Living with ALS: Making Sure Your Home Environment is Safe and “Livable”

Home modification

This is the third in a four-part series highlighting a new Association video series exploring mobility changes people living with ALS face, created to help initiate discussions between individuals living with the disease, their family members, and their care team, and to assist families with planning and informed decision making.

Living with ALS can make tasks that once required little thought or effort a challenge as the disease progresses and mobility declines. Making proactive modifications in your own home can help to prevent potential harms caused by everyday living activities and retain independence for as long as possible during your ALS journey.

Home modifications can be permanent or temporary, low­‐tech or extremely sophisticated. To help address the many questions and concerns people and their families often have, The ALS Association has developed a series of educational videos to introduce and explain strategies to remain safe while living with the disease.

“Ultimately, with this discussion around home adaptations, the true goal here is just being able to maintain your safety as well as maintaining your independence for as long as you can,” said Shannon Terrell, doctor of physical therapy at the Kaiser ALS clinic. “And being able to do things on your own is just so truly valuable and satisfying.”

There are many new technologies and pieces of equipment now available for families to consider. This conversation explores the various options and the importance of planning ahead and seeking the advice of professionals with experience in this area to prevent purchasing items or making changes that may only be a temporary fix.

From barrier-free showers and grab bars to accessible toilets and swing away hinges, this video explains modification options to help people remain as independent as possible, particularly in the bathroom where surfaces are typically hard, and accidents often happen. Learn more about the additional technologies available to help with everyday living in the home.

As the disease progresses and the need for a power wheelchair arises, ramps are typically required to gain access to and from the home. While there are many permanent options to consider using concrete and wood, there are modular and portable ramps available as well. Consulting a professional is recommended to make sure you are getting the proper equipment for your structure and installed by those experienced in this area to ensure safety, proper maintenance and longevity of the options you choose.

Learn how smart home technology can help you turn the lights and television on, raise the temperature in the room, and lock the door in seconds, expending only the effort it takes to tap your phone a few times. The introduction of a digital assistant or smart speaker, such as a Google Home or Amazon Alexa, takes that even further by performing many of these actions with simple voice commands.

More in-depth information is listed with each video, and we strongly encourage you to follow up with your local chapter and clinic team for more information. To continue to learn more about ALS and follow stories about people living with the disease in the community, follow our blog at ALS.org/blog.

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