RealTalk MS

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RealTalk MS Episode 101 Hosted By: Jon Strum Guest: Professor Catherine Lubetzki

Tags: MS, MultipleSclerosis, mssociety, MSResearch, MSIntFederation, caregiving, EmbracingCarers, EMDSerono

Episode 100: Some of the Best Moments From Our Last 100 Episodes Jul 29, 2019

Show notes

Welcome to Episode 100! In this special episode, we're talking with Jodi Michele Cooley, the winner of our "Be Our Special Guest on Episode 100" contest! At the age of 7, Jodi became an MS caregiver. And at the age of 34, she received her own MS diagnosis. In one way or another, MS has almost always been a part of Jodi's life. And yet, she is the very definition of the word "resilience."

We're also re-visiting some of the best moments from some of our most popular interviews. You'll hear about research...you'll learn about MS advocacy...and you'll meet some amazing MS Warriors!

We have a lot to look back on. Are you ready for RealTalk MS??!

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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

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RealTalk MS Episode 100 Hosted By: Jon Strum Guest: Jodi Michele Cooley

Tags: MS, MultipleSclerosis, mssociety, MSResearch, RealTalkMS

Episode 99: Standing Up in MS with Professor Jenny Freeman Jul 23, 2019

Show notes

My guest is Jenny Freeman, Professor of Physiotherapy and Rehabilitation at the University of Plymouth, in the United Kingdom. Professor Freeman's research has appeared in more than 150 journals and publications. And she's the co-author of Multiple Sclerosis Care -- A Practical Manual, the reference book for all aspects of MS care. We're going to be talking with Professor Freeman about the just-published results of a clinical trial that I think will add a very effective component to physical rehabilitation for people living with progressive MS.

And if you believe that losing thousands of dollars and gaining no benefit is the worst thing that can go wrong when it comes to unproven stem cell treatments for MS...well, you're not even close. We're talking about how bad it can really get.

We'll also tell you about the new pilot research grants that the National MS Society just announced. You'll learn about a program that offers amazing outdoor adventure experiences to young adults who are living with MS. And did we also mention that these programs are free??? And you'll have an opportunity to participate in a really interesting clinical trial.

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

Standing Up in Multiple Sclerosis (SUMS)

___________ Unproven Stem Cell Treatments for MS -- The Worst Thing That Can Happen is A Lot Worse Than You Think It Is! 1:44

National MS Society Funds 10 High-Risk Pilot Research Grants 10:20

First Descents Expands Outdoor Adventure Experiences for Young Adults Living with MS 12:50

Your Opportunity to Participate in a Really Interesting Clinical Trial (No Drugs Involved) 14:35

Study Results Reveal Physical Rehabilitation That Improves the Lives of People Living with Progressive MS 16:09

My Interview with Professor Jenny Freeman 17:19

RealTalk MS Episode 100 Is Just 1 Week Away! How To Leave Us a Rating & Review 28:27

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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

STUDY: Assessment of a Home-Based Standing Frame Programme in People with Progressive MS (SUMS): A Pragmatic, Multi-Centre, Randomised, Controlled Trial and Cost-Effectiveness Analysis

National MS Society Announces New Pilot Research Projects Beginning Summer 2019

First Descents Program Inquiry

PARTICIPATE: Interventions to Improve Cognitive Functioning In Multiple Sclerosis

Website: The Ohio State University Clinical Neuroscience Lab

Phone: 614-292-9568

Email: ra@clinicalneurosciencelab.com

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RealTalk MS Episode 99 Hosted By: Jon Strum Guest: Professor Jenny Freeman

Tags: MS, MultipleSclerosis, mssociety, MSResearch, Stemcells, FirstDescents, RealTalkMS

Episode 98: Navigating Social Security Disability Benefits with Jamie Hall, Esq. Jul 17, 2019

Show notes

Applying for social security disability benefits can be difficult. It's a stressful and challenging process with an outcome that seems fraught with uncertainty. My guest, Jamie Hall, has represented social security disability claimants before administrative law judges and the Appeals Council in 24 different states. He is also a strong supporter of the National MS Society, where he's conducted numerous seminars on social security disability issues. Jamie is a member of the MS Society's 2010 Leadership Class, and he served as an editor of the National MS Society's SSDI guidebook. Today, we're talking with Jamie about how to take some of that stress and uncertainty out of the process.

