RealTalk MS

Latest Episodes:

Episode 37: MS & Sexual Function with Stuart Nixon, MBE May 29, 2018

Show notes

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 future strategies, World MS Day, and we're giving away an Amazon Echo Dot! We have a lot to talk about! Are you ready for RealTalk MS? ____________

MS Conference Update :51

International Progressive MS Alliance Announces Future Strategies 4:06

World MS Day 6:10

Win an Amazon Echo Dot 7:56

Interview with Stuart Nixon, MBE 11:06

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LINKSIf your podcast app doesn't show these links, you'll find them in the show notes at www.RealTalkMS.com

The International Progressive MS Alliance

World MS Day

The RealTalk MS Podcast Alexa Skill

Enter to Win an Amazon Echo Dot

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Entering our Amazon Echo Dot Contest is Easy!

1. Visit www.realtalkms.com/contest 2. Click on the "View in iTunes" button on the left 3. If prompted to launch iTunes, click the "Launch Application" button 4. Click the "Subscribe" button 5. Click on "Ratings and Reviews" 6. Click the "Write a Review" button 7. Write a simple, honest review about the RealTalk MS podcast 8. Give us a rating from 1 to 5 stars (with 5 stars being the best) 9. Click "SUBMIT" 10. Send an email to contest@realtalkms.com. Include your email address and whatever name you left your review under

THAT'S IT! Winner will be announced on the June 26th podcast.

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Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com.

RealTalk MS Episode 37 Guest: Stuart Nixon, MBE Hosted By: Jon Strum

Tags: MS, MultipleSclerosis, bringinguscloser, Alexa, AllianceCongress2018, RealTalkMS

Episode 36: Day Two From the International Progressive MS Alliance Scientific Congress on MS Rehabilitation & Symptom Management May 25, 2018

Show notes

The RealTalk MS podcast is coming to you from the Sheraton Centre Hotel in 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.

Yesterday's session included a presentation on how some of the insights from stroke rehabilitation can be transferred to MS rehabilitation. There were detailed presentations on some of the key areas impacting translational strategies in progressive MS, conversations about comorbidities, cognition, exercise, and functional recovery. There were experts talking about managing fatigue, creating a greater sense of resilience, and a novel strategy for bladder management.

In this episode, 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 bladder management designed to tame UTI's, and Levie Hofstee, a tech entrepreneur who has developed a new app that will automatically - and virtually invisibly - track your MS fatigue.

We have a lot to talk about! And we're talking about it live from the International Progressive MS Alliance Scientific Congress in Toronto, Canada. So...are you ready for RealTalk MS?

Episode 35: Day One of the International Progressive MS Alliance Scientific Congress on MS Rehabilitation & Symptom Management May 24, 2018

Show notes

Today -- and every day this week -- the RealTalk MS podcast is coming to you from the Sheraton Centre Hotel in 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. The first day of the Scientific Congress featured amazing presentations, insightful panel discussions, world-renowned MS researchers, and even a couple of robots! Topics included how brain rehabilitation techniques for people who have suffered a stroke might be translated into rehabilitation techniques for people living with progressive MS, some amazing insights that were gained through external brain stimulation for managing depression, PTSD, and other mental health issues, and how socially assistive robots can aid people living with progressive MS by picking up some of the caregiver burden. The day featured a presentation and panel discussion all about understanding the perspectives of people living with progressive MS, there was a deep dive into how to best use exercise therapy for people living with progressive MS, and a presentation on cognitive rehabilitation. And 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. We have a lot to talk about! And we're talking about it live from the International Progressive MS Alliance Scientific Congress in Toronto, Canada. So...are you ready for RealTalk MS?

