RealTalk MS

Latest Episodes:

Episode 116: Dual-Tasking & MS with Dr. Soha Saleh Nov 18, 2019

Show notes

Last week, the National MS Society and RealTalk MS announced a new partnership. And we're definitely talking about it! My guest is Dr. Soha Saleh, a research scientist at Kessler Foundation's Center for Mobility and Rehabilitation Engineering Research, and we're talking about her innovative research in understanding how MS impacts dual-tasking -- something that all of us do, all day long. We'll tell you about the newly announced Weill Neurohub, and why that's such promising news for people affected by MS. We're also talking about the price of Vumerity, the new oral disease-modifying therapy, and suggesting some of the things to keep in mind as we consider steps to ensure that everyone living with MS has access to affordable prescription medications. And we'll tell you about the alternative to EDSS that's been proposed by the Multiple Sclerosis Outcome Assessments Consortium. We have a lot to talk about! Are you ready for RealTalk MS??! ___________ A BIG Announcement About RealTalk MS! 1:19

Introducing the Weill Neurohub 3:36

The Price of Vumerity 5:47

An Alternative to EDSS Has Been Proposed 9:58

My Interview with Dr. Soha Saleh 13:49

How to Subscribe to RealTalk MS, Download the RealTalk MS App, or Listen with Alexa 29:31

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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: jon@realtalkms.comPhone: (310) 526-2283

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LINKS

If 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

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The National MS Society & RealTalk MS Announce a Partnership

The Weill Neurohub

Evaluation of Multiple Sclerosis Disability Outcome Measures Using Pooled Clinical Trial Data

The Kessler Foundation Center for Mobility and Rehabilitation Engineering Research

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RealTalk MS Episode 116 Hosted By: Jon Strum Guests: Dr. Soha Saleh

Tags: MS, MultipleSclerosis, MSResearch, MSSociety, KesslerFdn, RealTalkMS

Episode 115: Secondary-Progressive MS with Dr. Mary Bailey Nov 12, 2019

Show notes

My guest this week is Dr. Mary Bailey, a neurologist specializing in MS care at the Mandell Center for Multiple Sclerosis in Hartford, Connecticut, and we're talking about some of the changes that occur as relapsing-remitting MS transitions to secondary progressive MS. Since about 80% of the people living with relapsing-remitting MS will experience that transition to secondary progressive MS, I think it's an important conversation to have. Since yesterday was Veterans Day in the United States, we're talking about the connection between Veterans and MS and the innovative MS research being funded by the Department of Defense. We've received some listener requests about this, so we're revisiting our conversation with Dr. Mitzi Joi Williams about minority participation in MS research. We'll also point you toward a replay of a webinar that Dr. Williams hosted about this important topic. We'll give you the details about a First Descents ski trip to Crested Butte, Colorado that's been created specifically for young adults who are living with MS. And it's FREE! (And, of course, we'll tell you where and how to begin the registration process!) You'll find out where to catch the video replay of Progress in MS Research Live Update 2019 that was live-streamed last week by MS Research Australia. The program features 4 outstanding MS experts and a LOT of great information! November is National Family Caregivers Month, and we're talking about a very worthwhile short video that gives us what I think is a very authentic peek at some of the things that couples affected by MS go through every day. And it also provides some excellent tips on how both partners can best manage their relationship when one of them becomes the other's caregiver. We have a lot to talk about! Are you ready for RealTalk MS??! ___________ Greetings from the 4th Annual National Caregiving Conference :40

Looking Ahead to the National MS Society Leadership Conference 1:09

MS & U.S. Military Veterans 2:43

Video Offers Care Partner Tips & Inspiration 4:40

First Descents is Offering a FREE ski trip to Colorado to Young Adults Living with MS 5:33

Catch the Progress in MS Research Update 2019 Video Replay 7:32

Minority Participation in MS Research with Dr. Mitzi Joi Williams 8:41

My Interview with Dr. Mary Bailey 18:23

How You Can Share This Episode of RealTalk MS 26:37

How to Subscribe to RealTalk MS, Download the RealTalk MS App, or Listen with Alexa 27:09