We're also talking about the serious blow to your ability to access quality healthcare that occurred last week. We'll explain why the World Health Organization rejected the MS International Federation's application to add 3 MS disease-modifying therapies to the 2019 Essential Medicines List. There's news about the connection between your lifestyle choices and MS depression, and I'll share why I see MS depression as a potential matter of life or death.

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

The Law Office of Jamie R. Hall

___________ The Facts Behind the Attack on the Affordable Care Act 2:00

World Health Organization Rejects All MS Medications Submitted for the 2019 Essential Medicines List 10:04

Diagnosing MS With a "Breath Biopsy" 13:00

Australian Researchers Show a Link Between Lifestyle Choices and MS Depression 15:29

Why Treating MS Depression Matters So Much 19:47

My Interview with Jamie Hall 23:15

Have You Downloaded the RealTalk MS App? 40:11

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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

Applying for Disability Benefits: A Guidebook for People with MS and Their Healthcare Providers (PDF)

STUDY: Exhaled Breath Markers for Nonimaging and Noninvasive Measure for Detection of Multiple Sclerosis

STUDY: Modifiable Factors Associated with Depression and Anxiety in Multiple Sclerosis

STUDY: Association Between Suicide and Multiple Sclerosis: An Updated Meta-Analysis

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RealTalk MS Episode 98 Hosted By: Jon Strum Guest: Jamie Hall, Esq.

Tags: MS, MultipleSclerosis, MSResearch, AffordableCareAct, Depression, MSIntFederation, RealTalkMS

Episode 97: The Power of the Bike with Mike Zimits & Cat Tsigakos Jul 08, 2019

Show notes

My guests this week are 2 exceptional MS warriors, Mike Zimits and Cat Tsigakos. When Mike was diagnosed with MS, he decided he could best help himself by getting into shape, so he got on a bike. And then he convinced his friend's sister, Catherine, to get on a bike. Cat was serving as her brother's caregiver after he was diagnosed with progressive MS. So these 2 people, who had each been affected differently by MS, went from being biking newbies to avid cyclists -- even taking on several stages of the Tour de France. They also raised more than one million dollars for MS research while reminding the world that having an MS diagnosis doesn't mean that you're no longer entitled to have hopes, dreams, and goals.

We're also taking a look back at this year's World MS Day, and talking about some of the 400 events that raised awareness about MS in 79 countries. We'll tell you about the MS stem cell research that's about to begin on the International Space Station. We'll review the outcome of a specific rehab treatment that's been shown to improve hand and upper limb ability among people living with MS.

We'll let you know how you can participate in an important MS rehabilitation clinical trial. And we'll tell you about a research study that looked at the economic burden faced by people living with a minimal level of MS disability. The results might surprise you!

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

Join Mike & Cat on Team MSAA Bike Rides

___________ World MS Day Recap -- Over 400 Events in 79 Countries 1:16

Stem Cells Travel to Outer Space for MS Research 3:52

Task-Oriented Upper Limb Rehab Program Delivers Results for People Living with MS 7:11

You Can Participate in the STEP For MS Study 9:53

Low MS Disability = A High Level of Economic Burden 13:14

My Interview with Mike Zimits & Cat Tsigakos 18:15

Have You Subscribed to RealTalk MS? 33:11

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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

The Effects of Microgravity on Microglia 3-Dimensional Models of Parkinson's Disease and Multiple Sclerosis

Intensity-Dependent Clinical Effects of an Individualized Technology-Supported Task-Oriented Upper Limb Training Program in Multiple Sclerosis: A Pilot Randomized Controlled Trial

STEP for MS Clinical Trial Eligibility Criteria & Trial Site Contact Information

Economic Burden of Multiple Sclerosis in a Population with Low Physical Disability

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RealTalk MS Episode 97 Hosted By: Jon Strum Guest: Mike Zimits & Catherine Tsigakos

Tags: MS, MultipleSclerosis, MSResearch, MSAssociation, RealTalkMS

Episode 96: The TREAT-MS Clinical Trial (and why it's so important) with Dr. Ellen Mowry Jul 02, 2019

Show notes

Do you ever wonder how or why your neurologist recommends one disease-modifying therapy instead of another? For some people, their first disease-modifying therapy is a mild drug with few side effects. For others, their first disease-modifying therapy might be a more high-powered drug that carries the risk of more possible side effects. But how do neurologists really know when it's appropriate to use one specific disease-modifying therapy or even when it's appropriate to switch to another?

