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ALS, sometimes called Lou Gehrig's disease or motor neuron disease, is a rapidly progressive neuromuscular disease. It is characterized by degeneration of a select group of nerve cells (motor neurons) and pathways in the brain and spinal cord, which leads to progressive paralysis of the voluntary muscles.

ALS is not contagious, does not discriminate, and can strike at any age (except in childhood). ALS most often occurs between the ages of 40 and 70 years, but it can also occur in much older and younger adults, and rarely in teenagers (Mitsumoto and Munsat, 2001). In about five to 10 percent of people with ALS there is a hereditary pattern of the disease, often over a number of generations. This type of ALS is called “Familial ALS.” All other cases with no apparent family history are considered “Sporadic ALS.”

The symptoms and the area of the body first affected can vary from person to person. Typically ALS involves muscle weakness, fatigue, wasting, stiffness, loss of tone, cramping, twitching, and hyper- and hypo-reflexion (exaggerated reflex or loss of reflex). The onset of the disease may occur in nerves associated with muscles of the upper or lower limbs, the throat, or the upper chest area. In rare cases, the muscles involved in breathing (the diaphragm muscle) are first affected. Symptoms can result in decreased co-ordination in the hands, tripping and falling, weight loss, and difficulty swallowing, speaking, or breathing.

Progressive paralysis of the voluntary muscles involved leads to loss of mobility, a decline in breathing function, difficulty eating and drinking by mouth, as well as speech problems such as slurring or a soft, weak voice. Sometime, ALS will also cause a person to laugh or cry easily and uncontrollably.

Usually, but not always, people with ALS will live two to five years after diagnosis, however there are several options available to help manage the disease and preserve quality of life. Approximately 20 percent live more than five years and some live much longer. Some cognitive abilities may also be affected such as not being able to find the right word, concentrate, or make some types of decisions as well as the person had before ALS.

Not every person with ALS will experience all symptoms or have all areas of the body affected during their course of illness. It is important to understand that ALS does not affect everyone in the same way. ALS does not usually involve loss of sensory function - taste, touch, sight, smell and hearing.

Although recent scientific research has resulted in significant new knowledge, much more research is needed to find a cure. Research is being conducted in areas relating to genetic predispositions (i.e., risk based on genetic make-up), viral or infectious agents, environmental toxins, and immunological changes. To learn what Canadian scientists are working on, click on Research.

In addition to the scientists working on ALS research, anyone can pitch in to raise awareness about the disease, raise money for research and care, or personally help someone out affected by ALS.

Yes, because more than ever before more ALS research is being conducted in Canada and around the world. At the present time, there is no treatment that significantly slows down the disease or reverses it, but that could change.

The Canadian ALS Clinical Group (CALS) was formed in late 2007 to identify and implement exciting opportunities for clinical trials involving testing new treatments for ALS on patients in Canada. Because there are so many bright scientists and doctors working on ALS today, we are hopeful there will be breakthroughs in better understanding and treating ALS sooner than later. For people living with ALS, there are also several things a person, their family, and their healthcare team can talk about to promote independence and function for as long as possible. To learn more about managing life with ALS, click the title, A Manual for People Living with ALS.

Many people with ALS say that they live life more fully with much joy – even knowing what is to come. Good planning for medical care and social support will enhance the quality of life for both the person with ALS and their family members.

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