As ALS progresses, people living with the disease will find it more difficult to walk and move around, and they will eventually require support to do so. Their symptoms will gradually worsen and take away their ability to move, swallow, speak and eventually breathe.
If you have ALS, it is advised that you discuss breathing support options with members of your ALS healthcare team, as well as caregivers at home to decide what might be right for you. This decision should be made well before breathing function has seriously declined and communicated in a personal healthcare directive (advance directive) so that the care you desire is received if a respiratory crisis occurs. Learn more about breathing support options.
Symptoms as ALS progresses
- Difficulty breathing
- Coughing when eating or drinking
- Difficulty forming words or projecting voice
- Fatigue caused by muscle exhaustion
- Reduced food intake and weight loss
- Insomnia caused by discomfort
- Excessive saliva or dry mouth
30-50% of people living with ALS will experience cognitive and/or behavioural difficulties, meaning their thinking and personality may change. People living with ALS may display inattention, difficulty in speech, facial or reading comprehension, verbal communication difficulties, obsessive or unusual behaviour or apathy/depressive behaviour. Learn more.
Not every person with ALS will experience all of these symptoms. Although symptoms may seem to stay the same over a period of time, ALS is progressive and does not go into remission. It is terminal, usually within 2-5 years after diagnosis, although some people have lived with ALS for 10 years or longer.