Medical Decisions for People with ALS

When living with ALS, there are some very important medical decisions you will need to make. We recommend studying and discussing your options with your loved ones and ALS clinic or medical team, and then making decisions in advance whenever possible.

Who will be your ALS medical team?

It is very important to find a team of experienced ALS specialists near you. Attending an ALS clinic can improve your quality of life and help you live longer.

Do you want to take approved drugs?

There is no cure for ALS, but there are some approved drugs that can help slow progression. Talk with your doctor and assess the benefits vs burdens of taking these drugs.

Do you want to enroll in a clinical trial?

Clinical trials explore experimental treatments with volunteers who meet certain criteria. You will want to ask questions to find out what each trial entails.

Will you want a feeding tube?

A feeding tube can help you maintain your weight and stay hydrated. After it is placed, you can still eat by mouth as long as you can swallow safely.

Will you want a tracheotomy?

Some people choose to extend their lives by getting a tracheotomy, though it can come at a great cost. It is important to discuss and make this decision in advance.

Why should you fill out advance directives?

These written documents let others know what medical treatment you’d want in the case of an emergency. They can provide peace of mind for you and clarity for your loved ones.

Should you get genetic testing?

Current guidelines state that anyone diagnosed with ALS should be offered genetic testing. Deciding whether or not to test is a highly individual decision.

Learn more about each of these topics at www.youralsguide.com/medical-decisions.