Episode 408: Explaining Your MS to All Those Well-Meaning Family Members and Friends Who Get It Wrong with Kris Inman
Release Date: 06/23/2025
Special Episode: Participating in MS Research with Chiquita Shepard-Knight and Earl Sneed
RealTalk MS
Welcome to a RealTalk MS special series on MS clinical trials. This special series is made possible through a generous grant from Sanofi. In today's episode, you'll meet two participants from the TEAMS Study, a research study at the University of Illinois Chicago's UI Health, in conjunction with the University of Alabama Birmingham School of Public Health. TEAAMS is an acronym for Targeted Exercise for African-Americans with Multiple Sclerosis. And the study's research team analyzed the effects of a remotely delivered, racially tailored exercise training program among African Americans with MS...
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Episode 429: Caring for Your Partner with MS While Holding Down a Full-Time Job with Diana Grazio
RealTalk MS
Being a caregiver for a loved one with MS isn't an easy job. And, while it may consume hours of your time, often, it's not your only job. Many caregivers are the only family members bringing in an income. So, in addition to their caregiving responsibilities, they may also be facing the responsibilities that go along with holding down a full-time job. This week, Diana Grazio joins me to discuss how she balances her roles and responsibilities as her partner's caregiver while holding down a full-time job. You have online opportunities tomorrow! Participate in the National MS...
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Episode 428: The Effects of Smoking, Consuming Alcohol, and Consuming Caffeine on Your MS with Dr. Barbara Giesser
RealTalk MS
As researchers continue to learn about MS, it becomes clear that you can change the trajectory of your MS journey and improve your quality of life by making smart lifestyle choices. Quitting smoking and watching your alcohol and caffeine consumption are smart choices for everyone, and they can pay especially big dividends if you're living with MS. This week, Dr. Barbara Giesser discusses how smoking, consuming alcohol, and consuming caffeine can impact your MS. We're also sharing the details about the Black MS Experience Summit taking place on November 12th, and the Hispanic LatinX MS...
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Episode 427: Science-Based Vaccine Guidance for People Living with MS with Dr. Lisa Doggett
RealTalk MS
When you're living with a chronic condition like MS, you want to be sure you're doing everything you can to preserve and promote good health. And, right now, you may be feeling confused about whether you should be getting vaccinated, and which vaccines are safe. It's understandable. Unfortunately, there's a lot of confusing information about vaccines and vaccinations floating around out there. This week, Dr. Lisa Doggett helps us get past all the unnecessary noise and hysteria and reviews the science-based vaccine recommendations for people living with MS. We're also talking about...
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Episode 426: Fighting Her Way Through the Health Insurance Maze with Cassandra Ashby
RealTalk MS
Some disease-modifying therapies can change the trajectory of your MS journey. But gaining access to those medications isn't always as easy or straightforward as it should be. In the United States, insurance companies are most often the gatekeepers to prescription medications. This week, Cassandra Ashby shares a story that many of you may already be too familiar with, as she takes us through her family's long, hard, and confusing struggle to get the DMT that her newly-diagnosed daughter's neurologist prescribed. I We're also talking about the game-changing results of a study that...
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Episode 425: The ECTRIMS 2025 Deep Dive with Dr. Bruce Bebo
RealTalk MS
Just about a month ago, 9,600 researchers, clinicians, and representatives from patient advocacy organizations gathered in Barcelona for the European Committee on Treatment and Research in MS annual scientific congress, better known as ECTRIMS, the largest MS research conference in the world. Now that he's had an opportunity to review his notes and digest all of the science presented at ECTRIMS 2025, Dr. Bruce Bebo, the National MS Society's Executive Vice-President of Research, returns to the podcast to take us on a deep dive covering some of the most important research presented this year....
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Episode 424: I'm a Participant in a Clinical Trial for CAR-T Cell Therapy and MS with Jan Janisch-Hanzlik
RealTalk MS
Jan Janisch-Hanzlik lives with MS and is a participant in one of the clinical trials evaluating the safety and efficacy of CAR-T cell therapy for MS. Jan is the first person in the world to receive this one-and-done treatment, and this week, she's joining me to share her experience participating in the clinical trial. But you'll be especially interested in hearing how CAR-T cell therapy has impacted Jan's MS. Open enrollment for people with Medicare and for those who get their health insurance through the ACA healthcare.gov Marketplace begins this week, and we're talking about some of the...
