RealTalk MS

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RealTalk MS Episode 189 Guests: Dr. Rhonda Voskuhl

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

Episode 188: Managing Your Cognitive Health in MS with Dr. Victoria Leavitt Apr 05, 2021

Show notes

More than half of all the people living with MS will develop problems with cognition. And while experiencing cognitive dysfunction can be challenging and frustrating, these kinds of changes can also be frightening.

Joining me to talk about things you can do to better manage cognitive changes and preserve healthy cognition is neuroscientist and neuropsychologist, Dr. Victoria Leavitt.

We're also talking about the encouraging results from a small clinical trial that tested stem cell therapy to treat progressive MS.

We'll tell you about a person living with secondary progressive MS who will soon be receiving the very first dose of an investigational antibody to treat progressive MS administered via nasal spray.

And we'll tell you about a game-based digital therapy for MS-related anxiety that is awaiting FDA approval.

We'll share news about the new Sanofi-Genzyme website that's been launched to recruit participants with MS for a large clinical trial.

And you'll hear about a novel device designed to improve walking for people with MS that's just been approved by the FDA.

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

Thank you! :27

Positive Results from stem cell clinical trial for progressive MS 3:00

Patient with secondary progressive MS will be first to receive Antibody to treat MS via nasal spray 5:01

MS-related anxiety? There may soon be an app for that! 7:24

New Sanofi-Genzyme website recruiting for clinical trials 8:59

PoNS device to improve walking for people with MS receives FDA approval 10:48

Dr. Victoria Leavitt discusses preserving cognitive function in MS 12:48

Share this episode 29:51

Take the RealTalk MS Listener Survey and win a $100 Amazon Gift Card 30:12

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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

National MS Society COVID-19 Vaccine Guidance for People Living with MS

eSupport Health

BrainStorm Announces Positive Topline Data in Phase 2 Study Evaluating NurOwn as a Treatment for Progressive MS

MyMSTrials.com

RealTalk MS Listener Survey (You'll be entered to win a $100 Amazon Gift Card!)

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RealTalk MS Episode 188 Guests: Dr. Victoria Leavitt

Tags: MS, MultipleSclerosis, MSResearch, MSSociety, RealTalkMS

Episode 187: Progressive MS Research, Treatment, and Rehabilitation with Dr. Kathy Zackowski and Dr. Daniel Ontaneda Mar 29, 2021

Show notes

About 80% of the people with relapsing-remitting MS will eventually be diagnosed with secondary progressive MS. At that point, their remissions stop and their MS symptoms continue to worsen. And about 15% of the people diagnosed with MS are diagnosed from the beginning with primary progressive MS. So identifying ways to optimally treat progressive MS is a priority.

Joining me with updates on progressive MS research, treatment, and rehabilitation are Dr. Kathy Zackowski and Dr. Daniel Ontaneda. Dr. Ontaneda is an associate professor of Neurology at the Cleveland Clinic Lerner College of Medicine of Case Western Reserve University and a staff member at the Cleveland Clinic Neurological Institute's Mellen Center for Multiple Sclerosis. And Dr. Zackowski is the Senior Director of Patient Management, Care and Rehabilitation Research at the National MS Society and a member of the International Progressive MS Alliance Scientific Steering Committee.

We're sharing some startling details about MS care from the European MS Platform's MS Barometer 2020.

We're talking about a study that shows that lifestyle choices like increasing physical activity and choosing not to smoke can have a positive impact on MS fatigue.

And we'll tell you about a new program that empowers people affected by MS to pose the questions that will drive MS research.

