The first in a special four-part podcast collaboration with RealTalk MS

Jon Strum’s goal is a simple one, “To keep the (MS) conversation going until there’s no longer a need to talk about multiple sclerosis, except in the past tense.” He launched RealTalk MS in 2017 and since then has hosted over 200 podcast episodes, each breaking down the latest news and research in multiple sclerosis and reaching an average of 9,000-plus listeners.

MS in the 21^st Century (MS21) is collaborating with RealTalk MS on a series of four episodes, the first of which is available on-demand now and brings Jon together with Carolyn Kaufman and Dr Mitzi Williams to discuss how two-way communication is critical to making better decisions in MS care.

Future episodes will discuss current and important issues in MS care; from the value of good patient-provider communication, to the potential impact of cognitive symptoms on ability to maintain employment.
Episode One: Better decision making

In this first podcast Carolyn Kaufman talks about her experience living with MS, and the significant change that becoming an advocate in her own care made to her quality of life and the ability to manage her symptoms.

She outlines why many with MS may not be making fully informed decisions in collaboration with their care provider. “I think a lot of people with MS don’t know exactly what to do, it is a very complex disease and so people look to their doctor to have all of the answers and to tell them what to do instead of learning how to become a partner in their care. — It is important for patients to learn how to start to manage their own symptoms and come together to create a holistic team.”

MS specialist Dr Mitzi Williams agrees with Carolyn and suggests that both patients and healthcare professionals need to adopt this collaborative approach. “I think that the need for shared decision making has filtered through but there is still a lot of work to be done — there are some people who hand people pamphlets and say pick your treatment.”

She continues, “I think that it takes not only us as HCPs but also people living with the condition to advocate for themselves and that we have to work together to find the best individual treatment plan for each person living with MS.”

LISTEN NOW:

Episode 1 from RealTalk MS and MS21: Carolyn Kaufman and Dr Mitzi-Joi Williams explore the evolution of communication in MS care and introduce the MS in the 21^st Century initiative: Click here

Episode 2: (Originally broadcast on 1 October 2021) Dr Alice Laroni and Trishna Bharadia discuss family involvement in MS care, and its impact on patient decision-making: Click here:

Episode 3: (Originally broadcast on 11 November 2021) Pieter van Galen and Amanda Montague try to answer the question ‘Is there a right way to talk about disease progression?’ and introduce MS21’s newest resource, myMS roadmap: Click here.

Episode 4: (Originally broadcast on 13 January 2022) Dr Sarah Morrow and Paola Kruger discuss with Jon Strum how PwMS can work together with their doctors to develop an open discussion about cognition and multiple sclerosis: Click here.

RECOMMENDED MS21 TOOLS

myMS roadmap:
myMS roadmap is a webapp designed to help people with MS, and their families and caregivers, better understand the language used to describe the disease; from diagnosis, through to starting treatment and beyond.

myMS companion:
myMS companion is a short questionnaire designed to help people with MS to start to think about their personal goals for the future, and the MS symptoms which they feel could be the greatest barriers to achieving them.

Survey: Communicating about disease progression:
MS21 is passionate about ensuring the tools and information we offer answer the needs of the MS community. We would love to hear about your experience of talking about MS through this short questionnaire.