RealTalk MS

National MS Society COVID-19 Response Fund

Exercise and Lifestyle Physical Activity Recommendations for People with Multiple Sclerosis Throughout the Disease Course

The Experience of African-American Women with Multiple Sclerosis

National MS Society's Ask An MS Expert Video Replay

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

RealTalk MS Episode 142 Hosted By: Jon Strum Guests: Dr. Bruce Bebo

Tags: MS, MultipleSclerosis, MSResearch, MSActivist, MSSociety, Interferon, Betaseron, Ocrevus, Coronavirus, COVID19, RealTalkMS

Episode 141: How COVID-19 Affects People With MS with Dr. Robert Shin May 11, 2020

Show notes

For the past 8 weeks, we've been talking about COVID-19 and MS, but there hasn't been any real data on the effect of COVID-19 on people living with MS. That's finally changed, and we're beginning to see some limited data here in the U.S., as well as data coming out of Italy.

My guest is Dr. Robert Shin and we're talking about what the experts are learning from this newly-published data about the effect of COVID-19 on MS. We'll also get into whether someone getting Ocrevus infusions today should be worrying about the effectiveness of a COVID-19 vaccine. We'll talk about the things that people living with MS should be thinking about as our local communities begin to re-open for business. And we'll get into how the COVID-19 pandemic might affect MS care in the future.

We're also talking about the new COVID-19 Emergency Food Assistance Program for people living with MS, cancer, and rheumatoid arthritis.

We'll tell you about the COVID-19 at-home test kit that received FDA approval last week. It only requires a simple saliva sample, making it a much more user-friendly test.

And you'll hear about the MS disease-modifying therapy that may actually help people recover from COVID-19 faster.

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

COVID-19 & Nursing Homes (...and why I care!) :21

At-Home COVID-19 Saliva Test Receives FDA Approval 4:43

COVID-19 Emergency Food Assistance Program Available for People Living with MS 6:09

Study Shows MS Medication May be Helpful in Speeding Up Recovery from COVID-19 8:11

My Interview with Dr. Robert Shin 11:13

Share this episode 30:12

The National MS Society COVID-19 Response Fund 30:43

SHARE THIS EPISODE OF REALTALK MS

Just copy this link & paste it into your text or email: https://realtalkms.com/141

ADD YOUR VOICE TO THE CONVERSATION

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

And don't forget to join us on 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 Response Fund

COVID-19 Emergency Food Assistance Program Application

Triple Combination of Interferon Beta 1b, Lopinavir-Ritonavir, and Ribavirin in the Treatment of Patients Admitted to Hospital with COVID-19: An Open-Label, Randomised, Phase 2 Trial

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

RealTalk MS Episode 141 Hosted By: Jon Strum Guests: Dr. Robert Shin

Tags: MS, MultipleSclerosis, MSResearch, MSActivist, MSSociety, Interferon, Betaseron, Ocrevus, Coronavirus, COVID19, RealTalkMS

Episode 140: Vitamins, Nutrition & Stress Reduction -- Managing MS Symptoms with Dr. Elizabeth Crabtree May 04, 2020

Show notes

My guest is Dr. Elizabeth Crabtree, the Medical Director at the Tulane Center for Comprehensive MS Care. Dr. Crabtree is passionate about creating meaningful care models for patients living with MS. And this week, we're taking a deep dive with Dr. Crabtree into the impact of nutrition, diet, and vitamins in managing MS symptoms. We're also going to get into the impact of stress on MS, and Dr. Crabtree will even share some tips on how to best manage that stress.

We're also talking about a new mouse study that suggests starting treatment with Rituximab in people who are at risk of developing MS or in MS patients before they develop any motor symptoms may be a way to avoid inflammation and myelin loss, and actually prevent MS from further developing.

We'll tell you about a new nanosensor that can diagnose MS with 97% accuracy before symptoms even develop.

We'll share new data that shows Mayzent slowed physical disability progression and provided cognitive benefits to people with secondary progressive MS. And you'll hear about the study that shows that early use of Ocrevus may lower the need for a walking aid by 49% over 6 years.

