← 4D: Deep Dive into Degenerative Diseases - ANPT
4D: Deep Dive into Degenerative Diseases - ANPT
DD SIG Navigating the Path Episode 1: National MS Society
00:20:45
Tune in to the first episode of our new series, Navigating the Path: Resources for Patients with Neurodegenerative Diseases, which highlights organizations that provide resources and information to people with neurodegenerative diseases.
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- [00:01]
A
Welcome to 4D, a podcast brought to you by the Degenerative Diseases Special Interest Group of the Academy of Neurologic Physical Therapy, a component of the apta. This podcast is intended for informational and educational purposes only and is not a substitute for medical or rehabilitation diagnosis, advice, treatment, or clinical decision making. Welcome to 4D Deep Dive into degenerative Diseases, gaining insights through casual and amusing clinical conversations. Hello, my name is Chris Burke. I'm a physical therapist and I also serve as the chair of the DD sig. And I'm excited to be here today to kick off a new series of podcasts called Navigating the Resources for Patients with Neurodegenerative Diseases. So our plan is each month we're going to be introducing our listeners to an organization that supports people with neurological diseases and their caregivers. In each episode, we will interview the representatives from the organizations to learn more about the services and support they provide. We will also be joined by a member of our DD SIG liaison team, which helps us gather and share valuable insights from these organization. So to kick things off and in honor of March being Ms. Awareness Month, we will be speaking with Lauren Corley, who is one of the managers at the National Ms. Society. We also have Greg Brusola, who's our liaison coordinator. So, Lauren, first we'll start with you. You want to tell us a little bit about your role at the Ms. Society just to start us off?
- [01:41]
B
Absolutely. And thank you so much for letting me join you all today. It's an honor to be here. My name is Lauren Corley. I live in Jacksonville, Florida and I support the Ms. Society in the Southeast region, engaging healthcare providers who treat Ms. So I engage with them, get to know them, share resources with them. So serve as that designee from our team to then also connect them with all the other options and opportunities we have nationally and also within the Southeast region.
- [02:08]
A
Terrific. So I'm a little familiar with the Ms. Society and everything they can offer, but things are always changing, so I'm probably not fully up to date. So first off, for individuals with Ms. Who want to join the Society, how do they go about that? Is there a fee? Do they just go on the website?
- [02:27]
B
We have no fees associated for anyone living with ms, even the providers who want to access our resources. One of a really popular resource for anyone who's newly diagnosed is our New to Ms. Program. It's an online virtual program that's every month. It rotates with the support group type style and then the next two weeks will be a provider doing A presentation, answering questions live. So that's a really great way to connect for newly diagnosed individuals living with Ms. We also have our Ask the Ms. Expert which is a great program we have monthly where they can ask questions, learn about different topics. It's a fresh topic every week. Our early flagship service as we like to call it is our Ms. Navigator program. And the navigators really help individuals living with Ms. Navigate Ms. Outside the clinic. Whether it's finding local resources that can help support them, directing them to our partners who do the crisis management and kind of financial planning. Navigators are wonderful at filling that gap and understanding insurance, learning about people's benefits, how to enroll. They're really there to also connect to self help groups, emotional support opportunities, many different opportunities outside of clinic is their primary role. Providers can refer to them directly through our website as well as contact us on our Navigator page to have their patient go directly to the page if they'd like to. We have many different ways to connect with our navigators and the great thing about it too now is a, it's a coaching model. So when you connect the navigator they'll set up a 30 minute appointment and the patient receipt works at that same navigator every time they connect with the society.
- [04:03]
C
Great.
- [04:03]
A
Okay, so I know that you have so much to offer. What do you think that most of your members utilize the most? Which services?
- [04:12]
B
I think the Navigator system and our. We also have local programs, we have virtual and in person programs that are geographically located. We also have a really popular Hispanic Ms. Experience Summit that's annually. Again I'm in Florida and I serve the southeast so that's a very popular event here in Florida. As well as our Black Ms. Experience Summit is a new one that's really taken off. Like I said, new to Ms. Is really popular and I mean a lot of people like going to the walks. It's a great in person event. It's a great awareness event to see friends, colleagues, caregivers, their providers are there. Our walks are also I think a really popular event to go and just be a part of the Ms. Community that way.
