Every 90 minutes someone is diagnosed with ALS. In fact, the disease affects ~30,000 people in the U.S. with 5,000 new cases diagnosed every year. The incidence of ALS is 5x higher than Huntington’s disease and equal to multiple sclerosis.
Learn more about this disease and daily aids that can help as ALS progresses!
All About ALS
What is ALS?
ALS is a progressive neurodegenerative disease. It affects nerve cells in the spinal cord and brain. It was identified in 1869 by Jean-Martin Charcot, a French neurologist. In 1939, ALS ended the career of Lou Gerig, a professional baseball player, and was commonly referred to as Lou Gehrig’s disease.
ALS stands for amyotrophic lateral sclerosis. A + myo + trophic = No + muscle + nourishment. Lateral refers to the areas in the spinal cord where portions of the nerve cells that signal and control muscles are located. And sclerosis refers to the scarring or hardening that occurs in this region as the area degenerates.
How does ALS affect movement?
From the brain to the spinal cord to the muscles, motor neurons reach throughout the body and govern voluntary movement and muscle control. ALS causes progressive degeneration of these motor neurons leading to their deaths. As the motor neurons die, the brain can’t begin or control muscle movement. This leads to progressively effected muscles and may cause the person to lose the ability to speak, eat, move, and breathe.
What are the symptoms of ALS?
Initial symptoms of ALS can vary. The disease has a gradual onset and while one person may find it difficult to grasp a pen or lift a mug, another may trip more frequently, and another may find their vocal pitch changes when speaking.
Early symptoms include:
- Progressive muscle weakness
- Tripping
- Slurred speech
- Dropping things
- Muscle cramps and/or twitches
- Fatigue in the arms and/or legs
- Uncontrollable periods of laughing or crying
As the disease progresses progressive muscle weakness and paralysis occur. When the breathing muscles are eventually affected, permanent ventilatory support will be needed to assist with breathing. Generally, muscles of the eyes and bladder are not affected. The rate at which ALS progresses varies from person to person. The mean survival time after diagnosis is 3-5 years, but some people live 5, 10, or even more years.
The sense of sight, hearing, touch, taste, and smell are not affected since ALS only causes the deterioration of motor neurons.
Who develops ALS?
Known as sporadic ALS, about 90% of ALS cases occur without a family history. The other 10% of ALS cases are inherited from a mutated gene and known as familial ALS.
The average age at diagnosis of ALS is 55 and most people who develop the disease are between 40-70 years old. People do develop ALS in their 20s and 30s, but this is less common.
ALS is 20% more common in men that in women. But the incidence is more equal between men and women with increasing age.
For unknown reasons, people who served in the United States Armed Forces are more likely to develop ALS than people who did not serve in the military.
Tips and Aids for People With ALS
Dining
Difficulty gripping your utensils?
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- Use foam tubing to help build up the handles of your existing utensils and make them easier to use
- Or use utensils with built-up handles with a larger diameter that is easier to hold
- A wrist support can help by holding the utensil for you, supporting your wrist, and strapping onto your hand and wrist
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Difficulty bending wrist to use utensils?
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- Use bendable utensils to adjust the angle of the fork or spoon and help get food into your mouth
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Difficulty cutting your food?
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- Use a rocker knife, it requires less strength and cuts with a simple rocking motion
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Trouble stabilizing your bowl or place while scooping?
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Difficulty scooping food from your plate?
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Unable to move your arm and wrist sufficiently to feed yourself?
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Difficulty bringing your arm to your mouth?
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- Prop your elbows on the table for support
- Use a self-feeding support to stabilize your arm if you have upper extremity weakness
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Difficulty bringing your cup to your mouth?
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Difficulty sipping due to weak mouth muscles?
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Medical Disclaimer: The information provided on this site, including text, graphics, images and other material, are for informational purposes only and are not intended to substitute for professional medical advice, diagnosis or treatment. Always seek the advice of your physician or other healthcare professional with any questions or concerns you may have regarding your condition.