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: 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: 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: 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: 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: 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 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: 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: 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: 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: Suspected Abuse
In our work at The ALS Association’s National Office and Chapters, we all encounter a variety of situations involving persons with ALS and their families.
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: 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: 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: 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: 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