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

A Fun Fact About Podcasts (...and a Thank You!) :23

Mouse Study Suggests Early Treatment with Rituximab May Prevent MS Symptoms From Developing 2:58

Nanosensor Can Diagnose Early Stage MS Before Symptoms Develop 5:18

New Data Shows Mayzent Slows Disability Progression & Provides Cognitive Benefits to People with Secondary Progressive MS 8:03

Study Shows Early Use of Ocrevus May Lower the Need for Walking Aid by 49% Over 6 Years 10:42

My Interview with Dr. Elizabeth Crabtree 13:33

Share this episode 28:50

The National MS Society COVID-19 Response Fund 29:25

SHARE THIS EPISODE OF REALTALK MS

Just copy this link & paste it into your text or email: https://realtalkms.com/140

ADD YOUR VOICE TO THE CONVERSATION

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

And don't forget to join us on 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's Ask An MS Expert Video Replay

National MS Society COVID-19 Response Fund

Rituximab Prevents the Development of Experimental Autoimmune Encephalomyelitis (EAE): Comparison with Prophylactic, Therapeutic, or Combinational Regimens

Nanoimmunosensor Based on Atomic Force Spectroscopy to Detect Anti-Myelin Basic Protein Related to Early-Stage Multiple Sclerosis

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

RealTalk MS Episode 140 Hosted By: Jon Strum Guests: Dr. Elizabeth Crabtree

Tags: MS, MultipleSclerosis, MSResearch, MSActivist, MSSociety, Rituximab, Ocrevus, Coronavirus, COVID19, RealTalkMS

Episode 139: She's Living with MS and Diagnosed with COVID-19 with Nancy Guerrera Apr 27, 2020

Show notes

This week, we're going to hear from 3 experts on very different aspects of COVID-19 and MS.

Kathy Costello, the Associate Vice-President of Healthcare Access for the National Multiple Sclerosis Society is going to give us our weekly update on COVID-19 and MS.

Mandy Rohrig, a physical therapist who specializes in the rehabilitation of people with Multiple Sclerosis and Parkinson's disease. is going to talk to us about exercises that you can do at home to stay healthy.

And then you'll meet Nancy Guerrera. Nancy is a registered nurse who was diagnosed with MS in 2007. And last month, Nancy was diagnosed with COVID-19. We'll hear exactly what it's been like for someone living with MS to contract COVID-19 after being on Ocrevus for the past 3 years.

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

A Social Media Post That Got It Wrong :22

COVID-19 & MS Update with Kathy Costello 4:52

Exercising at Home to Stay Healthy with Mandy Rohrig 14:12

Living with MS & Diagnosed with COVID-19: My Interview with Nancy Guerrera 23:32

Share this episode 38:09

Donate to Walk-MS 38:39

SHARE THIS EPISODE OF REALTALK MS

Just copy this link & paste it into your text or email: https://realtalkms.com/139

ADD YOUR VOICE TO THE CONVERSATION

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

And don't forget to join us on 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's Ask An MS Expert Video Replay

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

RealTalk MS Episode 139 Hosted By: Jon Strum Guests: Kathy Costello, Mandy Rohrig, and Nancy Guerrera

Tags: MS, MultipleSclerosis, MSResearch, MSActivist, MSSociety, Ocrevus, Coronavirus, COVID19, RealTalkMS

Episode 138: COVID-19 & MS In Minority Populations with Dr. Mitzi Joi Williams Apr 20, 2020

Show notes

This week, and for the foreseeable future, we're committed to sharing the most updated and reliable information on COVID-19 and MS.

Returning as my guest on the podcast is Dr. Mitzi Joi Williams. Dr. Williams is a Board-Certified Neurologist and Fellowship trained Multiple Sclerosis Specialist who is passionate about educating and empowering people affected by MS to understand the disease process and the goals of treatment. She is a sought-after consultant, speaker, researcher, and author with expertise in understanding MS in underserved and ethnic minority populations.

Dr. Williams is giving us our weekly update on what we're learning about COVID-19 & MS. We're talking about COVID-19 and starting, stopping, or pausing disease-modifying therapies. And we're taking a closer at how COVID-19 is impacting minority populations and how MS itself impacts minority populations differently.

We'll tell you everything you need to know about COVID-19 tests, COVID-19 antibody tests, and those shady COVID-19 at-home test kits.

We'll also tell you about how some MS clinical trials are being paused, and what that means when it comes to the availability of new disease-modifying therapies.