My guest is Dr. Ellen Mowry, Associate Professor of Neurology and the Director of the MS Experimental Therapeutics Program at Johns Hopkins University. Dr. Mowry has devoted her entire career to MS research, and her past research has led to breakthroughs in our understanding of MS. Now, Dr. Mowry is the co-principal investigator of a nationwide research study whose outcome could have an impact on the treatment strategy for everyone diagnosed with MS.

We're also talking about the effectiveness of the Wahls Diet in managing MS fatigue, we'll update you on the permanent injunction issued by a U.S. Federal Court against a company that operates shady stem cell clinics, and you'll learn everything you really need to know about Vitamin D and MS.

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

TREAT-MS on clinicaltrials.gov

___________ Like to Read? Now You Can Download a Transcript of Every New Episode of RealTalk MS :26

The Wahls Diet (Plus Lots of Other Interventions) May Reduce MS Fatigue 2:17

U.S. District Court Judge Prevents U.S. Stem Cell From Extracting Stem Cells From Your Fat And Claiming That It Will Be Of Any Benefit To You 7:22

My Interview with Dr. Ellen Mowry 13:46

Have You Subscribed to RealTalk MS? 33:02

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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

STUDY: Lipid Profile is Associated with Decreased Fatigue in Individuals with Progressive Multiple Sclerosis Following a Diet-Based Intervention: Results from a Pilot Study

FDA Statement on Stem Cell Clinic Permanent Injunction and FDA's Ongoing Efforts to Protect Patients from Risks of Unapproved Products

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RealTalk MS Episode 96 Hosted By: Jon Strum Guest: Dr. Ellen Mowry

Tags: MS, MultipleSclerosis, MSResearch, HopkinsMedicine, terrywahls, US_FDA, RealTalkMS

Episode 95: Ambiguous Loss with Dr. Pauline Boss Jun 25, 2019

Show notes

How do you adjust every aspect of your relationship when the partner you've known seems to be vanishing right before your eyes, yet they're still very much there? If you're a caregiver for someone with progressive MS, or any chronic illness, it's very likely that you're living with the trauma of ambiguous loss.

My guest is Dr. Pauline Boss, who not only coined the phrase ambiguous loss, but has spent her career teaching university students, practicing as a clinician, and training family therapists, psychologists, and counselors around the world to help individuals and families suffering from the trauma of ambiguous loss and this form of grief that doesn't end.

We're also talking about the research team that successfully duplicated a patient's blood brain barrier...on a chip! A breakthrough that could streamline MS research, make drug screening easier, and help make personalized MS treatment a reality. We'll tell you about a study that evaluated an online version of a successful MS fall prevention program. You'll find out how you can be a part of people-powered MS research. And we'll tell you how MS-FOCUS and Lyft have teamed up to get you to your next MS care appointment.

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

Ambiguous Loss, Pioneered by Dr. Pauline Boss

___________ What is Ambiguous Loss...and Why Is It So Important? :22

Scientists Create Blood Brain Barrier on a Chip 4:32

The Free From Falls Online Program Is Evaluated 6:47

MS-FOCUS & Lyft Can Get You To Your Next Appointment 10:30

My Interview with Dr. Pauline Boss 13:28

Why You Might Want to Download the RealTalk MS App 31:55

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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

Books by Dr. Pauline Boss

Human iPSC-Derived Blood-Brain Barrier Chips Enable Disease Modeling and Personalized Medicine Applications

Evaluation of a Web-Based Fall Prevention Program Among People with Multiple Sclerosis

iConquer MS

MS-FOCUS Transportation Assistance Grant

STUDY: Association of Stress-Related Disorders With Subsequent Autoimmune Disease

