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 Jodi Johnson, who is a paid spokesperson for the MS MindShift. Jodi has been living with MS for almost 12 years after having been diagnosed in January of 2008. Since her diagnosis, Jodi has shifted her perspective on the disease to focus on what she can do, instead of what she cannot. 

We’ll be talking to Jodi about coping with MS through personal growth and resilience and how different lifestyle choices can have an impact on brain health. She’ll also give us a look into her daily lifestyle routine which helps keep her 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

My guest is Stubhy Pandav, the lead singer of Lucky Boys Confusion and The Hoodie Life. Last year, Stubhy was diagnosed with MS. Then, Stubhy's insurance company told him that he couldn't start the disease-modifying therapy that his neurologist had prescribed.   We'll talk with Stubhy about how he's managed to navigate this first year since his MS diagnosis, and we'll also talk with him about MS Sucks: Singing for a Cure, a benefit concert that's raising funds for the Accelerated Cure Project for MS.   We're also talking about the warning that the FDA just issued about CBD. And we'll tell you why two Harvard neurologists have announced that it's time to re-think how neurologists treat MS.    If you've wondered why the cost of MS medications seems to be constantly rising, we'll tell you what a research team from Oregon State University discovered. And we'll tell you where you can sign up for the upcoming webinar, "Debunking Diet Myths."   We have a lot to talk about! Are you ready for RealTalk MS??! ___________   Home for the Holidays  :22

FDA Issues Warning About CBD  2:29

Harvard Neurologists Say It's Time to Re-Think MS Treatment Approach    5:39

What Really Drives Up the Price of MS Medications?   8:29

Webinar: Debunking Diet Myths  13:12

My Interview with Stubhy Pandav  14:48

Share This Episode  31:46

How to Subscribe to RealTalk MS, Download the RealTalk MS App, and Listen with Alexa  32:12

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

Email: [email protected]Phone: (310) 526-2283

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MS Sucks: Singing For a Cure

RealTalk MS Episode 74: Dr. Aaron Boster & The Induction vs Escalation MS Treatment Philosophy

An Argument for Broad Use of High Efficacy Treatments in Early Multiple Sclerosis

Qualitative Study on the Price of Drugs for Multiple Sclerosis: Gaming the System

Can-Do MS & National MS Society Webinar Registration: Debunking Diet Myths

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RealTalk MS Episode 118 Hosted By: Jon Strum Guests: Stubhy Pandav

Tags: MS, MultipleSclerosis, MSResearch, MSSociety, CBD, Cannabis, RealTalkMS

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November is National Family Caregiver Month, and while I was at the 4th Annual National Caregiving Conference in Chicago, I met this week's guest, Caregiver Strategist Penny Patnaude. Penny and I talked about some of the things that caregivers want to be thinking about in planning their own strategy for providing great care to their loved one without losing themselves in the process.    I'll also introduce you to Dr. Lindsey Knowles, a young MS rehabilitation researcher who will give us an insider's look at what the Tykeson Fellows Conference is all about, and why it's so important for the future of MS research.   We're also talking about the cannabis-based treatment for MS spasticity that was approved in the U.K. You'll hear about last week's International Progressive MS Alliance meeting in Amsterdam, and we'll tell you about an investigational therapy that can reset the immune system in the mouse model of MS in a single dose.   We'll remind you that if you're a young adult, between 18 and 45 years old, First Descents is offering you a week-long ski trip to Crested Butte, Colorado. And it's FREE! (Don't worry, we'll tell you how and where to begin the application process!)   You'll hear about the research team in Montreal that may have found a way to stop MS progression.   And we'll tell you how easy it is to share this episode of RealTalk MS with family and friends!   We have a lot to talk about! Are you ready for RealTalk MS??! ___________   Thanks for all the kind words!   :22

The National MS Society & RealTalk MS Partnership  :52

Join the Conversation! Get In Touch with RealTalk MS    2:21

The Progressive MS Alliance Meeting in Amsterdam   3:32

The Tykeson Fellows Conference & My Conversation with Dr. Lindsey Knowles  5:26

Sativex Approved in U.K. for MS Spasticity  11:12

Single Dose of Investigational Therapy Resets the Immune System in Mouse-Model of MS  13:19

First Descents Offers a FREE Ski Trip to Crested Butte to Young Adults Living with MS  15:39

Canadian Research Team Says They May Be Able to Stop MS Progression  17:51

My Interview with Caregiver Strategist Penny Patnaude  19:51

Share This Episode  27:11

How to Subscribe to RealTalk MS, Download the RealTalk MS App, or Listen with Alexa  27:36

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

Email: [email protected]Phone: (310) 526-2283

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The National MS Society & RealTalk MS Announce a Partnership

The International Progressive MS Alliance

Administration of a CD45 Antibody Drug Conjugate as a Novel, Targeted Approach to Achieve Immune System Reset: A Single Dose of CD45-targeted ADC Safely Conditions for Autologous Transplant and Ameliorates Disease in Multiple Models of Immune Disease

First Descents Skiing at Crested Butte

Activated Leukocyte Cell Adhesion Molecule Regulates B Lymphocyte Migration Across Central Nervous System Barriers

The Caregiver Strategist

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RealTalk MS Episode 117 Hosted By: Jon Strum Guests: Penny Patnaude

Tags: MS, MultipleSclerosis, MSResearch, MSSociety, Caregiving, Sativex, Stemcells, FirstDescents, RealTalkMS

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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 Caroline Craven, who is a paid spokesperson for the MS MindShift. Caroline could not walk or see without assistance when she was first diagnosed with multiple sclerosis in 2001. Today she is thriving and shares her personal experiences, life hacks, and the holistic lifestyle choices that she has made to help manage her MS symptoms, via her blog.

We’ll be discussing how Caroline pursues positivity and her personal passions while living with MS, in order to keep her brain active and engaged. We’ll also be discussing the lifestyle choices she has made to help maintain her 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.

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

Email: [email protected]Phone: (310) 526-2283

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LINKS

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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

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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: [email protected]Phone: (310) 526-2283

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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

Privacy Policy

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

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

___________

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: [email protected]Phone: (310) 526-2283

___________

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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Kessler Foundation

Patient-Centered Outcomes Research Institute

iConquer MS

Caregiver Action Network -- National Family Caregivers Month

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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

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

___________

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: [email protected]Phone: (310) 526-2283

___________

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

Register for Progress in MS Research Live Update 2019

Register to attend the 2019 Multiple Sclerosis Summit

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

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.