Resources

As a service to the ALS community, we have assembled various resouces, including publications and videos produced by The Association, other related books, fact sheets, as well as resource guides so that you can quickly and easily access information pertaining to a variety of subjects related to ALS.

Hyperlinks to websites outside of The ALS Association are provided as a browsing convenience and do not represent an endorsement of the linked site.  

65 results
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: Brain-Computer Interface (BCI)
A brain-computer interface (BCI), also known as a brain-machine interface, is a system that allows a person to control a computer or other electronic device using only his or her brainwaves, with no movement required.
Factsheet
ALS Association
FYI: ALS, Cognitive Impairment & Dementia
Although cognitive and behavioral symptoms were documented in patients with ALS-type motor neuron disease in the late 1800’s, many of us were trained that ALS, and motor neuron diseases in general, do not impact thinking and behavior. Within the last 10 years, there has been a convergence of research on ALS clinical symptoms, neuro-radiographic patterns of pathology, and genetics that have shed important light on the association between motor neuron disease, cognition, and behavior.
Factsheet
ALS Association
FYI: Suggestions and Information about Speech Changes & Augmentative Alternative Communication (AAC)
Changes in speech are common with ALS and progress over time. Learning about and implementing timely strategies and proactive steps will enable you to maintain optimal communication. Beginning work with a speech therapist (i.e. speech language pathologist or SLP) familiar with ALS at the earliest sign of speech or voice changes, and even prior to changes, can be invaluable. In this article we look at what causes speech and voice changes and the important steps to take at various stages of ALS to insure you can communicate effectively.
Factsheet
ALS Association
FYI: Managing Excessive Saliva
Patients who experience swallowing problems often notice that they seem to salivate more. The fact is, they may not be salivating more, but the saliva is pooling in the mouth because of an inability to swallow it. Excessive saliva can be one of the most frustrating symptoms of ALS to manage. It can also be life threatening, since it frequently causes choking, especially at mealtimes when saliva secretion is increased and chance of aspiration is greatest.
Factsheet
ALS Association
FYI: Information About Feeding Tubes
A feeding tube is a small, flexible tube, about ¼” in diameter that is an alternative route for nourishment and hydration.
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
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