RealTalk MS

Welcome to a special episode of RealTalk MS coming to you from Day Two of ECTRIMS 2019 in Stockholm, Sweden. Today, we're talking about stem cell therapy, the long-term outcomes of MS, new data about Ocrevus, the importance of managing comorbidities, and a new global initiative that puts the voice of people living with MS at the center of MS research and MS care.

Welcome to a special episode of RealTalk MS coming to you from ECTRIMS 2019 in Stockholm, Sweden. ECTRIMS is an acronym that stands for the European Conference for Treatment & Research in Multiple Sclerosis, and this annual scientific congress is the largest MS research conference in the world. There are over 9,000 attendees here from more than 100 different countries to share new information, hear research updates, and get face to face with the leading MS researchers in the world. 

This week, I'm talking about palliative care for MS with my guest, Cherie Binns, RN, MSCN. It's a topic that a lot of people living with MS still don't know enough about, but palliative care can offer real benefits in attaining the best overall quality of life. And beginning tomorrow, you can listen to daily episodes of RealTalk MS directly from ECTRIMS 2019 in Stockholm, Sweden. I'll do my best to keep you updated on all the news coming out of the largest MS research conference in the world.

5 years ago, James Beard Award-winning chef, Chris Shepherd, decided to hold a barbecue event in his restaurant's parking lot, to raise money for the National MS Society. Today, the Southern Smoke Festival has grown into the largest 3rd party MS Society fundraising event in the United States, and with the 5th Annual Southern Smoke Festival just a few weeks away, we're talking with Chris about how this event got its start, and how it's grown to be one of the most noteworthy culinary events in the country.

Fatigue isn't only a common symptom of MS; it's also one of the most disruptive symptoms of MS. It's hard to be out living life when you're trying to overcome that feeling of just not having any gas left in the tank. My guest is Dr. Ekaterina Dobryakova, a research scientist at the Kessler Foundation's Center for Traumatic Brain Injury Research. Dr. Dobryakova's research has shown that there may be a drug-free treatment that can effectively reduce MS fatigue. And that's worth talking about!

My guest is Kyra Millich, who, until October of 2013, was a consumer protection litigator in San Francisco, recently married, and already thinking about planning a family. And that's when she received her MS diagnosis. I don't know if Kyra would say that her diagnosis changed her life, or clarified it, but I found Kyra's MS journey to be interesting, inspirational, and instructional. And I think you will too.

My guest is Professor Helen Tremlett, who holds the Canada Research Chair in Neuroepidemiology and Multiple Sclerosis at the University of British Columbia, in Vancouver, Canada. Professor Tremlett has been involved in more than 200 published research studies, and we're going to talk about a few of them -- including the research that she's done on the correlation between MS disability progression and socioeconomic status.

Episode 101: With Charcot Award Recipient Professor Catherine Lubetzki

In this special episode, we're talking with Jodi Michele Cooley. At the age of 7, Jodi became an MS caregiver. And at the age of 34, she received her own MS diagnosis. MS has almost always been a part of Jodi's life. And yet, she is the definition of the word "resilience." We're also re-visiting some of the best moments from some of our most popular interviews from the last 100 episodes. You'll hear about research...you'll learn about MS advocacy...and you'll meet some amazing MS Warriors!

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 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.

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 member of the MS Society's 2010 Leadership Class, and he served as an editor of the National MS Society's SSDI guidebook.

When Mike Zimits was diagnosed with MS, he decided he could get into better shape by getting on a bike. Then, he convinced his friend's sister, Catherine Tsigakos, to get on a bike. Cat was serving as her brother's caregiver after he was diagnosed with progressive MS. My guests, Cat and Mike, have raised over $1 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. 

How do neurologists really know when it's appropriate to use one specific disease-modifying therapy instead of another, or even when it's appropriate to switch to another? Dr. Ellen 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.

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.

This week, we're talking about shady stem cell clinics and their shady clinical trials. We'll also 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 & technology at the University of Illinois, Urbana-Champagne. We're talking with Dr. Rice about her new study, designed to prevent falls among wheelchair users.