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Special Episode: The Risks and Rewards of Participating in Clinical Trials with Dr. Kathy Zackowski and Mimi Brown
RealTalk MS
Welcome to a RealTalk MS special series on MS clinical trials. This special series is made possible through a generous grant from Sanofi. In today's episode, we're exploring the risks and rewards of participating in a clinical trial with Dr. Kathy Zackowski and Mimi Brown. Dr. Zackowski is the Associate Vice President of Research at the National MS Society, and she's going to offer an overview of the risks and benefits that you'll want to weigh in considering participating in a clinical trial. Mimi Brown lives with primary progressive MS, and Mimi is...
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Episode 423: Understanding Infections and MS with Dr. Robert Fox
RealTalk MS
From the earliest days of the COVID-19 pandemic, people living with MS have been justifiably concerned about how a COVID-19 infection might impact their MS. As the new "Stratus" strain of COVID-19 is currently surging in the United States, research is providing answers we didn't have five years ago. Dr. Robert Fox, the Managing Director of the NARCOMS Patient Registry, joins me to discuss how COVID-19 infections and other infections impact people with MS. As ECTRIMS, the world's largest MS research conference, approached, many attendees anticipated the FDA's decision on whether to approve...
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Episode 422: From ECTRIMS 2025 with Dr. Bruce Bebo and Kristine Werner Ozug
RealTalk MS
Last week, over 9600 MS researchers and clinicians gathered in Barcelona for the European Committee for Treatment and Research in Multiple Sclerosis annual scientific congress -- ECTRIMS 2025. Minutes after the conference adjourned, in what has become an annual tradition, Dr. Bruce Bebo, the Executive Vice President of Research at the National MS Society, joined me to share his initial thoughts on the science presented at the meeting. Then, Kristine Werner Ozug, a member of the RealTalk MS team who lives with MS, joined me to share her perspective on three non-stop days of...
info_outlineHave you experienced those familiar feelings of frustration when the people closest to you don't seem to get your MS? Do you find yourself explaining and re-explaining things to well-meaning friends, co-workers, and even family members?
We're also sharing research results that show that someone's age at the time they experience the first symptoms of MS can determine whether they experience a better physical or mental health-related quality of life.
We'll tell you about a report issued jointly by the MS Society in the UK and the Work Foundation at Lancaster University that details specific challenges people with MS face in the workplace.
We'll give you the details about the National MS Society's Fast Forward investment in Neurogenesis, a biotech company developing a proprietary stem cell therapy designed to treat progressive MS.
And we'll share news about the Portable Neuromodulation Stimulator (PoNS), a device that's used in combination with physical therapy to reduce walking problems for people with MS.
We have a lot to talk about! Are you ready for RealTalk MS??!
This Week: The frustration you might feel when some of the people closest to you don't really seem to get your MS. :22
Study results show that the age of MS onset can be predictive of physical and mental health-related quality of life 1:27
A report details challenges faced in the workplace by people living with MS in the UK 4:28
The MS Society's Fast Forward program has made an investment in Neurogenesis, a biotech company developing a proprietary cell therapy designed to treat progressive MS 8:00
Aetna Healthcare has become the third major private insurer to offer reimbursement for the PoNS device 11:00
Kris Inman discusses the finer points of being an MS care partner 14:17
Share this episode 29:13
Have you downloaded the free RealTalk MS app? 29:32
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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
Become an MS Activist
https://nationalmssociety.org/advocacy
Act Now! Contact Your Senators About Medicaid and Health Coverage
https://nmss.quorum.us/campaign/127768
STUDY: Age of Multiple Sclerosis Symptom Onset Affects Mental and Physical Health-Related Quality of Life in Opposite Directions
https://sciencedirect.com/science/article/abs/pii/S2211034825003037
REPORT: No Compromises: Supporting People with MS to Thrive In and Out of Work
https://www.lancaster.ac.uk/media/lancaster-university/content-assets/documents/lums/work-foundation/reports/WF_MSSNoCompromises-SupportingpeoplewithMStothriveinandoutofwork.pdf
Neurogenesis
https://neurogenesis-cell.com
The Portable Neuromodulation Stimulator (PoNS)
https://ponstherapy.com
Join the RealTalk MS Facebook Group
https://facebook.com/groups/realtalkms
Download the RealTalk MS App for iOS Devices
https://itunes.apple.com/us/app/realtalk-ms/id1436917200
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https://play.google.com/store/apps/details?id=tv.wizzard.android.realtalk
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RealTalk MS Episode 408
Guest: Kris Inman