Amyotrophic Lateral Sclerosis or ALS (also known as Lou Gehrig’s Disease) is a  progressive neuromuscular disease in which nerve cells die and leave voluntary muscles paralyzed.  . Amyotrophic is a term that means an absence of nourishment to the muscles. Lateral refers to the area of the spine that stimulates or nourishes the muscles and Sclerosis means hardening.  So in simplest terms, the motor nerves that stimulate our voluntary muscles harden and die leading to wasting of the muscles and loss of function.    Progressive paralysis of the voluntary muscles involved leads to loss of mobility, a decline in breathing function, difficulty eating and drinking, as well as speech problems such as slurring.  Not every person with ALS will experience all symptoms or have all areas of the body affected during their course of illness.  Since ALS affects the motor neurons and not the sensory neurons, it does not affect a person’s ability to see, smell, taste, hear, or recognize touch. Patients usually maintain control of eye muscles and bladder and bowel functions, although in the late stages of the disease most patients will need help getting to and from the bathroom.

Every day two or three Canadians die of the disease.  ALS most often occurs between the ages of 40 and 70, but it can also occur in older and younger adults, and rarely in teenagers.  ALS is usually fatal within two to five years of diagnosis (although 10 percent will live 10 years or longer) and 5-10 percent of cases are hereditary.  At the present time, there is no treatment that significantly prolongs life for people living with ALS.

Treatments for ALS are designed to relieve symptoms and improve the quality of life for patients. This supportive care is best provided by multidisciplinary teams of health care professionals such as physicians; pharmacists; physical, occupational, and speech therapists; nutritionists; social workers; and nurses.  Since ALS affects the entire family, care needs to be extended to caregivers as well.  ALS is a drains caregivers emotionally, physically and financially. Supporting groups such as the ALS society not only leads to research but also supports clients and their families as they try and deal with this devastating disease.  Take care of yourselves and each other.