Care Services FAQ

The care services team at the St. Louis Regional Chapter are the forefront of knowledge and information on ALS and what it looks like to live with the disease in our region. They answer questions from people with ALS and their families on a regular basis as they meet with families at clinics or during home visits. Here are the answers to some of the most common questions they receive.

What should I expect now that I have ALS?

ALS will continue to weaken muscles affecting the ability to walk, talk, swallow and eventually breathe independently. When the breathing muscles become affected, ultimately, people with the disease will need permanent ventilator support to assist with breathing.

As symptoms from the disease progress, people with ALS will need the help of a caregiver to adapt to the changes and loss of ability to do tasks like getting in and out of bed, dressing, bathing and other activities of daily living.

Although the typical survival rate is two to five years, about twenty percent of people with ALS live five years, 10 percent will survive ten years and five percent will live 20 years or more.

Do I need to move?

There are a couple things to consider when it comes to moving. With the addition of different medical equipment needed for ALS, accessibility is necessary to stay in the same home. Home modifications, like a ramp to the door and wider entryways to key rooms, not only make it possible to avoid moving but also reduces risk for injury. Several factors go into considering if home modification is a viable solution to the changes that come with ALS. Click here to learn more about home modifications. (PDF saved in blog folder)

Another element to determining if you need to move is caregiving. There are several options for care available to people with ALS that allow individuals to remain in the home, but nursing facilities or hospice centers are available to help care for someone with ALS, which would require moving. Although most like to maintain their independence for as long as possible, utilizing an out of home facility can be advantageous to those who need it. 

Can I continue exercising with ALS? What kind of exercise regimen should I start?

Although you can still exercise with ALS it will most likely look different from what some are accustomed to doing on a regular basis. Light to moderate intensity exercises, range of motion and stretching exercises are appropriate for those in the early to mid-stages of ALS to maintain strength and endurance. However, high intensity workouts can increase muscle weakness with ALS, and it is vital to not overdue physical activity in an attempt to build muscle. A healthcare professional can provide more information on what would work best for an individual with ALS based on their symptoms.

Read our post, 3 Things a Physical Therapist Wants You to Know, from Elissa Held Bradford, PT, PhD, NCS, MSCS, and physical therapist for the ALS Certified Center of Excellence at Saint Louis University.

What does it mean to be “Vented”? At what point will I need to make that decision?

For a person with ALS to be “vented” means they rely on an external ventilator to help them breathe, requiring a tracheostomy/ tracheotomy which inserts a tube into the windpipe. As the disease progresses and weakens the muscles required for breathing, a breathing support becomes necessary. If a noninvasive breathing support provided by a BiPAP is not enough, people with ALS can choose to be “vented”. Invasive ventilation will not stop or reverse ALS, but will prolong life. It is crucial to understand the option of invasive ventilation and its impact on your life and the life of your family. Click here to learn more https://www.youralsguide.com/tracheotomy-and-ventilation.html

Why are you asking me about feeding tube and vent decisions now?

There are many factors that go into this decision that should be thoroughly considered in advance before the decision needs to be made. Taking the time to think about this decision allows people with ALS and their loved ones to ask questions and discuss the pros and cons with healthcare providers and their care services coordinator. People with ALS should also decide before they have any issues with a noninvasive breathing device.

If you or someone you know has ALS, or, if you’d like to learn more about how you can support families battling the disease, please visit our website at www.alsa-stl.org.

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