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als: what it feels like
adam welburn-ross was just 43 when he received a devastating diagnosis: he had als.
als: do you know the signs?
amyotrophic lateral sclerosis, or lou gehrig's disease, is terrifying, but an early diagnosis can improve quality of life.
current therapies for als are unable to undo the damage already done by the disease but they can help manage symptoms and slow its progression. getty
als, or amyotrophic lateral sclerosis, is a progressive disease of the nervous system that slowly robs the brain of its ability to communicate and control the voluntary muscles of the body. over time, the motor neurons that enable communication and movement break down and die, causing muscles to weaken and waste away. this gradually deprives patients of the ability to walk, talk, swallow and, eventually, breathe. als is commonly referred to as lou gehrig’s disease after the new york yankees first baseman who was forced to retire after developing the disease in 1939. he died a few years after being diagnosed.
symptoms of als
als generally begins with muscle weakness that spreads throughout the body, but specific signs and symptoms vary from person to person. according to the als society of canada, some of the most common include: muscle cramps and twitching in the arms and legs, muscle stiffness or rigidity, weakness, difficulty standing or walking and an increased likelihood of tripping, slurred speech, weight loss or decreased muscle tone, increased or decreased reflexes, shortness of breath, and uncontrollable laughing, crying or yawning.
the disease does not typically affect a patient’s ability to see, hear, touch, smell or taste. most patients do not experience a loss of sexual, bowel or bladder functions but around 10 per cent develop dementia at some point during the course of the disease.
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diagnosing als
no one is sure exactly what causes als but it is believed to be a combination of genetic and environmental factors, according to the mayo clinic. the risk of developing als increases over time, with most patients being diagnosed between the ages of 40 and 65. smoking is also believed to be a risk factor, particularly among women who have already gone through menopause.
als is difficult to diagnose because its symptoms are similar to those of other neurological diseases. to eliminate some of these possibilities, neurologists will typically conduct a series of assessments that can include: blood and urine tests; electrodiagnostic tests (such as electromyography and nerve conduction velocity); muscle and nerve function tests; and magnetic resonance imaging (mri).
treating als
current therapies for als are unable to undo the damage already done by the disease but they can help manage symptoms and slow its progression, according to the cleveland clinic. medications can be used to relieve certain symptoms (such as muscle cramps, depression and pain) and physical therapy can help alleviate stiff muscles and prolong mobility for patients. doctors may also recommend speech therapy, nutritional counseling, assistive devices and special equipment (such as a wheelchair) to extend a patient’s period of independence. nutritionists are able to recommend healthy diets and other food options once swallowing becomes too difficult.
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in addition to the ongoing search for a cure or more effective treatments, recent research into als has focused on ways to detect the disease earlier in its course, thereby allowing existing therapies to slow its progression before muscles have a chance to atrophy. another small study inserted implants into the brains of patients, allowing them to use a brain-computer interface to successfully communicate and perform online tasks using eye-tracking technology.
prevalence in canada
there are more than 200,000 people living with als worldwide, with an estimated 3,000 or so residing in canada. around 1,000 new canadians are diagnosed every year, with a similar number succumbing to the disease. with no known cure and few treatment options, roughly 80 per cent of patients die within two to five years of diagnosis.
support for als
the als society of canada has a wealth of information about the disease, including up to date news on the latest research. the national benefit authority is another useful tool for information on als, with a focus on helping patients ease their tax burden by qualifying for the canadian disability tax credit. als forums can also be helpful sources of support through connections with others who share the same experiences.
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dave yasvinski is a toronto-based freelance writer.
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