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

Details from the European MS Platform's MS Barometer 2020 1:34

The International Progressive MS Alliance issues a call to action on progressive MS rehabilitation with Dr. Kathy Zackowski 4:35

Study shows that lifestyle changes can impact MS fatigue 18:00

Our Own Questions Have Power 19:20

Progressive MS treatment and Research with Dr. Daniel Ontaneda 21:03

Share this episode 38:17

Take the RealTalk MS Listener Survey and you could win a $100 Amazon Gift Card 38:38

SHARE THIS EPISODE OF REALTALK MS

Just copy this link & paste it into your text or email: https://realtalkms.com/187

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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

National MS Society COVID-19 Vaccine Guidance for People Living with MS

MS Barometer 2020

Prioritizing Progressive MS Rehabilitation Research: A Call from the International Progressive MS Alliance

STUDY: Associations Between Fatigue Impact and Lifestyle Factors in People with Multiple Sclerosis: The Danish MS Hospitals Rehabilitation Study

iConquer MS: Our Questions Have Power

RealTalk MS Listener Survey (You'll be entered to win a $100 Amazon Gift Card!)

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

RealTalk MS Episode 187 Guests: Dr. Kathy Zackowski and Dr. Daniel Ontaneda

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

Episode 186: Building Your Resilience with Dr. Meghan Beier Mar 22, 2021

Show notes

Living through a lockdown can be challenging, and it's resilience that helps us get through life's challenges and recover from setbacks. And while resilience may have become a new topic of conversation for the world at large, when you're living with the uncertainty of MS, you come to realize that resilience is one of the most important tools in your self-care toolbox.

Joining me to talk about building your resilience is Dr. Meghan Beier. Dr. Beier is a Rehabilitation Neuropsychologist and an Assistant Professor of Physical Medicine at the Johns Hopkins University School of Medicine, where she specializes in cognitive rehabilitation and neuropsychological assessment and intervention.

We'll also share the National MS Society's Vaccine Advisory Group's updated vaccine guidance for people living with MS.

We'll tell you about the new oral disease-modifying therapy that just received FDA approval.

You'll hear about the newly-announced partnership between the MS Society and Park Health, and we'll explain how this partnership will deliver personalized one-to-one health coaching to help people live better with MS.

And we'll tell you about the entrepreneur who won the Lyfebulb Bristol Myers Squibb MS Innovation Challenge by setting out to resolve one of his father's most bothersome MS symptoms.

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

National MS Society's Vaccine Advisory Group announces updated guidance for people living with MS 2:03

Here's your chance to participate in COVID-19 & MS research 4:32

Ponesimod receives FDA approval 5:29

National MS Society announces partnership with Park Health 6:24

Evolution Devices wins Lyfebulb Bristol Myers Squibb Innovation Challenge 8:18

My interview with Dr. Meghan Beier 11:19

Share this episode 25:35

Take the RealTalk MS Listener Survey and you could win a $100 Amazon Gift Card 25:54

SHARE THIS EPISODE OF REALTALK MS

Just copy this link & paste it into your text or email: https://realtalkms.com/186

ADD YOUR VOICE TO THE CONVERSATION

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

National MS Society COVID-19 Vaccine Guidance for People Living with MS

COVID-19 Studies Recruiting People with MS

Evolution Devices

CAN-DO MS Program Information and Registration

Join the WalkMS RealTalk MS RealWalkers Team

RealTalk MS Listener Survey (You'll be entered to win a $100 Amazon Gift Card!)

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

RealTalk MS Episode 186 Guests: Dr. Meghan Beier

Tags: MS, MultipleSclerosis, MSResearch, MSSociety, MSActivist, Resilience, COVIDVaccine, Lyfebulb, RealTalkMS

Episode 185: MS Advocacy and the 2021 Virtual Public Policy Conference with Bari Talente Mar 15, 2021

Show notes

We're less than one week away from the National MS Society's Public Policy Conference. This year, the Public Policy Conference is virtual, which means that you have an opportunity to attend and learn how you can advocate for change on important policy issues affecting the MS community.

Joining me to talk about the Public Policy Conference and the issues that MS Activists will be discussing with our congressional representatives in the days following the conference is the Executive Vice-President of Advocacy and Healthcare Access for the National MS Society, Bari Talente.

This is Episode #185 of RealTalk MS, which means our 200th episode will be here before you know it. We're inviting you to help us figure out how to celebrate that milestone!

