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  • Home
  • Get Started
    • About ALS
    • Newly Diagnosed
    • People with ALS
    • Veterans with ALS
    • Caregivers
    • Family & Friends
    • Research & Treatment
  • Planning
    • Health Insurance
    • Employment
    • Medical Decisions
    • Care
    • Advance Directives
    • ALS Nutrition
    • Transportation
    • Home Modifications
    • Travel
  • Equipment
    • Overview
    • Braces
    • Home & Daily Living
    • Bathroom
    • Mobility
    • Respiratory
    • Communication
  • Resources
    • Support Services
    • ALS Clinics
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    • ALS Registry
    • Get Involved
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ALS Medical Decisions


Though there is no cure for ALS, there are some very important medical decisions you will need to make. We recommend educating yourself, discussing options with your loved ones and ALS clinic team, and making decisions well ahead of time.

Should I take medication, or participate in a clinical trial?

There are only a few drugs that have been approved to help treat ALS. Two of them may slow the progression of the disease. At this time, there are no drugs that can stop or reverse ALS. In addition to deciding whether to take medication, you may also choose to participate in a clinical trial that tests the effects of new drugs.
Learn more

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.
Learn More

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.
Learn more

How should I decide?

​These are very personal decisions—what may feel right for one person may not be right for another. 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.
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Get Started

About ALS
​Newly Diagnosed
People with ALS
Veterans with ALS
Caregivers
Family & Friends
​​Research & Treatment

Planning

Health Insurance
Employment

Medical Decisions
Care

Advance Directives
​
ALS Nutrition
Transportation

​Home Modifications
​Travel

Equipment

Overview
​
Braces
​Home & Daily Living
Bathroom
Mobility
Respiratory
Communication​

Resources

Support Services
ALS Clinics

Support Groups
​ALS Registry
​Get Involved
Resource list
​Glossary

About

Our Story
Myna's Story
​Our Team
Newsletter
​Contact Us
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