For Michelle Frederick, manager of equipment and assistive technology for the ALS Association, sometimes the most difficult part of her job is starting the conversation. For people living with ALS and their families, there are so many “what ifs” that it can be overwhelming, and sometimes it can feel impossible to figure out where to start.
Among those “what ifs” are how everyone will be able to live day-to-day, and how they can live where they feel the most at home: in their own home.
“I think the most challenging aspect of it is that we've heard a lot of people say, ‘You don't know what you don't know,’” Michelle said. “And so sometimes people are fearful to even approach the idea because they think that remodeling their home is going to be the necessary thing to continue to access it, and that might be financially impossible.”
The steps people can take to both remain in and enjoy their homes is of vital importance to the quality of life for both people living with ALS and their families, as our recent ALS Focus Mobility at Home Survey detailed. Among the benefits they noted were the ability to spend time with family and friends and the ability to continue to participate in activities they enjoy.
As for what changes might be needed, Michelle notes that those will be different for each family, and can also change over time. “Sometimes adjustments to your home are tiny things like rearranging the furniture or keeping items that you use every day in a place that are easy to access,” she said. “Anywhere from adding a piece of adaptive equipment to make a bathroom or entry easier, all the way to doing a dramatic remodel in your home.”
Making the right modifications to the home environment can help individuals living with ALS stay safe and retain their independence for as long as possible, and having access to people with the knowledge and experience available to help can make all the difference.
“(We) actually have a program that allows a professional that has knowledge not only of home modifications, not only about equipment that exists, but also about ALS and the typical challenges that people experience,” Michelle said. “(We) offer a program called the Virtual Home Safety and Modification Assessment, and that is at no cost to people registered with the ALS Association. It allows someone to virtually visit a home and help identify possible solutions that fit within the structure of the home that might help eliminate some of those challenges or help manage them.”
For people living with ALS and their families, finding out that what they hoped might be possible is in fact doable can make a huge difference. “I think the thing that keeps me passionate about being a part of doing those assessments is when people respond with, ‘I didn't even know that thing existed and it's exactly what I need to do the thing that I want to do,’” Michelle said.
While the options available for people with ALS have expanded greatly since the Ice Bucket Challenge 10 years ago, Michelle believes the future will bring even more changes, helping make ALS livable for everyone, everywhere, until we can cure it.
“What gives me hope?” Michelle said. “(S)eeing all of the technology and all of the research that is continuing to progress, and also seeing that affordability and accessibility of solutions, whether it's technology solutions or equipment solutions, is just getting better and better and better. And so, without necessarily a large pocketbook, you can do a lot of things to continue to do what you want to do.”
For more information about our Virtual Home Safety and Modification Assessment Program, call us at 800-782-4747 or email us at [email protected].
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