Connecting ALS is a weekly podcast produced by The ALS Association in partnership with CitizenRacecar. We aim to discuss research and technology developments, highlight advocacy efforts, and share the personal stories woven through the community.
Leslie Ryan:
My ALS Journey was something that was created intentionally to be a live product. By that, I mean it is something that is not going to be a one and done, we've created it, we've launched it, it's on the shelf for people to use. It is something that is ever-changing.
Jeremy Holden:
Hello, everyone, and welcome to Connecting ALS. I am your host, Jeremy Holden. ALS follows no predictable path and does not progress on a predetermined timeline. For many people living with the disease, that creates real challenges when it comes to being able to plan ahead and manage the uncertainty of change. Helping people navigate that uncertainty can provide a better quality of life for people living with ALS, and their loved ones. To that end, on May 25th, the ALS Association launched My ALS Journey, a new web-based platform that connects people with ALS to personalized valuable resources and assistance.
This new interactive tool provides a personalized experience, relative information, articles, and actionable checklists that help people living with ALS plan, as they experience the stages and progression of the disease. With a personalized profile, individuals can learn about the appropriate and time-sensitive interventions available to truly live stronger and better with ALS. To learn more about this tool and how it is helping make ALS livable, I recently caught up with Leslie Ryan, senior director of Education and Professional Competencies at The ALS Association. Leslie, thank you as always for being with us here on Connecting ALS.
Leslie Ryan:
You're welcome. Thank you for having me.
Jeremy Holden:
Yeah. Well, look, one of those big Scrabble or GRE words that gets thrown around in this community quite frequently is that of heterogeneity. ALS's listeners are well aware it is a heterogeneous disease. What challenges does that create when putting together a care plan?
Leslie Ryan:
Well, as you said, everyone's experience with ALS looks really, really different, and you've met one person with ALS, you've met one person with ALS. Not only does the disease present and progress differently with everybody, that external variations, such as demographics, insurance, income, other health issues and their support network impact the journey. There are also significant decisions that must be made along the way, and potential choices change over time.
Though all of this contributes to the challenge of creating a care plan, and while we know in general what might lie ahead, there are so many variables that may turn someone down a different path or change the course of the disease completely. It's not a clearcut at this stage, do this, then at this stage, do this type of disease. Care planning can be hard.
Jeremy Holden:
That's hard for care planners who have potentially been down this road before, or who have a general sense if they're designing a care plan for someone living with ALS, they have a sense of the different paths that may come next. For somebody diagnosed with ALS, they've never gone down this road before. This is brand new. What current resources exist? We're going to get to a new resource here relatively soon, but what currently exists to help someone newly diagnosed understand how their ALS will progress, and on what timeline?
Leslie Ryan:
There's a wealth of information online and in print. We all know the internet could be a great thing, a blessing and a curse, because while it's convenient, it can be overwhelming and confusing. There are a lot of fabulous resources online, especially. There are ALS multidisciplinary clinic teams and they're one of the main places to get trusted information about individual disease timeline, as they track indicators out of disease progression, and really help people plan for what's ahead. Getting information from the ALS clinic team is really important.
Support groups, people that go to support groups and talk to those who have been on this journey a little bit out of them, maybe that will really help them understand maybe how they may progress, someone newly diagnosed, how they progress in the future. One of the best resources to help someone newly diagnosed is their local ALS Association Care Services Team. They work with so many families, to your point, who do this carefully, and they know what lies ahead, and they know what the different roads may look like, and they have a strong understanding of disease progression and what to be planning for.
They know the key questions to ask to assess different needs, and they're available to answer question when nearly any topic, provide referral to experts, and offer resources. There is information out. There's a lot.
Jeremy Holden:
Yeah, it's good to know. And you know, the ALS association recently announced a new tool, a new source of information that's out there, and that is the My ALS Journey. Talk to me a little bit, talk to listeners a little bit about what that program is. What is My ALS Journey, where did it come from, and how can it help?
Leslie Ryan:
As I think we've made the point, with an ALS diagnosis, people become overwhelmed. There is a tidal wave of information and EVOC that hit somebody when they are accepting and hearing the diagnosis of ALS. While most people immediately have many, many questions and concerns, we also really recognize that they don't know what they don't know. We wanted to provide something that would help people along the way, meeting them where they are in the moment, and then bring them forward to empower them throughout their disease journey.
