Early Summer Scent

Artist Profile

• ALS Momo-chan's Dad

  I am a patient with amyotrophic lateral sclerosis (ALS). In October 2021, I went to a respiratory medicine clinic because I was having difficulty breathing while walking. I was diagnosed with asthma. After that, I went to Tokyo Medical University Hospital and National Center for Global Health and Medicine Hospital, but the cause remained unknown. On June 8, 2022, I was barely able to breathe, but somehow made it to Keio University Hospital. They said my respiratory muscles were damaged. My lungs were not the issue. At that point, I realized, This is incurable.Upon researching online, I discovered that 2% of ALS cases originate from respiratory muscle dysfunction. After undergoing various tests, I was transferred to Osaka in July, where my diagnosis of ALS was confirmed. Seventy percent of ALS patients in Japan die without undergoing tracheostomy. Since my respiratory muscles were the only ones affected, I felt it was too early to die and resolved myself to eventually undergoing tracheostomy. Just two months after the ALS diagnosis, on September 7, 2022, I underwent emergency tracheostomy due to pneumonia, followed by laryngectomy two months later. ALS is an incurable, progressive, and extremely severe disease! It is a terrifying illness where all muscles in the body eventually lose function, including the eyes. I am sharing videos of my life, focusing on the uniqueness of my ALS onset in the respiratory muscles, aiming to halt progression and achieve improvement. I also create music while bedridden. Translated with DeepL.com (free version)

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