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RealTalk MS Episode 95 Hosted By: Jon Strum Guest: Dr. Pauline Boss

Tags: MS, MultipleSclerosis, MSResearch, caregiving, iConquerMS, MS_FOCUS, Lyft, RealTalkMS

Episode 94: Shady Stem Cell Clinics And Their Shady "Clinical Trials" & An MS Rehab Study with Dr. Laura Rice Jun 18, 2019

Show notes

This week, we're talking about shady stem cell clinics and their shady clinical trials. We'll tell you about a study that makes a connection between stress-related disorders and autoimmune disease, and a research team that may have identified the possible genetic causes of MS.

My guest is Dr. Laura Rice, an expert in rehabilitation science and technology at the University of Illinois, Urbana-Champagne. Dr. Rice's focus is on maximizing the quality of life and community participation among wheelchair users. We're talking with Dr. Rice about her new study, designed to prevent falls among wheelchair users.

We'll also tell you about the international team of scientists who succeeded in mapping human microglia, and were surprised by what they found. We'll get you up to speed on the Credit for Caring Act, a bipartisan bill that's been designed to give family caregivers a financial boost. And we'll tell you where to register for the MS Association of America's The Many Faces of MS: Exploring Diversity & Differences webinar, being hosted by Dr. Mitzi Joi Williams.

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

___________ Shady Stem Cell Clinics & Their Shady "Clinical Trials" 1:01

Seeing MS From the Inside Out documentary Wins an Award 6:42

Do Stress-Related Disorders Cause Autoimmune Disease? 8:27

A Study Identifies Possible Genetic Causes of MS 11:01

Scientists Successfully Map Microglia & See Differences in People Living with MS 13:00

The Bipartisan Credit for Caring Act Introduced in Both Houses of Congress 15:28

The Many Faces of MS: Exploring Diversity & Differences 17:20

My Interview with Dr. Laura Rice 19:35

Join the RealTalk MS Conversation 27:10

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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

ClinicalTrials.gov

STUDY: Exome Sequencing in Multiple Sclerosis Families Identifies 12 Candidate Genes and Nominates Biological Pathways for the Genesis of Disease

STUDY: Spacial and Temporal Heterogeneity of Mouse and Human Microglia at Single-Cell Resolution

The Credit for Caring Act

Email Dr. Laura Rice

FDA Announces Federal Court Decision Against US Stem Cell Clinics

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RealTalk MS Episode 94 Hosted By: Jon Strum Guest: Dr. Laura Rice

Tags: MS, MultipleSclerosis, MSResearch, Stemcells, caregiving, RealTalkMS

Episode 93: Stem Cells Are In the News & A Research Update from Dr. Karen Lee, V.P. of Research at the MS Society of Canada Jun 11, 2019

Show notes

Stem Cells are in the news, and we're talking about the U.S. District Court decision that will impact hundreds of stem cell clinics in the United States and the FDA's ability to regulate them. We'll also share two breakthroughs in stem cell research that will likely impact the future of stem cell therapy.

My guest on the podcast is Dr. Karen Lee, the Vice-President of Research at the MS Society of Canada. Canada has one of the highest rates of MS in the world, and the MS Society of Canada has responded by launching research initiatives on several fronts.

Dr. Lee is going to give us an update on some of the research that the MS Society of Canada is involved in, including a major multi-year study that's focused on answering the questions, how and why does MS progress?

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

___________ FDA Wins in Federal Court Against For-Profit Stem Cell Clinic Operator 2:15

Harvard Research Team Shows That Stem Cells Can Be Genetically Edited In The Body 7:38

University of California Irvine Uses Nanotech Treatment From Stem Cells to Reverse MS in Mice 10:11

AxoSim Licenses Mini-Brain Technology Developed at Johns Hopkins 12:26

My Interview with Dr. Karen Lee 15:09

Join the RealTalk MS Conversation 26:09

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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

In Situ Modification of Tissue Stem and Progenitor Cell Genomes

Stem Cell-Derived Exomes as Nanotherapeutics for Autoimmune and Neurodegenerative Disorders

CanProCo Study Information & Registration