Limb-Onset ALS : Life expectancy 3-5 years
Bulbar-Onset ALS : Life expectancy 1-2 years
Respiratory-Onset ALS : Life expectancy less than 1 year
Primary Lateral Sclerosis (PLS) : Life expectancy 10-20+ years
The Influence of Age:
Under 40 at Onset: More than 50% of patients live beyond 5 years, and a significant subset exceeds 10 years.
Over 65 at Onset: Median survival drops to roughly 2 to 3 years.
Over 80 at Onset: Survival is often less than 2 years from diagnosis, with a higher rate of bulbar involvement.
Key Survival Milestones Across All Cases
~50% of all diagnosed individuals survive for more than 3 years.
~20% survive for 5 years or longer.
~10% survive 10 or more years.
A small percentage (5% or less) live for 20 years or longer.
I know of three people that had ALS, 1 female and 2 males. The female worker in my department was in her mid 50s and died a about year after diagnosis. A former male coworker in his mid 60s died about year or so after being diagnosed. A friend’s father supposedly died of about it 20 years ago. There was some debate whether he actually it had since he gradually lost the use of his legs over a decade.