Episode 34: From the International Progressive MS Alliance Scientific Congress on MS Rehabilitation & Symptom Management May 23, 2018

Show notes

Episode 33: From the International Progressive MS Alliance Scientific Congress on Rehabilitation & Symptom Management May 22, 2018

Show notes

Today -- and every day this week -- the RealTalk MS podcast is coming to you 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 previewing some of what the attendees will be seeing and hearing. We're also talking about several MS rehabilitation research studies that examine mindfulness meditation and well-being, virtual reality as an effective tool for gait & balance rehabilitation, and how a history of depression might stop people with MS from doing physical exercise. We'll also tell you how you can use social media to share your ideas about next-generation mobility devices. We have a lot to talk about. And we're talking about it live from the International Progressive MS Alliance Scientific Congress on MS Rehabilitation & Symptom Management, at the Sheraton Centre Hotel in Toronto, Canada. ____________

FDA Files Suit Against 2 Stem Cell Clinics 1:03

Mindfulness Meditation Creates Short-Term Well Being for People Living with MS 3:32

Virtual Reality as Effective as Traditional Rehabilitation for Gait & Balance in MS 5:03

Depression as a Barrier to Physical Exercise for People Living with MS 6:55

#MyMobilityUnlimited Is the Hashtag that Lets You Help Design the Future of Mobility Devices 9:34

International Progressive MS Alliance Scientific Congress: Progressive MS -- Making a Difference Through Rehabilitation & Symptom Management 11:24

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LINKSIf your podcast app doesn't show these links, you'll find them in the show notes at www.RealTalkMS.com

Mindfulness Meditation Improves Short-Term Well Being in MS

Virtual Reality Effective in Treating Gait & Balance Impairment in MS

Lower Aerobic Endurance Linked to History of Depression in MS

#MyMobilityUnlimited Seeks Ideas From Wheelchair Users

The International Progressive MS Alliance

The RealTalk MS Podcast Alexa Skill

Give RealTalk MS a Rating & Review

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RealTalk MS Episode 33 Hosted By: Jon Strum

Tags: MS, MultipleSclerosis, Mindfulness, Depression, MyMobilityUnlimited, MSRehabilitation, Rehabilitation, AllianceCongress2018, RealTalkMS

Episode 32: MS Rehabilitation & Symptom Management May 15, 2018

Show notes

Living your best life while you're living with MS means learning how to manage and overcome the physical and psychological limitations that MS tries to impose. This week's guest, Dr. Kathleen Zackowski, Senior Director of Patient Management, Care, and Rehabilitation Research for the National MS Society, takes us on a deep dive into MS rehabilitation & symptom management. We're also talking about the FDA approval of Gilenya for treating Pediatric MS, President Donald Trump's announced "blueprint to lower (prescription) drug prices," and next week's International Progressive MS Alliance Scientific Congress on Rehabilitation & Symptom Management. And...we're announcing some very special podcast episodes coming your way next week!! We have a lot to talk about! Are you ready for RealTalk MS? ____________

The RealTalk MS Podcast & Alexa 1:35

FDA Approves Gilenya For Pediatric MS 3:13

President Trump Announces His Prescription Drug Strategy 4:30

MS Rehabilitation & Symptom Management 6:37

International Progressive MS Alliance Scientific Congress 9:35

Special Upcoming Podcast Episodes 10:32

Interview with Dr. Kathleen Zackowski 11:21

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LINKSIf your podcast app doesn't show these links, you'll find them in the show notes at www.RealTalkMS.com

The RealTalk MS Podcast Alexa Skill

FDA Approves Gilenya for Pediatric MS

The International Progressive MS Alliance

Give RealTalk MS a Rating & Review

___________

Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com.