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Just copy this link & paste it into your text or email: https://realtalkms.com/115

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

Email: jon@realtalkms.comPhone: (310) 526-2283

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LINKS

If 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

Give RealTalk MS a Rating & Review

U.S. Military Veterans & MS

VIDEO: MS and Care Partnership -- Tips & Inspiration

First Descents Skiing at Crested Butte

VIDEO REPLAY: Progress in MS Research Live Update 2019

VIDEO: Addressing Common Misconceptions About Research and Clinical Trials in Minority Groups

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RealTalk MS Episode 115 Hosted By: Jon Strum Guests: Dr. Mary Bailey

Tags: MS, MultipleSclerosis, MSResearch, MSSociety, RealTalkMS

RealTalk MS Bonus: MS MindShift with Yvonne DeSousa Nov 07, 2019

Show notes

This episode is sponsored by Celgene and the MS MindShift Initiative, which aims to educate about the important role the brain plays in MS.

My guest is Yvonne DeSousa, who is a paid spokesperson for the MS MindShift. Yvonne was diagnosed with MS in 2009. She quickly discovered that humor was able to help settle her fears and act as a release. Years later, Yvonne has continued using humor to not only improve her mood, but she's also worked to spread laughter and joy to the rest of the MS community through her blog and her book.

In this episode, Yvonne shares how she adopted a comedic outlook on MS and has been able to introduce different lifestyle choices into her everyday lifestyle to help maintain a healthy brain and a positive attitude. We're also discussing ways people living with MS can use laughter as a coping mechanism, along with shifting their focus towards brain health.

To learn more about the brain's role in MS and the lifestyle choices you can make to help keep your brain as healthy as possible for as long as possible, visit www.MSMindShift.com

Episode 114: Understanding & Treating Cognitive Impairment in MS with Dr. Silvana Costa Nov 05, 2019

Show notes

My guest this week is Dr. Silvana Costa, a research scientist in the Neuropsychology and Neuroscience Center at the Kessler Foundation. Dr. Costa's work is focused on cognitive impairment in MS, specifically, information processing speed, which is something that people living with MS often have to deal with. We'll talk with Dr. Costa about some of her specific research, along with a promising intervention designed to improve cognitive processing speed for people living with MS. We're also talking about the FDA approval of Vumerity, an oral disease-modifying therapy for relapsing-remitting MS and active secondary progressive MS. We'll tell you about the stem cell therapy that was just approved for people with MS in Scotland. The Patient-Centered Outcomes Research Institute is an important part of the Affordable Care Act. It's currently authorized to operate for just 16 more days. You'll learn about the bipartisan effort in the U.S. Congress to re-authorize PCORI, and why that benefits people affected by MS. November is National Family Caregivers Month, and we're talking about what that means, why it's important, and why MS caregivers need to #BeCareCurious. We have a lot to talk about! Are you ready for RealTalk MS??! ___________ Let's Meet Up! Where I'll Be in November :22

Vumerity Receives FDA Approval 3:44

Patient-Centered Outcomes Research Institute (PCORI) Bipartisan Re-Authorization Bill 4:34

Hematopoietic Stem Cell Transplantation (HSCT) Approved for MS in Scotland 8:38

November is National Family Caregivers Month 10:42

My Interview with Dr. Silvana Costa 15:53

How to Subscribe to RealTalk MS, Download the RealTalk MS App, or Listen with Alexa 24:19

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ADD YOUR VOICE TO THE CONVERSATION

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

Email: jon@realtalkms.comPhone: (310) 526-2283

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LINKS

If 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

Give RealTalk MS a Rating & Review

Kessler Foundation

Patient-Centered Outcomes Research Institute

iConquer MS

Caregiver Action Network -- National Family Caregivers Month

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Download the RealTalk MS App for iOS

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RealTalk MS Episode 114 Hosted By: Jon Strum Guests: Dr. Silvana Costa