Developing breakthrough treatments for progressive MS? We'll share the info about a video replay of an International Progressive MS Alliance global webcast that you won't want to miss.

We're also talking with a biopharmaceutical company that's conducting clinical trials to investigate a solid gold nanomedicine treatment for remyelination.

And we'll tell you about a study that shows how an adaptive video game that you can play on your tablet provides a reliable measure of cognitive function for people living with MS.

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

Episode 200 of RealTalk MS is coming...what should we do??? :22

Thank you, Dave Bexfield and ActiveMSers! 1:14

You can support the RealTalk MS RealWalkers WalkMS Team 3:41

The Progressive MS Alliance Webcast Replay 6:45

Nanotechnology to solve remyelination? 8:20

My interview with Clene Nanomedicine's Chief Medical Officer, Dr. Robert Glanzman 9:45

Can video game technology make MS cognitive assessment easier, faster, and more accessible? 23:44

My interview with the National MS Society's Executive Vice-President of Advocacy and Healthcare Access, Bari Talente 26:46

Share this episode 38:11

Take the RealTalk MS Listener Survey and you could win a $100 Amazon Gift Card 38:32

SHARE THIS EPISODE OF REALTALK MS

Just copy this link & paste it into your text or email: https://realtalkms.com/185

ADD YOUR VOICE TO THE CONVERSATION

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

National MS Society COVID-19 Vaccine Guidance for People Living with MS

National MS Society: Timing MS Medications with COVID-19 mRNA Vaccines

ActiveMSers

Webcast Video Replay: Accelerating Breakthrough Treatments in Progressive MS

STUDY: Application of an Adaptive, Digital, Game-Based Approach for Cognitive Assessment in Multiple Sclerosis: Observational Study Support the WalkMS RealTalk MS RealWalkers Team

RealTalk MS Listener Survey (You'll be entered to win a $100 Amazon Gift Card!)

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

RealTalk MS Episode 185 Guests: Dr. Robert Glanzman, Bari Talente

Tags: MS, MultipleSclerosis, MSResearch, MSSociety, MSActivist, PPC2021, Nanotechnology, RealTalkMS

Episode 184: MS Awareness Week with Tracey Cooper-Harris and Sarah Quezada Mar 08, 2021

Show notes

It's MS Awareness Week and we're talking with two remarkable women, Sarah Quezada and Tracey Cooper-Harris, who are living their lives out loud, refusing to let MS define them.

We're also inviting you to participate in the first-ever RealTalk MS Listener Survey (and be entered into a drawing for a $100 Amazon Gift Card!).

We'll share research announced at the recent ACTRIMS Forum that explores whether we may be headed toward Cognitive-Dominant MS.

We're also talking about how the National MS Society is teaming up with the Lupus Research Alliance and the Juvenile Diabetes Research Foundation to focus research on autoimmune disease.

And we'll tell you about a study that examined factors other than physical disability that impact the quality of life for people living with MS.

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

MS Awareness Week and the power of sharing our stories :21

Take our RealTalk MS Listener Survey and you could win a $100 Amazon Gift Card 3:51

MS Society's COVID-19 Vaccine Guidance Group is reviewing the data from the Johnson & Johnson vaccine clinical trial 5:09

Are we headed for Cognitive-Dominant MS? 5:56

National MS Society is teaming up with the Lupus Research Alliance and the JDRF to fund autoimmune research 7:53

The impact of fatigue on quality of life 9:18

My interview with Sarah Quezada and Tracey Cooper-Harris 13:25

Share this episode 39:52

Take the RealTalk MS Listener Survey 40:12

WalkMS 2021 is here! 40:39

SHARE THIS EPISODE OF REALTALK MS

Just copy this link & paste it into your text or email: https://realtalkms.com/184

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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

RealTalk MS ACTRIMS Forum Bonus Episode

National MS Society COVID-19 Vaccine Guidance for People Living with MS

National MS Society: Timing MS Medications with COVID-19 mRNA Vaccines

STUDY: Cerebral/Cognitive-Predominant MS Decoding Immune-Mediated Diseases

STUDY: Quality of Life in Multiple Sclerosis: The Differential Impact of Motor and Cognitive Fatigue WalkMS 2021

RealTalk MS Listener Survey (You'll be entered to win a $100 Amazon Gift Card!)

