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.
United States of America
Resources for people with ALS who are navigating the US Medicare system.
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.)
These pages have been developed as communication and educational tools to help inform medical providers as well as provide pertinent insurance and family information. They may be used as a packet or as individual pages, based on individual preference and need. The electronic versions of these pages have been built as a form with fillable fields. Individuals can type their information within the pdf and save and/or print when complete.
The ALS Association’s Living with ALS Resource Guides were created because of the rapidly expanding information and research in the clinical management of ALS. These cornerstone educational materials were designed to inform and educate people about ALS in a comprehensive and easily understood format. They address many of the common concerns and issues that face people living with ALS.