MS can sometimes feel isolating. And the ironic thing about those feelings of isolation is that you can experience them even when you're with other people. It's the feeling that, while everyone is being supportive, nobody really gets it . They've never experienced what it's like to actually live with MS. That's why connecting with others who are living with MS can be such a difference-maker. My guests in this episode are Debby Bennett, the Manager of Community Engagement at the National MS Socie...
Feb 06, 2023•29 min•Season 6Ep. 284
Faith Bigam was diagnosed with MS in 2014, when she was 12 years old. She didn't know what MS was because, well, why would any 12-year-old kid know what MS is? But Faith quickly learned and just a year later, she had already become an Ambassador for the MS Society of Canada. The initial years of Faith's MS journey weren't easy, and I'm not sure how someone of any age who had less resilience might have handled them. But I'm pretty sure that next to the word "resilience" in the dictionary you'll f...
Jan 30, 2023•33 min•Season 6Ep. 283
The CDC tells us that 36 million falls are reported each year, resulting in 3 million adults being transported to the emergency room and 32,000 adults dying from their falls. Studies have shown that, in any six-month period, more than 50% of the people living with MS fall at least once, and more than 30% fall multiple times. Falling can cause broken bones, brain damage, and worse. That's why I'm dedicating this entire episode of RealTalk MS to fall prevention. Dr. Sara Migliarese joins me with t...
Jan 23, 2023•33 min•Season 6Ep. 282
Today, we're talking about a topic that you've told me is the topic that you'd most like me to cover on this podcast -- autologous hematopoietic stem cell transplantation, or HSCT. And I'm dedicating this entire episode of RealTalk MS to a deep dive on the subject with the man who pioneered autologous HSCT as a treatment for relapsing-remitting MS, Dr. Richard Burt. We have a lot to talk about! Are you ready for RealTalk MS??! This Week: Autologous HSCT with Dr. Richard Burt :23 Dr. Richard Burt...
Jan 16, 2023•56 min•Season 6Ep. 281
Last week, in Episode 279 of RealTalk MS we talked with Professor Tanja Kuhlmann about a new framework for researching, diagnosing, and treating MS that was proposed by the International Advisory Committee on Clinical Trials in Multiple Sclerosis. This proposed framework represents the next evolutionary step in diagnosing and treating MS. Joining me this week to talk about how this proposed framework will impact people living with MS is the National MS Society's Chief Advocacy, Services, and Sci...
Jan 09, 2023•32 min•Season 6Ep. 280
Every episode of RealTalk MS features updates and reports about emerging science. And, as you listen, some of you may wonder, ' When will these scientific achievements benefit me? When will these breakthroughs and advancements make their way from the laboratory workbench to the clinic? ' That's exactly what the panel of MS experts who comprise the International Advisory Committee on Clinical Trials in MS are proposing in a new framework that leverages what scientists are continuing to learn and ...
Jan 02, 2023•28 min•Season 6Ep. 279
When people ask me how I go about deciding who to interview for this podcast, my answer has always been the same. I look for difference-makers. People whose efforts are making a real difference in the MS community. They might be a researcher, clinician, rehabilitation specialist, MS Navigator, fundraiser...it's a long list. A difference-maker might also be someone who motivates and inspires all of us by the way they choose to embrace life. My favorite conversation this year was with just that ki...
Dec 26, 2022•29 min•Season 6Ep. 278
For me, the holiday season is a time for joy, celebration, and reflection. And when I reflect upon the advances in MS research that we've seen in the past year, it's hard not to feel encouraged. 2022 will be remembered as the year when the National MS Society published the Pathways to Cures research roadmap, a bold initiative focused on stopping MS progression, restoring lost function, and ending MS forever. I talked about this pivotal moment in the history of MS research with Dr. Carol Whitacre...
Dec 19, 2022•35 min•Season 6Ep. 277
This special episode of RealTalk MS is sponsored by EMD Serono and MS in the 21st Century . In this special episode of RealTalk MS, I'm joined by Professor Peter Rieckmann, Stanca Potra, and Maria Paz Giambastiani. We're taking a look back at the advances that have been made in treating MS and focusing our eyes ahead to determine the work that still needs to be done. Professor Rieckmann is the Chief Physician of Neurology and Clinical Neuroplasticity at the Medical Park Loipl, Germany. Professor...
Dec 15, 2022•38 min
Some of you might remember that at the end of October, I was in Amsterdam, attending the 2022 ECTRIMS Congress. ECTRIMS is an acronym for the European Committee for Treatment and Research in Multiple Sclerosis, and their annual scientific congress is the largest MS research conference in the world. As the conference ended, I sat on some steps outside the conference center alongside the National MS Society's Executive Vice-President of Research, Dr. Bruce Bebo. And Dr. Bebo shared his initial imp...
