By Leslie Vandever
Since August, more than 3 million Americans and other people from all over the world have dumped buckets of ice-water over their heads on social media to help raise funds to fight the devastating motor neuron disease ALS (amyotrophic lateral sclerosis).
Participants in the ALS Association’s Ice Bucket Challenge have included children, adults from all walks of life, Hollywood stars, and prominent politicians.
ALS is a progressive neurodegenerative disease. It affects nerve cells in the brain and the spinal cord that affect voluntary movement by disrupting and eventually destroying the motor neurons that send signals to muscles throughout the body. As the motor neurons die, the brain’s ability to initiate and control voluntary movement is lost.
More than 12,000 people in the United States have ALS; it’s one of the most common neuromuscular diseases worldwide and affects people of all races and ethnic backgrounds. It’s more common among non-Hispanics, white males, and people between the ages of 60 and 70, but people who are older or younger than that can get it too. Men seems to get ALS more frequently than women. Most cases of ALS—90-95 percent—occur apparently at random with no clearly associated risk factors. Five to 10 percent of cases to seem to be hereditary.
Early symptoms of ALS can be subtle. They frequently show up first in the hands, feet, arms, or legs, then spread to other parts of the body. Symptoms may include:
- muscle cramps, twitching, and weakness in the arms, shoulders, and tongue
- weakness or clumsiness in the hands
- trouble swallowing
- slurred speech
- weakness in the legs, feet, or ankles
- difficulty with or tripping while walking
- difficulty in doing normal daily chores
- difficulty keeping the head upright and posture straight
As the disease progresses, the body’s muscles become weaker and weaker. In time, ALS affects speaking, chewing, swallowing, and even breathing. In the later stages of the disease, ALS may cause total paralysis.
Although ALS is always fatal at this point, there is hope. Scientific medical research has produced treatments that can slow the progression of the disease and improve some symptoms. Riluzole is the first drug approved by the FDA for use in treating ALS. It can’t reverse damage already done to motor neurons by the disease, but it does reduce new damage. Studies have shown that it can prolong survival for several months, and some patients survived longer without needing ventilation support.
Non-drug therapy is also an important way to treat ALS. It includes:
- physical and occupational therapy
- relaxation techniques
- speech therapy
Caring for an ALS patient can be difficult and challenging. But there are many ways to soothe and relieve some of the disease’s symptoms and help improve the patient’s quality of life. They include (among many others) encouraging the patient to eat, giving medications on schedule, massaging cramped and painful muscles, ensuring regular doctor visits, controlling the stress levels in the home, and providing pleasant distraction from symptoms.
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Leslie Vandever is a professional journalist and freelance writer with more than 25 years of experience. She lives in the foothills of Northern California.References:
- What Is ALS? (n.d.) ALS Association. Retrieved on September 18, 2014 from http://www.alsa.org/about-als/what-is-als.html
- Amyotrophic Lateral Sclerosis Fact Sheet. (2014, September 8) National Institutes of Health. Retrieved on September 18, 2014 from http://www.ninds.nih.gov/disorders/amyotrophiclateralsclerosis/detail_ALS.htm
- Amyotrophic Lateral Sclerosis. (2014, April 9) Mayo Clinic. Retrieved on September 18, 2014 from http://www.mayoclinic.org/diseases-conditions/amyotrophic-lateral-sclerosis/basics/definition/con-20024397
- ALS (Amyotrophic Lateral Sclerosis). (n.d.) Net of Care.org. Retrieved on September 18, 2014 from http://www.netofcare.org/content/specific_illnesses/als.asp