When David Meissner’s aunt, Myna Stroth, was diagnosed with ALS in 2013, he and his family wanted to do everything they could to help her. However, like so many families in their situation, they found themselves constantly searching for reliable information on how best to care for her. From big questions like what kind of medical care to seek, to everyday things like how to help her maintain her mobility and communicate, they found themselves going to many different, sometimes contradictory sources for answers.
“Our family did everything we could to support her,’ David remembers, “And I felt like it was a constant game of telephone and catching up and piecing information together. Before she passed away in 2015, my dad and I started talking and said, ‘it's so hard, even for a connected family like we are, to really know what to do, because things change so quickly with ALS.’ So, we thought, ‘Why should every family have to reinvent the wheel?’”
David and his father, Tom, envisioned one centralized resource that could give other families, caregivers, and people with ALS access to reliable information about living with the disease. They were soon joined by Kim Hughes, then the Director of Care Services for the Arizona chapter of the ALS Association. Kim, who had been a great help to Myna as she dealt with her disease, was looking for a change after 12 years of serving and advocating for the needs of the local ALS community.
Using their Experience to Guide Others Through ALS
Utilizing Kim’s wealth of experience in meeting the needs of people with ALS, and David’s background in education, writing, video, and web design, they began to work on what would become Your ALS Guide. In addition to their own expertise, they sought out experts including doctors, nurses, physical therapists, professional caregivers, and people with ALS to share their knowledge. They compiled these interviews into a series of “guides” about living with ALS, all available for free on their website.
The Your ALS Guide website launched in 2017 with a foundation of content about practical topics, including adaptive equipment, health insurance, and a state-by-state listing of ALS clinics in the U.S.
Each individual guide consists of a written article or series of articles, supplemented by video interviews with experts in each area. David and Kim say they strove to make the content accessible, easy to understand, and focused on the needs of people in different stages of their ALS journey. Many of the tone, topics, and structure of the site were informed by Kim’s many years of advising individuals and families navigating an ALS diagnosis.
“One of the biggest struggles for me when I was going into homes, or seeing people in a clinic, was having to go back to my office and do research for them,” she says. “I’d send them five or six different links to articles to find out information that I always wanted in one place. And everyone isn't ready for all this information at once. While we were building the site, we wanted to talk to people in a way that wasn’t so scientific or so blunt. We tried to make it more like when I was sitting at someone’s kitchen table, or on their couch with them discussing, ‘this is what you should know, this is what you need to know.’”
A Wealth of Content on a Variety of Topics
Since its launch, David and Kim have continued to expand the breadth of topics covered by Your ALS Guide, traveling to interview leading experts at clinics and organizations across the country. Today, the site features more than 250 pages of information, accompanied by over 200 videos. All this video content is also available on their YouTube channel. While people with ALS and their caregivers remain their primary audience, they have also added content targeted at friends and family, and professionals who work with people with ALS. They’ve also created guides with specific information for those who are newly diagnosed and veterans with ALS.
Some of the topics currently covered on the site include:
Even More Content Coming Soon
In early 2023, Your ALS Guide will be adding what David says will be their most comprehensive guide yet – a resource about daily living with ALS in the home.
“For our Home and Daily Living Guide,” says David, “we spent two days filming the MDA/ALS Center of Hope at Temple University in Philadelphia. We recorded sit-down interviews, as well as a lot of equipment demos, everything from mobility equipment to eating devices. We had an Occupational Therapist and a physical therapist do a series of range-of-motion videos. We even have a ten-minute video showing how to transfer someone living with ALS using a Hoyer Lift. It's really a rubber meets the road, ‘how-to’ type of guide.”
Later this year, Kim and David have plans to begin tackling a more in-depth guide on adaptive communication tools for people with ALS. Following that, David says they hope to create more resources for professionals working with people with ALS and to reach out to the ALS community about what topics they want to see covered.
“I think we realize in retrospect that our main theme is improving quality of life,” says David. “That’s our overarching goal. We want to focus on anything that is going to help improve somebody's quality of life, from ways to save money by knowing the ins and outs of insurance, to getting connected to local support services, to equipment that can help you stay independent, conserve energy, and be safe.”
To learn more about the advice Your ALS Guide has to offer, visit them at https://www.youralsguide.com/
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