Compiled by the Stony Brook Dietetic Interns and updated 2012

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.

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.

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.

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.

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.

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.

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.

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.

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.

Coughing is a familiar, yet complex reflex action that functions to clear material from the airway. It protects the airway from irritants, saliva, or foreign particles that may have been inhaled (aspirated), and secretions, cellular debris, and microbes generated by the lungs or bronchial tree. Coughing can be involuntary; a reaction to inhaling a foreign particle or wayward food particle, or voluntary, intentionally taking a deep breath to clear mucus from the throat.