And we'll tell you about a study that shows that ethnicity is not a factor in predicting cognitive impairment in early MS. But the study may have inadvertently highlighted an unfortunate reality in our society.

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

The Best Email Ever :35

Everything You Need to Know About COVID-19 Tests 3:36

Atara Biotherapeutics Pauses ATA 188 Clinical Trial for PPMS and SPMS 8:34

Study Shows Cognitive Impairment in Early MS Not Linked to Ethnicity 11:22

My Interview with Dr. Mitzi Joi Williams 15:50

Share this episode 31:11

Donate to Walk-MS 21:43

SHARE THIS EPISODE OF REALTALK MS

Just copy this link & paste it into your text or email: https://realtalkms.com/138

ADD YOUR VOICE TO THE CONVERSATION

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

And don't forget to join us on 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's Ask An MS Expert Video Replay

Race, Ethnicity, and Cognition in Persons Newly Diagnosed with Multiple Sclerosis

The RealTalk MS Facebook Group

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

RealTalk MS Episode 138 Hosted By: Jon Strum Guests: Dr. Mitzi Joi Williams

Tags: MS, MultipleSclerosis, MSResearch, MSActivist, MSSociety, Ocrevus, Coronavirus, COVID19, RealTalkMS

Episode 137: COVID-19 & MS Update with Dr. Tanuja Chitnis Apr 13, 2020

Show notes

This week, and for the foreseeable future, we're committed to sharing the most updated and reliable information on COVID-19 and MS.

Joining me as my guest is Dr. Tanuja Chitnis, a board-certified neurologist specializing in multiple sclerosis, with a dual appointment at the Brigham and Women's Hospital and Massachusetts General Hospital in Boston.

Dr. Chitnis is a Professor of Neurology at Harvard Medical School and a Senior Scientist at the Ann Romney Center for Neurologic Diseases at Brigham & Women's Hospital, where Dr. Chitnis created the Translational Neuroimmunology Research Center, which is focused on bringing bench discoveries to clinical trials for multiple sclerosis and related diseases.

Dr. Chitnis serves on the advisory boards and steering committees of several MS-related organizations, including the National MS Society's Medical Advisory Committee, and she's written more than 200 publications and reviews related to multiple sclerosis.

We're discussing who, among everyone living with MS, is immunocompromised and who isn't -- and why that matters when it comes to being susceptible to COVID-19. We're talking about whether pandemic-related stress can lead to an MS relapse. And we'll look at the outcomes of MS patients who have already contracted COVID-19.

We'll remind you about the value of a fact, and why credible information from reliable sources is so critical right now. And we'll connect you to the video replay of last Friday's Ask An MS Expert webinar. (I hope you already consider these weekly webinars with leading MS experts answering your questions to be "can't miss" viewing.)

We'll also tell you about a new North American MS/COVID-19 patient registry for healthcare professionals that will help define best treatment strategies and best patient outcomes for people living with MS who contract COVID-19 in the future.

And now that we all have a bit more time on our hands during the day, we have some suggestions for how you can constructively spend some of that time, including:

Taking the University of Washington MS Rehabilitation & Wellness Research Center's online survey
Taking the Massachusettes General Hospital online survey
Getting involved in iConquer MS patient-powered research
...and, if you happen to be using an iPhone, even giving RealTalk MS a rating & review!

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

Check out Episode 4 of the National MS Society's Ask an MS Expert Webinar Series :56

The Value of Facts in a Time of Uncertainty 2:36

UW MS Rehabilitation & Wellness Research Center COVID-19 Survey 4:54

iConquer MS COVID-19 Survey 5:35

National MS Society & Consortium of Multiple Sclerosis Centers Launch COViMS North American Registry 6:41

Have a Minute? Get In Touch! 8:36

My Interview with Dr. Tanuja Chitnis 11:03

Share this episode 20:14

Donate to Walk-MS 20:45

SHARE THIS EPISODE OF REALTALK MS

Just copy this link & paste it into your text or email: https://realtalkms.com/137

ADD YOUR VOICE TO THE CONVERSATION

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

And don't forget to join us on 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's Ask An MS Expert Video Replay