In essence, we wanted something that could be the librarian in the very full of information on ALS. We created My ALS Journey. It is a web-based platform that delivers guidance and support to individuals living with ALS. In My ALS Journey, users are asked a series of questions related to their symptoms, and this online tool uses answers to deliver personalized resources, information, and articles relevant to their immediate need, while preparing them for what lies ahead. Advanced planning is critical to people living with ALS. That's hard, as we've established already. With proper preparation, disease burden can be anticipated, avoided, and managed to a greater degree.
My ALS Journey provides app reminders in the form of action items so that users can be proactive in their disease process. They also then don't have to worry about what may be falling through the cracks, or things that they're not aware of. Shared decision making is when a clinician and a patient jointly make a health decision after discussing an option, potential benefits and harm, and considering the patient's values and preferences. Patient empowerment is crucial to shared decision making, and much as that empowerment comes from knowledge.
My ALS Journey allows users a convenient platform to [inaudible 00:07:08] pertinent articles and information, so that they can educate themselves and work with their care team to achieve better care. My ALS Journey is an information tool, but it is also an engagement tool facilitating that connection between people living with ALS and their care team. The conversation starter provides access to information about how to live stronger and better as the disease progresses.
Jeremy Holden:
I like that analogy of the librarian. Makes me think of that old adage, you don't know what you don't know. This sounds like a librarian that can maybe help understand what it is that you don't know.
Leslie Ryan:
Absolutely.
Jeremy Holden:
You talked about patient empowerment and centering the people that we serve in all that we do. What role did people living with ALS have in developing My ALS Journey?
Leslie Ryan:
We heard people living with ALS, their caregivers, and some people who have lost loved ones to ALS involved in every step of this process. To begin with, we mapped out the journey in ALS, and we spoke with different people living with ALS about their experiences, what their progression looked like, what the different impacts were that they had had that changed the course of their disease, and we tried to literally map it out on paper, which was very challenging. As we keep saying, it's very heterogeneous disease.
As we developed this, we had user feedback groups that gave information around the basic wire frames, how this was going to look, what they would find helpful, was this accessible to them if they were using Eye Gaze devices, or switch-activated devices, how did they access web-based platforms? We wanted to make sure that not only the content was relevant, but that the tool itself was accessible, impactful, and something that they would find useful over time.
Jeremy Holden:
One of the things we've talked about a lot on this show in recent weeks is how it's an exciting time in terms of discovery, upstream and downstream understanding of how ALS develops and progresses, new assistive technology that is in various stages of development, but we're just learning more about the disease at an accelerated pace, and it's an exciting time. How will My ALS Journey adapt to new learnings as we learn more about the disease and how it progresses, and the needs of people as they go through their ALS journey?
Leslie Ryan:
That's a great question. It is an exciting time to be in the ALS space. My ALS Journey was something that was created intentionally to be a live product. By that, I mean it was something that is not going to be a one and done, we've created it, we've launched it, it's on the shelf for people to use. It is something that is ever-changing. Updating with resources, updating with changes in profile questions that people ask that may relate to various decisions that they're needing to make along the way, their options and care that they may have, it's something that we will continue to update. We will continue to adapt the environment and landscape around us.
Jeremy Holden:
It's an exciting time in the fight against ALS, as you say, but a great tool to add to the toolkits. Leslie, thanks for stopping by and walking through My ALS Journey. We'll be sure to share a link in the show notes so folks can give it a try.
Leslie Ryan:
Great. Thanks so much, Jeremy.
Jeremy Holden:
I want to thank my guest this week, Leslie Ryan. To get started with the My ALS Journey tool, go to MyALSJourney.com, or click the link in the show notes. If you liked this episode, share it with a friend. While you're at it, please make sure you rate and review Connecting ALS wherever you listen to podcasts. It's a great way for us to connect with more listeners.
Our production partner for this series is CitizenRacecar, post-production by Alex Bauer, production management by Lamonte-King, supervised by David Hoffman. That's going to do it for this week. Thanks for tuning in. We'll connect with you again soon.