RealTalk MS Episode 32 Guest: Dr. Kathleen Zackowski Hosted By: Jon Strum

Tags: MS, multipleSclerosis, Alexa, Gilenya, MSRehabilitation, Rehabilitation, AllianceCongress2018, RealTalkMS

Episode 31: David Mitchell & Patients For Affordable Drugs May 08, 2018

Show notes

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 and president of Patients for Affordable Drugs. We're also talking about the RealTalk MS Podcast Alexa Skill! If you already own an Amazon Echo, Dot, or any Alexa-enabled device, you can access all sorts of convenient features for listening to RealTalk MS! (And if you don't yet have an Alexa-enabled device, this might be one more reason to get one!) A new study concludes that Autologous Haematopoietic Stem Cell Therapy is safe and effective in treating 'aggressive' MS. Another pilot study demonstrates that aspirin can help prevent the onset of overheating and exhaustion following exercise. And your future appointments with your neurologist just may take place from the comfort of your own home. We have a lot to talk about! Are you ready for RealTalk MS? ____________

Our Alexa Announcement :27

Study Shows Autologous Hematopoietic Stem Cell Therapy Safe & Effective In Treating "Aggressive" MS 4:40

Overheating When You Exercise? Study Recommends Taking 2 Aspirin 8:06

How About Having Your Next Appointment With Your Neurologist At Home? 10:15

Interview with David Mitchell 13:00

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LINKSIf your podcast app doesn't show these links, you'll find them in the show notes at www.RealTalkMS.com

The RealTalk MS Podcast Alexa Skill

STUDY: Autologous Haematopoietic Stem Cell Transplantation in Treatment Naive Patients with 'Aggressive' Multiple Sclerosis

STUDY: A Randomized Controlled Pilot Trial of Aspirin to Improve Exercise Performance in Persons with Multiple Sclerosis

SURVEY: Telemedicine Reduces Barriers to Care for Patients with Multiple Sclerosis and Neruoinflammation

Patients For Affordable Drugs

Give RealTalk MS a Rating & Review

___________

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RealTalk MS Episode 31 Guest: David Mitchell Hosted By: Jon Strum

Tags: MS, multiple sclerosis, Alexa, David Mitchell, Patients for Affordable Drugs, aHSTC, Stem Cells, Telemedicine, RealTalk MS

Episode 30: Dr. Matthew Miles & MS Research Australia May 01, 2018

Show notes

We have a lot to talk about in this podcast episode! First, a big announcement...the RealTalk MS Podcast has its own Amazon Alexa Skill! If you already own an Amazon Echo, Dot, or any Alexa-enabled device, you can access all sorts of convenient features for listening to RealTalk MS! (And if you don't yet have an Alexa-enabled device, this might be one more reason to get one!) My guest on the podcast is Dr. Matthew Miles, 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 collaborations that MS Research Australia is driving in Australia and around the world. (NOTE: During our conversation, Dr. Miles references the MS Research Australia website as "www.msra.org". The correct website is www.msra.org.au. Sorry for the confusion!) We're also talking about the results of 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 Alexa Announcement 2:22

Introducing Matthew Miles & MS Research Australia 5:48

Study Shows MS Progresses Faster in African-Americans 6:46

Gilenya Shown To Be Effective in Delaying MS Progression & Disease Activity in Pediatric MS 8:00

MS Disease-Modifying Drugs May Lose Effectiveness As You Age 9:46

Interview with Dr. Matthew Miles 11:20

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LINKSIf your podcast app doesn't show these links, you'll find them in the show notes at www.RealTalkMS.com

The RealTalk MS Podcast Alexa Skill

STUDY: MS Progresses Faster in African-Americans

STUDY: Gilenya Effective in Delaying MS Progression & Disease Activity in Pediatric MS Patients

MS Disease-Modifying Therapies May Be Less Effective As You Age

MS Research Australia

Give RealTalk MS a Rating & Review

___________

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RealTalk MS Episode 30 Guest: Dr. Matthew Miles Hosted By: Jon Strum

Tags: MS, multiple sclerosis, Alexa, Matthew Miles, MS Research Australia, AAN, Gilenya

RealTalk MS Episode 29: New Treatment Guidelines For MS Announced Apr 24, 2018

Show notes

The American Academy of Neurology (AAN) is holding its Annual Meeting this week in Los Angeles. And with more than 10,000 neurologists all in one place, we're talking about a LOT of news coming out of that conference. Just some of the topics we're talking about on this week's podcast:

The AAN announced new guidelines for treating MS.
A new study will convince you to begin MS disease-modifying therapy sooner, rather than later.
The National MS Society has announced $14.2 million dollars in funding for 45 new research projects aimed at slowing, stopping, and ending MS.
Genentech announced some good news for MS patients taking Ocrevus.
Biogen announced the results of several MS research studies.
Computer-based cognitive training can improve memory for people living with MS.

