Taking a Deep Breath

Tuesday, 14 November 2006

Today was a Professional Development day full of meetings. Nancy Skerritt, from Maple Valley (Tahoma School District) in Washington state, came to do workshops with us on reading comprehension scoring. Tomorrow will be another day of workshops as well.

Dad's been using his bi-pap machine at night now while he sleeps, and he used it this afternoon during the day. The doctor advised that he use it during the day so that his neck muscles don't overcompensate and try to work so hard when he's trying to breathe during the day (as his neck really pulsates when he takes each breath). Today, he asked to use the machine, which is great since months ago, he was so resistant to using it. He has discovered over the past month that it works and helps him breathe ... Imagine that!

My stepmom and I are currently looking for additional speech devices to help Dad communicate. His voice is weaker and on some days, his voice is barely a whisper. As his muscles weaken, he eventually will lose his ability to speak with his voice. Because this disease never affects his mind, we will need to find a way he can still communicate his smartass remarks. And, we cannot always lug around the laptop everywhere and grease off his nose so that the sticker will stick to it.

So, as an additional device, we are going to try to make a communication board like we've seen other patients use. We can use plexiglass or a rectangular board with a hole in the middle (like a TV shape), labeled with letters of the alphabet. We'll have to train him now, while he still has his voice, to use his eyes and get used to it so that we caregivers are comfortable with it as well.

Tonight is the second Tuesday of the month, so ALS Support Group meeting. It will be good to see others and check on how Lisa, a young client with the Bulbar onset of ALS (which is more progressive as it affects the speech/respiratory first) is doing. Last month, she was unable to attend the ALS dinner banquet because she was in the hospital for respiratory issues. I hope she and her family will be there tonight. The support group has become something that my dad looks forward to going to. (Plus, we always potluck dinner!)