- [04:54]
A
Yeah, we do the Ms. Walk at Jones beach which is a state park here in on Long island and it's a great event, really enjoy that. So I have another question Lauren, if you had a chance to share with our listeners knowing that these are majority are clinicians but who are working with people with ms, what do you think is the most underutilized resource that people don't know about that you would like to make sure that you know we can do this.
- [05:24]
B
Yeah. I think one of the things that we do have we will be offering again is our Echo Ms. Program. We have four different hubs, Eastern, Central, Mountain and West Coast. And Echo is fantastic because we have our hubs, like the east coast hub is Duke, so they really serve as the moderator. But we have providers join Echo and just present cases, have discussions. There's a didactic component to it. So it's a great way for providers with different ideas, different experiences, different clinical backgrounds to come in and help each other, whether you're a general neurologist or a specialist or ptot, a social worker, mental health provider, just to come together and learn about Ms. Together and ask that forum to ask questions, whether it's a billing question or a difficult case. That's something that we do that's free, of course, and I think it's 12 CME continued education credits, except we're looking at how we're going to revamp that for next year and hopefully we will have that launch next year. And that is something that we offered before that I think was underutilized because it's such a great resource for providers.
- [06:30]
A
That's good to know. I was talking to some of my colleagues who I work with, and I was asking them, what would you want to know? Because we do work with a large Ms. Population. And they were asking, were there any, like, reimbursement for things like cooling vests and stuff? Does that still exist?
- [06:48]
B
We have discounts, so we do have a page on our website. Just hit the search button or reach out to some of our team members in your area. If you're a provider. There's. There's other six of us who cover the country. I'm happy to get anyone in touch with the person who's their team member. And we have a. It's a option on our website. We have contracted, negotiated deals with wholesalers where. Yes, if you go to that, you can use the MSSI and you can receive a discount for like a cooling vest or anything of that nature that's on that list.
- [07:17]
A
Okay.
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B
All right.
- [07:18]
A
And what about things like exercise programs? Whether you're doing stuff virtually or can send them somewhere?
- [07:25]
B
Yes. So we actually have on our website one of our colleagues who lives with Ms. And is a personal trainer. She did some great videos which are connected to our YouTube page on, you know, different levels of engagement. So she's demonstrated different exercises people can do at home between the rehab visits. And she has the different levels, you know, moderate, advanced beginner doing different exercise. It's a whole series that's available on our YouTube channel.
- [07:52]
A
So these would be videos you would watch on your own. And it's not like a live zoom group or anything like that.
- [07:59]
B
Not a live zoom group? Yeah, you can watch them on your own or as the provider. You can kind of go through it with your patient. We do have an online course as well to certify someone in wellness and exercise for Ms. Specifically. I used to teach water aerobics, so I've actually taken it myself and it's really enlightening. So it's a great online course you can take and get the certification and exercise instruction.
- [08:23]
A
Okay, so that sounds terrific. What other educational resources like specifically can patients tap into?
- [08:32]
B
Our website is pretty transparent, available to. To increase health literacy in ms, to really help patients understand, you know, Ms. Is not a death sentence. There are many ways to live a full life with Ms. Anytime. You know, literature that's been approved by mmac, our National Medical Advisory Council, different research, we have a whole page on just, you know, understanding the basics of Ms. And then we also can go into more depth based on someone's interest of what they want to learn about it. We do have a whole page and I think it's helpful to patients as well as providers on the research. We have, you know, specific rehab research papers and literature, different things that are published medical pieces. They're not going to Dr. Google, right?
- [09:13]
A
Yeah. No, that's smart. All right, so you talked a little bit about clinicians, so let's focus more on them. What kind of resources do you have that can help, especially someone new working with someone with Ms. We have a.
- [09:25]
B
Great on demand program for rehab providers on Ms. There's actually a CME component. Get five CMEs and those are provided by the American Occupational Therapy Association. And so you can get the CMEs that way. And it's a whole on demand course on learning about Ms. And rehab. It's not just for OTs but as well as PTs and speech pathologists as well. We have, like I said, a lot of our publications online and my colleagues, we send out Clinical Connections, our newsletter every month that has also new things that come up that we share on different learning opportunities, different research opportunities. You know, we will feature CMSC offers for free their four part series on the fundamentals of Ms. So we'll remind people about that. You can go to their website. We have information for that to go and learn about Ms. So we do try and continue to provide opportunities to learn, but those fundamental ones are available as well. As our on demand course.
