Turning ALS awareness into donations, hope
It has been a year since the ALS Ice Bucket challenge. Remember that? When almost all of us knew someone who had dumped a bucket of ice water over his or her head to promote awareness of ALS (amyotrophic lateral sclerosis, sometimes called Lou Gehrig’s disease) to encourage donations to research for the disease. The challenge exceeded expectations and raised $220 million dollars.
Around 5,600 people in the United States are diagnosed with ALS each year, and about 30,000 Americans live with the condition. The long-term prognosis is not optimistic. Some 50 percent of people live three to five years with the disease and 30 percent live from five to 10 years. A very few – like physicist Steven Hawking – live much longer.
ALS is a progressive neurodegenerative disease in which the motor neurons – the nerve cells that signal and control your muscles – degenerate over time. Eventually, the affected motor neurons die. That leaves the person with ALS unable to control the muscles that the neurons were connected to. Speaking, eating, walking and breathing can all be affected by ALS.
The onset of ALS is usually gradual and differs from person to person. The most common symptom is progressive painless muscle weakness, which can manifest itself as tripping, dropping objects, muscle cramps, twitching, slurred speech and abnormal fatigue of the limbs. ALS does not cause pain, numbness, tingling or loss of sensation and does not affect sight, touch, hearing, taste and smell.
If your doctor suspects you have ALS, he or she will likely refer you to a neurologist. To rule out other conditions, you may have one or more of the following procedures and tests:
• nerve conduction studies
• electromyography (assesses the muscles and the nerves that control them)
• blood and urine tests
• spinal tap
• X-ray and MRI
• myelogram (visualizes the spine)
• muscle and/or nerve biopsy
• neurological exam.
Because ALS is so difficult to diagnose, once you have a diagnosis of ALS, the ALS Association recommends that you get a second opinion from an ALS specialist to be certain you do not have some other treatable condition.
My friend’s grandfather died of ALS in 1970. There was far less known about the disease then and for many years her mother and aunts and uncles worried that they might eventually come down with the disease. They each rested a bit easier when they reached the age their father was when he became ill and they did not have any symptoms.
Most likely, my friend’s grandfather had sporadic ALS. In the United States, between 90 and 95 percent of cases are sporadic. They are not tied to any genetic factor. Only 5 to 10 percent of ALS cases have a genetic component. However, ALS does affect more men than women. It is also more common in people ages 60 to 69, and among white males and non-Hispanics.
Currently, there is no cure for ALS. But, there are many treatments that can help promote independence and maintain quality of life. These may include physical, occupational, and speech therapy, supportive devices and equipment, medications, a feeding tube and breathing assistance devices.
Money from the ALS Ice Bucket Challenge is going to ALS Accelerated Therapeutics, the New York Genome Center, the Neuro Collaborative and Project Mine. These organizations have been identified as central to finding the cause or causes of ALS and to developing successful treatments.
There is another ALS Ice Bucket Challenge this month, so consider a donation to help fight this disease even if you cannot stomach pouring a bucket of ice water over yourself.
If you would like more information on this condition and about local support and services, visit the ALS Association website at www.alsa.org.