Tags: MS, MultipleSclerosis, MSResearch, MSSociety, PCORI, stemcells, BeCareCurious, KesslerFdn, RealTalkMS

Episode 113: The Things You Should Be Doing When You've Been Diagnosed with MS with Montel Williams Oct 29, 2019

Show notes

My guest this week is TV personality, Montel Williams. Since receiving his MS diagnosis in 1999, Montel has been a highly visible advocate for people living with MS. We're talking to Montel about his initial reaction to his own MS diagnosis, and what advice he would give to someone who was diagnosed with MS today (HINT: it's great advice!). We'll also talk to Montel about My MS Second Act, a new initiative that he's helping to launch and that you can get involved in. We're also talking about the National MS Society's $14.6 million dollar investment in 43 new MS research projects. We'll tell you about a new study that focuses on how and when people living with MS consider reducing their hours at work or even leaving the workforce. You'll hear about an MS research update featuring 4 renowned MS experts that will be live-streamed later this week. We're talking about the upcoming MS Summit on Nov. 9th in Chicago. And we'll tell you about a great one-minute animation about MS and self-esteem from the MS International Federation. We have a lot to talk about! Are you ready for RealTalk MS??! ___________ Montel Williams Helps Launch My MS Second Act :22

The National MS Society Invests $14.6 Million in 43 New MS Research Projects 1:22

Study Focuses on How Aging Impacts Employment for People Living with MS 4:30

MS Research Australia to Live-Stream MS Research Update Live 2019 8:38

In Chicago on Nov 9th? Don't Miss the MS Summit 10:18

MSIF Launches Animated Message About Self-Esteem & MS 11:35

My Interview with Montel Williams 13:15

How to Subscribe to RealTalk MS, Download the RealTalk MS App, or Listen on with Alexa 25:22

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ADD YOUR VOICE TO THE CONVERSATION

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

Email: jon@realtalkms.comPhone: (310) 526-2283

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LINKS

If 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

Give RealTalk MS a Rating & Review

MS Society Commits $14.6 Million for 43 New MS Research Projects

STUDY: Unemployment in Multiple Sclerosis Across the Ages: How Factors of Unemployment Differ Among the Decades of Life

MSIF Animation About Dealing with Low Self-Esteem & MS

My MS Second Act Digital Storytelling Kit

Talk SPMS on Facebook

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RealTalk MS Episode 113 Hosted By: Jon Strum Guests: Montel Williams

Tags: MS, MultipleSclerosis, MSResearch, MSSociety, StopMS, mssocietyuk, MSIntFederation, MSAssocKe, Esclerosiseme, RealTalkMS

RealTalk MS Bonus: MS MindShift with Ashley Ringstaff Oct 25, 2019

Show notes

This special episode of RealTalk MS is sponsored by Celgene and the MS MindShift initiative, which aims to educate about the important role the brain plays in MS.

My guest is Ashley Ringstaff, who is a paid spokesperson for the MS MindShift. Ashley was diagnosed with relapsing-remitting MS at the age of 22. Many of us know that MS can be very unpredictable – never knowing what symptoms you'll have to deal with day-to-day. This can lead to frustration for many people living with the disease. Ashley doesn't let this frustration get in the way of living her life to the fullest, especially when it comes to being the mother of two boys.

We'll be discussing what it was like being diagnosed while caring for young children, and the different lifestyle choices that Ashley has adopted to keep herself stress and frustration-free throughout her MS journey. We'll also talk about the importance of brain health and share some tips on what people living with MS can do to keep their brain healthy.

To learn more about the brain's role in MS and the lifestyle choices you can make to help keep your brain as healthy as possible for as long as possible, visit www.MSMindShift.com.

