CEDAR RAPIDS, Iowa (CBS2/FOX28) - The death of Professor Stephen Hawking this week is focusing new attention on the devastating impact of ALS, but also on the hope the iconic physicist represented as a survivor.
Hawking was seen as a rock star of all things space and black hole related, but also as a beacon of light for those in the corridor who are living with the same terminal disease. MDA Operations Coordinator Kassie Schmidt says Hawking not only lead the way in showing how technology and his eye-gaze voice device can make life better, but how ALS does not have to be a death sentence, “ Despite a disability you can live unlimited, I mean he did everything. I think we all know Stephen Hawking defied the limits for everybody. He went to space, he was a professor, he was one of the greatest minds to ever live and he did all of that with ALS.”
UIHC ALS Researcher Dr. Chris Nance says Hawking’s story is incredibly inspirational, but it’s also important to realize it is not typical, “ Professor Hawking living 50-years with ALS is very, very, very unusual.” Dr. Nance says sadly most patients don’t survive beyond five years. He says Hawking was fortunate to have the kind of 24-7 medical care to keep constant tabs on signs of pneumonia and other deadly complications which the average patient probably could never afford. At the same time, Nance says there is every reason to be hopeful a cure for Amyotrophic Lateral Sclerosis or what’s often referred to as Lou Gehrig’s Disease, will be discovered. He says three clinical trials are underway just at UIHC as patients who may not live long enough to actually benefit from the treatments, boldly step up to be part of the studies, “ Around the country and around the world there are different medications, infusions, stem cell transplants and everybody is looking for a cure for this disease.”
Dr. Nance says the diagnosis of ALS usually comes for a person in their late 50s or early 60s. He says it causes an aggressive deterioration of the nerves to the muscles leaving the patient with loss of movement in arms and legs and eventually the rest of the body, including loss of speech. In a cruel twist of fate, the mind, continues to function, as Professor Hawking so clearly demonstrated. Nance says while awareness, including the Ice Bucket Challenge, which raised more than $200-Million for ALS research, has helped, it’s important to note that a single treatment to try to slow the progression of the disease can cost nearly $150,000.
He says time and money are the keys to finally solving the mystery. In the meantime, the MDA’s Schmidt says it’s important to encourage more patients, as Stephen Hawking famously said, to push the limits and not be disabled in spirit, “ Knowing that there’s somebody out there giving a spotlight to the disease and really opening that up to the public to just raise awareness is important for everyone.”