SARASOTA, Fla. -- The Ice Bucket Challenge is helping raise awareness and funding through a viral campaign for ALS, better known as Lou Gehrig's Disease. It's a disease that impacts tens of thousands of American's.
ALS is a disease of the nerve cells in the brain and spinal cord that control voluntary muscle movement. It robs people of their ability to walk, talk, swallow, and eventually to breath.
When Julie Swan’s son was diagnosed with ALS in 2012, she says the doctor talked around what they were there to find out. “So, do you really think it's ALS? And he said ‘of course it is. That's why you're here.’ So I kind of wanted to punch him in the throat. Kevin, however, leapt up from the examining table and said. ‘Okay, it's got a name, we finally know what it is, now we have to go fight it.’”
Rather than curling up and living the rest of his life as the doctor told him to do, he felt that he was put on this earth to do something important and founded a life story. “He created the foundation to raise the money to do public service announcements to do public speaking, and then just as importantly, if not more, to help fund research for ALS.”
ALS is difficult to diagnose because there isn’t a set test to confirm a diagnosis, says neurologist Dr. Gregory Hanes. “So the three symptoms that would be the most common would be weakness of the arms and legs, slurred speech, or respiratory difficulty.”
Although there is currently no cure for ALS, Dr. Hanes says we certainly can impact the quality and length of life. “We have medication which is FDA approved to slow down progression of disease. Just being part of an ALS clinic like we have here that is a multi-disciplinary clinic actually results in better survival.”
Nutrition and pulmonary support can also help prolong life. “There's actually equipment that people use, similar to sleep apnea equipment, that actually can be applied when they sleep that can actually help their respiratory muscles and make them feel less short of breath.”
The MDA ALS clinic in Sarasota helps uninsured and under-insured patients with an ALS diagnosis. ALS is one of the diagnoses that triggers a relatively rapid designation of Medicare, which may be used retroactively.
Average life expectancy, without invasive mechanical ventilation, is approximately two to five years from diagnosis. But with advances in research and improved medical care, many are living longer, more productive lives. Half of all affected live at least three years after diagnosis; 20% live five years or more and up to 10% will live more than ten years.
For more information on ALS, visit www.alifestoryfoundation.org.