When living with ALS, there are some very important medical decisions you will need to make. We recommend studying and discussing options with your loved ones and ALS clinic or medical team, and then making decisions in advance whenever possible.
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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. Learn more
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Do you want to take approved drugs?There is no cure for ALS, but there are some approved drugs that can modestly slow progression. Talk with your doctor and assess the benefits vs burdens of taking these drugs. Learn more
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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. Learn more
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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. Learn more
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Will you want a tracheotomy?Some people choose to extend their lives by getting a tracheotomy, but it can come at a great cost. It is important to discuss and make this decision well in advance. Learn more
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Why should you fill out advance directives?These 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 loved ones. Learn more
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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
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ALS Values Assessment GuideThis tool can help you and your loved ones learn about potential future challenges and make well-informed decisions based on what is most important to you. You can download this free guide from the Unity Hospice and Palliative Care website.
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