Amyotrophic Lateral Sclerosis (ALS)
What is amyotrophic lateral sclerosis?
Amyotrophic lateral sclerosis (ALS) is a gradual wasting away of nerve cells (motor neurons) in the brain and spinal cord. These nerve cells control the muscles that allow movement. As ALS gets worse, it often becomes harder to walk, speak, eat, swallow, and breathe. But some people live for many years, even decades, after they learn that they have ALS.
Finding out that you have ALS may be overwhelming. You may feel many emotions and may need some help coping. Seek out family, friends, and counselors for support. Some treatments for ALS may slow the progress of the disease. There are also medicines to help with symptoms. These include medicines to prevent muscle cramps or stiffness, improve appetite, and relieve depression and pain.
ALS is also known as Lou Gehrig's disease or motor neuron disease.
What causes it?
Doctors don't know what causes ALS. Sometimes ALS runs in families.
What are the symptoms?
The first sign of ALS is often weakness in one leg, one hand, or the face. Or it can be having a hard time talking or swallowing. The weakness slowly spreads to both arms and both legs. This happens because as the motor neurons slowly die, they stop sending signals to the muscles. So the muscles don't have anything telling them to move. Over time, with no signals from the motor neurons telling the muscles to move, the muscles get weaker and smaller.
Over time, ALS also causes:
- Muscle twitching.
- Trouble using your hands and fingers to do tasks.
- Problems with speaking, swallowing, eating, walking, and breathing.
- Problems with memory and thinking.
- Changes in personality.
ALS doesn't cause numbness or loss of feeling.
How is it diagnosed?
Your doctor will do a physical exam and ask about your symptoms and past health. You'll also have tests that show how your muscles and nerves are working.
Having muscle weakness, fatigue, stiffness, and twitching doesn't mean that you have ALS. Those symptoms can also be caused by other conditions.
It can be hard for your doctor to tell if you have ALS. It may not be clear that you have the disease until symptoms get worse or until your doctor has done more testing.
Tests to confirm ALS or look for other causes of your symptoms include:
If your doctor thinks that you have ALS, you'll be referred to a neurologist to make sure.
How is ALS treated?
There is no cure for ALS, but treatment can help you stay strong and independent for as long as possible. Treatment may include:
- Physical and occupational therapy.
These therapies can help you stay strong and make the most of the abilities you still have.
- Speech therapy.
This can help you with coughing, swallowing, and talking after weakness in the face, throat, and chest begins.
- Supportive devices and equipment.
These can help you stay mobile, communicate, and do daily tasks like bathing, eating, and dressing. Examples include a cane, a walker, a wheelchair, ramps, handrails, and foot or ankle braces.
These may help slow the progression of ALS, relieve your symptoms, and keep you comfortable.
- A feeding tube.
This can help you get enough nutrition to stay strong as long as you can.
- Breathing devices.
They can help you breathe more easily as your chest muscles weaken.
Palliative care is a type of care for people who have a serious illness. It's different from care to cure your illness, called curative treatment. Palliative care provides an extra layer of support that can improve your quality of life—not just in your body, but also in your mind and spirit. Sometimes palliative care is combined with curative treatment.
The kind of care you get depends on what you need. Your goals guide your care. You can get both palliative care and care to treat your illness. You don't have to choose one or the other.
Palliative care can help you manage symptoms, pain, or side effects from treatment. It may help you and those close to you better understand your illness, talk more openly about your feelings, or decide what treatment you want or don't want. It can also help you communicate better with your doctors, nurses, family, and friends.
How can you care for yourself?
- Exercise and stretch your muscles as long as you can. Talk to a physical therapist about exercises you can do.
- Eat small, frequent meals. Choose soft foods that are easy to swallow. Try to sit up when you eat. Eat slowly.
- Learn about devices that can help you avoid injury and stay independent:
- A neck (cervical) collar can support your head if the neck muscles get weak.
- Foot and ankle braces, a cane, a walker, or a wheelchair can help you move around.
- A ramp over stairs can allow you to get into and out of your house in a wheelchair.
- Handrails or a shower seat can keep you from falling in the shower. A higher toilet seat can help you go to the bathroom by yourself.
- If you have trouble talking, a voice amplifier or an erasable writing pad can help you communicate.
- Consider joining a support group. Sharing your experiences with other people who have the same problem may help you learn more and cope better.
- Be safe with medicines. Take your medicines exactly as prescribed. Call your doctor if you think you are having a problem with your medicine.
- If you have not already done so, prepare a list of advance directives. These are instructions to your doctor and family members about what kind of care you want if you become unable to speak or express yourself.
What decisions will you face as ALS progresses?
How quickly ALS gets worse is different for everyone. But over time, people who have ALS gradually become more disabled. In most cases, death will occur within 3 to 5 years after symptoms begin, although some people do live for many years, even decades.
Breathing problems and problems with swallowing and getting enough food are the most common serious problems from ALS. As the muscles in the throat and chest weaken, swallowing, coughing, and breathing problems tend to get worse. These problems can lead to injury or illness and, over time, to death. Respiratory failure is the most common cause of death
As ALS symptoms get worse (progress), you may have to choose which treatments you want. For example, would you consider using a machine to help you breathe? Would you want a feeding tube placed in your stomach? How much treatment you want is a personal choice that only you and your loved ones can make.
As you make these choices, keep in mind that what's right for one person may not feel right for another. It's also okay to revisit your choices throughout the course of the disease. You may change your mind over time. Be sure to talk about your treatment options and share your concerns with your doctor.