RealTalk MS

Experts estimate that depression affects about 50% of the people diagnosed with MS.  In this special Vacation Edition of RealTalk MS, we're going to revisit a conversation that I had last November with Dr. Amy Sullivan, Director of Behavioral Medicine, Research and Training at the Mellen Center for Multiple Sclerosis at the Cleveland Clinic.  Dr. Sullivan shares some really important insights about living with MS and depression...and what to do about it if you are.

At the Consortium of Multiple Sclerosis Centers Annual Meeting, I learned about the Pediatric MS Alliance from Jill Blackburn. I met Dr. Miriam Franco and learned about the app that she's developed and you'll want to download. And I sat down with Dr. Rosalind Kalb and MS Activist Marques Jones to learn about MS Path 2 Care - a new set of educational modules designed to empower people living with MS to be active participants in their own care & treatment. And, of course, we're talking about research studies.

I've invited a very special guest to talk about the subject that I've received -- by far -- the most requests to discuss on the podcast, and that's sexual function and MS. We're also talking about the International Progressive MS Alliance's just-announced future strategies, World MS Day, and we're giving away an Amazon Dot!

The International Progressive MS Alliance Scientific Congress wrapped up with a commitment to raising the bar when it comes to MS rehabilitation & symptom management. We're talking to Dr. Karen Lee, Director of Research for the MS Society of Canada, Bernadette Porter, a Consultant Nurse at the National Hospital for Neurology and Neurosurgery in the U.K. with an innovative approach to taming UTI's, and Levie Hofstee, a tech entrepreneur who has developed a new app that will invisibly track MS fatigue.

The first day of the Scientific Congress featured amazing presentations, insightful panel discussions, world-renowned MS researchers, and even a couple of robots! In this episode, we'll talk to Dr. Lisa Melton, the Head of Research for MS Research Australia, robotics engineer Shane Saunderson, and two MS researchers will walk us through their research studies.

The RealTalk MS podcast is coming to you from Toronto, Canada, where the International Progressive MS Alliance is holding its 3rd Scientific Congress. The theme of the event is Making a Difference Through Rehabilitation & Symptom Management. You'll hear from a renowned progressive MS researcher who is leading an international team of experts in a 3-year research study. And we're talking to a trio of rehabilitation experts as they discuss some of the challenges they currently face in MS rehabilitation. 

The RealTalk MS podcast is live from the Sheraton Centre Toronto Hotel in Toronto, Canada, where, tomorrow, the International Progressive MS Alliance kicks off its 3rd Scientific Congress. The theme of the event is "Progressive MS -- Making a Difference Through Rehabilitation & Symptom Management," and on today's podcast episode, we're going to preview some of what the attendees will be seeing and hearing. 

Living your best life while you're living with MS means learning how to manage, overcome, and work around the physical and psychological limitations that MS tries to impose. My guest this week, Dr. Kathleen Zackowski, the Senior Director of Patient Management, Care, & Rehabilitation Research for the National Multiple Sclerosis Society, takes us on a deep dive into MS rehabilitation & symptom management.

In 2004, the average wholesale price of available MS disease-modifying therapies was $16,000. In 2013, the average price was $61,000; last year, the average price was more than $83,000. That's why my guest this week is David Mitchell, founder & president of Patients for Affordable Drugs.  We're also talking about a new stem cell therapy study, a new way to avoid overheating when you exercise, and using telemedicine for managing MS. And we are incredibly excited about the new RealTalk MS Alexa skill!

Dr. Matthew Miles is the CEO of MS Research Australia, the largest non-profit organization dedicated to funding, coordinating, and advocating for MS research in Australia. We're talking with Matthew about some of the amazing research that MS Research Australia is driving in Australia and around the world. We're also talking about the results of new MS research studies that were announced at the just concluded American Academy of Neurology Annual Meeting. These are studies that you need to know about!

The American Academy of Neurology (AAN) is holding its Annual Meeting this week in Los Angeles. With more than 10,000 neurologists all in one place, we're talking about a LOT of news coming out of that conference, including: - New treatment guidelines for MS - One more really important reason to start treating MS ASAP - Good news for MS patients taking Ocrevus - $14.2 million in funding for new MS research ...and MORE We're also sitting down to talk with NHL star Bryan Bickell about his MS journey

8,000 - 10,000 kids are living with MS in the U.S. My guest on the podcast is Dr. Emmanuelle Waubant, one of the true pioneers and experts in the field of pediatric MS. We're talking with Dr. Waubant about some of the challenges involved in diagnosing pediatric MS, which disease-modifying therapies can be used to treat pediatric MS (since the FDA hasn't specifically approved any drug to treat pediatric MS) and how kids living with MS deal with all of the challenges that life throws at them.

As technology advances at an ever increasing rate, it's speeding up the pace of scientific discovery. This week, we're looking at new tech tools - smartphone apps, desktop programs, and mobile technology - that will change the way you manage MS fatigue, anxiety, foot drop, MS rehab, and more.  And you'll meet Jayce Riley, an MS Road Warrior who is preparing to ride his bike 3,785 miles across the United States to raise money for MS research. We have a lot to talk about! Are you ready for RealTalk MS?

Podcast guest Stephanie Buxhoeveden was diagnosed with MS when she was 25 years old, working as a neurosurgical ICU nurse. Today, Stephanie is a board-certified Multiple Sclerosis Nurse, she is a Nurse Practitioner and she is the Co-Director of the MS Comprehensive Care Center where she has also been a patient. Stephanie will share some of her experiences and observations from the dual perspective of someone who is a medical specialist who treats patients with MS, and also someone who lives with MS.

My guests on the podcast are Dan and Jennifer Digmann.  Jennifer was diagnosed with Progressive MS in 1997, and Dan was diagnosed with relapsing-remitting MS in 2000. Dan & Jennifer met in 2002, and they were married in 2005.  We're talking about Progressive MS Day with Dan & Jennifer, and about what life is like when both partners in a marriage have been diagnosed with multiple sclerosis. We're also talking about MS symptom management that you can do at home -- without any drugs!