RealTalk MS

Latest Episodes:

Episode 77: Shift.ms with Founder George Pepper & Aoife Kirwan Feb 12, 2019

Show notes

George Pepper was diagnosed with multiple sclerosis in 2009, at the age of 22. He initially found it difficult to connect with others his own age who were living with MS, so George set up a website where people living with MS could meet and share their experiences. That website evolved into an online community called shift.ms, and today, more than 18,000 people participate in the shift.ms community. My guests today are the founder of shift.ms, George Pepper, and Aoife Kirwan, a member of the shift.ms community. We're also talking about a new report that reminds us that there's a lot of fake health news online, how Medicare rules are costing people living with MS more money, a global response to talking about sex and MS, and a study that will introduce you to the Caregiver Strain Index, a reliable tool in measuring MS caregiver burden. We have a lot to talk about! Are you ready for RealTalk MS?! ___________

A solution to Loneliness & MS :23

Study Results Warn Against "Fake Online Health News" 2:48

Medicare Policies Cost People With MS More Money 8:50

MS International Federation Talks About Sex & MS 12:57

Caregiver Strain Index Is A Valid Measurement of Caregiver Burden 14:33

My Interview with George Pepper & Aoife Kirwan 18:24

Join The RealTalk MS Conversation 30:25

___________

ADD YOUR VOICE TO THE CONVERSATION

I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes.

Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!

Email: jonstrum@RealTalkMS.com

Phone: (310) 526-2283

___________

LINKSIf your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com

Download the RealTalk MS App for iOS

Download the RealTalk MS App for Android

Give RealTalk MS a Rating & Review

Trends in Coverage for Disease-Modifying Therapies for Multiple Sclerosis in Medicare Part D

Sex Life & MS

Measuring Burden in Caregivers of People with Multiple Sclerosis: Psychometric Properties of the CSI Questionnaire

Shift.ms

___________

Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com.

RealTalk MS Episode 77 Hosted By: Jon Strum Guest: George Pepper & Aoife Kirwan

Tags: MS, MultipleSclerosis, MSResearch, Caregiving, ShiftMS, MSIntFederation, RealTalkMS

Episode 76: MS Rehabilitation With Dr. Deborah Backus Feb 05, 2019

Show notes

One of the best ways to maintain physical function, manage the effect of some MS symptoms, and even offset depression is exercise. My guest is Dr. Deborah Backus, the director of Multiple Sclerosis Research at the Shepherd Center in Atlanta. We're discussing the importance of early rehabilitation, the difference that exercise can make for people living with MS, and STEP FOR MS -- an important clinical trial that may turn out to be a game-changer for MS rehabilitation.

We're also talking about what people living with MS need to know about polypharmacy, a new transportation pilot project that's designed to make life easier for people living with MS, why an MS caregiver also needs to be an advocate, what happens when an MS caregiver ignores self-care, and a new clinical trial that will look at non-pharmacological approaches to managing MS chronic pain.

We have a lot to talk about! Are you ready for RealTalk MS?! ___________

Join the RealTalk MS Conversation :22

Polypharmacy & Relapsing-Remitting MS 2:39

MS FOCUS's Transportation Pilot Project 6:21

What It Means For an MS Caregiver To Be An Advocate 8:06

What Happens When an MS Caregiver Ignores Self-Care 12:16

Clinical Trial to Study Non-Pharmacological Approaches to Managing Chronic MS Pain Is Recruiting 14:53

My Interview with Dr. Deborah Backus 18:04

Download the RealTalk MS App 33:05

___________

ADD YOUR VOICE TO THE CONVERSATION

Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!

Email: jonstrum@RealTalkMS.com

Phone: (310) 526-2283

___________

LINKSIf your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com

Download the RealTalk MS App for iOS

Download the RealTalk MS App for Android

Give RealTalk MS a Rating & Review

Polypharmacy in Outpatients With Relapsing-Remitting Multiple Sclerosis: A Single-Center Study

Investigators Recruiting People With MS Nationwide To Test Approaches to Managing Chronic Pain: Email: msadapt@uw.edu Phone: (855) 320-8230

STEP FOR MS Study

STEP FOR MS Eligibility & Study Sites

Shepherd Center

___________

Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com.

