Let's talk about ALS
This “Ice Bucket Challenge” has certainly brought awareness to amyotrophic lateral sclerosis (ALS), but how much do we really know about the disease?
Let’s start by sharing what ALS is. Amyotrophic lateral sclerosis (ALS), commonly known as Lou Gehrig’s Disease, is a progressive disease of motor nerves (neurons) in the brain and spinal cord.
When the motor neurons can no longer send impulses to the muscles, the muscles begin to waste away (atrophy), causing increased muscle weakness.
1. What are the symptoms of ALS?
- Initial symptoms may include weakness in the arms or legs, slurred speech, neck weakness, or unexplained shortness of breath. Regardless of how it starts, ALS is ruthlessly progressive and will ultimately affect all of these things.
- Unlike stroke, where slurred speech and weakness come on suddenly, ALS starts off slowly and then gradually worsens.
- Although ALS is not primarily a painful disorder, there may be severe muscle cramps and spasms in the extremities.
2. How is ALS diagnosed?
- There is no one test to diagnosis ALS. Although much research is being done into finding characteristic blood or spinal fluid abnormalities unique to ALS, it is still a “clinical diagnosis.” This means that it is diagnosed based on a detailed history, physical exam, and testing to exclude mimics of ALS.
3. What types of needs will a person with ALS have as the disease progresses?
- As mobility worsens, there is a need for ankle braces, potentially canes or walkers, and ultimately a motorized wheelchair.
- As speech worsens, a text-to-voice communication device is helpful. This could range from a tablet device or cell phone up to a sophisticated device controlled by eye-gaze.
- As the disease affects the swallowing muscles, a feeding tube is commonly placed for ongoing nutrition.
- Non-invasive ventilation with Bi-PAP devices can be very helpful if there is respiratory weakness.
4. For those who know someone suffering with ALS, how can they show support?
- The physical burdens of ALS are significant. But for many PALS (Person with ALS), the emotional and psychological aspects are what make it most miserable. So keep in touch. Don’t stop calling or sending emails. If anything, this is a time when support is needed most.
- The Ice Bucket Challenge has been great for ALS. But the hope of course is that folks don’t just watch the funny videos, but learn more about the condition and take the next step of learning how to get more involved and show support. It’s been great to see participants pointing to the ALS Association website (http://www.alsa.org/) or the Muscular Dystrophy Association (www.mda.org).
About The Author
Andy Galbreath, DO, is a physician with Sentara Neurology Specialists on the campus of Sentara Princess Anne in Virginia Beach. He is also Clinical Director at the Sentara ALS Clinic in Virginia Beach, Va. The Sentara ALS clinic is a “multi-disciplinary” clinic, which features a physical therapist, occupational therapist, speech therapist, respiratory therapist and patient care coordinator, in addition to the physician. The goal of this approach is to optimize function and improve quality of life through use of supportive equipment and technology.