Over 5,000 people a year are diagnosed with the neurodegenerative disorder amyotrophic lateral sclerosis. Every hour and a half, someone is diagnosed with ALS, and someone passes away from this disease just as often. It is devastating for not only those who get it but also their friends and loved ones. There is no cure, but research is continuing.
What Causes ALS?
In this disease, the patient’s motor neurons — the nerve cells that send messages to and from the brain, spinal cord, and muscles — are affected. These motor neurons control the muscles that produce voluntary movements, such as walking, picking something up, and even chewing and breathing. However, the motor neurons in a patient with ALS break down and die, making it impossible for the brain to send messages to the muscles. Eventually, the muscles become weak and their movement can’t be controlled.
ALS is also known as Lou Gehrig’s disease after the baseball player who was diagnosed with the disease in the late 1930s, bringing a lot of attention to the disease.
Who Gets ALS?
People between the ages of 40 and 70 most often get ALS, which is a similar age of diagnosis to MS. However, anyone can get it at any age. In those younger than 65, men are a little more likely to develop ALS than women, but after the age of 70 both sexes get the disease with equal frequency.
About 90% of cases occur in patients without a family history of the disease, and about 10% of cases are inherited through a mutated gene. Environmental factors may also play a role; people who have come into contact with certain chemicals seem to have a higher rate of ALS. Smoking also seems to be a risk factor for ALS, and military members or veterans seem to have higher rates of the disease, although it isn’t clear why this is.
What Happens When Someone Gets ALS?
The patient might first notice that muscles are stiff or weak, and he or she might have trouble with fine movements, such as trying to button a shirt. They may have trouble walking and even speaking properly; a feeling of weakness and clumsiness in the legs, feet, and hands; muscle cramps; slurred speech; trouble swallowing; and even inappropriate crying or laughing. The condition gets worse and worse and muscles get weaker and weaker, until even breathing is difficult.
In the early stages, there is usually no pain, and the senses remain intact. ALS patients can still learn, think, and appreciate sights, sounds, and smells. However, their memory and decision-making ability may eventually be affected, and some may be diagnosed with a form of dementia. Eventually, they might need a machine to help them breathe, and they may need a feeding tube to make sure they get the proper nutrition. A feeding tube can also reduce the risk of getting liquids or food into the lungs, which can cause pneumonia.
Patients with breathing problems often die within three to five years after they have been diagnosed — respiratory failure is the most common cause of death for people with ALS — but others with the disease can live for more than 10 years.
Diagnosing ALS can be difficult, because it can seem very similar to other neurological diseases. To rule out another disease, many tests can be run, including an electromyogram, magnetic resonance imaging, blood and urine tests, a nerve conduction study, a spinal tap, and a muscle biopsy.
Is There a Cure for ALS?
There is still no cure for ALS, although researchers are making progress every day. Thanks to this research and many available support groups, a person living with ALS may have a better quality of life than he or she would have had even a few years ago. ALS is also becoming better understood by the public (thanks to the viral social media fad the Ice Bucket Challenge), which can end up helping patients and families with both financial and emotional support.
There are some treatments to help patients live a better life, reduce symptoms, and increase life expectancy. These include medications and also physical, occupational, and speech therapy. Psychological support can also help. ALS is a horrible disease, but there is hope, and every day a little more progress is made.