I’ll never forget the first time Jerry and I discussed his “self-diagnosis” of Amyotrophic Lateral Sclerosis – Lou Gehrig’s Disease. After 30+ years in the biotech world, there is nothing worse than “self-diagnosis” based on a Google search. No way this was ALS!
ALS is a neurodegenerative disease which quickly leads to muscle weakness and paralysis. We all know about the ice bucket challenge and Lou Gehrig but this is a rare disease effecting <200,000 people in the US. ALS is a medical paradox where the cause of disease is still unknown after decades of research and no biomarkers exist to guide treatment. No way this was ALS!
After seeing several local neurologists in FL, we made an appointment with Dr. Richard Bedlack at Duke. Dr. Bedlack is one of the premier ALS researchers in the world and a real character. Since you cannot directly diagnose ALS, the medical approach is to diagnose by exclusion. Once all other options are exhausted, physicians are forced to conclude the disease is likely ALS. While you’re never 100% certain, Dr. Bedlack confirmed that Jerry’s disease was consistent with other ALS patients.
With the support of Sue and their three children (Allie, John and Danielle), Jerry has been fighting this disease now for five+ years. His condition is more challenging every day but Jerry’s fighting spirit has never waned. In fact, just the opposite is true. He goes for infusions 10 days per month. When he enters the facility, you can see the room light up. Nurses come to joke with him and, even though he tells the same jokes over and over again, they still laugh with him.
More amazingly, Jerry has taken it upon himself to give hope to other infusion patients. He re-enforces the fact that with other diseases like cancer at least physicians have choices of therapies to treat patients. In his case with ALS, options are more than limited. Effective treatments are essentially non-existent. He encourages others to listen to their doctor’s advice and NEVER miss a treatment.
How does he maintain such a positive attitude and a smile on his face? I told you he was an inspiration. My guess is somewhere along the way he has inspired all the people he has met along his life’s journey!