Federal Coronavirus Response and Economic Stimulus Information

University of Washington COVID-19 Online Survey

iConquer MS COVID-19 Online Survey

The RealTalk MS Facebook Group

National MS Society's Ask An MS Expert Video Replay

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

RealTalk MS Episode 137 Hosted By: Jon Strum Guests: Dr. Tanuja Chitnis

Tags: MS, MultipleSclerosis, MSResearch, MSActivist, MSSociety, Ocrevus, Coronavirus, COVID19, RealTalkMS

Episode 135: Coping With the Uncertainty of MS and COVID-19 with Dr. Kevin Alschuler Mar 30, 2020

Show notes

This week, and for the foreseeable future, we're committed to sharing the most updated and reliable information on COVID-19 and MS.

Joining me as my guest is Dr. Kevin Alschuler, a Rehabilitation Psychologist with appointments as an Associate Professor in the Department of Rehabilitation Medicine and Adjunct Associate Professor in the Department of Neurology at the University of Washington. Dr. Alschuler also serves as the Psychology Director for the UW Medicine Multiple Sclerosis Center.

Dr. Alschuler works clinically with patients with Multiple Sclerosis and other chronic medical conditions. And his primary role is to help patients develop effective strategies for managing the physical and emotional symptoms that present with their medical condition.

Dr. Alschuler is also an active researcher, and his primary areas of focus include chronic pain, adjustment to medical condition, and the multidisciplinary treatment of medical conditions, currently with an emphasis on multiple sclerosis.

We're talking with Dr. Alschuler about how people living with MS can build their personal resilience in the face of the COVID-19 pandemic. He'll share some specific steps that you can start taking today that will help reduce the stress that you're feeling and empower you to come through the other side of these uncertain times with inner strength and greater calm.

We'll connect you to the video replay of last Friday's Ask An MS Expert webinar. I hope you consider these weekly webinars with leading MS experts answering your questions to be "can't miss" viewing.

We're also talking about the new RealTalk MS Facebook group. We'll tell you which states have re-opened enrollment for health insurance under the Affordable Care Act. And you'll find out how and where to apply online for the MS Foundation's Emergency Assistance Grants.

You'll learn about the new MS disease-modifying therapy that the FDA approved last week -- but it won't be available for quite a while (we'll tell you why). We'll share some new online resources, including online information and support resources for MS caregivers. And speaking of MS caregivers, we'll tell you about an online survey for MS caregivers that we hope you (or a family caregiver) will take.

We have a lot to talk about! Are you ready for RealTalk MS??! ___________ Check out Episode 2 of the National MS Society's Ask an MS Expert Webinar Series :36 Announcing the RealTalk MS Facebook Group! 4:50 How about a quick favor? 5:26

Several states re-open Affordable Care Act enrollment 6:12

The MS Foundation offers Emergency Assistance Grants 7:43

FDA Approves Zeposia 8:49

HealthCentral launches its new Multiple Sclerosis Hub 10:21

COVID-19 Online Resources for MS Caregivers 10:48

Please take this online survey for MS Caregivers 11:14

My Interview with Dr. Kevin Alschuler 13:17

Share this Episode 28:41

Reminder...Please Donate to Walk-MS 29:14

___________

SHARE THIS EPISODE OF REALTALK MS

Just copy this link & paste it into your text or email: https://realtalkms.com/135

___________

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

___________

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

The RealTalk MS Continuing the Conversation Facebook Group

Give RealTalk MS a Rating & Review MS Foundation Emergency Assistance Grant Application

HealthCentral's Multiple Sclerosis Hub

COVID-19 Resources for Caregivers

Accelerated Cure Project MS Caregiver Survey

National MS Society's Ask an MS Expert Webinar: What You Need to Know About MS & COVID-19 with Dr. Aaron Miller and Kathy Costello

___________

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

RealTalk MS Episode 135 Hosted By: Jon Strum Guests: Dr. Kevin Altschuler

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

Episode 134: COVID-19 and MS Updates with Dr. Aaron Miller Mar 24, 2020

Show notes

This week, and for the foreseeable future, we're committed to sharing the most updated reliable information on COVID-19 and MS.