RealTalk MS Episode 76 Hosted By: Jon Strum Guest: Dr. Deborah Backus

Tags: MS, MultipleSclerosis, MSResearch, Caregiving, StepForMS, ShepherdCenter, RealTalkMS

Episode 75: MS Risk Factors with Epidemiologist Dr. Farren Briggs Jan 29, 2019

Show notes

One of the fundamental questions on the minds of just about everyone living with MS is How did I get it? What causes MS? It's a question that's still awaiting a definitive answer. But as we wait for that answer, science is uncovering more and more information about MS risk factors -- the things that can make living with MS better or worse. My guest is Dr. Farren Briggs, an epidemiologist who's focused on the etiology, or the cause of multiple sclerosis, and the risk factors that actually impact the course of the disease for an individual.

We're also talking about the Progressive MS Alliance's commitment to including the voice of people living with MS in MS research. We'll tell you about a study that looked at predicting physical disability and cognitive dysfunction in people living with MS. You'll hear about a study that evaluated the facts that are available on the Internet about diet and MS, how online relaxation therapy can improve anxiety and depression, new guidelines from the U.K. for pregnancy and MS, and how shared decision-making can lead to greater adherence to MS disease-modifying therapy.

We have a lot to talk about! Are you ready for RealTalk MS?! ___________

Progressive MS Alliance & Patient Engagement in MS Research :23

Predicting Physical Disability & Cognitive Dysfunction in MS 2:16

Diet & MS: A Study of Facts vs Beliefs 3:52

Online Relaxation Training Shown To Be Effective in Reducing Anxiety & Depression Among People Living with Long-Term Neurological Conditions 9:57

Guidelines for Pregnancy & MS in the U.K. 11:58

Shared Decision-Making Leads to Greater Adherence to MS Disease-Modifying Therapy 13:40

My Interview with Dr. Farren Briggs 17:34

Add Your Voice To Our Conversation 28:15

___________

ADD YOUR VOICE TO THE CONVERSATION

Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!

Email: jonstrum@RealTalkMS.com

Phone: (310) 526-2283

___________

LINKSIf your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com

Download the RealTalk MS App for iOS

Download the RealTalk MS App for Android

Give RealTalk MS a Rating & Review

STUDY: Predicting Clinical Progression in Multiple Sclerosis After 6 and 12 Years

STUDY: Diet and Multiple Sclerosis: Scoping Review of Web-Based Recommendations

STUDY: The Effects of Relaxation Training On Depression and Anxiety In People Living with Long-Term Neurological Conditions

UK Consensus on Pregnancy in Multiple Sclerosis: Association of British Neurologists Guidelines

STUDY: Impact of Shared Decision-Making on Disease-Modifying Drug Adherence in Multiple Sclerosis

___________

Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com.

RealTalk MS Episode 75 Hosted By: Jon Strum Guest: Dr. Farren Briggs

Tags: MS, MultipleSclerosis, MSResearch, CWRU, MSDiet

Episode 74: How Your Neurologist's Treatment "Style" Affects Your MS Treatment Plan with Dr. Aaron Boster Jan 22, 2019

Show notes

We know about the importance of disease-modifying therapy (DMT) in managing MS and slowing its progression. But you may not know that there are two very different schools of thought when it comes to how and why your neurologist may recommend one DMT over another. My guest is Dr. Aaron Boster, the System Medical Chief for Neuroimmunology at OhioHealth, and we're talking about an important conversation that you should be having with your neurologist.

We're also talking about the newly published clinical trial results that demonstrate that stem cell therapy may be more effective than DMT in managing disease progression among people living with relapsing-remitting MS. We'll tell you about a study that shows how mindfulness can be valuable in improving the well-being for people living with MS, we'll tell you about this year's winner of the National MS Society's Barancik Prize for Innovation in MS Research, and if you're living with secondary progressive MS, we'll tell you about a survey that you should really participate in.

We have a lot to talk about! Are you ready for RealTalk MS?! ___________

Stem Cell Therapy More Effective Than DMT in Managing Progression in Relapsing-Remitting MS 1:27

Mindfulness Improves Well-Being for People Living with MS 4:21

Stress, Depression & Fatigue Impact Caregiver Health Status 6:19

National MS Society Announces Barancik Prize for Innovation in MS Research 7:22

An Important Survey for People with Secondary Progressive MS 9:27

My Interview with Dr. Aaron Boster 11:58

___________

SHARE YOUR FEEDBACK, QUESTIONS, AND IDEAS

Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!

