RealTalk MS

Latest Episodes:

Episode 47: Mental Health Technology & MS Depression Aug 07, 2018

Show notes

You've heard the statistic before -- 50% of the people living with MS will be diagnosed with depression. And research has shown us that some of the most troubling MS symptoms, including fatigue, cognition, and even physical disability, are all made worse by depression.

Unfortunately, among people living with MS, depression is often overlooked, undiagnosed, and left to only get worse. So imagine an app that will tell you when you're heading toward depression before you even feel it. That's not science fiction -- it's science.

My guest is Peta Slocombe the Senior V.P. of Corporate Health at mental health technology company, Medibio. We're talking about how Medibio's game-changing technology can improve the quality of life for people living with MS.

We're also talking about iConquer MS -- a wide-ranging MS research community that's patient-focused, patient-managed, and patient-driven. Find out how you can be a part of iConquer MS and take an active role in unraveling the riddle of MS.

We'll tell you about about how and why your health insurance premium is going to increase, and how you can test-drive a smartphone app that will better personalize your MS treatment.

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

___________

Which Symptoms Matter Most to People Living with MS 1:43

You Can Participate in Patient-Centered MS Research with iConquer MS 3:29

Why New "Short Term" Insurance Rules Will Increase Your Health Insurance Premium 5:48

Test Drive an MS Smartphone App That Will Lead to Better Personalized MS Treatment 10:49

Interview with Peta Slocombe 12:07

___________

LINKSIf your podcast app doesn't show these links, you'll find them in the show notes at www.RealTalkMS.com

The Disease Burden of Multiple Sclerosis from the Individual and Population Perspective: Which Symptoms Matter Most?

iConquer MS

myMS App

Medibio

Share Your Feedback About RealTalk 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 47 Hosted By: Jon Strum Guest: Peta Slocombe

Tags: MS, MultipleSclerosis, MSResearch, Medibio, Depression, RealTalkMS

Episode 46: Using Data & Technology to Improve MS Care with Michelle Mitchell, CEO of MS Society UK Jul 31, 2018

Show notes

We take advantage of digital tools every day to make our lives easier. But when it comes to managing our health, there's still a long way to go. That's why the MS Society in the UK commissioned a report titled "Improving Care for People with MS: The Potential of Data & Technology". That report has just been published, and we're discussing some of the observations and recommendations contained in this remarkable report with my special guest, Michelle Mitchell, CEO of the MS Society in the UK. We're also talking about a new artificial intelligence-based data analysis platform that can diagnose MS sooner than traditional diagnostic methods, with 90% accuracy. We'll tell you about a new poll that shows that the overwhelming majority of American voters support protecting the rights of people with pre-existing medical conditions, in spite of the Justice Department's efforts to remove those protections. We're taking a look at new research that could change the game when it comes to myelin repair. And we'll tell you about two different MS research studies that are recruiting participants to complete a 15-minute online survey. We have a lot to talk about. Are you ready for RealTalk MS? ___________

AI-Enabled Data Analysis Platform Can Diagnose MS 1:37

Latest Poll Shows Overwhelming Voter Support For Protecting Patients With Pre-Existing Medical Conditions in the U.S. 3:40

Groundbreaking Research Highlights Different Paths to Myelin Repair 7:24

2 Research Studies Recruiting Participants for Online Surveys 12:07

Interview with Michelle Mitchell 13:49

___________

LINKSIf your podcast app doesn't show these links, you'll find them in the show notes at www.RealTalkMS.com

iQuity

Friend of the Court Brief Filed in U.S. District Court by the National MS Society, American Cancer Society, the American Diabetes Association, the American Heart Association, and the American Lung Association

University of Melbourne Research Devising New Way to Repair Myelin

CWRU Research Demonstrates Blocking Cholesterol Enzyme Stimulates Myelin Repair

Study Opportunity: Coping Styles in MS & Other Autoimmune Diseases

Study Opportunity: Treatment Options For Walking Difficulties in MS

Improving Care for People with MS: The Potential of Data & Technology

MS Society of Great Britain

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 46 Hosted By: Jon Strum Guest: Michelle Mitchell

Tags: MS, MultipleSclerosis, MSResearch, iQuity, ProtectOurCare, mssocietyuk, nuffieldtrust, mscare, RealTalkMS

Episode 45: Building Better Caregivers with Dr. Kate Lorig Jul 24, 2018

Show notes

The caregiver's journey doesn't always get paid the proper amount of attention until a family caregiver finds themselves feeling isolated, overwhelmed, drained, and depressed. But it doesn't have to come to that. My guest is Dr. Kate Lorig, lead author of Building Better Caregivers: A Family Caregiver's Guide to Reducing Stress and Staying Healthy. And we're talking about how to go about building better caregivers. We're also talking about a new MRI technique that may enable doctors to identify MS patients who are at high risk of disease progression and disability, whether Tysabri can improve MS sexual dysfunction, a new film about how an "invisible disease" can impact everyday daily living, and a clinical trial that's looking at whether two popular "MS diets" can improve MS fatigue. We have a lot to talk about. Are you ready for RealTalk MS? ___________

