A diagnosis of amyotrophic lateral sclerosis, or ALS, can be overwhelming -- and that’s a normal reaction. You might not know what to expect. Give yourself time to absorb and adjust to the news.
ALS, also called Lou Gehrig’s disease, is a disease that affects your motor neurons. These are nerves in your brain and spinal cord that direct your muscles to contract so you can walk, talk, eat, and breathe. As motor neurons die, you'll have a harder and harder time doing these and other activities.
Right now, there is no cure for ALS. And it is progressive, meaning it gets worse with time. It's hard to predict what your future will be, because ALS is so different for everyone.
Most people live for at least 3 years after their diagnosis. Some people live up to 10 years. As new medicines and treatments for symptoms become available, people will live longer and longer with the disease.
Your health care team can help you understand what to expect. A doctor who specializes in ALS will give you access to the latest treatment options, so you'll have the best possible odds.
What Happens When You Have ALS?
Normally, motor neurons carry signals from your brain to your muscles to tell them to move. As ALS causes your motor neurons to die, you start to lose control over your muscle movements.
At first, you might be less steady on your feet than usual. ALS can make it harder to do anything that requires fine movement, such as picking up a pencil or turning a key in a lock. Your hands may feel weak. Or, your muscles might twitch.
Over time, you'll lose control over the muscles that help you walk, talk, swallow, and breathe. You'll still be able to think, see, hear, smell, touch, taste, and use the bathroom. But you'll need help with basic tasks such as getting dressed, eating, or showering.
Your condition might get worse quickly or slowly. The doctors and other members of your medical team will help you understand how it has progressed and what you can expect.
What Can I Do?
Though ALS can't be cured, you can do a lot to help yourself feel better.
First, learn as much as you can about the disease. Work with your whole medical team to make sure you do everything you can to manage it.
Your team might include these professionals:
- A physical therapist can teach you exercises to keep your muscles strong.
- A speech and language therapist can show you ways to speak more clearly.
- An occupational therapist can offer you tools and ways to help you get around more easily.
- A dietitian can help you plan nutritious meals with the right amount of calories, and choose foods that are easier to chew and swallow.
- A respiratory therapist can teach you exercises to help you breathe more easily.
- A therapist can help you cope with the emotional issues that come with having ALS.
Two drugs -- edaravone (Radicava) and riluzole (Rilutek) -- are FDA-approved to treat ALS. They are not a cure, but if you start taking either of them soon after you're diagnosed, they could help you live longer.
Researchers are testing other new ALS treatments in clinical trials. People who take part in these trials get to try medicines and other treatments before they're available to everyone else. Ask your doctor or check with the ALS Association to find out if you can join any of these studies.
Another thing you can do is to join an ALS support group.
You'll meet other people with ALS, find out about resources that can help you, and learn tips from people who have experience with the disease. You can find a support group through your hospital or the nearest ALS Association chapter.