Books of interest for the ALS community.

A basic guide to understanding what home health care resources are available and how they can help.

This booklet was written to help people with ALS overcome eating obstacles.

The purpose of this booklet is to provide basic information about home care for people affected by ALS.

A brochure to assist people living with ALS understand their speech difficulties and to describe solutions and resources available to help them communicate.

Bill of Rights for caregivers.

Clinical trials have proven to be the most reliable way — and ultimately the fastest way — to discover treatments that really work. The goal of clinical trials is to answer specific scientific questions to find better ways to prevent, detect, or treat ALS, or to improve care for people with ALS. People with ALS, along with family members and caregivers, are essential partners in this research. There are many ways you can search for a clinical trial, whether you want to participate in a trial or simply to get more information.

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.

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.

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.

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.

A feeding tube is a small, flexible tube, about ¼” in diameter that is an alternative route for nourishment and hydration.

Compiled by the Stony Brook Dietetic Interns and updated 2012

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.

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.

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.

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.

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).

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.

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.