Amyotrophic Lateral Sclerosis (ALS) First Steps: What to Do After a Diagnosis

Learn about treatment options, the value of the National Registry, and why you should consider joining clinical trials or research projects after an ALS diagnosis.

By Ability Central

23 January, 2024

A pink-tinted image of a tech in black scrubs starting an MRI scan for a man covered with a thick brown blanket

An amyotrophic lateral sclerosis (ALS) diagnosis brings with it an overwhelming number of questions and choices. However, there are steps you can take in the short term to make life easier as you prepare for the future. 

In this article, Ability Central shares the first steps after receiving a diagnosis of ALS (also known as Lou Gehrig’s disease). We answer your most pressing questions, including:

  • What treatment options are available for ALS?
  • Should I register with the National ALS Registry? 
  • What are the pros and cons of ALS research participation?
  • What care will I need in the future as ALS symptoms progress?
  • Where can I get more information about ALS? 


What treatment options are available for amyotrophic lateral sclerosis (ALS)?

At this time, there is no cure for ALS. Instead, ALS treatment focuses on slowing the progression of symptoms and improving quality of life for as long as possible. The most common treatment for ALS is medication. 

ALS medications generally have three goals: symptom management, prolonging life, or gene therapy. For a list of approved ALS medications, check out this list from the FDA.  

In addition to medication, some of the most common ALS treatments include:

  • Physical and occupational therapy to maintain muscle function and motor skills for as long as possible.
  • Low-impact exercise (in moderation) to strengthen and maintain muscles. Exercises might include swimming, walking, or stretching. 
  • Heat or whirlpool therapy to help relieve muscle cramping.
  • Speech therapy to improve communication. Speech specialists can also help people with ALS learn to use assistive communication devices like speech-generating software or communication boards.
  • Respiratory therapy to strengthen the muscles used for breathing. As ALS progresses, some people need non-invasive ventilation, a respiratory therapy that reduces the effort needed to take deep breaths. This takes the form of a portable machine with a mask attachment that can be used intermittently.
  • Diet and nutritional therapies for weight management. Many people with ALS struggle to get enough nutrients, especially when chewing and swallowing becomes difficult. 

See Symptoms and Stages of Amyotrophic Lateral Sclerosis (ALS) for more information on Lou Gehrig’s disease progression.


Should I register with the National ALS Registry?

The Center for Disease Control and Prevention's (CDC) Agency for Toxic Substances and Disease Registry (ATSDR) created the National ALS Registry to collect, manage, and analyze data about people with ALS in the United States. Data about ALS cases around the country contributes to research toward a cure.

This registry tracks all of the following:

  • The number of ALS cases in the US.
  • Demographics of those affected by ALS.
  • Occupational and environmental exposure data, like military service history or exposure to various toxins.  

This information allows the CDC to learn about potential risk factors and notify participants about research opportunities. 

See the CDC site for more information on how to add your name to the registry.


What are the pros and cons of ALS research participation?

Currently, researchers are working hard to find a cure for ALS. There are two primary ways clinicians and scientists learn more about a disease and find more effective treatments: clinical trials and research.

A clinical trial may accelerate the development of new treatments, increase knowledge about a disease, or even lead to a cure. However, participating in clinical trials also comes with risk. While some trials may provide participants with direct medical benefits, untested treatments carry the risk of making symptoms worse. Always discuss your options with your doctor and your loved ones before starting an experimental treatment.

Research participation is another option if a person with ALS does not qualify for a clinical trial or does not want to take unproven medications. 

For example, the ALS Association uses data and surveys from the CDC’s National ALS Registry to understand the disease better. Simply registering your information with the database can bring new insights to ALS researchers. Learn more about ALS Association research on their website.

Current research participation options include:

  • The ALS Families Project focuses on familial ALS, what causes it, and risk factors. Email them to learn more.
  • ALS Focus asks people with ALS and current and past caregivers about their needs and burdens to learn about individual experiences.
  • The Clinical Research in ALS and Related Disorders for Therapeutic Development (CReATe) Consortium is working to advance therapy development for ALS and other related disorders.
  • Northeast Amyotrophic Lateral Sclerosis Consortium (NEALS) maintains a list of current and future clinical trials and research opportunities.
  • The Pre-symptomatic Familial ALS (Pre-fALS) study focuses on finding the markers of ALS before the person becomes symptomatic. 

This is by no means an exhaustive list, and new options for research or clinical trials appear with every innovation. Your doctor’s office or hospital may have a list of current offerings. For more options, use Ability Central’s Service Locator tool to find a nonprofit near you specializing in ALS support and awareness. 


What care will I need in the future as ALS symptoms progress? 

Given the progressive nature of the fatal disease, ALS will eventually lead to disability and death. 

John Hopkins Medicine warns that although a person’s ability to move and breathe independently will be affected, their intelligence and ability to think are often not. This is why it is essential to work closely with your healthcare provider to manage expectations and mental health symptoms as the disease progresses. 

Many people with ALS find themselves quickly reliant on their caregivers for everyday tasks like bathing, eating, and moving. This can be frustrating and frightening for people with ALS and their loved ones alike. Talk therapy, support groups, or simply extra time and assistance can be effective ways to help people living with ALS. 

See Amyotrophic Lateral Sclerosis (ALS): Financial Planning and Long-term Support, for more information.


Where can I get more information about amyotrophic lateral sclerosis (ALS)?

A major part of managing ALS involves creating a comprehensive care team. This might include doctors, caregivers, and specialists like estate planners who can help with end-of-life decisions. 

Many nonprofits offer support for people with ALS, including referrals to support groups, legal professionals, or healthcare providers. Use our Service Locator tool to find a nonprofit near you.

In addition, Ability Central offers multiple resources to learn more about ALS, including:

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