Email: jonstrum@RealTalkMS.com

Phone: (310) 526-2283

___________

LINKSIf your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com

Download the RealTalk MS App for iOS

Download the RealTalk MS App for Android

STUDY: Effect of Nonmyeloablative Hematopoietic Stem Cell Transplantation vs Continued Disease-Modifying Therapy on Disease Progression in Patients with Relapsing-Remitting Multiple Sclerosis

STUDY: Longitudinal Associations Between Mindfulness and Well-Being in People with Multiple Sclerosis

STUDY: Quality of Life and Emotional Strain in Caregivers of Patients with Multiple Sclerosis

MS Coalition/ICER Survey About Secondary-Progressive MS

Give RealTalk MS a Rating & Review

___________

Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com.

RealTalk MS Episode 74 Hosted By: Jon Strum Guest: Dr. Aaron Boster

Tags: MS, MultipleSclerosis, MSResearch, OhioHealthMS, HSCT, Mindfulness, Caregiver, Caregiving, MSSociety, ICER, RealTalkMS

Episode 73: Making Connections with MSPals Mary Pettigrew Jan 15, 2019

Show notes

Recent research suggests that loneliness is one more invisible symptom of MS. But social outreach and interaction have never been more accessible. My guest is Mary Pettigrew, an MS Warrior and social media phenom. In 2014, Mary launched MSPals, a Twitter group that has evolved into a community of more than 5,000 followers. We're talking with Mary about the benefits of connecting online and the importance of finding your creative outlet.

We're also talking about new research on the severity and impact of MS fatigue, along with a new smartphone app designed to improve MS fatigue. We'll tell you about a new way of treating spasticity, and we'll give you the details about a new study that's looking at TeleRehab. We'll even tell you how to sign up for the study!

We have a lot to talk about! Are you ready for RealTalk MS?! ___________

Severity & Impact of MS Fatigue 2:06

MS TeleCoach App Designed to Improve MS Fatigue 4:31

A New Treatment to Manage Spasticity 6:45

The STEP MS TeleRehab Study 8:17

You Can Participate in the STEP For MS TeleRehab Study 10:23

My Interview with Mary Pettigrew, Founder of MSPals 11:58

___________

SHARE YOUR FEEDBACK, QUESTIONS, AND IDEAS

Email: jonstrum@RealTalkMS.com

Phone: (310) 526-2283

___________

LINKSIf your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com

Download the RealTalk MS App for iOS

Download the RealTalk MS App for Android

Prevalence of Fatigue and Its Association with Clinical Features in Progressive and Non-Progressive Forms of Multiple Sclerosis

Improving Fatigue in Multiple Sclerosis by Smartphone-Supported Energy Management: The MS TeleCoach Feasibility Study

Supervised vs Telerehab Exercise program for People With Multiple Sclerosis: Eligibility & Study Sites

iConquer MS

Give RealTalk MS a Rating & Review

___________

Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com.

RealTalk MS Episode 73 Hosted By: Jon Strum Guest: Mary Pettigrew

Tags: MS, MultipleSclerosis, MSResearch, STEPMS, MSPals, RealTalkMS

Episode 72: MS Cognitive Rehabilitation with Dr. Nancy Chiaravalloti Jan 08, 2019

Show notes

Some people living with MS may find that their attention span is shorter than it used to be, or that it takes them longer to process information. Learning directions can be hard, and decision-making may become more difficult. These are all examples of impaired cognition, or cognitive dysfunction. Cognitive dysfunction can impact people living with relapsing-remitting MS, and it impacts almost everyone living with progressive MS. My guest is Dr. Nancy Chiaravalloti, the Director of Neuropsychology and Neuroscience Laboratory and Traumatic Brain Injury Research at Kessler Foundation, and we're discussing Dr. Chiaravalloti's breakthrough work in improving cognitive function for people living with MS, and using MRI to actually see those improvements in the brain. We'll also tell you about some interesting research that revealed what people living with MS consider to be their most important MS treatment goals, you'll hear about a new discovery that explains why the connection between the gut and MS might be really important, we'll talk some more about the importance of an MS Caregiver Protocol, and we'll tell you how you can participate in a new MS research study. We have a lot to talk about! Are you ready for RealTalk MS?! ___________

The Things We'll Be Talking About in 2019 :24

Some Surprising Patient Preferences When it Comes to Assessing MS Treatment 3:17

Gut Immune Cells Cut Inflammation in MS 7:58

The Importance of an MS Caregiver Protocol 10:22

You Can Participate in an Upcoming MS Research Study 12:37

My Interview with Dr. Nancy Chiaravalloti 14:55

___________

LINKSIf your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com

Download the RealTalk MS App for iOS

Download the RealTalk MS App for Android

Evaluation of a Novel Preference Assessment Tool for Patients with Multiple Sclerosis

Recirculating Intestinal IgA-Producing Cells Regulate Neuroinflammation via IL-10

Feasibility of Web-based CBT-I Intervention in Individuals with Multiple Sclerosis

Kessler Foundation

Give RealTalk MS a Rating & Review

___________

Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com.

