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Though there is no cure for ALS, there are a handful of very important medical decisions you will need to make.
These are very personal decisions—what may feel right for one person may not be right for another. Educate yourself on your options now and discuss everything with your loved ones and ALS clinic team well ahead of time. Trying to take an important decision in an emergency situation can result in stress, confusion, and unintended consequences. It is a good idea to create or update your advance directives, which are your wishes for medical treatment in the event that you are unable to communicate them in person at the time. |
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Should I take medication, or participate in a clinical trial?
There are no proven medications or special treatments that will reverse the effects of ALS. The FDA has approved two medications—Rilutek (riluzole) and Radicava (edaravone)—that may slow its effects. In addition to deciding whether to take either medication, you may also choose to participate in a clinical trial that tests the effects of new drugs.
Should I get a feeding tube?
If you are choking or having trouble eating, drinking, swallowing, or maintaining your weight, you may want to consider getting a feeding tube. Most ALS patients elect to get feeding tubes, which help ensure they receive proper nutrition, hydration, and medication. The surgical procedure takes 30 minutes and you can always decide later whether or not you want to use it.
Should I get a tracheotomy and go on ventilation?
If you are having difficulty breathing, you may consider getting a tracheotomy, which creates a surgical opening in your neck that connects to a ventilator. Going on 24/7 breathing support should help you live longer, but there are a number of serious considerations to weigh before taking this irreversible step. Only 10% of Americans with ALS choose this route.
How am I supposed to decide?
These are very personal decisions. We recommend the following to get started:
1. Consult with your ALS clinic team.
This is your team of medical experts. They know you and are monitoring your situation. Ask them questions. Learn about your options. Ask for their opinions and advice.
2. Discuss your medical decisions ahead of time.
Explain your thinking to your loved ones. These conversations may be difficult, and everyone may not agree. But this is better than the alternatives of trying to decide under pressure, losing the capacity to communicate, or leaving it up to your loved ones to try to decide.
3. Update your advance directives.
Make sure your loved ones and doctors know your wishes and have copies of all documents.
This is your team of medical experts. They know you and are monitoring your situation. Ask them questions. Learn about your options. Ask for their opinions and advice.
2. Discuss your medical decisions ahead of time.
Explain your thinking to your loved ones. These conversations may be difficult, and everyone may not agree. But this is better than the alternatives of trying to decide under pressure, losing the capacity to communicate, or leaving it up to your loved ones to try to decide.
3. Update your advance directives.
Make sure your loved ones and doctors know your wishes and have copies of all documents.
