

十九で出会って
あの時 遠い未来だった今
閉じ込められてゆく身体の奥で
それでも君の声が そっと響く
触れることも 話すこともできないけど
僕は今もここにいる
暗黒の深い闇の底から
繋いだ心の糸で救われた
この命尽きるまで 君を想うよ
変わらぬ想いを抱きしめて
果てしない闇の奧
語れずとも瞳で伝える言葉
それを君はちゃんと受け止める
涙の跡がかすかな未来への轍
僕はまだ明日に進むよ
ずっとそばにいてくれるから
沈み切った暗闇の底
繋いだ心の細い糸に
しがみついて救われた ここにいるよ
変わらない愛を 抱きしめて
若かったあのころは思いもしない現実
でもね言葉より確かな 手の温もり
君はこんなにも優しくあたたかかった
繋いだ心が 暗黒を照らす
こんな運命なのに君が命をくれた
この先もずっと君を愛してる
変わらぬ想い 胸の奥に失わないように
諦めないで もう少し 生きる
愛する君と ささやかな未来へ
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ALS Momo-chan's Dad
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ALS Momo-chan's Dad
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ALS Momo-chan's Dad
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ALS Momo-chan's Dad

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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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ALS Momo-chan's Dad