Your home is your sanctuary, but if you’ve recently been diagnosed with amyotrophic lateral sclerosis (ALS), it may feel like that sanctuary isn’t as safe as it used to be. As the illness progresses, it can become harder to move around your home and do the daily tasks you used to do.
Because ALS is a disease that affects motor function, navigating spaces that do not have enough room to get around can be challenging. But there’s no way around it. As the condition progresses, you will need to address home modifications. They may be minor at first but will be more drastic later. Modifications will feel significant because they are changes to your home – no matter how small or large the changes may be.
In addition to home modifications, there are a few techniques you can use to make it easier to get around when you leave your home.
What is ALS?
Amyotrophic lateral sclerosis (ALS) is a progressive neurodegenerative disease that affects the nerve cells in the brain and spinal cord. According to the ALS Association, the term amyotrophic comes from the Greek: “A” means no, “myo” means muscle, and “trophic” means nourishment. In short, that’s exactly what ALS is—the muscles don’t get enough or any nourishment and as a result, the muscle begins to waste away.
The word “lateral” means to the side and refers to the locations in the spinal cord that are affected by ALS. The nerve cells in these areas signal and control the muscles. “Sclerosis” means hardened and refers to scarring or hardening of the spinal cord in advanced ALS.
There is no single known cause for ALS, but there can be several factors that increase someone’s risk of getting the disease, such as genetics or environmental factors.
Approximately four to six people per every 100,000 are living with ALS, with about 6,000 new diagnoses each year. Most people develop the disease between the ages of 40 and 70, but people in their twenties and thirties and those over 70 can get it too. ALS is 20% more common in men than women, but as age increases, the occurrence of new cases becomes equal.
About 90% of cases of ALS are sporadic, meaning there is no family history of the disease. This means only 10% of cases are familial, meaning two or more family members have ALS. A common misbelief is that only familial ALS is genetic, but both familial and sporadic ALS may stem from genetics.
How can I adapt my living space if I have ALS?
In the initial stages of ALS, you may only need to make minor modifications to your home. But as the disease progresses, you will have to make more significant adjustments. Before you start making any modifications, it is important to figure out your short- and long-term priorities. You’ll also want to take your budget into consideration, as some modifications may be more expensive than others.
Some of the areas you’ll need to consider when making modifications to your home include:
- Home entry — You may need assistance getting into and out of your home as your ALS progresses. It may be helpful to get a ramp or wheelchair lift installed. You can use temporary metal ramps that are lightweight and easy to move, or you may need a permanent wooden or concrete ramp. While a more custom solution may fit your needs, they’re also more expensive.
- Interior — You may need to make modifications inside your home. You may consider making doorways wider to fit a wheelchair or getting rid of carpeting or rugs, so they don’t become tripping hazards. If you live in a multi-story home, you will also need to make modifications so you can go up and downstairs. If your budget allows it, you can install a stairlift. Or it might be easier to modify the first floor so you don’t have to go up and downstairs at all. You will need to rearrange your furniture to create open space for a wheelchair to move freely.
- Bathroom — Adding grab bars around the toilet and in or near the shower can be helpful for preventing falls. You may also want to add a shower seat so you can sit down to bathe if you do not have a tub and standing becomes too difficult or hazardous. A handheld showerhead can make it easier for you to rinse off while seated. A bidet can help with hygiene and cleanliness if there is decreased mobility or strength.
- Bedroom — As your ALS progresses, you may spend more time in your bedroom. It’s important to make it as comfortable and accessible as possible. You may want to upgrade your mattress to an adjustable one that makes it easier to get in and out of bed and allows you to sit up. If you are in the late or end stages of the disease, you may consider a hospital bed. You will need to make space for medical equipment, as well as equipment to get in and out of bed.
- Environmental controls — Smart home technology can make life with ALS much easier. This can include anything from thermostats to lighting to TV control that you can easily access from your phone or tablet.
