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.

103 results
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: Home Adaptations
Adapting your living environment to meet your changing needs will become a necessity as the ALS progresses. Environmental modifications can help you to stay safe and retain your independence for as long as possible. They can also lower your caregiver’s risk for injury, by making tasks such as assisting with transferring and repositioning less physically taxing.
Factsheet
ALS Association
FYI: Working Successfully with In-Home Service Providers
When you hire in-home help, either through an agency or on your own, you automatically become an employer and a supervisor. These may be roles you are comfortable with, but for many people, managing the relationship with in-home service providers is unfamiliar territory. The people who assist you are integral members of your health care team, so you want to do everything you can to ensure that they are able to do their jobs effectively. You already took the first step to achieving a good long-­‐term working relationship when you took care to hire the agency or person you felt was right for the job.
Factsheet
ALS Association
FYI: Planning for the Future
It can be difficult to plan for the future when you are focusing on living in the present. But giving thought to what lies ahead can help you live your best life now and provide you, and your family members, with peace of mind going forward.
Factsheet
ALS Association
FYI: Respite
Respite is a service that provides family caregivers with time away from their caregiving responsibilities. Everyone needs “me” time to relax and reboot - this is especially true for family caregivers, who are often stretched thin emotionally as well as physically by the increased demands illness places on the family. Respite gives the caregiver a chance to meet his or her own needs, which benefits both the caregiver and the care recipient.
Factsheet
ALS Association
FYI: Hospice
Hospice is a model of care that focuses on providing physical and emotional comfort to people who are dying, and on supporting their families, during the end-of-life period.
Factsheet
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: 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
ALS Association
FYI: Mobility and ALS
Freedom of movement - walking, going up and down stairs, getting off the floor, completing daily activities, exercising—these are just a few of the activities that many of us take for granted and are able to perform without limitation. For an individual with ALS, these often become difficult or even impossible to do. As weakness develops in the legs, trunk muscles or diaphragm, active movement can become limited.
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