Here are four important things you can do now.
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 free support services, such as one-on-one advice, equipment, support groups, and more. 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.
At no cost, you can meet with a team of ALS specialists once every three months. They will 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. Learn 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. There is a five-month waiting period, so you'll want to apply as soon as possible.
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.
- Read answers to Common Questions. Here you can learn more about things that people with ALS and their caregivers want to know.
For Additional Information
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.
For more in-depth information about ALS and how you can adjust to life with it, we suggest reading these guides from The ALS Association: