For the Newly Diagnosed

It can be overwhelming, to say the least, when you are diagnosed with ALS. The way you deal with your diagnosis is an individual process. There is no right or wrong way to feel once you have received the news. We suggest taking things one step—and one day—at a time.

You do not need to know or read everything right now. But there are some important things you can do now that will help improve your quality of life in the long run.

1. Get a second opinion.

Most experts recommend getting a second opinion after an initial ALS diagnosis. People can and do get misdiagnosed. It is important to find a neurologist who specializes in ALS so you can be sure of the diagnosis and begin planning accordingly.

2. Find local support services.

One of the hardest parts of coping with ALS is learning how to live with the disease as new challenges arise. Fortunately, there are ALS organizations and specialists across the country who can help you navigate each step of the way.

3. Attend an ALS clinic.

Every ALS clinic has a team of specialists that can monitor your health, develop an individualized care plan, answer questions, and make recommendations. Attending your clinic every few months can improve your quality of life—and even extend your life.

4. Learn about your disability benefits.

You do not have to be 65 years old in order to receive federal disability checks and health insurance. Most ALS patients, regardless of age, qualify for both monthly checks through Social Security Disability Insurance and health insurance coverage through Medicare.

5. Continue learning and planning.

When you feel ready, you can explore this website to learn more about ALS and what you can do. Some people prefer to know everything up front. Others prefer to continue living their daily lives and cross each bridge as it comes. There is no right way to approach it.
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.

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. 

Start by searching for an ALS clinic near you. Also search for your local ALS organization and ask about support options. Care service coordinators sometimes travel to do home visits.
​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, we highly recommended it. Ask your local ALS Association chapter if they have transportation grants that can take you to your nearest clinic at no cost. ​​

What if I am a military veteran?

ALS is considered a service-connected disease, which means that if you have served in the U.S. military for 90 or more consecutive days of active duty, and have been honorably discharged, you will likely be eligible for special service-connected benefits. Learn more.