Amyotrophic lateral sclerosis (ALS) is a progressive muscle-wasting condition that has no cure. Living with ALS and coming to terms with the diagnosis can be a challenge. It means adapting to a new way of life, but with the support of others and the advancements in science, it is possible to maintain the best possible quality of life.

There are two approved treatments for ALS, Rilutek (riluzole) and Radicava (edaravone) which can help slow progression of the disease.

Eating and drinking

ALS can affect the ability to swallow and, with reduced mobility, it can take longer to eat a meal. It is important to maintain a full and healthy diet or excessive weight loss can occur. There are a number of ways mealtimes can be adapted and specialists can advise on the best way of using utensils to make eating easier. For some patients, a surgical procedure to allow tube feeding may be needed.

Breathing

As ALS progresses, patients can struggle to breathe as their muscles weaken. However, independence can be maintained for as long as possible through a combination of physiotherapy and ventilation (using a machine to increase air flow to the lungs). Ventilation can be non-invasive or invasive (tracheostomy). Non-invasive ventilation is the most common form of ventilation. It aids breathing using a portable machine with a nose or face mask. A tracheostomy is a surgical procedure that involves a tube being inserted into the windpipe through the neck, and a machine taking over breathing for the patient.

Speech and communication

Muscles in the tongue and lips and around the vocal cords can weaken as the disease progresses, which can result in slurred or unclear speech. A speech and language therapist can teach patients techniques to make speech easier, and there is an expanding pool of assistive technologies to help improve communication.

Mobility and movement

Getting around and carrying out everyday tasks can become difficult as ALS progresses. Physiotherapy and exercises can help the patient to keep mobile for as long as possible, but as the disease progresses there are other options that can help maintain independence. These include installing railings at home and power-assisted wheelchairs.

Emotional and mental well-being

Maintaining a good support network can help manage life with ALS. There is help available on how to approach difficult conversations with family, friends, and colleagues so that both patients and their family and friends can adjust to the diagnosis of ALS.

Some patients diagnosed with ALS can experience pseudobulbar affect (PBA, or emotional lability), which involves uncontrolled laughing or crying that does not reflect their actual mood or feelings.

A small number of people with ALS may experience frontotemporal dementia (FTD). This form of dementia does not affect memory, but it can cause changes to the way the patients think and behave.

More information and support

Finding the right information and support can help ALS patients plan ahead and cope with the disease. There are many charitable organizations that help patients and their families. For example, the ALS Association in the U.S., the ALS Society of Canada, and the Motor Neurone Disease Association in the U.K. are good places to start.

Listening and talking to others with similar experiences also can be helpful. Online forums are available at ALS News Today and at MDA.org.

ALS News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website.