RealTalk MS

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 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

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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

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!

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

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

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

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

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

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

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

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. In this week's podcast, 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 this week's guest, Jayce Riley, an MS Road Warrior who is preparing to ride his bike 3,785 miles across the United States to honor his late mother, and raise money for MS research.

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MS State Action Day in California :20

Online Therapy Manages MS Fatigue 3:17

FDA Approves Mobile App For LG 300 Go Rehab System 7:31

Register To Test-Drive MyMS, a New Smartphone App 9:13

Generational Differences In Healthcare 10:35

There's a New Online Resource For People With MS 12:57

Interview with Jayce Riley 16:19

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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

Elevida Online Therapy Clinical Trial Results

FDA Approves Mobile App for LG 300 Go System

Generational Trends in Healthcare

MyMS Smartphone App Study Registration

National MS Society

MS Path 2 Care

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For more RealTalk MS, follow us on Twitter, @RealTalkMS_jon, and subscribe to our newsletter at our website, RealTalkMS.com.

RealTalk MS Episode 27 Guests: Jayce Riley Hosted By: Jon Strum

Tags: MS, multiple sclerosis, Elevida, MS fatigue, LG300 Go, My Bioness, MyMS, MS Path 2 Care, MS podcast, RealTalk MS