Resources for Learning About ALS

We’re committed to providing you with quick, easy access to a variety of resources related to ALS – from fact sheets and publications and videos produced by the Association to book recommendations and resource guides.

Links to websites outside of The ALS Association are provided for your browsing convenience but do not represent formal endorsement of their content.

To order physical copies of these resources, visit our order portal.

97 results
ALS Association
FYI: Glutamate Research Could Lead to ALS Treatment
Decades of research on the neurotransmitter glutamate have produced promising results that could lead to treatment for Amyotrophic Lateral Sclerosis (ALS). Scientists believe excessive exposure to glutamate may be one of the reasons that nerve cells (motor neurons) die in ALS. Preventing the rise of glutamate levels could be the key to protecting motor neurons and impeding the progress of the disease.
Factsheet
ALS Association
FYI: Familial Amyotrophic Lateral Sclerosis (FALS) and Genetic Testing
Most of the time ALS is not inherited. In about 90% of cases, the person is the only member of the family with the disease. These cases are called “sporadic ALS”. The cause of sporadic ALS is not well understood, but may be due to a combination of environmental and genetic risk factors.
Factsheet
ALS Association
FYI: Epidemiology of ALS and Suspected Clusters
Epidemiology is the study of factors that influence the frequency and distribution of disease, injury and other health-related events and their causes in a defined human population. These studies are done to establish programs that prevent and control the development and spread of disease and injury.
Factsheet
ALS Association
FYI: A Guide to Voice Banking Services
People with ALS often lose their ability to speak. For some, this change happens quickly; for others, this change may be more gradual. In any case, it’s important for people with ALS to consider voice banking and/or message banking as soon as possible after diagnosis, while they still have their strongest voice possible.
Factsheet
ALS Association
FYI: How To Know When to Hire In-Home Help
Hiring in-­‐home assistance can help you cope effectively with the everyday challenges of living with ALS, as well as relieve some of the pressure on family caregivers. But sometimes, it can be difficult to make the decision to bring on additional support. Here are some guidelines that can help you with the decision process.
Factsheet
ALS Association
FYI: Home Health Care Glossary
When you are considering home health care services, it can be helpful to know the lingo. Here is a glossary of commonly used terms in home health care.
Factsheet
ALS Association
FYI: Medicare and Home Health Care
Medicare is a federally funded insurance plan that provides health insurance to people 65 years and older, as well as to younger people with certain disabilities and conditions (including ALS). Because of your ALS diagnosis, you are automatically enrolled in the Medicare program as soon as you begin to receive disability benefits from Social Security (or, if you were a railroad worker, the Railroad Retirement Board).
Factsheet
ALS Association
FYI: Choosing a Home Health Care Agency
If you have ALS or are caring for a loved one with ALS, there are many reasons to consider hiring in-­‐home help. For example, a change in condition could necessitate a higher level of skilled care, or it may be helpful to have assistance with personal care or some of the routine tasks associated with managing the household. One route is to find and hire help on your own, but a home health care agency can provide a wide range of care and support services while also handling day-­‐to-­‐day administrative tasks, such as managing personnel and payroll. If you’re thinking about hiring help through a home health care agency, here’s an approach for finding an agency that is a good match.
Factsheet
ALS Association
FYI: Paying for Home Care
For most families living with ALS, in-­‐home care becomes a necessity at some point. The expenses associated with in-­‐home help can add up quickly. Public insurance plans (such as original Medicare and Medicaid) and private insurance plans (such as Medicare Advantage, an employer’s health insurance plan, or long-­‐term care insurance) may help to cover some of the costs associated with in-­‐home help, but most of the financial burden is usually borne by the family.
Factsheet
ALS Association
FYI: Different Types of Home Care Workers
As you live your life with ALS, you will most likely be supported by many different home care workers, each responsible for providing specific types of care and services to you. Here’s a review of the various types of workers who could be on your home support team.
Factsheet
ALS Association
FYI: Hiring In-Home Help Independently
At some point during your journey with ALS, in-home help will most likely become a necessity. Many families choose to use a home health agency or a non-­‐medical home care (companion) agency to match them up with suitable employees and coordinate the delivery of services. Other families opt to hire help independently, using personal referrals or an employment (registry) agency. The difference between an employment agency and the other types of agencies is that an employment agency simply matches clients with qualified providers - it does not handle any of the responsibilities of an employer, such as coordinating and overseeing the delivery of services, managing payroll and taxes, or providing ongoing training for employees.
Factsheet
ALS Association
FYI: Breathing Difficulties
ALS varies greatly from person to person and symptoms related to your breathing can start early or much later. Weakness in the muscles of respiration (breathing) can lead to a variety of symptoms.
Factsheet
ALS Association
FYI: Information about Mucus Plugs
Mucus is a gel substance naturally secreted by the lungs’ cells and glands that lines the surface of airways. The lungs respond to inhaled irritants by increasing the production of mucus.
Factsheet
ALS Association
FYI: Influenza and ALS
People with ALS are already at increased risk for respiratory problems associated with viral and bacterial infection, and the flu can deliver a harsh blow. The flu season in just around the corner and can start as early as October, the most beautiful month of the year. The flu can cause decreased appetite and a severe cough, both of which are significant problems for people with ALS. Importantly, about 90% of the deaths due to the flu occur in persons older than 65 years, the same age group of many of our ALS patients. So "yes," you need a flu shot.
Factsheet
ALS Association
FYI: Emergency Preparedness for People with ALS
Emergencies and disasters can strike quickly and without warning, forcing people to leave or be confined in their home. For the thousands of Americans with ALS, emergencies such as fires, floods and acts of nature present a real challenge. It is important that people with ALS and their family members make plans to protect themselves in the event of a disaster. This needs to be addressed not only at home, but also when away from home, such as at work or on vacation.
Factsheet
ALS Association
FYI: Driving Challenges with ALS
Driving an automobile is an economic, social, and recreational necessity for most Americans. A privilege most teens seek, driving soon occupies a central role in the lives of most adults. For people with medical problems, such as ALS, conflicts may arise in balancing self-reliant driving privileges and society's need to protect public safety.
Factsheet
ALS Association
FYI: Dressing with Ease, Style and Comfort
Dressing and undressing are often challenging task among people with limited mobility. While buttons and zippers are frustrating for some folks, others may find reaching arms through armholes of putting legs through leg holes tedious chores. Besides the obstacles people face for dressing independently, it is not always easy for their assistants. Wearing accessible clothes and selecting attire to meet individual needs will make dressing easier, sparing unnecessary aggravation and fatigue.
Factsheet
ALS Association
FYI: Suspected Abuse
In our work at The ALS Association, we all encounter a variety of situations involving persons with ALS and their families.
Factsheet
ALS Association
FYI: Pain in ALS
Does ALS cause pain? The answer is yes, although in most cases it does so indirectly. From what we know at this time, the disease process in ALS only affects the nerve cells controlling strength (motor neurons) in the brain, spinal cord, and peripheral nerves. Fortunately, these nerves don’t send pain signals back up to the brain.
Factsheet
ALS Association
FYI: Orthotic Devices
It is not unusual to notice the first symptoms of ALS in the arms or legs. There may be only a slight weakness or clumsiness in the affected limb at first and the person with ALS (PALS) may be able to go without orthotics until the weakness progresses to a more noticeable level. However, adaptability, comfort, and independence can be greatly enhanced with the proper orthopedic devices and/or products.
Factsheet