinson’s community is average or below average, and that every increase in the score can lead to help benefits. By comparing their baseline score people can see the impact of the dietary changes they made as they went through the programme.”
How often does each NutritionPD programme take place?
“Currently we have had a Mediterranean diet programme cohort launch once a month since July, with registration for our September programme extended until the 27 September. This month’s cohort gets the bonus of 3 live group sessions with myself and my dietetic colleague Jane Kinghan, who works with me on the programme development.
“The Mediterranean Parkinson’s programme includes a module on lifestyle management which covers the importance of physical activity, sleep, mental health, mindfulness, creativity and dance.
“The programmes are currently in English, and the information is applicable wherever people live. However, the vision is to be able to adapt the nutrition content to different cultures and deliver in the relevant languages.”
What kind of challenges might people be living with Parkinson’s face when it comes to diet and nutrition?
“There are so many gaps in care. They include managing malnutrition, modifying diets for dysphagia, reducing constipation, managing gastroparesis, food/supplement medication interactions, managing excess weight gain, maintaining and protecting bone health, managing co-morbid conditions with dietary needs such as diabetes, coeliac disease, thyroid disease and inflammatory bowel disease and palliative nutrition to name a few!
“We did a focus group in partnership with my former professor of nutrition in University of Ulster Coleraine (where I did my Masters in Dietetics). Her team were visibly shocked by what they heard from the focus group participants.
“People living with Parkinson’s face a wide range of symptoms that can significantly affect their ability to eat and drink. Motor issues such as dyskinesia and muscle rigidity can make the physical act of eating challenging, including difficulties in using cutlery and opening packaging.
“However, it is often the non-motor symptoms—like fatigue, apathy, cognitive difficulties, poor concentration, and impulse control disorders—that have the greatest impact on their dietary habits. These symptoms can make meal planning, preparation, and consumption particularly demanding, sometimes leading to unintentional weight loss.
“Digestive symptoms such as constipation, problems with chewing and swallowing, dry mouth, and changes in taste and smell, further influence food choices and the overall eating experience. And because Parkinson’s symptoms can fluctuate throughout the day, individuals often need to plan meals around these unpredictable changes. This adds another layer of complexity.
“Many people with Parkinson’s end up relying on pre-prepared foods due to the challenges of cooking and preparing fresh meals. However, this reliance can become financially burdensome.
“Another major concern is the interaction between medication and meals, as guidance in this area is often insufficient, yet timing and composition of meals can greatly affect medication effectiveness.
“There is also a social aspect to consider. Some people may feel embarrassed about eating in front of others due to their symptoms. For those living alone, these challenges can be even greater. We saw many participants in focus groups highlighting their dependence on care partners for help with meals and medication management.”
What kind of feedback have you received from those taking part in the programme so far?
“We were delighted to have received an Innovation grant from Parkinson’s UK to market test pilot the Mediterranean Parkinson’s programme for three weeks earlier this year.
“The results were very positive, and my dietetic colleagues and I were quite emotional about the impact. One participant shared how it gave them a lot of hope.
“The results demonstrated significant engagement and satisfaction. Some 60% of those enrolled completed the full programme, which is well above the average for online programmes.
“Furthermore, 89% expressed satisfaction or high satisfaction, stating they would recommend the Mediterranean Parkinson’s programme to others living with Parkinson’s.
“Importantly, participants reported a high average score of 9.4 out of 10 in their confidence to make positive dietary changes as a direct result of the programme.
“The average Mediterranean Diet Score among participants increased significantly, rising from 8.7 out of 20 (44%) at the start to 11.9 out of 20 (60%) by the end of the 3 weeks. Notably, two out of the ten participants interviewed reported improvements in their digestive health, such as more regular bowel movements.
“Every interviewee expressed that they trusted the information provided in the programme, due to the direct involvement of dietitians. Overall, registered dietitians played a crucial role in building trust and instilling confidence among participants throughout the programme.”
How do you hope NutritionPD will develop over time?
“We wish to use technology to personalise the programmes to participants based upon their demographics. This would include hormonal stages for women, nutritional needs and learning style.
“We are also developing several ‘proof of concept’ nutrition tools to help provide access to dietitians and medical nutrition therapy utilising modern technology.
“As the president and first CEO of The Irish Nutrition and Dietetic Institute, a core part of my role was to advocate for better nutrition care for people with chronic disease. So this has come full circle for me to bring my experience and passion from my life pre-diagnosis to bear post-diagnosis.
“In two years time, I would love to see our programmes ideally delivered through Parkinson’s organisations, health services. And to be reimbursable for those who can afford to pay. But that will require more funding, as it costs a lot to develop and deliver solutions.
“We have gotten this far through grants and a pre seed start fund from Enterprise Ireland. However we need more funding to help us become sustainable long term. So if any philanthropic investor out there would like to help, we would love to hear from them!”
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