Resources for people with ALS who are navigating the US Medicare system.
United States of America
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.)
Medical Information and Materials
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.
Living with ALS Resource Guides
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.
What is ALS?
ALS, or amyotrophic lateral sclerosis, is a progressive neurodegenerative disease that affects nerve cells in the brain and the spinal cord. A-myo-trophic comes from the Greek language. “A” means no. “Myo” refers to muscle, and “Trophic” means nourishment – “No muscle nourishment.” When a muscle has no nourishment, it “atrophies” or wastes away. “Lateral” identifies the areas in a person’s spinal cord where portions of the nerve cells that signal and control the muscles are located. As this area degenerates, it leads to scarring or hardening (“sclerosis”) in the region.