My ALS Decision Tool™

You can use this tool to learn about your ALS treatment options and make important decisions about your care. As your disease progresses, your ALS care team may recommend treatments like breathing support or a feeding tube to help you stay as healthy and comfortable as possible. Even if you don’t have trouble breathing or eating on your own right now, it’s never too early to start planning ahead for your future care.

As you go through the tool, you’ll learn about some common ALS treatments, answer a few questions to help you think through what is most important to you, and get ready to talk with your ALS care team about your options.

Breathing support

If you are having weakness in the muscles that help you breathe (respiratory muscle weakness), your ALS care team may recommend a type of breathing support device called Non-Invasive Ventilation, or NIV. Symptoms of respiratory muscle weakness may include having less energy, feeling tired all the time, not sleeping well, or feeling short of breath. This tool can help you learn about NIV and decide if it’s right for you.

Nutrition support

If you are having trouble eating, drinking or taking medicine on your own, your ALS care team may recommend a feeding tube to help you get the nutrition you need. This tool can help you learn about using a feeding tube and decide if it’s right for you.

Your next steps

Once you finish exploring this tool, talk to your ALS care team about what you have learned. Together, you can find a treatment plan that is right for you.

To learn more about living with ALS, visit, lesturnerals.org/resources. If you have any questions feel free to contact us at education@lesturnerals.org.

Check back soon for more resources to help you understand your treatment options and make the decision that’s right for you. You can also sign up for email updates from the Les Turner ALS Foundation.

About the Les Turner ALS Foundation

The Les Turner ALS Foundation exists to care for those affected by the disease, guide them to answers, support them and their loved ones and provide hope through scientific research.

The information in this tool is not medical advice. Talk to your ALS care team before making any decisions about your health or treatment. Together, you and your care team can find a treatment plan that works for you.

Acknowledgements

My ALS Decision Tool™ was developed in collaboration with people living with ALS, caregivers, advocates, researchers and clinicians. Dr. Anne Hogden’s MND Patient Decision Support framework and guidance informed the development of this tool.

This decision tool is made possible by generous donations from the Gilbert & Jacqueline Fern Foundation, Biogen, Cytokinetics Communications Fellowship Grant, Novartis Gene Therapies, and other donors to the Les Turner ALS Foundation..

“The decision is yours, whether it's Non-Invasive Ventilation, or anything else, you control your own treatment. It’s important to know and to have all the information. People with ALS must feel like they are losing control, so it’s important to be in control of your treatment.”

--Family member of a person living with ALS

“I like that it sequentially takes you through the thought process.”

– Person living with ALS

Theses resources are made possible by a generous donation from the Gilbert & Jacqueline Fern Foundation and other donors to the Foundation.

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