Episode 112: The MSIF People with MS Forum with Dr. Laura Musambayi and Gabriela Hidalgo Oct 22, 2019

Show notes

I'm back from attending the MS International Federation's People With MS Forum in Athens, Greece, and it was a remarkable few days spent with some truly remarkable people. In this episode of RealTalk MS, you'll meet two of those remarkable people. First, we'll talk with Dr. Laura Musambayi, the founder of the MS Association of Kenya. Dr. Musambayi will share her experiences in a country of 50 million people, with just 20 neurologists, and no access to disease-modifying therapy. Then, you'll meet Gabriela Hidalgo, a Project Manager at Esclerosis Multiple España, who will tell us about a very successful program designed to reduce isolation and depression and re-connect people affected by MS with their lives. We're also talking about an article that got my attention last week. Professor Alan Thompson wrote that We Can Stop MS -- And This Is How. (HINT: He's 100% right!) We have a lot to talk about! Are you ready for RealTalk MS??! ___________ Reporting Back from the MSIF People with MS Forum :22

We Can Stop MS -- And This Is How 2:15

My Conversation with Dr. Laura Musambayi 9:19

My Conversation with Gabriela Hidalgo 18:03

Subscribe to RealTalk MS 28:47

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ADD YOUR VOICE TO THE CONVERSATION

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

Email: jon@realtalkms.comPhone: (310) 526-2283

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LINKS

If 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

Give RealTalk MS a Rating & Review

MS International Federation

We Can Stop Multiple Sclerosis -- And This Is How

Donate Online to the National MS Society

Donate Online to the UK MS Society's #StopMS Campaign

Multiple Sclerosis Association of Kenya

Esclerosis Multiple España

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RealTalk MS Episode 112 Hosted By: Jon Strum Guests: Dr. Laura Musambayi and Gabriela Hidalgo

Tags: MS, MultipleSclerosis, MSResearch, MSSociety, StopMS, mssocietyuk, MSIntFederation, MSAssocKe, Esclerosiseme, RealTalkMS

Episode 111: The Changing Face of MS Over 20 Years -- The CLIMB Study with Dr. Tanuja Chitnis Oct 14, 2019

Show notes

For almost 20 years, the CLIMB Study has been following thousands of MS patients, discovering so many aspects of multiple sclerosis and documenting how the disease changes over time. My guest is Dr. Tanuja Chitnis, Director of the CLIMB Study, Director of the Partners Pediatric Multiple Sclerosis Center at MassGeneral Hospital for Children, as well as the Director of the Translational Neuroimmunology Research Center at Brigham and Women's Hospital. We're also talking about an emerging topic that will continue to grow in importance and impact -- aging and MS. We're taking a deep dive into new changes in Medicare and how these changes will affect people living with MS. We'll tell you about a study that's going to evaluate how different types of exercise impact specific MS symptoms. And if you're living with MS in Canada, we'll remind you of what you have to do before you vote next week. We have a lot to talk about! Are you ready for RealTalk MS??! ___________ What I'll Be Talking About at the MSIF Forum :22

Aging with MS 1:26

A Deep Dive Into New Improvements to Medicare & How They Will Affect People Living with MS 5:05

The MS Society of Canada's #MakeMSMatter Campaign 14:06

Studying Exercise & Its Effect on Specific MS Symptoms 15:14

My Interview with Dr. Tanuja Chitnis 17:55

Subscribe to RealTalk MS 29:46

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ADD YOUR VOICE TO THE CONVERSATION

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

Email: jon@realtalkms.comPhone: (310) 526-2283

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LINKS

If 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

Give RealTalk MS a Rating & Review

The CLIMB Study

MS Society of Canada's #MakeMSMatter Campaign

University of Washington Clinical Trial testing 2 non-pharmacological approaches to managing MS-related pain delivered via online video conference. Email: msadapt@uw.edu Phone: (855) 320-8230

Kessler Foundation MS Research

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RealTalk MS Episode 111 Hosted By: Jon Strum Guest: Dr. Tanuja Chitnis

Tags: MS, MultipleSclerosis, MSResearch, MSSociety, MSActivist, KesslerFdn, MakeMSMatter, RealTalkMS