RealTalk MS Episode 72 Hosted By: Jon Strum Guest: Dr. Nancy Chiaravalloti

Tags: MS, MultipleSclerosis, MSResearch, KesslerFdn, RealTalkMS

Episode 71: Our Look Back at 2018 Dec 31, 2018

Show notes

It's our final episode of the year, and we're taking a look back at what you decided were the most important RealTalk MS podcast episodes of the past year. These are the episodes that received the highest number of listener downloads. We're also polishing our crystal ball, taking a look ahead to 2019, and talking about some of the research that we can expect to be hearing about. We'll even share some of the specific topics that we'll be discussing on the podcast in the coming year. Thanks to you, 2018 has been an amazing year for RealTalk MS. Are you ready for 2019?! ___________

LINKSIf your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com

Download the RealTalk MS App for iOS

Download the RealTalk MS App for Android

RealTalk MS Past Episode Archives

Give RealTalk MS a Rating & Review

___________

Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com.

RealTalk MS Episode 71 Hosted By: Jon Strum

Tags: MS, MultipleSclerosis, RealTalkMS, MSResearch

Episode 70: When A Couple Is Living With MS with Dan & Jennifer Digmann Dec 24, 2018

Show notes

The holiday season seems to carry with it the message of hope, and of finding the best side of who we are. So one of the gifts that I'm going to unwrap with you is a replay of a conversation that I had earlier this year, with 2 people who epitomize hope, humanity, and love. To me, that's what the holiday is all about, and that's what Dan and Jennifer Digmann are all about. Jennifer was diagnosed with Progressive MS in 1997, and Dan was diagnosed with relapsing-remitting MS in 2000. Dan & Jennifer met at a National MS Society event in 2002, and they were married in 2005. We'll get Dan and Jennifer's thoughts about what life is like when both partners in a marriage have been diagnosed with multiple sclerosis. We'll also tell you about the research team that may have identified a biomarker for MS (and why that's a very good thing!). We'll share the results of the Phase III clinical trial data analysis that demonstrates that treatment with Ampyra improves walking ability for people living with MS, we'll tell you about the FDA approval of a Phase II clinical trial for a novel stem cell therapy, and you'll hear about the clinical trial that's about to begin for a new cannabinoid-enriched tablet that can help manage MS pain and spasticity. We have a lot to talk about! Are you ready for RealTalk MS?! ___________

Possible Biomarker for MS Identified 1:51

STUDY: Treatment With Ampyra Improves Walking Ability 5:27

FDA Approves Phase 2 Clinical Trial for NurOwn Stem Cell Therapy 7:57

Clinical Trial Planned for Cannabinoid-Enriched Tablet 9:35

My Interview with Dan & Jennifer Digmann 11:02

___________

LINKSIf your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com

Download the RealTalk MS App for iOS

Download the RealTalk MS App for Android

Possible Biomarker for Multiple Sclerosis Identified

Assessment of Clinically Meaningful Improvements in Self-Reported Walking Ability in Particpants with Multiple Sclerosis: Results from the Randomized, Double-Blind, Phase III ENHANCE Trial of Prolonged-Release Fampridine

OWC Pharmaceutical Research Corp. Reports the Successful Production of Cannabinoid-Enriched Sublingual Disintegrating Tablet

Dan and Jennifer Digmann

Give RealTalk MS a Rating & Review

___________

Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com.

RealTalk MS Episode 70 Hosted By: Jon Strum Guest: Dan & Jennifer Digmann

Tags: MS, MultipleSclerosis, RealTalkMS, Ampyra, Cannabis, MSResearch, DanandJenniferDigmann

