RealTalk MS
There are some people who, once you meet them, it's impossible to forget them. They seem to leave an indelible impression. Lydia Emily is one of those people. Whether it's through her art that occasionally escapes the canvas to be expressed as massive urban murals proclaiming End MS, or through her outspoken MS advocacy. Lydia Emily is a force. Now, along with co-author Lenlee Keep, Lydia Emily has channeled that energy into a book entitled, The Art of Hope: The Life and Art of Lydia Emily. Lydia Emily and her co-author, Lenlee Keep, join me this week to talk about the process of writing the...
info_outline Special Episode: Pregnancy and MS with Dr. Riley BoveRealTalk MS
MS affects almost 3 times as many women as men, often affecting women of childbearing age. In this special episode of RealTalk MS, Dr. Riley Bove answers some of the important questions about the impact of MS on a woman's pregnancy and the impact of pregnancy on a woman's MS. This special episode of RealTalk MS is sponsored by Viatris. SHARE THIS EPISODE OF REALTALK MS Just copy this link & paste it into your text or email: 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...
info_outline Episode 376: Adding Dance, Music, and Art Therapy to Your MS Treatment Plan with Dr. Francois BethouxRealTalk MS
On this podcast, we tend to talk a lot about new technologies, emerging treatments, the most recently approved disease-modifying therapies, and even some DMTs that haven't yet been approved. And in the midst of all that cutting-edge research and evolving science, it's easy to lose sight of the fact that expressive therapies like dance and movement therapy, music therapy, and art therapy have all been shown to help promote self-efficacy, emotional well-being, and motor control in people living with MS. Dr. Francois Bethoux joins me on today's episode to discuss the benefits of...
info_outline Episode 375: Managing Teenage MS with Dr. Ann YehRealTalk MS
Being a teenager is hard. So, imagine for a moment that in addition to everything else that teenagers have to endure, you're a teenager who's been diagnosed with MS. Your ability to participate in after-school activities or just hang out with your friends is impacted by MS-related fatigue. The typical adolescent anxiety over something someone posted on social media evolves into depression. And cognitive issues begin to make it harder for you in the classroom. This is an unfortunate reality for many adolescents who are living with MS. Joining me to discuss how MS affects adolescents and how...
info_outline Episode 374: Grieving When You're Living With MS with Dr. Holly HendinRealTalk MS
Learning to live with MS is learning to live with loss. For some, those losses may be minor and seem relatively insignificant. For others, those losses can be huge and life-altering. The definition of grief is an emotional response to a significant loss. It's not unusual to grieve over those things in your life that have been lost due to MS. In fact, healthy grieving is a necessary emotional step to moving forward in life. Dr. Holly Hendin, a faculty physician and psychiatrist at St. Joseph’s Hospital Medical Group Outpatient Behavioral Health in Phoenix, Arizona, joins me to explore...
info_outline Episode 373: ECTRIMS Research Roundup Part 2 with Dr. Bruce BeboRealTalk MS
Now that he's had a chance to digest all of the research presented at ECTRIMS, Dr. Bruce Bebo, the National MS Society's Executive Vice President of Research, is back to share the key research presented at the largest MS research conference in the world. This episode of RealTalk MS is the perfect follow-up to my initial conversation with Bruce, which occurred just minutes after ECTRIMS ended. (If you missed our conversation, you may want to check out Episode 369 of RealTalk MS.) We have a lot to talk about! Are you ready for RealTalk MS??! This Week: Part 2 of our coverage of ECTRIMS...
info_outline Episode 372: Medicare Changes That Will Affect You in 2025 with Sarah AndersonRealTalk MS
Open enrollment is underway! And if you're one of the 25% of people living with MS who get their coverage through Medicare, there are some major changes coming in 2025. So, it's especially important that you review your prescription drug coverage to make sure you're enrolled in the Medicare Part D plan that's best for you. Sarah Anderson, pharmacist and senior director of clinical resources and programming at the National MS Society, joins me to help us decipher those changes and navigate the sometimes confusing world of health insurance. We'll also tell you about a research team...
info_outline Episode 371: A Difference-Making Mobility Device with Dee Ecklund and BE AlinkRealTalk MS
In the seven years that I've been hosting RealTalk MS, no one has ever described a mobility device as life-changing. That is until listener Dee Ecklund reached out to tell me about her experience with the Alinker. One of my goals in producing this podcast is to introduce the RealTalk MS listener community to people who are difference-makers. And Dee's initial DM led to my conversation with Dee and the inventor of the Alinker, a true difference-maker, BE Alink. The National MS Society's 3rd annual Hispanic/Latinx MS Experience Summit is just two days away! We're sharing all the...
