What you need to know about amyotrophic lateral sclerosis (ALS)
Did you know that 90% of the care provided to people with Amyotrophic Lateral Sclerosis (ALS) is provided by their caregivers? The following sheet presents key information on its symptoms, diagnosis, risk factors, stages of development and treatment.
ALS – also known as Lou Gehrig’s disease, motor neuron disease or Charcot’s disease - is a neurodegenerative disease characterized by a weakening and then paralysis of the leg and arm muscles, respiratory muscles and swallowing and speech muscles.
There are two forms of ALS: the “spinal” form that starts in a limb, and the “bulbar” form that starts with the mouth muscles. Both of these forms may succeed one another or develop simultaneously, but the disease almost always progresses to a complete form (spinal and bulbar). The most common symptoms of both forms are summarized in the table below.
Symptoms of the spinal form :
Symptoms of the bulbar form*
*The progression of the disease is different from one person to the next. Different symptoms may appear at different stages of the disease depending on the case.
If you or a loved one suffer from some of these symptoms, it does not mean that it is ALS. Go to the ALS-Quebec website for more information on the disease or talk to your physician about it.
Diagnosing ALS early in its development is difficult, because the symptoms can resemble other neurological diseases or be perceived as signs of ageing.Since there is no screening test exclusive to ALS, tests must first be conducted to rule out other potential diseases.
Your general physician may run a first diagnosis by cross-referencing the various physical manifestations observed, before sending the patient for more in-depth physical examinations, EMG (electromyography), blood tests or MRI (magnetic resonance imaging).
The causes of the disease are unknown at this time, but there are hereditary forms of ALS (5 to 10% of cases); we talk about these cases as “family” ALS in contrast to “sporadic” ALS, which is the most common form. While the precise origin of the disease still remains undetermined, many factors come into play in its appearance:
The disease progresses at a different pace from one person to the next, and it is impossible to predict the length of its progression. For some patients, the symptoms can be stable for long periods of time, but these cases are rare.
At this time, there are no treatments to cure this disease. The medications available - riluzole and edaravone – are designed to slow its progression and maintain the patient’s quality of life. However, the trial data for edaravone indicated that its benefits were seen more in patients in early stages of the disease.
Other treatments involve relieving the symptoms of the disease, especially the cramps and muscle contractions and reducing saliva production. Alongside these treatments, respiratory and nutritional support are among the care provided to patients. Physiotherapy, re-education or speech-language pathology may also help maintain muscle flexibility and preserve some independence and daily quality of life for as long as possible.
Do not hesitate to reach out to your physician for clarifications concerning these various treatments. Pharmacists can also answer questions on the medications and give clarifications on managing their administration.
Finally, home adaptation may also provide better accessibility to various rooms in the home, while ensuring the safety of the person with ALS (see our article Resources and References). Healthy lifestyle habits, such as a healthy diet, regular naps and continuing social activities, may also help make certain aspects of the disease less difficult to live with.
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