Symptom progression

Sample quotations

Declining motor function

I couldn’t turn over in my bed. When I woke up, I was so scared of the situation as I could not move. (ID5; 8 months after diagnosis; ALSFRS-Ra: 34)

Because I fall when I try to get up. Even when I wake up in the morning, I cannot stand up without my wife’s help. I’m good, just sitting on a wheelchair, but it has become too difficult to walk to the toilet. (ID9; 7 months after diagnosis; ALSFRS-R: 31)

Declining swallowing function

(Coughing while speaking) Perhaps, it is time to use TIV as I cannot eat. But in my case, I believe that the reason I may die is not because my limbs do not move, but because of pneumonia. (ID6; 7 months after diagnosis; ALSFRS-R: 38)

It went down the wrong way. Although I recovered by suction, I choked on my saliva. I was in a lot of pain. (ID10; 27 months after diagnosis; ALSFRS-R: 15)

Declining respiratory function

Last week, my SpO2 level drastically decreased, and my husband called a visiting doctor. I couldn’t stop coughing up sputum, and it seems to be getting worse. I started using oxygen. With oxygen, SpO2 was 92%, 94%, without oxygen or moving on toilet, SpO2 was 85%. It was a sudden event. (ID11; 67 months after diagnosis and receiving 2 L of oxygen; ALSFRS-R: 15)

Loss of respiratory function

Everyone’s life has a limit. As for me, it looks like I am at my limit now. (ID12; 4 month after diagnosis and using NIVb for 24 h; ALSFRS-R: 23)

I just could not move at all and I had difficulty in breathing. My physician said it is time to decide what to do. So, in this situation, I would like to be hospitalized soon. (ID13; 18.1 months after diagnosis, after using NIV for 24 h; ALSFRS-R: 10)