info_outline ECTRIMS Extra: Results from the Tolebrutinib Phase 3 Clinical Trial for Relapsing MS with Dr. Jiwon OhRealTalk MS
With more than 9,000 MS researchers and clinicians in attendance, the 2024 ECTRIMS meeting in Copenhagen was the largest MS research conference in the world. During the meeting, I had an opportunity to talk with some of the best and brightest minds in MS research and clinical practice. This is your invitation to listen in on my ECTRIMS EXTRA conversation with Dr. Jiwon Oh. Dr. Oh is a neurologist, scientist, and the Medical Director of the Barlo Multiple Sclerosis Program at St. Michael’s Hospital in Ontario, Canada. Dr. Oh is also the Principal Investigator in Gemini, the Phase 3...
info_outline Episode 370: Understanding the Updated Pathways to Cures Research Roadmap with Dr. Bruce Bebo and Shawna GoldenRealTalk MS
In 2020, the National MS Society convened the Pathways to Cures Think Tank. I shared news and interviews from what I considered a historic meeting back in of RealTalk MS. The information shared and the work generated by that Think Tank led to the Pathways to Cures Global Summit in 2023. In and of RealTalk MS, I shared news and interviews from what I described as yet another historic meeting. The Pathways to Cures Research Roadmap has been updated, and I'm devoting this week's episode of RealTalk MS to my conversation with the National MS Society's Executive Vice-President of Research,...
info_outlineLiving with MS is expensive. A recent study funded by the National MS Society found the average cost of living with MS in the United States is $88,487 a year. Even with insurance, that can turn out to be a heavy lift.
One thing you don't need is to be worrying about money while you're already worrying about MS. So, when I think about discussing budgeting and managing your personal finances when you're living with MS, I think we're really talking about preserving your quality of life.
Joining me with strategies for budgeting and managing debt when you're living with MS is the Senior Vice President of Membership and Media Relations at the National Foundation for Credit Counseling, Bruce McClary.
We'll also tell you about the updated Pathways to Cures Research Roadmap and the first ever global landscape analysis of MS research funding.
We're sharing very encouraging results from the Phase 2 open-label extension study of Fenebrutinib, an experimental BTK inhibitor.
We'll give you the details of a pilot study that demonstrated what may be a successful treatment for sexual dysfunction among men and women living with MS.
We'll tell you why middle-aged people with MS may want to consider resistance training.
And we'll tell you how to register for the National MS Society's Voting Without Barriers webinar.
We have a lot to talk about! Are you ready for RealTalk MS??!
This Week: Budgeting for Living with MS :22
The Pathways to Cures Research Roadmap has been updated and refined 1:25
There's very encouraging news from the Phase 2 open-lable extension study of Fenebrutinib 5;31
Results from a pilot study point to successful treatment for sexual dysfunction among men and women living with MS 6:35
Study results show that resistance training is beneficial for middle-aged people with MS 9:52
We're 8 weeks away from election day in the U.S. and the National MS Society is hosting a webinar about access to polling places 11:36
Senior Vice President of Membership and Media Relations at the National Foundation for Credit Counseling, Bruce McClary, shares tips and strategies for taming your household budget and budgeting for living with MS 15:49
Share this episode 33:16
Have you downloaded the free RealTalk MS app? 33:36
SHARE THIS EPISODE OF REALTALK MS
Just copy this link & paste it into your text or email: https://realtalkms.com/367
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!
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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 Episode 297: From the Pathways To Cures Global Summit (Part 1)
https://realtalkms.com/297
RealTalk MS Episode 298: From the Pathways to Cures Global Summit (Part 2)
https://realtalkms.com/298
The Refined Pathways To Cures Research Roadmap
https://journals.sagepub.com/doi/10.1177/13524585241266483
The First Global Landscape Analysis of Multiple Sclerosis Research Funding
https://journals.sagepub.com/doi/full/10.1177/13524585241265961
STUDY: Tibial Nerve Stimulation in the Management of Primary Sexual Dysfunction in Patients with Multiple Sclerosis: A Pilot Randomized Control Trial
https://link.springer.com/article/10.1007/s10072-024-07687-2
STUDY: Is Resistance Training an Option to Improve Functionality and Muscle Strength In Middle-Aged People with Multiple Sclerosis? A Systematic Review and Meta-Analysis
https://www.mdpi.com/2077-0383/13/5/1378
REGISTER for the Voting Without Barriers Webinar
https://p2a.co/Dqy1Xpk
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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RealTalk MS Episode 367
Guest: Bruce McClary