RealTalk MS

Past Podcast Episodes

Episode 151: Managing MS Pain and Fatigue with Dr. Heidi Maloni


Pain and fatigue are two of the most common and challenging symptoms of MS. These are the symptoms that can stop you from fully engaging in your life at work, at home, with friends, or family.

My guest is Dr. Heidi Maloni. Dr. Maloni is a nurse practitioner and the National Clinical Nursing Director for the Multiple Sclerosis Center of Excellence East at the Veterans Affairs Medical Center in Washington, DC. And Dr. Maloni is an expert on treating pain and fatigue in MS.

Dr. Heidi Maloni

Dr. Maloni will share some best practices for managing MS-related pain, we'll talk about some specific medications that can help manage MS-related pain, and we'll also get into the effectiveness of cannabis-based products for managing pain.

And when we talk about fatigue with Dr. Maloni, we'll talk about how to get your friends and family to stop telling you that you're probably just tired, and a nap will fix everything.

We're also talking about why access to affordable healthcare isn't shouldn't be a partisan political issue and what gets lost in the conversation when it is.

If you happen to be an African-American or Hispanic MS patient and you'd like to have a voice in the design of an important MS research study, we'll tell you how you can be a part of that study's Patient Advisory Group. It's an opportunity for the patient perspective to be part of the planning for this study. And it's an opportunity for you to be paid for your participation in that planning.

We'll also tell you about Sidecar, a dramatic short film from SHIFT-MS that illustrates the physical and emotional burden that accompanies MS progression.

And if you're an MS caregiver who would like to contribute to MS research, or you know someone who is, we'll tell you about an online survey just for you.

We have a lot to talk about! Are you ready for RealTalk MS??!

Your access to healthcare shouldn't be a partisan issue, right?  2:25

Join the Patient Advisory Group for the CHIMES study  8:32

DUNK MS is going virtual and raising funds for MS research   10:24

SHIFT-MS debuts Sidecar, their latest short film  20:03

Are you an MS caregiver? There's an online survey for you  20:59

My Interview with Dr. Heidi Maloni  22:19

Share this episode  42:06

Please Support the National MS Society COVID-19 Response Fund  42:26

SHARE THIS EPISODE OF REALTALK MS

Just copy this link & paste it into your text or email: https://realtalkms.com/151

ADD YOUR VOICE TO THE CONVERSATION

I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!

Email: jon@realtalkms.com
Phone: (310) 526-2283

And don't forget to join us in the RealTalk MS Facebook group!

LINKS

If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com

National MS Society's Ask An MS Expert Video Replay

What You Need to Know About Coronavirus (COVID-19)

National MS Society COVID-19 Response Fund

CHIMES Study Patient Advisory Group questionnaire

DUNK MS

SIDECAR: A SHIFT-MS film about the misapprehensions of advanced multiple sclerosis

Accelerated Cure Project for MS Survey: Caregiver Relationships with Healthcare Providers

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RealTalk MS Episode 151
Hosted By: Jon Strum
Guests: Dr. Heidi Maloni, Blake Arnet

Tags: MS, MultipleSclerosis, MSResearch, MSSociety, DunkMS, RealTalkMS

Episode 150: The Cost of MS Medications, Drug Development, and More: My Conversation with Genentech CEO Alexander Hardy


Conversations about MS almost always get around to the high cost of MS disease-modifying therapies. Joining me on the podcast is the CEO of Genentech, Alexander Hardy. Genentech is a biotech company that many of you know as the manufacturer of Ocrevus, the first approved disease-modifying therapy that treats both relapsing-remitting MS and primary progressive MS.

During our wide-ranging conversation, Alexander and I get into the cost of MS prescription medications, the real costs of bringing a new drug to market, racial disparities in clinical trials, inequities in our healthcare system, and more. It's a conversation you won't want to miss.

Alexander Hardy

We'll also tell you where you can get a FREE copy of Dr. Brandon Beaber's book, Resilience in the Face of Multiple Sclerosis, and where to sign up for the next series of Virtual Jumpstart programs from CAN-DO MS. We'll even share the details about this Sunday's Longest Day of Golf,  a creative (and very successful!) DIY fundraising event for the National MS Society.

We're also talking about a newly published study that shows that most relapsing-remitting MS disability accumulation is progressive and not tied to relapses.

And we'll tell you about another study that shows that most people living with MS want to discuss the cost of their treatment with their neurologist, but very few do. We'll even share our thoughts about how we can begin to fix this.

We have a lot to talk about! Are you ready for RealTalk MS??!

It's Our 150th Episode!  :22

Get in Touch with RealTalk MS  1:36

Get Your Free Copy of Resilience in the Face of Multiple Sclerosis    3:34

CAN-DO MS Virtual Jumpstart Programs  4:43

The Longest Day of Golf Fundraising Event for the National MS Society  5:38

Study Finds Most Relapsing-Remitting MS Disability Accumulation Is Progressive and Not Tied to Relapses   7:29

Survey Shows Most MS Patients Want to Discuss the Cost of MS Care…But Don't  9:50

“Patients” are Customers!  11:31

My Interview with Alexander Hardy  13:09

Share this episode  29:31

Please Support the National MS Society COVID-19 Response Fund  29:50

SHARE THIS EPISODE OF REALTALK MS

Just copy this link & paste it into your text or email:  https://realtalkms.com/150

ADD YOUR VOICE TO THE CONVERSATION

I've always thought about the RealTalk MS podcast as a conversation. And this is your opportunity to join the conversation by sharing your feedback, questions, and suggestions for topics that we can discuss in future podcast episodes. Please shoot me an email or call the RealTalk MS Listener Hotline and share your thoughts!

Email: jon@realtalkms.com
Phone: (310) 526-2283

And don't forget to join us in the RealTalk MS Facebook group!

LINKS

If your podcast app doesn't allow you to click on these links, you'll find them in the show notes in the RealTalk MS app or at www.RealTalkMS.com

National MS Society's Ask An MS Expert Video Replay

What You Need to Know About Coronavirus (COVID-19)

National MS Society COVID-19 Response Fund

To receive a free copy of Resilience in the Face of Multiple Sclerosis, just jump onto Twitter, and request your copy by sending a Tweet to the author, @Brandon_Beaber.

CAN-DO MS Virtual Jumpstart Programs

Longest Day of Golf Fundraising Event for the National MS Society

STUDY: Contribution of Relapse-Independent Progression vs Relapse-Associated Worsening to Overall Confirmed Disability Accumulation in Typical Relapsing Multiple Sclerosis in a Pooled Analysis of 2 Randomized Clinical Trials

STUDY: Perceptions and Experiences of Multiple Sclerosis Patients Regarding Out-of-Pocket Costs of Care Discussions

Join the RealTalk MS Facebook Group

Download the RealTalk MS App for iOS

Download the RealTalk MS App for Android

Give RealTalk MS a Rating and Review

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

RealTalk MS Episode 150
Hosted By: Jon Strum
Guests: Alexander Hardy

Tags: MS, MultipleSclerosis, MSResearch, MSSociety, Genentech, Ocrevus, Resilience, RealTalkMS