After the Ice Bucket Challenge: 6 Facts About ALS

We all saw the videos on social media, people from all walks of life “stepping up to take the ALS Ice Bucket Challenge” and dumping buckets of freezing cold water over their heads.  While all of the ice buckets have been put down, amyotrophic lateral sclerosis (ALS) and other fatal motor neuron diseases will continue to take lives and deserve more research dollars.

Here are six important things you should know about the rapidly progressive, always fatal, ALS, to add to your understanding of the disease and why the $100+ million raised through the ice bucket challenge is so important.

1. What Happens in ALS?

Amyotrophic lateral sclerosis, also called Lou Gehrig’s disease, damages the nerves that control muscles. This causes the muscles to weaken. Slowly they stop working, leaving the person unable to move, and eventually unable to breathe or swallow. Over time, the disease gets worse and leads to death, usually within three to five years. ALS doesn’t usually impair thinking or intelligence -- or the ability to see, smell, taste, hear, and feel sensations. There is no cure for ALS, but doctors can treat the symptoms.

2. Who Can Get It?

Approximately 12,000 people of all races and ethnic backgrounds in the U.S. currently have ALS. Most are diagnosed between ages 40 and 60. More men than women have ALS, although no one knows why.  Most of the disease appears to be sporadic, and family members aren’t at greater risk. However, there is a familial (genetic) form found in 5-10 percent of cases.

3. What Are the Symptoms?

The onset of ALS can be very subtle. It differs in individuals. Some of the early ones include:

• Muscle twitches or spasms
• Cramps
• Slow, stiff, or awkward movements
• Muscle weakness in an arm or a leg,  usually on one side of the body
• Trouble speaking or swallowing

4. Diagnosis

A doctor will note the signs and symptoms while performing a thorough physical and neurological exam, and take a full medical history. At some point a primary care doctor will usually refer the person to a neurologist to make final diagnosis.  It’s important to rule out other causes, such as infection or other neurological diseases that can show the same signs as ALS.

Commonly used tests might include:

• Blood and urine tests
• EMG (electromyography) to detect electrical activity in the muscles
• NCS (nerve conductions study) to assess the nerves’ ability to send signals
• MRI (magnetic resonance imaging) to take detailed images of the brain and spinal cord

5. Treatment

While some new medications show promise for prolonging survival, most treatment for ALS is about relieving symptoms and maintaining quality of life. Social workers, physical therapists, caregivers, and sources of emotional and spiritual support play an important role. Hospice care is common at the end.

Treatments include:

• Medications to help with fatigue, muscle cramps, saliva, pain, depression, sleep, and constipation
• Physical therapy and assistive devices
• Speech therapy
• Nutritional support
• Breathing support

6. Looking for Causes, Prevention and Cures

The ALS Ice Bucket Challenge brought attention to the need to fund research for ALS and other diseases.  Right now, little is known. Researchers want to learn why ALS strikes some people but not others. Genes and gene mutations are important areas to explore, as well as causes of the gene mutations and cellular defects.  Some are researching the possible role of environmental factors such as exposure to toxins, infectious agents, and physical trauma. Our support for people with ALS and those working to save them is vital.