- [10:21]
A
So let's go back to the continuing yet, because therapists are always interested in that. You had said there's no fee for that. So pts can sign up, get the credits without a fee.
- [10:31]
B
Absolutely. I think the only fee that might still be on there is just that the American Orthopedic association may have a processing fee to process the CMEs, but everything we typically offer is free for providers and patients to participate in.
- [10:48]
A
That is great. And I saw as well that you partner also with the Ms. Consortium. Is that true?
- [10:55]
B
Oh, yes.
- [10:56]
A
So anything you want to talk about how that can help a clinician?
- [11:00]
B
Absolutely. Well, the course, it's a great conference to go to.
- [11:03]
A
Okay. Yeah, I've been to. It's great.
- [11:05]
B
Yeah, it's a great conference. I think those fundamental courses that they offer that they're online with them, we also, to our partners in Ms. Care, we offer some support, but anyone can go and take the mscs, the Ms. Specialist certification from cmsc, and that's a really great way to take that exam and really learn about Ms. That's a great opportunity through the consortium. I think they also have some specific rehab options at cmsc, especially if there's any virtual options or going in person and trying to get the recordings, the talks is a great way to continue to learn.
- [11:39]
A
Okay. All right, so let's bring Greg into the loop here. Greg, tell us a little bit about what the LIAISON program does, especially related to the Ms. Society.
- [11:51]
C
Yeah, of course. Chris and Lauren, thanks for that overview of the Ms. Society services and resources provided. So the liaison program with the DD SIG was created about five years ago in 2020. And the purpose of it is to connect the DD SIG PT members with the various organizations that serve the patients that we see. So the National Ms. Society being one, Parkinson's Foundation, ALS association, et cetera. And so all these different organizations that do provide resources for patients, but also possibly for clinicians and healthcare providers. So our hope is that we can equip our members with the best resources that are available, the most recent resources that are available to serve the patients better. And so another goal that we have is to provide our own services from the DD SIG to the other organizations that we do work with. So if there is something that we can provide, then that's something that we can, of course, see about discussing more and more providing that service or that resource or anything like that, because we do provide a lot of resources already as a DD sig, including fact sheets for clinicians, for patients. We've got this podcast is amazing. We've got our newsletter that includes all of the resources and the events that our liaisons have compiled for the month. And we send that out to our GDSIG members every month in our newsletter. And the resources and events from each organization is represented in that newsletter. That way, our members can more easily access this information more readily. So that's the purpose of the DDSA Liaison program, with, of course, the huge and immense support from our individual liaisons. That's part of the team. But I have a few questions for you, Lauren. In terms of I know you're one of the managers for the Stakeholders Engagement in the Southeast region. How would clinicians or healthcare providers find out who their representative or manager is for their region?
- [13:48]
B
That's a really great question. We have a webpage on our healthcare Professionals page on our website, and it's a blank form. You can say, no, please connect me with your stakeholder engagement manager in the region and they'll send it to the appropriate person and we'll definitely follow up.
- [14:03]
C
Okay, perfect. Awesome. Yeah. And then some of the cool stuff that our liaisons have been submitting from the National Ms. Society include that webinar series that you do kind of advertise in that Clinical Care Connection newsletter that you provide. So I think there's some good topics out there coming up in the next couple of months that include sexual intimacy, health disparities and Ms. It has included a lot of, like, rehab stuff, also a lot of assistive technology webinars also. So some great information and great opportunities for our clinician members to become more engaged and get some CEUs also and learn more about multiple sclerosis.
- [14:42]
A
Good. Another thing that we've been working on is called a clinician locator map that we're trying to locate therapists around the country who specialize in people with neurodegenerative diseases. Maybe we've been building that up and once we get to the point where we. We're happy with it, maybe that would be something that we could share with you, that you could share with your stakeholders. Like, you know, if you have. You're looking for a therapist, this is someone who's trained in it, something we.
- [15:12]
B
Have that'll be great way to look at it is we have our Find Doctors and Resources page on our website. So any of your members can go on that page and claim their profile per se, where they go in and just connect it, fill it out, and then they will come up in our search as well. So we do have you know, if your partner miscarries them, a specialist, you force come to the top of the page. But then anyone else who claims their profile will come up in a search by zip code and by type of care someone's looking for.
