Life expectancy after receiving a diagnosis of MND, which is also known as Lou Gehrig’s disease and ALS, varies from person-to -person and may be influenced by the type of MND diagnosed. In 2019, research suggests that around 862 people died from MND in Australia.
Types of MND and average prognosis
According to MND Australia, the type of MND may influence life expectancy in the following way:
Amyotrophic Lateral Sclerosis (ALS): People who have been diagnosed with ALS have an average life expectancy of 2 to 5 years.
Progressive Bulbar Palsy (PBP): The average life expectancy of someone who has been diagnosed with PBP is between 6 months and 3 years.
Progressive Muscular Atrophy (PMA): Someone who has been diagnosed with PMA may have an average life expectancy of over 5 years.
Primary Lateral Sclerosis (PLS): PLS is the slowest progressing form of MND with an average life expectancy of 10-20 years.
Find out more about the types of MND.
Managing MND Progression
There are several management strategies that may assist with improving quality of live and life expectancy. These strategies include the medication riluzole, good nutrition, non-invasive ventilation as well as multidisciplinary care and equipment.
Find out more about managing MND progression.
End of life planning and considerations
Advanced care planning is important for everyone and is about sharing what matters to you and making your future wishes known. Discussing and documenting your preferences at end of life with your loved ones and health care team is important to ensuring you receive the care you choose. It is also important because it gives you and your loved one’s peace of mind should they be required to make decisions for you.
As a person with MND approaches end-of-life, a palliative care team focuses on comfort, and pain management. The leading cause of death in MND is respiratory failure.
Find out more in the End-of-Life Care Guide for People with MND.
Summary
- Life expectancy varies depending on the type of MND and from person-to-person
- There are ways to manage progression and to prolong life
- Advanced care planning and planning for future care needs early can give peace of mind for the future.
