Show 957: Help and Hope for ALS

Amyotrophic lateral sclerosis (ALS) is better known as Lou Gehrig’s disease. What does a diagnosis of ALS mean, and how do doctors and patients work together to improve the quality of life for people with this condition? We hear from a patient using an online resource called ALSUntangled.com to learn about possible complementary therapies that could be helpful to him. Is there any benefit from coconut oil or other alternative therapies?

We also talk with Dr. Rick Bedlack, the neurologist who started ALSUntangled.com and oversees it. He explains why this effort is beneficial for both patients and doctors and how and why he can offer his ALS patients hope. What is ALS, what is the prognosis, and how does it affect people’s quality of life? Dr. Bedlack describes some hypotheses about what might be causing this neurological disease. What is the connection between the flying squirrels of Guam, the blue-green algae in your local lake, the neurotoxin BMAA and ALS?

Finally, Dr. Paul Wicks of Patients Like Me discusses how people with ALS can benefit from online communities. Learn about the future of research on this serious condition.

Guests: Richard Bedlack, MD, PhD, is associate professor of neurology at Duke University School of Medicine and director of the Duke ALS Clinic. He is chief of neurology at the Durham Veterans Affairs Medical Center. He is responsible for ALSUntangled.com

John Snyder is an ALS patient in Austin, TX.

Paul Wicks, PhD, is vice president of innovation at Patients Like Me. The website is PatientsLikeMe.com