- [15:41]
C
And I had a question too, Lauren. Could you talk a little bit more about the partner NMS Care program that you do have also, and a little bit more about possibly how clinicians can get involved with that program?
- [15:52]
B
Sure. So our partner Ms. Care is our designation of an Ms. Specialist. So there's many guidelines, but it's really, it's someone who has the training in ms, the continued education, training in ms, the requirements on both of those involvement with the Society. We look at the comprehensive care that's being provided to the Ms. Patient, and then with that evaluation is how one would become a designated partner Ms. Care. And then, of course, that individual is highlighted on that Find Doctors and Resources page. It is the list that our navigators will give to patients when they call for referrals or recommendations in their area. We also get branding opportunities so that clinician or provider can showcase. Look, I'm a partner in miscare. I'm designated by the Society as someone who provides exceptional Ms. Care.
- [16:43]
C
Wonderful. And this is definitely something that is available to be viewed on that Find Doctors and Resources page and is distinguished on their profile to inform the audience of whether or not they're a partner at Mass Care. Okay, wonderful.
- [16:58]
B
Absolutely is. And something we really look for a rehab specialist or a nurse is is that exam that I mentioned earlier that MSCs or the MSC and just showing that you have taken that specialty exam and multiple sclerosis?
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A
Yeah, I took that exam. It's a hard exam, just a little bit. Mostly not from, for the most part, you know, the physical therapy, but it requires you to know a lot of the other stuff. So you know, all the medications and the side effects and things that nurses know. So. But a great opportunity for clinicians for sure.
- [17:34]
B
If someone is interested in that, they can also reach out to their local stakeholder. And we do have the links to some of the study materials that help with that exam that are given out through cmsc.
- [17:46]
A
All right, so this was most educational. There's so much that the Ms. Society offers that hopefully this will enlighten some of our listeners. So if nobody else has any questions, we do have a tradition here on our podcast team that we always like to ask our guest what they like to do in their spare time when you're not, you know, working so hard to improve the lives of people with.
- [18:11]
B
Ms. Yeah, well, you know, I, I'm very fortunate. I grew up at the beach. I live at the beach. So the beach is my saving grace outside of work, whether it's running, cycling, ocean swimming, taking my dog for a run. There's a good chance you'll find me in the water somewhere around here or the ocean in my free time.
- [18:31]
A
And Greg, we're going to let you chime in. What do you do when you're not working as a physical therapist?
- [18:37]
C
Well, probably I'm at the gym or I'm outside running or in my dojo doing some karate. But I also like to travel. Just visit other cultures, other places, learning and eating their food. I think that's the best way to learn about culture is just to taste and experience their food culture. There's.
- [18:55]
A
You're making me hungry.
- [18:57]
C
I know.
- [19:00]
A
Thanks for joining us and special thanks to our guest today, Lauren Corley from the National Ms. Society. 4D is produced by the ANPT Degenerative Diseases Special Interest Group. Our podcast team includes Parm Padgett, Sarah Zoller, Ken Vanako, Jeffrey Schmidt, Shannon Brown, Skylar Roster, and I am Chris Burke. Subscribe to our newsletter on the AMPT website neuropt.org or check us out on Facebook and please share this episode with a friend or colleague. Special thanks to Jimmy McKay of the PT Pinecast for providing music and a special thank you to our National Ms. Society liaisons from the DD sig, Casey Colwell and Julie Line. The views, opinions and positions expressed in this podcast are those of the individual, individual creators. The Academy of Neurologic Physical Therapy and its collaborators disclaim any liability to any party for any loss or damage by errors or admissions in this publication. Thank you for listening.
- [20:02]
B
Once you start recording. Yeah, just so we can catch Chris off guard and get some bloopers. And Sarah, where are you? I am in the Boston area. I have my Dunkin Donuts today just to prove it. Basketball season.
- [20:21]
A
It's a good time to be a gator.
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B
Oh my gosh, it really is.
- [20:27]
C
I just showed up because you told me to show up. Chris.
- [20:34]
B
I love this. I, I, I need a full time Sarah in my life.
- [20:40]
A
Yeah, it's just me thanking you, so thank you.