Episode 69: MS & Travel with Tarita Davenock, CEO of Travel For All Dec 18, 2018

Show notes

The logistics involved in traveling can be cumbersome, and that's twice as true if you're living with MS. Mobility issues and other special requirements can make travel challenging. But whether you're out exploring the world or just checking into a local hotel for a pampered staycation, travel can add so much to your quality of life. My guest on the podcast is Tarita Davenock. It's been 20 years since Tarita's MS diagnosis. And today, Tarita is the CEO of Travel For All, a travel agency that embraces the philosophy that travel should be inclusive, and not exclusive. Last week, a federal judge declared the Affordable Care Act to be unconstitutional, and we're talking about what that means for people living with MS. We'll share some newly published results of a stem cell therapy clinical trial, we'll tell you about a study that demonstrates how exercise improves myelin repair in the mouse model of MS, and we'll tell you about CanProCo, a large MS research project just getting underway in Canada. Jon and RealTalk MS were featured in last week's Causepods podcast. We'll tell you what that's all about, and how Causepods has created a way for you to support the National MS Society. We have a lot to talk about! Are you ready for RealTalk MS?! ___________

The Affordable Care Act Was Ruled Unconstitutional -- What This Means for People Living with MS 2:11

RealTalk MS Is Featured on the CausePods Podcast 6:33

Encouraging Results From Stem Cell Therapy Study, But Questions Still Need To Be Answered 8:18

Ocrevus Approved for Treating Relapsing-Remitting MS in Scotland 10:53

Exercise Promotes Myelin Repair in Mouse Model of MS 12:07

The Canadian Proactive Cohort Study for People Living with MS Will Study 1,000 Canadians Living with MS 14:02

My Interview with Travel For All CEO, Tarita Davenock 16:37

___________

LINKSIf your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com

Download the RealTalk MS App for iOS

Download the RealTalk MS App for Android

National Patient Groups Denounce District Court Ruling Overturning Health Care Law

Jon Strum & RealTalk MS on the Causepods Podcast

GoFundMe Page Benefiting The National MS Society

Prospective Phase II Clinical Trial of Autologous Hematopoietic Stem Cell Transplant for Treatment Refractory Multiple Sclerosis

Multimodal Enhancement of Remyelination by Exercise with a Pivotal Role for Oligodendroglial PGC1a

Travel For All

Give RealTalk MS a Rating & Review

___________

Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com.

RealTalk MS Episode 69 Hosted By: Jon Strum Guest: Tarita Davenock

Tags: MS, MultipleSclerosis, MS, RealTalkMS, TravelForAll, ACA, ProtectOurCare, MSActivist, HSCT, Ocrevus, CanProCo, MSSocietyCanada, Causepods

Episode 68: MS & AI with Dr. Chase Spurlock, CEO of iQuity Dec 11, 2018

Show notes

Artificial intelligence is about to change the entire healthcare landscape. And that might very well include how MS is diagnosed, treated, and managed. It's even beginning to impact the way some MS research is being conducted. My guest is the founder and CEO of iQuity, Dr. Chase Spurlock. iQuity is using its expertise in machine learning to improve patient care, drive the creation of new therapies, and reduce the costs associated with managing chronic illness, including multiple sclerosis. We're also talking about the important but sometimes overlooked difference between MS facts and MS beliefs. We'll tell you about the safety alert that the FDA has issued for Lemtrada, and new survey research from the MS Society in the UK that shows the majority of people living with MS are living with feelings of loneliness and isolation. You'll hear about new study data that shows the gender differences in MS have some age-related fine points that are worth noting, and we'll tell you about a Phase 3 clinical trial that's looking at the effectiveness of high-dose biotin in slowing or stopping MS progression for people living with progressive MS. We have a lot to talk about! Are you ready for RealTalk MS?! ___________

The Difference Between MS Facts & MS Beliefs 0:22

How AI is About to Disrupt Healthcare 4:21

FDA Issues a Safety Alert for Lemtrada 7:40

MS Society in the UK Survey Research Shows 3 in 5 People Living with MS are Living with Loneliness 9:51

Gender Differences in MS Vary with Age & MS Subtype 13:40

MedDay Phase 3 Clinical Trial for Progressive MS Fully Enrolled 15:55

My Interview with iQuity CEO, Dr. Chase Spurlock 17:50

___________

LINKSIf your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com

Download the RealTalk MS App for iOS

Download the RealTalk MS App for Android

FDA Warns About Rare But Serious Risks of Stroke & Blood Vessel Wall Tears with Multiple Sclerosis Drug Lemtrada

Age-Dependent Variation of Female Preponderance Across Different Phenotypes of Multiple Sclerosis: A Retrospective Cross-Sectional Study

iQuity

Give RealTalk MS a Rating & Review

___________

Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com.

RealTalk MS Episode 68 Hosted By: Jon Strum Guest: Dr. Chase Spurlock

Tags: MS, MultipleSclerosis, MS, RealTalkMS, mssocietyUK, AI, Lemtrada, MedDay, Biotin, iQuity