My guest on the podcast is 3-time Stanley Cup winner and and star of the National Hockey League's Chicago Blackhawks, Bryan Bickell. Bryan retired from hockey last year, after being diagnosed with MS.

We'll talk with Bryan about what it was like to get that diagnosis, what it was like to score that very memorable final goal of his career, and what lies ahead for him. (NOTE: During our conversation, Bryan references a website, "My Fighting Hockey Story". The correct website is MyFightingStory.com. Sorry for the confusion!)

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AAN Announces New Treatment Guidelines For MS 2:02

Study Indicates Importance of Starting MS Treatment ASAP 4:01

National MS Society Investing $14.2 Million in New Research 6:54

Genentech Has Good News For MS Patients Taking Ocrevus 8:25

Biogen Study Correlates MS Cognitive Decline to Socioeconomic Demographics 10:35

Computer-Based Cognitive Training Improves Memory for People Living with MS 12:49

The MSUnderstood Cafe Gives People A Taste of MS 13:49

Interview with hockey star Bryan Bickell 16:03

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LINKSIf your podcast app doesn't show these links, you'll find them in the show notes at www.RealTalkMS.com

American Academy of Neurology Annual Meeting AAN Announces New Treatment Guidelines for MS Early Versus Later Treatment Start in Multiple Sclerosis - A Register Based Cohort Study Register for Interim Analysis of the Ocrelizumab Biomarker Outcome Evaluation Study in Multiple Sclerosis Research Study Benchmarks of Cognitive Performance in a Large, Representative Patient Population Cognitive Training and Neuropsychological Performance of Patients with Multiple Sclerosis The MSUnderstood Cafe Bryan Bickell's Career Final Shot is a Shootout Goal Bryan Bickell's Story

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RealTalk MS Episode 29 Guest: Bryan Bickell Hosted By: Jon Strum

Tags: MS, multiple sclerosis, AAN, AANAM, MS Treatment Guidelines, Genentech, Biogen, Ocrevus, NMSS, National MS Society, Roche, MSUnderstood Cafe, Bryan Bickell, RealTalkMS

RealTalk MS Episode 28: Pediatric MS With Dr. Emmanuelle Waubant Apr 17, 2018

Show notes

When we think about MS, we tend to think about it as an adult disease. But the National MS Society reminds us that between 8,000 and 10,000 children up to 18 years old are living with MS in the United States. And studies suggest that between 2 and 5% of everyone living with MS has a history of experiencing the onset of at least one MS symptom before the age of 18. 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. ____________

Healthcare Spending Doubles For People Living With MS 3:38

Vocal Biomarker Detects MS By the Sound of Your Voice 6:44

Researchers Will Study Quality of MS Care in the U.S. 8:11

2018 Dystel Prize for MS Research To Be Awarded 9:33

Interview with Dr. Emmanuelle Waubant 11:24

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LINKSIf your podcast app doesn't show these links, you'll find them in the show notes at www.RealTalkMS.com

Healthcare Spending Doubles for People Living With MS

Sonde Health Patents Vocal Biomarker Technology

Study Looks At Quality of MS Care

Dystel Prize For MS Research Awarded to Dr. Frederik Barkhof

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Follow RealTalk MS on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com.

RealTalk MS Episode 28 Guest: Dr. Emmanuelle Waubant Hosted By: Jon Strum

Tags: MS, multiple sclerosis, pediatric MS, MS patient costs, Sonde Health, vocal biomarker, Dartmouth Medical Center, MS Care, Dystel Prize, Dr. Frederik Barkhof

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