Joining me as my guest is Dr. Aaron Miller. Dr. Miller is the Chair of the Society's National Medical Advisory Committee and is also the Medical Director of the Corinne Goldsmith Dickinson Center for Multiple Sclerosis and a Professor of Neurology at the Icahn School of Medicine at Mount Sinai. He also serves as Vice-Chair for Education in the Department of Neurology. Dr. Miller was the first Chairman of the multiple sclerosis section of the American Academy of Neurology and he's participated in numerous clinical trials of new MS treatments.

We're talking with Dr. Miller about the National MS Society's guidance for MS disease-modifying therapies and the coronavirus (COVID-19), whether you should hold off starting a new disease-modifying therapy, whether you have to take additional precautions surrounding the other medications you might be using to manage MS symptoms, whether COVID-19 can cause an MS relapse, and more.

We're also talking about the MS Society's new Ask An MS Expert webinar series that we're hosting. We'll tell you about the Families First Coronavirus Response Act that was signed into law last week, and how it might affect you and your family.

We're sharing news about a study that shows that women require fewer MS-related hospitalizations as they age. We'll tell you how virtual reality can reduce the risk of falls by predicting balance issues among people with MS before they, themselves, become aware that they might have balance issues. And Janssen, a division of Johnson & Johnson, has applied for FDA approval of a disease-modifying therapy for relapsing forms of MS.

We have a lot to talk about! Are you ready for RealTalk MS??! ___________ Welcome to the New Normal :18 Introducing the National MS Society's Ask an MS Expert Webinar Series :32 Make sure you're getting your COVID-19 info from credible sources 3:47

COVID-19 on the National MS Society's Website 4:58

The Families First Coronavirus Response Act Signed Into Law 5:47

Study Finds Fewer MS-Related Hospitalizations As Women Age 7:46

Study Uses Virtual Reality To Detect Balance Issues In MS 10:59

Janssen Submits Application for FDA Approval of Ponesimod 13:47

My Interview with Dr. Aaron Miller 14:51

Share this Episode 24:32

Reminder...Please Donate to Walk-MS 25:05

___________

SHARE THIS EPISODE OF REALTALK MS

Just copy this link & paste it into your text or email: https://realtalkms.com/134

___________

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

___________

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

MS Disease-Modifying Treatment Guidelines for Coronavirus (COVID-19)

Predictors of Hospitalization in a Canadian MS Population: A Matched Cohort Study

Can Optical Flow Perturbations Detect Walking Balance Impairment in People with Multiple Sclerosis?

___________

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

RealTalk MS Episode 134 Hosted By: Jon Strum Guests: Dr. Aaron Miller

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

Episode 133: The Coronavirus (COVID-19) and MS Disease-Modifying Therapies Mar 17, 2020

Show notes

The National MS Society's National Medical Advisory Committee has issued its recommendations for MS disease-modifying therapies and the coronavirus (COVID-19), and we're sharing them in this episode.

You'll also hear about a new disease-modifying therapy that's about to receive FDA approval. We'll tell you about a clinical trial for a potential disease-modifying therapy for progressive MS that fell short of achieving its goals. And you'll hear about study results that indicate there are still a lot of people living with MS who aren't acting in their own best interest.

My guest this week is Dawnia Baynes. Besides being an MS Activist, Dawnia facilitates a very special MS support group, and last month, the Southern-California Nevada Chapter of the National MS Society named Dawnia their Inspirational Person of the Year.

We have a lot to talk about! Are you ready for RealTalk MS??! ___________ Make sure you're getting your COVID-19 info from credible sources :39

The Coronavirus (COVID-19) and MS Disease-Modifying Therapies 2:41

Ozanimod scheduled for FDA Approval this Month 2:09

High-Dose Biotin For Progressive MS Fails to Improve Disability 7:41

Disease-Modifying Therapy Non-Compliance Among People Living with MS 9:07

My Interview with Dawnia Baynes 12:05

Share this Episode 24:26

Reminder...Please Donate to Walk-MS 24:46

___________

SHARE THIS EPISODE OF REALTALK MS

Just copy this link & paste it into your text or email: https://realtalkms.com/133

___________

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

___________

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

MS Disease-Modifying Treatment Guidelines for Coronavirus (COVID-19)

Non-Compliance With Disease-Modifying Therapies in Patients With Multiple Sclerosis: A Qualitative Analysis

Support Group for Teens Living with MS