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.  

44 results
ALS Association
Youth Education
Based on subject matter-specific research, three youth education books were developed for children, teens, and young adults.
Book, Guide / Manual
ALS Association
Living with ALS at Home
A basic guide to understanding what home health care resources are available and how they can help.
Brochure
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: 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
f 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: 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: 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