While you want your home to be accessible, it is equally important to make sure it is safe. A home safety evaluation assesses the risks in your home. If you are on Medicare, your primary care provider can order an assessment for you. If you are not on Medicare, ALS clinics can provide home safety evaluations by an occupational or physical therapist.
Some of the features a home safety evaluation assesses include:
- Lighting — Is there adequate lighting throughout the home? Are light switches at the entrance to each room?
- Walkways to and around the house — Are the walkways smooth? Do they have handrails?
- Entryways — Have all tripping hazards been removed? Is the entryway wide enough to accommodate a walker or wheelchair?
- Hallways — Are the hallways free of clutter and tripping hazards? Are carpet runners taped or tacked down
- Driveways — Is the driveway smooth and evenly paved? Does it transition smoothly into surrounding surfaces, such as the yard?
- Doors and doorways — Do all doors open easily? Are the latches and handles in good condition and easy to use?
- Stairs and steps — Are the stairs and steps equal height? Are stair treads sturdy and level? Do they have sturdy rails on both sides, and do they continue onto landings?
- Decks, porches, and landings — Have all tripping hazards been removed? Are there barriers to prevent someone from falling off?
You will want to go room by room and address any safety or accessibility issues. For example:
- Bathroom—Is there a non-slip bathmat in the tub? Is the sink wheelchair accessible, or is it low enough for someone to sit at? Are the faucets clearly marked hot and cold, and easy to use? Is the toilet seat in good condition and securely fastened?
- Kitchen—Are the faucets easily accessible? Are frequently used items visible and easy to reach? Are burners and knobs clearly labeled and easy to use? Is there a fire extinguisher and are curtains, towels, and other flammable objects away from the range?
- Bedrooms—Is there support for getting in and out of bed? Is there a light at the entrance to the room? Is there a clear, unobstructed path through the room? Are curtains and bed covers off the floor so they aren’t tripping hazards? Are the windows easy to open and close? Are there assistive walking devices within reach of the bed?
- Living room—Is furniture stable? Do tables have rounded edges that are clearly visible? Do rugs have anti-skid backing? Are electrical cords running behind furniture and not across the floor or under a rug?
An evaluation may also have questions related to cognitive concerns. About 35% of people with ALS experience some cognitive impairment with the disease. These questions might include:
- Are off-limits areas alarmed?
- Can all windows be securely locked?
- Have poisonous plants around the house been removed?
- Are prescription and over-the-counter medications locked up or out of reach?
- Are there security locks on exterior doors?
- Is there a key hidden outside in case of a lockout?
- Are unused electrical outlets and cabinets childproofed?
How can I adapt my daily activities?
You will likely have to adjust your daily activities as your ALS progresses. As it gets more difficult to move around, you may need to use a walker, wheelchair, or powerchair outside of your home. If this gets too taxing, you might consider using meal or grocery delivery services, so you don’t have to go shopping as often. Laundry and cleaning services can also be used if these tasks become too difficult for you to complete on your own and don’t have friends or family members who can assist you.
As your needs grow, you may consider hiring a personal care assistant (PCA). A PCA can assist you with taking medication, mobility, and transfers (such as getting in and out of bed, or into the shower), bathing, and dressing. Therapy services, like physical and occupational therapy, can help to maintain and regain strength so you can perform everyday tasks.
There are several daily living aids that can help make everyday activities like buttoning a shirt or unlocking a door much easier. These include:
- Handwriting aids
- Button hooks
- Zipper pulls
- Jar openers
- Mobile Arm Supports (MAS)
Speech and communication can get more difficult as ALS progresses because of weakness in the tongue, palate, and lips. Assistive technology such as augmentative, alternative communication (AAC) and speech generating devices (SGD) can be helpful for communicating with family members and caregivers. These devices are easy to obtain and are inexpensive.
Get the support you need
Learning to navigate an ALS diagnosis is challenging, especially when you have to make modifications to your home. Thankfully, you are not alone. At PatientsLikeMe, there are over 19,000 members living with ALS and understand what you are going through. Join the conversation to learn how other people with ALS have modified their homes and are managing their condition.