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

RealTalk MS Episode 184 Guests: Sarah Quezada and Tracey Cooper-Harris

Tags: MS, MultipleSclerosis, MSResearch, MSSociety, RealTalkMS

Episode 183: Racial and Ethnic Disparities in MS with Dr. Mitzi Joi Williams Mar 01, 2021

Show notes

When it comes to accessing care and even the disease course itself, MS is not an equal-opportunity disease. We're talking with Dr. Mitzi Joi Williams about the disparities that affect members of minority populations who are living with MS.

Dr. Williams is a Board-Certified Neurologist and Multiple Sclerosis Specialist who is passionate about educating and empowering people affected by MS to understand the disease process and the goals of treatment. And Dr. Williams is an expert in understanding MS in underserved and minority populations.

We're also inviting you to participate in the first-ever RealTalk MS Listener Survey (and be entered into a drawing for a $100 Amazon Gift Card!).

We'll tell you about a call by the International Progressive MS Alliance to improve clinical trials.

We'll share research announced at last week's ACTRIMS Forum that suggests there is an alarming amount of opioid use among people living with MS.

We're also talking about a newly launched digital music therapy program that you can access from home.

And we're sharing this month's CAN-DO MS programs that are all focused on building resilience.

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

Don't miss the ACTRIMS bonus episode! :22

Take our RealTalk MS Listener Survey and you could win a $100 Amazon Gift Card 1:17

International Progressive MS Alliance calls for changes in clinical trials 3:23

Opioid use among people living with MS 6:27

Digital music therapy for people living with MS 8:48

CAN-DO MS programs are focusing on resilience in March 10:23

My interview with Dr. Mitzi Joi Williams 12:02

Share this episode 29:50

Take the RealTalk MS Listener Survey 30:12

WalkMS 2021 is here! 30:37

SHARE THIS EPISODE OF REALTALK MS

Just copy this link & paste it into your text or email: https://realtalkms.com/183

ADD YOUR VOICE TO THE CONVERSATION

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

And don't forget to join us in the RealTalk MS Facebook group!

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

RealTalk MS ACTRIMS Forum Bonus Episode

National MS Society COVID-19 Vaccine Guidance for People Living with MS

National MS Society: Timing MS Medications with COVID-19 mRNA Vaccines

Facing the Urgency of Therapies for Progressive MS -- A Progressive MS Alliance Proposal STUDY: One in Five (20%) People with Multiple Sclerosis Use Prescription Opioids MS in Harmony CAN-DO MS program info & registration

WalkMS 2021

RealTalk MS Listener Survey (You'll be entered to win a $100 Amazon Gift Card!)

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

RealTalk MS Episode 183 Guests: Dr. Mitzi Joi Williams

Tags: MS, MultipleSclerosis, MSResearch, MSSociety, RealTalkMS

Bonus Episode: ACTRIMS 2021 Feb 27, 2021

Show notes

Welcome to a bonus ACTRIMS Forum 2021 episode of RealTalk MS. ACTRIMS is an acronym that stands for the Americas Committee for Treatment and Research in Multiple Sclerosis and this year, the ACTRIMS Forum is a virtual meeting, bringing together over 1700 MS research scientists and clinicians to share the latest MS research news and insights. We'll take you inside the proceedings at ACTRIMS and share highlights from some of the most compelling presentations. And I'm sitting down to talk with this year's recipient of the Barancik Prize, Dr. Dwight Bergles. The Barancik Prize is awarded for innovation in MS research and Dr. Bergles is being recognized for his pioneering remyelination research. We have a lot to talk about! Are you ready for RealTalk MS??!