Dec 12, 2022•37 min•Season 6Ep. 276
The first step in living well with MS is establishing a treatment plan with your neurologist or MS specialist. And a disease-modifying therapy, or DMT, should be the foundation of that plan. Joining me to talk about what disease-modifying therapies can and can't do, and how to work with your doctor to find the best MS medication for you is the Clinical Pharmacy Specialist in Multiple Sclerosis and Neuroimmunology at VCU Health in Richmond Virginia, Ross Tingen. Why are we talking about global wa...
Dec 05, 2022•28 min
This special episode of RealTalk MS is sponsored by EMD Serono and MS in the 21st Century . In this special episode of RealTalk MS, we're talking with Professor Dawn Langdon and David Yeandle about the impact of MS-related cognitive issues on employment. Professor Langdon is a Professor of Neuropsychology with a special interest in cognition at the Royal Holloway University of London, in the United Kingdom. Professor Langdon is also a Trustee of the MS Trust in the U.K. David Yeandle was diagnos...
Nov 30, 2022•25 min
A quick scan of the news on any given day should remind all of us that natural disasters can strike anywhere at any time. Whether it's massive snowstorms, earthquakes, wildfires, hurricanes or floods, no one is immune when Mother Nature chooses to act up. That's why being prepared for a natural disaster is important for everyone. And if you're living with MS, it's especially important for you to have your family's emergency preparedness plan in place. Senior Medical Advisor to National Disaster ...
Nov 28, 2022•32 min•Season 6Ep. 274
Spasticity is one of the most common symptoms of MS, impacting up to 80% of the people living with MS. It can feel like mild muscle tightness that you wish would just go away or it can be so painful and debilitating that it keeps you from moving. Dr. Michelle Cameron joins me in this episode to discuss what spasticity is and how to best manage it. Dr. Cameron is a neurologist and physical therapist, a professor in the Department of Neurology at Oregon Health & Science University, Interim Chi...
Nov 21, 2022•35 min•Season 6Ep. 273
This week's episode of RealTalk MS was recorded in front of a LIVE audience at the National MS Society's 2022 Leadership Conference. Joining me in this special episode are Lori Turley, who was diagnosed with MS in 2021, and whose commitment to fundraising and advocacy is already producing dividends, and Dr. Bradley Zuchero, an MS Society-funded research fellow whose lab has discovered the biological mechanism that produces myelin in our central nervous system. In addition to my questions, our au...
Nov 14, 2022•35 min•Season 6Ep. 272
When we talk about managing MS on this podcast, we're usually talking about treatments based upon traditional Western medicine. But there are also complementary therapies that have been shown to improve MS symptoms. And acupuncture is one of those complementary therapies that's been shown to be effective in treating pain, spasticity, numbness or tingling, bladder problems, and depression. Joining me to talk about the therapeutic effects of acupuncture in treating MS symptoms are Jennifer Mohr-Bo...
Nov 07, 2022•31 min•Season 6Ep. 271
Last week, over 7,000 MS researchers and clinicians from more than 100 countries traveled to Amsterdam to attend the 2022 ECTRIMS (European Committee for Treatment and Research in Multiple Sclerosis) Congress, the largest MS research conference in the world. As has become an annual ECTRIMS tradition on RealTalk MS, the National MS Society's Executive Vice-President of Research, Dr. Bruce Bebo, and I took up our vantage point on the steps right outside of the convention center to discuss the rese...
Oct 31, 2022•22 min•Season 6Ep. 270
A couple of months ago, the Inflation Reduction Act was signed into law. And while it touches on many different areas, it will be remembered as the most consequential healthcare bill since the Affordable Care Act. From the emails I've received, I know that many of you are wondering how and when this new law will impact what you pay for your prescription medications. The National MS Society's Vice-President of Advocacy, Steffany Stern, and MS activist Judy Wilson, join me in this episode to expla...
Oct 24, 2022•35 min•Season 6Ep. 269
If you're on Medicare, or you get your health insurance through the healthcare.gov marketplace or one of the state health insurance exchanges, then you might already know that the annual open enrollment period is about to get underway or, in some cases, is already underway. Health insurance policies change. Physician networks change. Drug formularies often change. Deductibles change. And if you're living with MS, you can't afford to go through open enrollment assuming that the health insurance p...
Oct 17, 2022•34 min•Season 6Ep. 268
It's flu season and that makes it an excellent time to talk about vaccines. People living with MS often have questions about whether a particular vaccine is good for them or whether it might carry with it the risk of a relapse or other negative health consequence. Dr. Lisa Doggett joins me to brief us on all things related to vaccines and MS. Dr. Doggett is a family doctor as well as the Senior Medical Director at HGS AxisPoint Health. She was a 2021-2022 American Academy of Family Physicians Va...
