We received lots of positive feedback on the ” A Morning With ALS ” video. It occurred to Lita and I that folks might not know the challenges that a PALS and their caregivers face on a day to day basis. We left out the hour or so that starts the day. First meal, diaper change, suctioning the nights secretion from my lungs, application of the ” outfit ” for the day. all cool stuff, but not everyone’s cup of tea.
With that said, we are going to create a video showing all the ways that I use to communicate. Lita thought it would be good to show the reason why , even though I am still able to speak, that I use multiple options depending on what it is I am trying to convey and to whom. So this past week , at my monthly trach change, she video taped the procedure. We are going to put that video up first so folks can see the instrument through which I breath and it will be easier to describe my speaking tools and techniques. So stay tuned!