By Brian Massie, A Watchman on the Wall.
We received an email asking us to consider publishing the following article. If it helps someone, we are “all-in”.
Modifying a Home for a Loved One with ALS
September 14, 2023
Photo by bernardbodo, Adobe
Living with Amyotrophic Lateral Sclerosis (ALS) is a profound challenge faced by thousands across the country. At any given time, an estimated 30,000 people are navigating life with ALS in the United States, with roughly 1 in 400 people expected to develop this condition during their lifetimes. Age plays a significant factor, with most diagnoses occurring between the ages of 55 and 75. Life expectancy after the onset of symptoms is two to five years.
The diagnosis of ALS leads to an urgent need to adapt and overcome daily living obstacles. Modifying a home for someone with ALS isn’t just a considerate gesture — it’s a vital step towards ensuring safety, comfort, and enhanced quality of life.
In this article, we’ll highlight a range of home modifications that empower those with ALS and their caregivers to create a living environment to meet ALS’s unique challenges. Through understanding and action, we can help bridge the gap between challenge and comfort.
When we talk about ALS, we’re referring to a condition that profoundly impacts the body’s muscles. Imagine your muscles weakening over time to a point where simple actions like standing, walking, or even just lifting a cup become impossible. This muscle degeneration is a core symptom of ALS, leaving individuals reliant on external support for even basic movements like getting out of bed.
A primary defense against the advance of ALS is rehabilitation. Customized to each individual, rehabilitation plays a pivotal role in managing the condition, equipping those affected with strategies and support to navigate their daily lives.
In the following sections, we’ll explore helpful home modifications for people with ALS. It’s important to remember that ALS is a progressive disease, which means the patient’s needs will change over time — so home modifications should be flexible and easily adaptable to the patient’s changing abilities.
The kitchen is often the heart of the home, and it’s important to make sure it’s accessible and functional for people with ALS. Here are some modifications to create a kitchen that is a haven of independence for ALS patients:
- Lowered counters and cabinets: This will make it easier for people with ALS to reach their food and utensils.
- Roll-under sink: A roll-under sink can allow people with ALS to maneuver their wheelchairs under the sink so they don’t have to transfer to a different surface to wash their hands or dishes.
- Cooktops with front controls: Cooktops with front controls can eliminate the need for people with ALS to reach over hot burners to adjust the stove.
- Adaptive kitchen tools: A variety of adaptive kitchen tools can make it easier for people with ALS to prepare and eat meals.
- Strategically placed grab bars: Grab bars can be placed in strategic locations around the kitchen to provide a secure grip for people with ALS.
Photo by pressmaster, Adobe
The bedroom is a sanctuary — a place to rest and rejuvenate. For people with ALS, it’s important to make sure the bedroom is comfortable and safe. Here are some modifications to create a bedroom that’s a nurturing haven for people with ALS:
- Adjustable bed: An adjustable bed can be raised or lowered to make it easier for people with ALS to get into and out of bed. It can also be tilted to a comfortable position for sleeping or watching TV.
- Ceiling lift: A ceiling lift can be used to transfer people with ALS from their beds to wheelchairs or commodes. This can help to reduce the risk of falls and injuries.
- Grab bars: Grab bars can be installed next to the bed to provide a secure grip when getting into and out of bed. They can also be used for support when walking around the bedroom.
- Well-lit ambiance: A well-lighted bedroom is important for safety and comfort. It’s important to make sure there’s enough light to see clearly, but not so much light that it’s too bright or harsh.
- No more trip hazards: Loose rugs and carpets can be a tripping hazard for people with ALS. It’s critical to remove these hazards from the bedroom so the floor is smooth and free of obstacles.
- Serene environment: A white noise machine can block out disruptive sounds and create a calm environment — helpful for people with ALS who are sensitive to noise or disturbances.
Bathrooms can be a challenge for people with ALS, as the space is often constrained and slippery. However, there are a number of modifications that can be made to make bathrooms more accessible and safe. Here are a few ideas:
- Wider doorways: Wider doorways make it easier for people with wheelchairs to get in and out of the bathroom. This can make daily routines more manageable and less complicated.
- Roll-in showers: These allow people with wheelchairs to roll directly into the shower without having to transfer to a different surface. This can reduce the risk of falls and injuries.
- Grab bars: Grab bars provide a secure grip for people getting in and out of the shower or using the toilet, promoting independence and safety.
- Elevated toilet seat: An elevated toilet seat makes it easier for people to sit and stand. This can help reduce strain on muscles and joints.
- Non-slip floor mats: Non-slip floor mats help to prevent falls in wet areas. This can help keep people safe and secure in the bathroom.
- Adaptive bathing tools: Adaptive bathing tools such as long-handled sponges and shower chairs can make bathing easier and more comfortable.
Additional Home Modifications
Beyond specific modifications to bedrooms, bathrooms, and kitchens, the overall design of a home can play a major role in ensuring ease of movement and safety for people with ALS. Here are some general changes to homes that can greatly improve the day-to-day living experience:
- Streamlined flooring: Investing in uniform, non-slip flooring throughout the home can help prevent falls and make it easier to move around.
