The MS Experience: Living with MS
Ellen speaks with Professor Rona Moss-Morris, Professor of Psychology at King’s College, London, about mental health, seeking support, and the effects of the coronavirus pandemic on people living with MS.
Brains Need Rest: Sleep and Your Brain
Ellen and Karen speak frankly about their experiences of fatigue while living with MS. As a health coach with her own personal experiences, Karen shares tips and tricks on dealing with fatigue, getting a good night’s sleep, and handling stigma from others.
Shared Decision Making in MS: What you and your doctor need to know
Ellen speaks with Professor Gavin Giovannoni about shared decision-making for people living with MS and how it’s shifted in recent times. They also discuss how to work with your healthcare professional and offer tips to make the most out of patient-neurologist consultations.
MS, your loved ones and care decisions
Ellen and her husband Nick speak with MS Nurse Practitioner Colleen Harris about the role of loved ones in care decision-making, ranging from parents, partners, friends and children.
Meet your host
Ellen Marshall
Ellen Marshall was diagnosed with RRMS in September 2015 at the age of 27 after 4 months of various MS symptoms. She has remained in remission since her diagnosis, but often experiences fatigue and some lingering symptoms. She is in full time employment, tries to exercise regularly and claims to have a diet that, sadly, only Elvis would be proud of!
Ellen has thrown herself into advocacy work within the MS community, has presented a TedTalk and spoken in interviews. She also has an Instagram account where she documents her life with MS.
Find out more about Ellen here:
Instagram: @manyscars_ms
TedTalk
Shift MS interview
As Ellen puts it herself, “I’ll take more from my MS that it will from me!”. We hope you can take as much from this podcast as possible.
Episode Summary
In this episode Ellen speaks to Professor Rona Moss-Morris; Professor of Psychology as Applied to Medicine at King's College, London. Ellen and Rona talk Covid-19 and the effects it has had on their work lives, mental health, and working with people with MS. They candidly discuss the anxieties of the MS community during the pandemic, and what the lockdown can teach us about inclusivity and long-term health conditions. Ellen speaks about social media and utilising it as a platform for MS empowerment, as well as the dangers of its impacts on mental health.
Meet Professor Moss-Morris
Prof Rona Moss-Morris is the Head of Health Psychology and Chair in Psychology as Applied to Medicine at the Institute of Psychiatry, King's College, London. She has been working with people living with MS for a number of years. In 2013 she won MS Researcher of the Year as part of the Multiple Sclerosis Society awards, for a randomised controlled trial adjusting to MS, which compared Cognitive Behavioural Therapy, commonly known as CBT, to support listening to help people adjust to the early stages of multiple sclerosis.
Useful links from this episode
- NHS Website: https://www.nhs.uk/conditions/multiple-sclerosis/
Episode Summary
In this episode Ellen speaks to Karen Moritz, Health coach and fellow person living with MS. They speak frankly about their own experiences with fatigue and the stigma they have faced from friends and in the workplace. They discuss how to explain MS fatigue to others who haven’t experienced it and often do not understand the strain it has on daily life. Karen offers hints and tips on how to manage fatigue and get a good night sleep and Ellen highlights the importance of understanding your own MS.
Meet Karen
Karen Mortiz is a certified health coach who currently works full time for an Australian government agency, which has rolled out an innovative scheme across Australia to people living with a disability, including those living with MS. She used her own experience and her postgraduate qualification in nutrition to provide health coaching for a Patient Support Programme in Australia, while offering peer support to people living with MS in Australia in her spare time, too.
Episode Summary
In this episode, Ellen speaks to neurologist and well-known MS expert Professor Gavin Giovannoni about shared decision-making for people living with MS. They talk about how the doctor-patient relationship has changed in recent times and the importance of communication to help people living with MS make healthcare decisions in partnership with their MS care team. Ellen raises the challenges of building a relationship with your neurologist when time is limited while Gavin notes the importance of having the patient at the centre of the MS care team. He explains that he sees the role of the neurologist as being to help the patient understand and interpret information to make decisions that will work for their life and their MS journey. Gavin and Ellen also discuss how MS is monitored, tips on how to prepare for a consultation to help optimize the time spent with the care team and what information is important when making a shared decision on treatment.
Meet Professor Gavin Giovannoni
Professor Gavin Giovannoni is a neurologist based in the Blizard Institute, Barts and The London School of Medicine and Dentistry, Queen Mary University of London. His current research and clinical interests are focused on multiple sclerosis. Gavin also has an MS blog and he has been involved in the development and validation of several innovations to communicate complex information to people with MS and their families. Gavin has a vision of the future where patients and healthcare professionals will meet in a hybrid world that is transformed by technology.
Episode Summary
In this episode, Ellen and her husband Nick speak to Colleen Harris, the Nurse Co-ordinator / Nurse Practitioner of the University of Calgary MS Clinic, about the role of loved ones in care decision-making, ranging from parents, partners, friends and children. They talk about how each person with MS is different and will approach their consultations in a different way – Colleen notes that there is no ideal patient but that there is an ideal approach for healthcare professionals to discover and understand how someone is approaching the decision-making process, and who is supporting and influencing those decisions. Nick highlights the importance of loved ones listening to the person they are caring for, as well as always being patient, understanding, and putting yourself in their shoes.
Meet Colleen Harris
Colleen Harris is the Nurse Co-ordinator / Nurse Practitioner of the University of Calgary MS Clinic, where she has been involved in multi-disciplinary care for much of her nursing career. Colleen, along with several of her MS nursing colleagues from North America, Europe and Australia, was involved in the creation of the International Organization of MS nurses (IOMSN) and is one of the past presidents of this organization. In addition to publishing numerous articles on MS and chronic illness, she has authored chapters in both Comprehensive Nursing Care in Multiple Sclerosis, Advanced Concepts in Nursing Care in Multiple Sclerosis, and Nursing Practice in Multiple Sclerosis.
Meet Nick Tutton
Nick met Ellen in 2014, just months before her MS diagnosis. Nick is first and foremost a husband to Ellen and a father to their first child.
