In this episode, we are sharing the highlights from our webinar ‘Living Well with Progressive MS’ with Dr Phil Startin and Professor Helen Reese Leahy. Both Phil and Helen have progressive MS and follow the Overcoming MS Program. They discuss what progressive MS is and how the Overcoming MS Program can benefit people with progressive MS.

This webinar was recorded in July 2021 as part of our Finding Hope with Overcoming MS webinar series. You can watch the whole webinar here or the podcast highlights on YouTube here.

Keep reading for the key episode takeaways and bio information.

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Read the episode transcript here


Selected Key Takeaways

Overcoming MS is for every type of MS
Helen Rees Leahy: “Overcoming MS is really determined to be an inclusive space in which everybody's experience of MS is acknowledged and honoured. So, though we [people with progressive MS] may be small in number, our voice is growing, and we're very much being heard within the Overcoming MS conversation.”

Exercise is still important with progressive MS but be gentle and kind with yourself
Phil Startin: “Be kind to yourself, try not to judge [and] compare what you can do now to what you used to be able to do. I've certainly spoken to people who refuse to exercise saying exercising reminds them of what they now can't do and that's really upsetting. We still need goals but hold them more lightly [and] more gently.”

Think of the Overcoming MS Program as a toolkit rather than a set of rules
Helen Reese Leahy: “I started following the Overcoming MS Program in the 2000s. It's become a framework for my daily life. I've never been eligible for any disease-modifying therapy, so in a sense, Overcoming MS is my health care programme. I feel very empowered by following the Program. I am taking responsibility and managing my own health to the best of my ability. I always regard Overcoming MS not as a book of rules, but as a kind of toolkit and to be honest, I really enjoy following the Program.”

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Dr. Phil Startin’s bio:

Career and Overcoming MS:
After a DPhil in Quantum Physics, Phil left his academic roots for a more peripatetic career in management consulting, initially with Price Waterhouse. After years of travelling around the world for both work and pleasure, including a two-year assignment in Geneva, he was diagnosed with Primary Progressive MS (PPMS) in 2007.
 
Phil discovered Overcoming MS in 2011, and coupled with his earlier discovery of mindfulness meditation, it awakened a whole new area in his life. With training and supervision from Bangor University, he now teaches an eight-week mindfulness-based stress reduction (MBSR) course to people with MS and to the general community on a pro-bono basis. He is also a trustee for MS-UK.
 
Personal life:
Phil lives in Arrochar, Scotland with his American wife, Cristina, whom he met over a weekend at the Jazz Fest in New Orleans. Phil’s completely convinced that the Overcoming MS Program and mindfulness have positively affected the trajectory of his condition

Professor Helen Rees Leahy’s bio:

MS and Overcoming MS:
Helen was diagnosed with Primary Progressive MS in 1997 when she was 37 years old. Being ineligible for any Disease Modifying Treatment (DMT) within the UK National Health Service, she began to explore holistic approaches to managing her condition.

She discovered Overcoming MS in 2008 and has followed the Program ever since. She was previously a Trustee for Overcoming MS.

Personal life and career:
Helen lives in Conwy, a small, medieval town in North Wales. In 2017, she took medical retirement from the University of Manchester where she was a Professor in the Department of Art History and Cultural Practice. As an Emerita Professor, Helen continues to research and teach doctoral students. She also spends time hand-weaving and learning Welsh, the language of her ancestors.