My husband, Rahul Desikan, MD, PhD, was diagnosed at age 38 years with bulbar amyotrophic lateral sclerosis (ALS), a fatal, progressive neurodegenerative illness that affects speech and swallowing abilities first, followed by limb function and breathing. Rahul was a neuroscientist-physician and, ironically, had been studying neurodegenerative diseases like ALS before he was diagnosed.
Rahul’s disease was rapidly progressive. He tried many treatments including riluzole and edaravone, the only medications currently approved for treatment of ALS in the US by the Food and Drug Administration (FDA). He tried herbal remedies and energy healing, treatments that came with a promise to slow his disease progression and even reverse the disease process. Nothing worked. His worst fears of being locked in were realized within 6 months of his diagnosis. After being locked in, Rahul was able to communicate only through using a speech device or by blinking.
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Vijayaraghavan M. Improving Access to Clinical Trials for Amyotrophic Lateral Sclerosis Treatment. JAMA Neurol. 2020;77(6):671–672. doi:10.1001/jamaneurol.2020.0421
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