For the Newly Diagnosed

It can be overwhelming, to say the least, when you are diagnosed with ALS. But you do not have to do—or read—everything right now.

Take things one step—and one day—at a time.

Below are four important things you can do now to get started.

1. Contact your local ALS Association chapter.

The ALS Association is the main ALS support organization in the United States. It has local chapters across the country that provide many free support services. All you need to do is call or email.

2. Get a second opinion.

Diagnosing ALS is tricky. It can be a lengthy and frustrating process. Many people have been misdiagnosed. It is wise to get a second opinion from a neurologist who specializes in ALS.

3. Attend an ALS clinic.

A team of ALS specialists can monitor your health, develop an individualized care plan, and make recommendations. Attending clinic can improve your quality of life—and even extend your life.

4. Read about SSDI and Medicare disability benefits.

You do not have to be 65 years old to receive monthly checks through Social Security Disability Insurance and health insurance through Medicare. Most people with ALS qualify for both.

What if I live in a rural area?

The level of support available to you will depend on your state—and where exactly you live. 

Search for local ALS Association chapters and contact the nearest one to ask about support options. Care service coordinators often travel to do home visits.
The Muscular Dystrophy Association (MDA) has an ALS division that supports people with ALS. Contact MDA to find out what support services they can offer you.

​If there is not a certified multidisciplinary ALS clinic near you, there may be other clinics at hospitals, private practices, or universities that specialize in ALS. If you can make the drive to an ALS clinic, it is highly recommended. Ask your local ALS Association chapter if they have transportation grants that can take you to your nearest clinic at no cost. ​​

When you feel ready...

Everyone reacts differently to an ALS diagnosis. Some people prefer to continue with their everyday lives and cross each bridge as it comes. Others want to read everything they can ahead of time. There is no right approach. If you are ready to learn more, here is what we suggest:
​
  • Learn More About ALS. It can be helpful to educate yourself on the disease and know what to expect. But remember that it affects everyone differently.
 
  • Decide how to tell others. This link will take you to an ALS Association manual that discusses how you can tell others—including children. Start on page 11.

  • Plan how you will make ends meet. Planning ahead and learning about things like disability benefits and equipment loan closets can save you thousands of dollars.
 
  • Read our People with ALS page. When you are ready, this page—and the rest of this website—go into much greater detail about things you can do and future needs you may have. Remember that some of the information may not apply to you.
 
We recommend avoiding the temptation to read everything you can find online. Not all information is accurate and you don't want to become so obsessed that ALS takes over your entire life. Be sure to find trusted sources. Beware of scams that offer expensive miracle cures.

Veterans: Learn about your service-connected benefits.