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.

我的丈夫拉胡尔·德西坎（Rahul Desikan），医学博士，被诊断出患有延髓性肌萎缩性侧索硬化症（ALS），这是一种致命的进行性神经退行性疾病，首先影响言语和吞咽能力，其次是肢体功能和呼吸。Rahul是一位神经科学家和医师，具有讽刺意味的是，他在被诊断之前一直在研究诸如ALS之类的神经退行性疾病。

拉胡尔氏病迅速发展。他尝试了包括利鲁唑和依达拉奉在内的许多治疗方法，这是美国食品与药物管理局（FDA）目前批准用于治疗ALS的唯一药物。他尝试了草药疗法和能量疗法，这些疗法有望减缓他的疾病进展，甚至逆转疾病进程。没事。在被诊断出六个月之内，他就意识到自己最担心被锁住。锁定后，Rahul只能通过语音设备或眨眼进行通信。