Also known as Lou Gehrig’s Disease, amyotrophic lateral sclerosis (ALS) is a neurological disorder that affects the nerve cells in the brain and spinal cord that control voluntary muscle movements like walking, talking and chewing.1
The initial symptoms of ALS are usually mild, affecting only 1 area, but, as time goes on, they increase in severity and spread throughout the entire body.2 This is why ALS is referred to as a progressive disease.
At this time, there is no cure for ALS and no effective way to stop or reverse its progression,3 which may vary from person to person.4 Eventually, all patients suffering with ALS progress through these 4 distinct stages over a period of 2 - 5 years:5
1. Early-stage ALS
About two-thirds of ALS patients initially experience effects in the muscles of the hands, forearms, calves and feet. This form of the disease is known as limb-onset ALS. Bulbar-onset ALS affects the other third of patients. Their first symptoms result from weakness in the muscles around the mouth and throat. People in the early stage of ALS may notice the following:
- Buttoning clothes or gripping objects becomes a challenge
- Feeling off balance and tripping frequently
- Swallowing or speaking becomes difficult
- Twitching and cramping muscles
During the early stage, most patients are fairly functional and independent, and care is usually focused on formulating a treatment plan, making medication and therapy decisions and planning ahead for what’s to come.
2. Middle-stage ALS
As muscle weakness becomes more severe and spreads into more regions of the body, ALS progresses into the middle stage, giving rise to symptoms that may include:
- Paralysis of certain muscles
- Need for walker and/or wheelchair to get around
- Inability to drive
- Breathing problems
Middle-stage ALS patients can still move some parts of the body on their own, but mobility starts to become a problem with most people needing help with day-to-day activities. Falls may become common, and patients may have trouble standing up afterward without assistance. Also at this stage, a feeding tube and/or a respirator may be needed to assure adequate nutrition and breathing function.
3. Late-stage ALS
At this stage, most muscles controlled by voluntary movement are paralyzed. Patients have extremely limited or no ability to move on their own and most likely will require assistance with everyday activities. During late-stage ALS:
- Mobility is extremely limited
- Most people require a feeding tube
- Patients can’t communicate without assistance
- Breathing becomes severely impaired
Most late-stage ALS patients require ventilation support because breathing function has declined so significantly.
4. End-stage ALS
Amyotrophic lateral sclerosis is a fatal disease. Most people who have ALS will die—most commonly due to respiratory failure—within approximately 2 - 5 years after symptoms first appear. At this stage:
- Paralysis of voluntary muscles is complete
- Hospice care may be necessary
- Medications may be given to ease pain and anxiety
- Death is usually caused by respiratory complications
ALS patients and their families should plan to make sure that end-of-life care is consistent with their wishes.
Therapies for ALS patients
Even though ALS affects a person’s ability to move, speak and breathe, the following therapies and other forms of support may help as the disease progresses:6
- Breathing care. This may include non-invasive ventilation, which is simply a ventilator with a removable mask, or a tracheostomy, in which a surgeon places a breathing tube in the front of the neck that leads directly to the trachea or windpipe.
- Physical therapy. Licensed therapists help ALS patients with pain, mobility, bracing and equipment to maintain independence as long as possible. Regular exercise and stretching may also be helpful.
- Occupational therapy. Therapists in this discipline assist patients with ways to maintain independence, recommending adaptive equipment and home modifications for safety and accessibility.
- Speech therapy. There are techniques ALS patients can learn to make speech more understandable. The speech therapist may also recommend other ways to communicate, including smartphone apps or an alphabet board.
- Nutritional support. The ALS care team may include a nutritionist who ensures that the patient is eating the right foods. This professional may also recommend a feeding tube when swallowing is no longer possible.
- Psychological and social support. A social worker may also be part of the care team, helping with a variety of physical and emotional needs for the ALS patient and the family.
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Sources:
1“Amyotrophic Lateral Sclerosis (ALS),” National Institute of Neurological Disorders and Stroke, last accessed June 7, 2023,
2Marisa Wexler, MS, “ALS stages and progression timeline,” ALS News Today, last accessed June 7, 2023,
3“Amyotrophic Lateral Sclerosis (ALS).”
4“ALS stages and progression timeline.”
5“ALS stages and progression timeline.”
6“Amyotrophic Lateral Sclerosis (ALS),” Mayo Clinic, last accessed June 7, 2023,
This information is provided for educational purposes only. It is not to be used for medical advice, diagnosis or treatment. Consult your healthcare provider if you have questions or concerns.
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