Third ALS Clinic

There was the third ALS clinic on March 10th.

He lost 3 pounds since the last time he was weighed.
He only weighed 102pounds.
He has lost 20 pounds from his original weight.

It started with Occupational Therapy.
His muscle strength has declined about the same degree as last time and we were explained about how he has space in his shoulder joints, the same explanation we had from the school OT. Because his left arm doesn’t move,(he can’t even raise it anymore) his right arm has to take on the extra burden so we were told that he should get help from somebody to take notes in class for him too. And she wrote a letter for the school.

Next in order were speech therapy, the main doctor, and the pulmonologist. For speech, just like the video examination, it was an instruction on food. Soft food must be chopped into pieces to make it easier to swallow before eating. Also, to always put thickeners in liquids before drinking. Never to use a straw, always drink little by little with a spoon. Were some of the instructions that we received. And, we were explained about things we need to watch out for when he gets a gastro tube.

The main doctor said that in totality there isn’t much progression from the last clinic. And regarding us looking for an easier, more practical speaking device, he told us about a speaking application on an iPhone and not the tobii. This software, Proloquo 2 go, is supposedly $189. The next clinic will be in May, 2 months from now.

The pulmonologist examined his breathing capacity. Just like last time, it was only 50%. We were told that this number is very low, so we need to at least get used to the BIPAP by using it a little by little. He said that the breathing gets shallow during sleep and is dangerous. We measured our son’s breathing during sleep and fortunately, it was the same as when he’s awake. We need to put more effort into getting him used to the breathing apparatus. I thought that I need to check him at night.

The things that especially worsened were, that it has become increasingly difficult for him to speak and that there’s a huge burden on his right hand. Those were the two.

The difference from the previous clinic were that my son’s expression softened and it was his usual smile and those were some happy things.

But, I am worried about his breathing.


Translated by Christine Shirota