Oct 10, 2022•35 min•Season 6Ep. 267
Living with MS can make everyday run-of-the-mill tasks like bathing, cooking, and driving more challenging than they have to be. The National MS Society's Associate Vice President of Research, Dr. Kathy Zackowski, joins me with a whole list of simple adjustments and easy modifications that you can make that will make the things you do every day easier. Get ready to take some notes! A lot of you have reached out to me, sharing your thoughts about Selma Blair competing on Dancing with the Stars . ...
Oct 03, 2022•38 min•Season 6Ep. 266
Living with MS comes with its own set of sometimes significant challenges. But being in the dark, unaware of the noteworthy and remarkable advances being made in MS research is one challenge that we're learning to overcome. Sharon Roman is a patient-partner and writer for the British Medical Journal Group. Sharon lives with MS and she also writes a blog called Tremlett's MS Research Explained . The blog features plain-English posts detailing the research being done by Professor Helen Tremlett an...
Sep 26, 2022•34 min•Season 6Ep. 265
We're celebrating the 5th anniversary of RealTalk MS and we're kicking it off with my exclusive conversation with CNN national correspondent and anchor, John King. John was diagnosed with MS in 2008. However, John didn't disclose his diagnosis until 2021 -- in an unplanned moment on national television. John shares his MS journey from the day he was diagnosed through his unplanned disclosure. And he also shares a message for anyone who is newly diagnosed with MS. Then, we're doing something comp...
Sep 19, 2022•40 min•Season 6Ep. 264
In addition to its physical symptoms, MS can also affect your emotional well-being. Depression, persistent anxiety, and extreme irritability are common. And, just like the physical symptoms of MS, they require treatment. But people living with MS tend to focus on their physical health and, too often, end up neglecting their mental health. Dr. Dawn Ehde joins me to talk about maintaining and strengthening your emotional well-being when you're living with MS, and she'll introduce you to a new reso...
Sep 12, 2022•33 min•Season 5Ep. 263
The conversation between a doctor and patient is evolving from a time when that conversation was often limited to the doctor prescribing a particular disease-modifying medication and the patient silently nodding their head in agreement to something much more closely resembling a real conversation. Shared decision-making offers the patient an opportunity to discuss their treatment goals, explain their risk tolerance, and talk about their comfort level with side effects. But not every neurologist,...
Sep 05, 2022•32 min•Season 5Ep. 262
When you're living with MS, even the most mundane daily tasks can sometimes be challenging. There are days when opening a door, taking things out of a drawer or a cupboard, or picking something up from the floor can all seem out of reach. Those just happen to be some of the many tasks that a service dog can help you with. This week, attorney Trevor Hardy joins me to talk about the impact that his service dog, Tristan, has had on his life. We're also reviewing what you need to know about monkeypo...
Aug 29, 2022•38 min•Season 5Ep. 261
Women are roughly 3 times more likely to develop MS compared to men. But when men develop MS, they're more likely to experience a more aggressive disease course. Men are more likely to experience motor problems, loss of coordination and balance, and cognitive difficulties. When they experience a relapse, men are more likely to see their exacerbated symptoms continue, even during times of remission. Given these evidence-based observations, it seems sadly ironic that, as they develop MS symptoms, ...
Aug 22, 2022•32 min•Season 5Ep. 260
More than half of the people living with MS report significant disruptions in their sleep and difficulty maintaining a consistent sleep schedule. Sleep-related problems can lead to additional health issues, not to mention an overall decline in quality of life and well-being. The Director of the Sleep, Health, and Wellness Lab at the University of Kansas Medical Center Department of Physical Therapy and Rehabilitation Science, Dr. Katie Siengsukon, returns to the podcast to talk about how sleep a...
Aug 15, 2022•37 min•Season 5Ep. 259
One of the realities of living with MS is that you're often dealing with invisible symptoms. And because symptoms like numbness and tingling, fatigue, depression, vision issues, and pain aren't apparent to others, it can be hard for people around you to understand what MS is all about and, specifically, what you might be struggling with. Kathy Costello returns to the podcast to discuss how to best manage the invisible symptoms of MS and how you can constructively shut down those conversations th...
Aug 08, 2022•34 min•Season 5Ep. 258
Dating can be tricky for anyone. And it doesn't get any easier if you happen to be living with MS. In addition to all the typical dating considerations, you also have to think about things like if, how, and when to disclose your MS. You want to make sure your dating activities are physically doable. That might mean no long walks on the beach when the temperature is soaring. It might mean no hikes up steep mountain trails. And it might even mean having to postpone your date because your symptoms ...
Aug 01, 2022•31 min•Season 5Ep. 257
