About Amyotrophic Lateral Sclerosis (ALS)

Amyotrophic lateral sclerosis (ALS), also called Lou Gehrig disease, is a nervous system disease. ALS causes a gradual loss of the nerve cells (neurons) that move your voluntary muscles. Voluntary muscles are the muscles you can control, such as the muscles in your arms, legs, and lungs. In ALS, the loss of neurons causes the muscles to eventually stop working and waste away (atrophy).

ALS does not affect the muscles that control your heart, digestive system, bladder, or bowels. ALS cannot be passed from one person to another. There is no cure for ALS, but treatment can help you live longer and improve your quality of life.

CAUSES
The cause of most cases of ALS is not known. A small number of cases are caused by a gene.

RISK FACTORS

  • Having a family history of the disease. A very small number of people with ALS have a family history of the disease. Your risk of developing ALS may be increased if you inherit genes for the disorder.
  • Being a man. Men are affected slightly more than women.
  • Being between the age of 60 and 69. Anyone at any age can get ALS, but people are at greatest risk between these ages.

SIGNS AND SYMPTOMS
Signs and symptoms of ALS start slowly. The first symptoms may include:

  • Cramps.
  • Muscle twitches.
  • Clumsiness.
  • Stiffness.

Over time, signs and symptoms become more noticeable. These may include:

  • Inability to walk.
  • Slurred speech.
  • Trouble swallowing.
  • Inability to move arms or legs.
  • Muscle atrophy. 
  • Involuntary laughing or crying.
  • Trouble breathing.
  • Anxiety and depression.

DIAGNOSIS
Your health care provider may diagnose ALS based on your symptoms and a physical exam. Your health care provider may also do some tests to help make a diagnosis. These may include:

  • Nerve conduction studies. These record muscle activity and check how well your muscle nerves send signals.
  • Genetic testing. You may have this test to check for a genetic cause that may require genetic counseling.
  • Imaging studies of the brain and spinal cord, such as an MRI or CT scan. You may have these to rule out other causes for your symptoms.

You may be diagnosed with ALS if your signs and symptoms get worse over time and involve both the neurons in the brain (upper neurons) and those in the spinal cord (lower neurons). 

TREATMENT
There is no cure for ALS, but treatment can slow down the progression of the disease and improve your quality of life. Treatment may include:

  • Medicines. These may be taken to:
  • Reduce damage to neurons.
  • Reduce muscle cramps or spasms.
  • Relieve anxiety or depression.
  • Occupational and physical therapy to improve quality of life.
  • Speech therapy to improve speech and the ability to swallow.
  • Devices to help you breathe more easily. These may include:
  •  Intermittent or positive pressure ventilation.
  • A diaphragm pacing system.

You may need to work with a team of health care providers that includes doctors, therapists, and nutrition specialists. Together you will come up with a plan for home care to meet your needs. These needs may change over time.

HOME CARE INSTRUCTIONS

  • Do not smoke.
  • Only take medicines as directed by your health care provider.
  •  Eat small meals often. Work with a nutrition specialist to maintain a healthy diet.
  • Exercise daily if you are able. Work with a physical therapist to come up with an exercise program that includes stretching and range-of-motion exercises. Aerobic exercises like swimming or walking can help strengthen muscles that are not affected by ALS.
  • Make your home safe and easy for you to get around.
  • An occupational therapist can show you how to use ramps, braces, or a walker.
  • These devices can help you conserve energy.
  • Make sure you have a strong support system at home.
  • Work with a mental health caregiver if you are struggling with symptoms of anxiety or depression.
  • Work with a social worker to get the support you need.

Your needs may change over time. Work with your health care providers to make sure your needs are being met.

SEEK MEDICAL CARE IF:

  • You have a fever.
  • You are struggling with any part of home care.
  • You are struggling with anxiety, depression, or lack of support at home.

SEEK IMMEDIATE MEDICAL CARE IF:

  • You have a fever for more than 3 days.
  • You cannot swallow food or liquids.
  • You choke on foods or liquids.
  • You have chest pain.
  • You have trouble breathing.

MAKE SURE YOU:

  • Understand these instructions.
  • Will watch your condition.
  • Will get help right away if you are not doing well or get worse.

This information is not intended to replace advice given to you by your health care provider. Make sure you discuss any questions you have with your health care provider.

Chris Dickinson