MRI Technique Associates Iron in Brain with MS Disability 1:44

Tysabri May Be Effective in Treating MS Sexual Dysfunction 4:11

"Hidden" Shows How an Invisible Disease Can Impact Everyday Life 6:05

Clinical Trial to Look at Effectiveness of Diet in Improving MS Fatigue Is Recruiting Participants 8:08

Interview with Dr. Kate Lorig 10:24

___________

LINKSIf your podcast app doesn't show these links, you'll find them in the show notes at www.RealTalkMS.com

Brain Iron at Quantitative MRI Is Associated with Disability in Multiple Sclerosis

Patient Perceived Changes in Sexual Dysfunction after Initiation of Natalizumab for Multiple Sclerosis

Watch "Hidden" on YouTube

shift.ms

Clinical Trial to Test Dietary Approaches to Treating Fatigue in MS

Email Address for University of Iowa Diet & MS Fatigue Study is MSDietStudy@healthcare.uiowa.edu

Building Better Caregivers: A Family Caregiver's to Reducing Stress & Staying Healthy

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 45 Hosted By: Jon Strum Guest: Dr. Kate Lorig

Tags: MS, MultipleSclerosis, MSResearch, tysabri, Hidden, shiftms, terrywahls, wahlsdiet, swankdiet, caregiving, UIowabiomed, RealTalkMS

Gender Differences & MS Jul 17, 2018

Show notes

My guest this week is Dr. Rhonda Voskuhl, Director of the Multiple Sclerosis Program at the David Geffen School of Medicine at UCLA and the Jack H. Skirball professor of Multiple Sclerosis Research. Dr. Voskuhl is responsible for first identifying that understanding the gender differences in the disease is an important part of understanding MS. This is one of my favorite interviews, and it's packed with great information.

We're also talking about the potential of data and technology to improve care for people living with MS, how MS and depression can lead to high rates of Alexithymia among people living with MS, how recognizing non-traditional MS symptoms can lead to getting an MS diagnosis years earlier, and an opportunity for African-Americans with MS to participate in a UCSF study.

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

____________

MS + Depression or Anxiety = High Rates of Alexithymia 2:04

MS Society U.K. Commissions Report on the Potential of Data and Technology to Improve Care for People Living with MS 4:13

U.K.'s National Health Service Announces New App 9:18

Recognizing Non-Traditional Symptoms Can Lead to MS Diagnosis Years Earlier 11:34

UCSF Recruiting African-Americans with MS for Study 14:24

Interview with Dr. Rhonda Voskuhl 17:01

___________

LINKSIf your podcast app doesn't show these links, you'll find them in the show notes at www.RealTalkMS.com

International Progressive MS Alliance

High Levels of Alexithymia in Patients with Multiple Sclerosis

Improving Care for People with MS: The Potential of Data & Technology

New NHS App Will Make It Quciker & Easier to Access Health Services

Five Years Before MS Onset: Phenotyping the Prodrome

Email Address for UCSF Study is msdb@ucsf.edu

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 44 Hosted By: Jon Strum Guest: Dr. Rhonda Voskuhl

Tags: MS, MultipleSclerosis, MSResearch, ProgressiveMS, mssocietyuk, UCLANeurology, UCSFMedicine, RealTalkMS

Episode 43: Cannabis & MS Jul 09, 2018

Show notes

Using cannabis to treat MS symptoms has become a hot topic. And thanks to social media, a lot of opinions about cannabis and MS are posted as if they're facts...and that's not always the case. So, we're talking about cannabis and MS in this episode of RealTalk MS. We'll try to demystify it a bit and we'll give you an idea of what some of the research is telling us. We'll talk about which MS symptoms cannabis might be good for...and which ones it might not be good for.

We're also talking about the latest reason that your health insurance premium is likely to rise in 2019 in the U.S., we'll walk you through "Clinical Trials 101" and explain what each phase of a clinical trial is really all about, and we'll give you the latest update on Ocrevus being rejected as a treatment for PPMS in the U.K.

