Touchstones for Living Well with Parkinson’s Disease: Inspirations and Learnings from this Year’s World Parkinson’s Congress

I attended the 6th World Parkinson’s Congress in Barcelona in early July 2023 and found it inspiring and uplifting. It was attended by health professionals of all disciplines, researchers, charities, exhibitors, and of course, people-with-Parkinson’s. I attended sessions ranging from biological subtypes of PD, apathy and fatigue and other under-recognised non-motor symptoms, the benefits of exercise, the influence of diet, the use of AI, digital health and wearable devices, tracking disease progression in Parkinson’s, to the benefits of boxing and ping-pong for Parkinson’s. I even attended a session by Paul Mayhew-Archer on the funny side of Parkinson’s, and I just scratched the surface of everything that was on offer! Building on what I learned at these sessions, and applying my own experience as a sportsman, where, over the years, I have developed strategies to perform at my best, and as a person-with-Parkinson’s, I was inspired to write my Touchstones for Living Well with Parkinson’s Disease – eight points on how I can be my best possible self.  These eight points give me a sense of empowerment and control over my condition.

  1. The goal: Be the best I can be and live the life I want (family; sport; intellectual challenge; travel).

  2. Self-management is key: Symptoms in the clinic can be very different to symptoms at home and sessions with my healthcare professionals are so infrequent that I need to monitor and manage my own condition. This doesn’t go as far as self-medication (I am guided by my clinicians), but I keep records of my motor and non-motor symptoms, my medication, my exercise and rest. I keep a simple diary and I use Orbit’s Neptune Care wearable device to help me spot patterns. All of this provides an objective evidence based record that I can use when my clinician asks –  “and how have you been?”

  3. Diet: Mediterranean (reduced red meat and processed foods; ‘rainbow’ five-a-day fresh fruit and veg; whole grains; olive oil; fish; nuts; plant-based protein; moderate dairy; moderate alcohol; wine preferred).

  4. Exercise: The focus of my exercises are posture, strength, aerobic, balance and stretch. Make it a habit. 

  5. Rest: I find I can get exhausted and have learnt to take downtime when I need it.

  6. Put a support team around me: Family; friends; fellow people-with-Parkinson’s; healthcare professionals (neurologist; neuro-physio; masseur; dietician; carer if and when the time comes).

  7. Avoid stress: Being stressed exacerbates my symptoms. Avoid it!

  8. Live in the now: With a degenerative condition it’s really important to make the most of every day. I like the poem ‘Better Days’ by Henry Normal which makes this point well.

About the Author

About the author: Richard was diagnosed with Parkinson’s four years ago. A keen sportsman all his life, Richard draws learning from his lifelong passion for fencing to help him stay active and manage the challenges he faces with Parkinson’s. Richard is a patient advisor for Orbit Health and a participant of the Neptune Care Early Access Programme.

Though Richard is not clinically trained or qualified to give medical advice, he is motivated to share his experience and to advocate for self-care and a positive attitude towards living with Parkinson’s. 


At Orbit Health, we celebrate people who dare to change; who want to take control and improve the way Parkinson’s is managed and cared for. Because we believe, with technologies like Neptune, we can help PwP (People with Parkinson’s), carers, and healthcare professionals to better control symptoms and ultimately improve quality of life. If you are ready to transform the way Parkinson’s is managed, let us know. We would like to tell your story!

To find out more about Orbit Health or Neptune, visit www.Orbit.Health

It’s time to changed the way we manage Parkinson’s

Because now we can.

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