SHARE THIS EPISODE OF REALTALK MS

Just copy this link & paste it into your text or email: https://realtalkms.com/actrims2021

ADD YOUR VOICE TO THE CONVERSATION

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

And don't forget to join us in the RealTalk MS Facebook group!

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

National MS Society COVID-19 Vaccine Guidance for People Living with MS

National MS Society: Timing MS Medications with COVID-19 mRNA Vaccines

RealTalk MS Listener Survey (You'll be entered to win a $100 Amazon Gift Card!)

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

RealTalk MS ACTRIMS 2021 Bonus Episode Guests: Dr. Dwight Bergles

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

Episode 182: COVID-19 Vaccine Myth-Busting with Dr. Scott Newsome Feb 22, 2021

Show notes

If you spend more than a minute on social media it can seem like there's more misinformation about the COVID-19 vaccines than there is legitimate, fact-based information. And I've heard it said that if you repeat a lie enough, it becomes the truth. So we're doing some major COVID-19 vaccine myth-busting with Dr. Scott Newsome. Dr. Newsome is an Associate Professor of Neurology and Director of Neurosciences Consultation and Infusion Center at Johns Hopkins Medicine. He also serves as the Co-Director of the Multiple Sclerosis Experimental Therapeutics Program at Johns Hopkins, and President of the Board of Governors of the Consortium of MS Centers. Dr. Newsome is also a member of the expert Task Force convened by the National MS Society to develop a COVID-19 vaccine guidance for people living with MS. We're also inviting you to participate in the RealTalk MS Listener Survey (and be entered into a drawing for a $100 Amazon Gift Card!). And we're giving you a heads-up to watch for a bonus episode of RealTalk MS later this week when we cover the ACTRIMS FORUM 2021. We have a lot to talk about! Are you ready for RealTalk MS??!

The RealTalk MS Listener Survey :22

Why we have to talk about the COVID-19 Vaccine Again! 1:07

Bonus Episode coming later this week -- ACTRIMS 2021 3:21

Dr. Scott Newsome debunks myths & rumors about the COVID-19 vaccines 4:05

Share this episode 32:25

Take the RealTalk MS Listener Survey 32:45

WalkMS 2021 is here! 33:12

SHARE THIS EPISODE OF REALTALK MS

Just copy this link & paste it into your text or email: https://realtalkms.com/182

ADD YOUR VOICE TO THE CONVERSATION

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

And don't forget to join us in the RealTalk MS Facebook group!

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

National MS Society COVID-19 Vaccine Guidance for People Living with MS

National MS Society: Timing MS Medications with COVID-19 mRNA Vaccines

WalkMS 2021

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

RealTalk MS Episode 182 Guests: Dr. Scott Newsome

Tags: MS, MultipleSclerosis, MSResearch, MSSociety, COVID19, RealTalkMS

Episode 181: Sex and MS with Dr. Linda Mona Feb 15, 2021

Show notes

A fulfilling sexual relationship with your partner can have a positive impact on your physical and mental health in a variety of ways. But studies suggest that about 80% of the people living with MS are affected by some kind of sexual dysfunction. We're devoting this entire episode of RealTalk MS to talking about sex and MS with my guest, Dr. Linda Mona. Dr. Mona is a licensed clinical psychologist and founder of Inclusivity Clinical Consulting Services. She's been recognized by the American Psychological Association, the Academy of Spinal Cord Injury Professions, Paralyzed Veterans of America, and the Society for the Scientific Study of Sexuality for her work focusing on people living with disabilities. We have a lot to talk about! Are you ready for RealTalk MS??!

Sex and MS with Dr. Linda Mona :18

Share this episode 28:42

Leave a rating and review for RealTalk MS 29:03

WalkMS 2021 is here! 30:14

SHARE THIS EPISODE OF REALTALK MS

Just copy this link & paste it into your text or email: https://realtalkms.com/181

ADD YOUR VOICE TO THE CONVERSATION

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

And don't forget to join us in the RealTalk MS Facebook group!

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