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

____________

U.S. Suspends Payments to Health Insurers 1:47

Everything You Always Wanted To Know About Clinical Trials 8:25

Clinical Trial to Track Urinary Symptoms in MS Is Recruiting Participants 15:05

NICE Rejects Ocrevus for PPMS 16:47

Cannabis & MS 19:04

___________

LINKSIf your podcast app doesn't show these links, you'll find them in the show notes at www.RealTalkMS.com

U.S. Suspends Payments to Health Insurers

Become an MS Activist

National MS Society Brochure on Participating in a Clinical Trial

ClinicalTrials.gov

Sample Urinary Symptoms & MS Clinical Trial Survey

Cannabis Use in People with Parkinson's Disease and Multiple Sclerosis: A Web-Based Investigation

National MS Society Research Paper on Cannabis & MS

AAN Guidelines for Medical Marijuana

Real World Experience of Medical Marijuana in Symptomatic Management of Multiple Sclerosis and Transverse Myelitis

Cannabidiol to Improve Mobility in People with MS

Knowledge and Attitudes of Australian General Practitioners Towards Medicinal Cannabis: A Cross-Sectional Survey

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 43 Hosted By: Jon Strum

Tags: MS, MultipleSclerosis, MSResearch, Ocrevus, ACA, ProtectOurCare, MSActivist, CannabisandMS, Cannabis, RealTalkMS

Episode 42: Stem Cell Therapy & MS Jul 03, 2018

Show notes

When you google the phrase "stem cell therapy for MS", it can feel like you fell into a black hole of conflicting information, misinformation, and dodgy information that can be full of promises designed to speak directly to someone who is anxiously and sometimes desperately looking for a miracle cure for a debilitating condition. And there's also plenty of good, credible information available online. But how do you go about separating the wheat from the chaff? We're going to try to jump start that process for you in this podcast episode, as we look at the current state of stem cell therapy & MS.

We're also discussing the latest news about Ocrevus, medical cannabis for MS, a clinical trial that's recruiting 900 people recently diagnosed with relapsing-remitting MS, a couple of new apps to help you manage MS, and a webinar about maintaining your independence with progressive MS.

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

____________

U.K. Approves Ocrevus for RRMS 2:12

MMJ Bioscience Seeks FDA Approval for Cannabis Phase II Clinical Trial 3:48

Biogen Adds MS & Cognition Resource Center to MyMSTeam 5:20

Biogen Releases Aby, an App for People Living with MS 6:30

Nationwide Clinical Trial Recruiting People Newly Diagnosed with MS 9:10

Roche & EAN Produces "Maintaining Independence in Progressive MS" Webinar 11:08

Stem Cell Therapy & MS 12:38

___________

LINKSIf your podcast app doesn't show these links, you'll find them in the show notes at www.RealTalkMS.com

MyMSTeam

TREAT-MS Clinical Trial

MS Society Brochure on Participating in a Clinical Trial

Maintaining Independence in Progressive MS Webinar

MS Society: Stem Cells in MS

___________

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

RealTalk MS Episode 42 Hosted By: Jon Strum

Tags: MS, MultipleSclerosis, MSResearch, Ocrevus, MyMSTeam, Biogen, Aby, HopkinsMedicine, ProgressiveMS, HSCT, RealTalkMS

Episode 41: Becoming an MS Research Fellow with Dr. Elisabeth Mari Jun 26, 2018

Show notes

We talk a lot about MS research. And when we do, we talk about the "investigators"...the experts...the scientists in the laboratories who are expanding our collective knowledge about MS. But who are these folks? How do you become an "investigator"? And why does someone decide that they want to make MS research their professional focus?

My guest on the podcast is Dr. Elisabeth Mari, Director of Biomedical Research for the National MS Society. Dr. Mari takes us behind the scenes and walks us through the process of how someone becomes an MS research fellow. Then, we'll talk with 3 MS research fellows that I met up with at the American Academy of Neurology Annual Meeting. You'll hear about the projects that they're working on, and we'll talk about what initially attracted them to focus on MS research. We're also talking about a new study that strengthens the link between Epstein-Barr Virus and MS, a biomarker that may indicate MS progression, a new Xbox adaptive controller for gamers with disabilities, and an opportunity for Hispanics and Latinos diagnosed with MS to participate in a clinical study. We have a lot to talk about! Are you ready for RealTalk MS? ____________

Study Strengthens Link Between Epstein-Barr Virus & MS 3:29

Neurofilament Light Chain May Predict RRMS Progression 4:56

Microsoft Creates Xbox Adaptive Controller for Gamers with Disabilities 7:40

Perception of Fall Risk Can Be As Important as Physical Limitations to People Living with MS 9:14

USC is Recruiting Latinos/Hispanics with MS for Clinical Trial 12:16

Interview with National MS Society's Director of Biomedical Research, Dr. Elisabeth Mari 14:53

Meet 3 MS Research Fellows 25:52

___________

LINKSIf your podcast app doesn't show these links, you'll find them in the show notes at www.RealTalkMS.com