Episode 110: Coping with MS & Work Stress with Dr. Lauren Strober Oct 08, 2019

Show notes

When you're living with MS, it can feel as though you're taking a few extra things with you when you go to work. For instance, if you haven't told your employer that you've been diagnosed with MS, you're taking along the extra burden of having to keep a secret. You might be trying your best to manage your MS symptoms on the job, dealing with things like fatigue, vision problems, and even physical balance. During the workday, all of these things -- these "extra burdens" -- get piled right on top of all the other work-related stresses that you face every day. It's a lot to have to carry. My guest is Dr. Lauren Strober, a Senior Research Scientist at the Center for Neuropsychology & Neuroscience Research and a staff neuropsychologist at the Kessler Institute of Rehabilitation. Among her research projects, Dr. Strober has taken a close look at how people living with MS cope with work-related stress. We'll also take you through the dangers of surprise billing, and explain how you could end up with thousands of dollars in medical expenses that you never saw coming. We'll tell you about a couple of outstanding FREE events that you'll want to attend. You'll find out about the MS Society of Canada's #MakeMSMatter campaign. And Peer Baneke, the CEO of the MS International Federation will walk us through the newly announced Patient-Reported Outcomes Initiative for MS. We have a lot to talk about! Are you ready for RealTalk MS??! ___________ This is the Danger of Surprise Billing 1:30

CEO of the MS International Federation, Peer Baneke, Discusses the Patient-Reported Outcomes Initiative for MS 6:51

The MS Summit in Chicago on 11/09 13:38

Music to Cure MS Concert in Boston on 10/27 14:54

The MS Society of Canada's #MakeMSMatter Campaign 16:39

My Interview with Dr. Lauren Strober 19:10

Subscribe to RealTalk MS 32:47

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ADD YOUR VOICE TO THE CONVERSATION

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

Email: jon@realtalkms.comPhone: (310) 526-2283

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LINKS

If 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

Kessler Foundation MS Research

Music to Cure MS

Donate to the Accelerated Cure Project for MS

MS Society of Canada's #MakeMSMatter Campaign

Give RealTalk MS a Rating & Review

Download the RealTalk MS App for iOS

Download the RealTalk MS App for Android

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

RealTalk MS Episode 110 Hosted By: Jon Strum Guest: Dr. Lauren Strober

Tags: MS, MultipleSclerosis, MSResearch, MSSociety, MSActivist, KesslerFdn, MakeMSMatter, AcceleratedCure, RealTalkMS

Episode 109: On Becoming an MS Research Scientist with Dr. Anisha Doshi Oct 01, 2019

Show notes

I imagine everyone involved in MS research has their own reasons that make it important to them. My guest this week is Dr. Anisha Doshi, and Dr. Doshi's reasons are personal and powerful. Dr. Doshi will also update us on her current research project, and we'll talk with Dr. Doshi about the path that women face as they pursue a career in Neurology. You'll also hear Atara Biotherapeutics Chief Medical Officer Dr. AJ Joshi discuss Atara's clinical trial aimed at mitigating MS by using lab-engineered T-cells to attack B-cells carrying the Epstein-Barr Virus. We'll tell you about another newly announced clinical trial that's designed to see whether a probiotic will alter your gut bacteria so that it impacts your immune system and helps manage MS. And we'll share the results of the Global vsMS™ Survey of over 1,000 people living with MS. We have a lot to talk about! Are you ready for RealTalk MS??! ___________ National MS Society's Houston On The Move Luncheon Recap :22

Where I'll Be in October 1:46

ExeGi Pharma Launches Clinical Trial Testing Probiotic 4:04

Global vsMS™ Survey Results Announced 5:41

Atara Biotherapeutics' Chief Medical Officer, Dr. AJ Joshi, Discusses Their Cell Therapy Designed to Impact MS By Attacking the Epstein-Barr Virus 8:14

My Interview with Dr. Anisha Doshi 16:22

Subscribe to RealTalk MS 25:59

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ADD YOUR VOICE TO THE CONVERSATION

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

Email: jon@realtalkms.comPhone: (310) 526-2283

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LINKS

If 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

Multiple Sclerosis Impact on Daily Activities, Emotional Well-Being, and Relationships: The Global vsMS™ Survey

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Download the RealTalk MS App for iOS