Our Carers hub is here to help if you provide unpaid support to someone with motor neurone disease (MND) or Kennedy’s disease. You may prefer to see yourself as their partner, relative or friend, but as a ‘carer’ you can access services and support. Getting help may become essential as care needs increase. The following pages provide information to help you look after your own wellbeing.
United States of America
About ALS
Amyotrophic Lateral Sclerosis (ALS), also known as Lou Gehrig’s disease, is a progressive and fatal neurodegenerative disease. ALS affects an estimated 350,000 people worldwide, with an average survival rate of three years. The degeneration of nerves leads to muscle weakness and impaired speaking, swallowing, and breathing, eventually causing paralysis and death. Currently, there is no cure.
What is ALS?
In the U.S., someone is diagnosed with ALS every 90 minutes and every 90 minutes someone with ALS dies. ALS (Amyotrophic Lateral Sclerosis) is a rapidly progressive, terminal disease that causes muscle weakness, difficulty speaking and swallowing and, generally, complete paralysis.
Medicare Information (United States)
Resources for people with ALS who are navigating the US Medicare system.
FYI: Informational factsheets and articles to help in living with ALS
This comprehensive list of fact sheets includes the categories: Benefits, Caregivers, Newly Diagnosed, For People with ALS, Home Care, Research/Clinics, Speech/Swallowing, Alternative Treatments, Veterans with ALS. (Where relevant, the resources linked here are specific to the United States healthcare system.)