New Study Shows Connection Between Epstein-Barr Virus and MS Progression

Levels of Neurofilament Light Chain May Predict MS Progression (Abstract is on Page 24)

Pre-Order the Microsoft Xbox Adaptive Controller

The Relationship Between Physiological and Perceived Fall Risk in People Living with MS

Hispanics and Latinos with MS Are Being Recruited for a Clinical Trial

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 40 Guest: Dr. Elisabeth Mari Hosted By: Jon Strum

Tags: MS, MultipleSclerosis, MSResearch, mssociety, EpsteinBarrEBV, Xbox, RealTalkMS

Episode 40: An MS Activist Is Running for Office with Marques Jones Jun 19, 2018

Show notes

MS Activist Marques Jones is running for public office in his home state of Virginia. Marques and I sat down to discuss how his role as an MS Activist led to his candidacy, and how his MS diagnosis has continued to inform his business life and his political life. We're also talking about the existential threat that now exists for people with pre-existing medical conditions in the U.S., how the MSAA can provide financial assistance for your MRI exam, how Ocrevus may delay the need for a wheelchair for 7 years, and the first clinical trial that's been designed to recognize the needs of severely disabled MS patients. We have a lot to talk about! Are you ready for RealTalk MS? ____________

The Trump Administration Has Asked a Federal Judge to Eliminate ACA Protections for People Living With Pre-Existing Conditions 1:30

The Multiple Sclerosis Association of America Expands MRI Access Fund 9:32

Ocrevus May Delay the Need for a Wheelchair for 7 Years 10:47

Genentech Announces 1st Clinical Trial to Recognize Needs of Severely Disabled MS Patients 12:05

Interview with MS Activist and Virginia State Senate Candidate Marques Jones 14:53

___________

LINKSIf your podcast app doesn't show these links, you'll find them in the show notes at www.RealTalkMS.com

Legal Brief Filed in U.S. District Court by the National MS Society, American Cancer Society, the American Diabetes Association, the American Heart Association, and the American Lung Association

MSAA MRI Access Fund Details & Application

Ocrevus May Delay Need for a Wheelchair by 7 Years

First Clinical Trial to Recognize the Needs of Severely Disabled MS Patients

Marques Jones For Virginia Senate

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 40 Guest: Marques Jones Hosted By: Jon Strum

Tags: MS, MultipleSclerosis, ProtectPatientsNow, MSActivist, MSAA, Ocrevus, NewPath, RealTalkMS

Episode 39: MS & Depression with Dr. Amy Sullivan Jun 12, 2018

Show notes

Experts estimate that depression affects about 50% of the people diagnosed with MS. And, left unchecked, depression can take your vibrant, colorful world and re-draw it in somber shades of gray.

If there's good news about depression, it's that it can be treated. In this special Vacation Edition of RealTalk MS, we're going to revisit a really important conversation that I had last November with Dr. Amy Sullivan, Director of Behavioral Medicine, Research and Training at the Mellen Center for Multiple Sclerosis at the Cleveland Clinic. Dr. Sullivan shares some really important insights about living with MS and depression...and what to do about it if you are.

Episode 38: The CMSC Annual Meeting with Dr. Rosalind Kalb, Marques Jones, Jill Blackburn & More Jun 05, 2018

Show notes

At the Consortium of Multiple Sclerosis Centers Annual Meeting, I learned about the Pediatric MS Alliance from Jill Blackburn. I met Dr. Miriam Franco and learned about the app that she's developed and you'll want to download. And I sat down with Dr. Rosalind Kalb and MS Activist Marques Jones to learn about MS Path 2 Care - a new set of educational modules designed to empower people living with MS to be active participants in their own care & treatment.

We're also talking about a study that demonstrates that treatment with Ocrevus may improve cognitive ability in MS patients who are at risk of disease progression. We'll discuss research that suggests that MS patients who are living with depression and fatigue are less likely to adhere to their disease-modifying therapy as prescribed by their neurologist. And I'll tell you how they lowered the cost of MS prescription medications in the U.K.

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

Study Indicates that Ocrevus Improves Cognitiion 2:21

Study Indicates that Depression & Fatigue May Affect MS Patient Adherence to Disease-Modifying Therapy 3:32

The U.K. Lowers the Cost of MS Prescription Drugs 7:59

Interview with Jill Blackburn, of the Pediatric MS Alliance 11:26

Interview with Dr. Miriam Franco about the Imagerywork app 18:35

Interview with Dr. Rosalind Kalb & Marques Jones about MS Path 2 Care 22:46

___________

LINKSIf your podcast app doesn't show these links, you'll find them in the show notes at www.RealTalkMS.com

Pediatric MS Alliance

Download Imagerywork for iPhone

Download Imagerywork for Android