- Bright and efficient lighting: Proper lighting is not just about aesthetics — it’s also about safety. Make sure the home is well-lit, reducing shadows and dark areas that pose navigational challenges. If natural lighting is lacking in the home, it could be a good time to consider adding or replacing windows throughout the home.
- Wheelchair accessibility: One of the most important modifications is the addition of wheelchair ramps or lifts, especially at main entrances. This makes it easier and safer for people with ALS to get in and out of the home
By taking a holistic approach to home modifications, we can create a safe and accessible space where people with ALS can live with greater autonomy and comfort.
For people living with ALS, maintaining independence and communication is essential. Adaptive technology, especially in the realm of smart home features, can help people with ALS live more independently and comfortably. Here are a few examples of how smart home technology can benefit people with ALS:
- Voice-activated assistants: Devices like Amazon Alexa and Google Home can control smart devices like lights, thermostats, and locks. This can be helpful for people with limited mobility in their hands, as they can use their voices to control their surroundings.
- Smart thermostats: Smart thermostats can automatically adjust the temperature in the home based on the user’s preferences, the time of day, or the weather outside. This can help people with ALS save energy and stay comfortable without having to manually adjust the thermostat.
- Smart locks: Smart locks can be opened or closed using voice commands or a smartphone app. This can be helpful for people with ALS who have difficulty using traditional door locks.
- Smart lights: Smart lights can be turned on or off using voice commands or a smartphone app. This can be helpful for people with ALS who have difficulty reaching light switches.
- Smart appliances: Some smart appliances, such as ovens and washing machines, can be programmed to start or stop using voice commands. This can be helpful for people with ALS who have difficulty using traditional appliances.
Integrating smart home technology into the homes of those with ALS can help them live more independently and comfortably, giving them the power to control their environment even as their condition progresses.
Emergencies can be challenging for anyone, but for people with ALS, the challenges are magnified. However, by being prepared, people with ALS can feel more in control and assured if an emergency happens. Below are some tips for creating an emergency preparedness plan for people with ALS.
Have A Backup Plan For Power Outages
Many people with ALS rely on medical equipment that needs electricity, so it’s important to have a backup plan in place in case of a power outage. This could include having a generator or solar panels to provide power or having a list of local medical facilities that are equipped to handle ALS patients.
Have A Communication Plan
If you have ALS and have difficulty speaking, it’s important to have a way to communicate in an emergency. This could include having a written communication board, a voice-activated device, or a signal mirror.
Plan Your Evacuation Route
If you live in an area prone to natural disasters, it’s critical to plan your evacuation route in advance. This will help you get to safety quickly and easily, even if you have limited mobility.
Have A First Aid Kit
It’s always a good idea to have a first aid kit on hand, but it’s especially important for people with ALS. The kit should include items to treat common injuries as well as any needed medications.
Make Arrangements For Your Pets
If you have pets, make sure you have a plan for them in case of an emergency. This could include having a friend or family member take care of them or placing them in a pet boarding facility.
Work With Your Healthcare Provider
Your healthcare provider can help you create an emergency plan specific to your needs. They can also provide information about local resources that may be helpful in an emergency.
Resources for Individuals with ALS and Their Families
The journey through ALS can be challenging, but there are many organizations that offer support and resources to help people with ALS and their families. Here are a few of the most well-known and respected organizations:
- ALS Association: The ALS Association is a national organization that provides a wide range of services to people with ALS and their families, including financial assistance, home modifications, and emotional support.
- The Les Turner ALS Foundation: The Les Turner ALS Foundation is a nonprofit organization that, as stated in its mission, focuses on providing comprehensive care and support to people living with ALS and their families so they can confidently navigate the disease. The foundation also works diligently to advance scientific research for the prevention, treatment, and cure of ALS.
- Muscular Dystrophy Association: This is a national organization that supports people with ALS and other neuromuscular diseases. It offers financial assistance, medical equipment, and support groups.
- ALS Therapy Development Institute (ALS TDI): ALS TDI is the largest drug discovery lab in the world focused solely on finding treatments for ALS. ALS TDI is dedicated to discovering drugs until all people with ALS have effective treatments. They also formed the ALS Research Collaborative (ARC), a program that collects data from people with ALS and shares it with researchers around the world.
- ALS Hope Foundation: This nonprofit funds the MDA/ALS Center of Hope and the Neuromuscular Research Laboratory. The foundation also provides educational events about ALS and about the progress being made toward finding a cure for ALS along with supporting “programs for people with ALS and their caregivers that optimize care and promote independence.”
- I AM ALS: I AM ALS is a non-profit organization that is dedicated to empowering and mobilizing patients of ALS by providing vital resources and working to revolutionize the search for a cure. The organization provides support groups for patients, one on one peer support, and caregiver support resources.
These organizations are invaluable resources for people with ALS and their families. By taking advantage of available support and assistance, people with ALS can better manage the challenges of their disease and live fulfilling lives.
Living with ALS is a complex and challenging journey. It requires more than just medical care — it also requires a holistic approach that addresses the physical, emotional, and logistical aspects of life. This article highlights some of the resources, modifications, and technological aids that can help people with ALS live more comfortably and independently.
With the right preparation and support, people with ALS can face this condition with hope and determination. By taking steps to optimize their environment and well-being, we can make a significant difference in the quality of their lives.