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Living with ALS

Information, shared experiences and research connections for people living with ALS and those who support them.

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Understanding ALS

ALS is a disease that affects motor neurons, the nerve cells that control muscle movement, so muscles slowly become weaker over time.

Most cases happen at random with no family history, while about 1 in 10 cases run in families; ALS gets worse over time, though how fast it changes is different for each person.

Signs & symptoms

Early signs often show up in the muscles first and can include:

  • Muscle twitches, cramps or stiffness
  • Weakness in an arm, a leg or the neck
  • Slurred or nasal speech
  • Trouble chewing or swallowing
  • Muscle loss and weight loss
  • Breathing problems as the disease changes

Tell your care team about new or changing symptoms.

Diagnosis

  1. Exam and history

    A doctor, often a neurologist, asks about your symptoms and checks your reflexes, muscle strength and other responses.

  2. Nerve and muscle tests

    Tests such as electromyography (EMG) show how well your nerves and muscles are working.

  3. Imaging and other tests

    There is no single test for ALS, so scans like MRI and other tests help rule out conditions that can look similar; genetic testing may be discussed in some cases.

Care & treatment

Care team
Many people get care from a team that can include doctors, nurses, therapists, nutritionists and social workers.
Treatment
There is no cure yet, but some treatments may slow the disease, improve quality of life and help people live longer.
Support
Physical and speech therapy, nutrition help and breathing support, such as a mask-based breathing device, can help with daily life as needs change.

Discuss benefits, risks and follow-up with your care team.

Everyday life

Small habits can make visits and planning easier:

  • Keep a simple log of changes in speech, swallowing, breathing and strength to share at visits.
  • Ask about therapy, equipment and communication tools early so they are ready when you need them.
  • Keep a list of your care team, medicines and upcoming appointments in one place for family and caregivers.
Bring these questions to your next doctor visit
Which members of an ALS care team should I be seeing, and how often?
What changes in breathing, swallowing or speech should I report right away?
Would genetic testing or a clinical trial make sense for me?
Sources: NIH GARD — Amyotrophic lateral sclerosis · NINDS — Amyotrophic lateral sclerosis (ALS)Page drafted from NIH sources · Know Rare editorial review pending. General information to support conversations with your care team.

You are more than your diagnosis

Perspectives from people navigating life with ALS.

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Embrace the Ask: How to Seek The Support You Need

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Explore research for ALS

Explore actively recruiting ALS studies with HealthSpark.

HealthSpark

Find actively recruiting studies for ALS with HealthSpark. Share your city to explore research near you.

  • Phase 3 studies first, with nearest research center
  • Study information from ClinicalTrials.gov
  • Eligibility is confirmed by the study team

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Powered by HealthSpark, our AI chat helper · Study information from ClinicalTrials.gov · Eligibility is confirmed by the study team.

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HealthStoryfor ALS

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HealthStory evolves private journaling with a living AI journal that talks back and asks thoughtful questions, helping you capture your ALS experiences more deeply and prepare for better conversations with your doctors and care team.

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