As if the Christmas weekend had not been busy enough, Monday was our regularly scheduled clinic appointment. This is a four hour or more time where we see the neurologist, pulmonologist, respiratory therapist, physical therapist, occupational therapist, speech therapist, dietitian, communication specialist and the social worker. Just typing all that makes me tired! Since this was Sherry's (my caregiver) long day, and she may also have questions we took her with us.
I always have mixed feelings about the entire day. It is an opportunity to ask questions about all the little things, but it also points out the changes my body is making. I really like the ostrich approach, head in the sand, if I don't say it out loud it isn't happening. The good news is my legs are still strong. The bad news is that everything else is deteriorating. What does this mean? My left arm, even with the bionic brace is not able to do as much. Muscles in my mouth and throat are having trouble with the swallowing process, so I am choking more often. Since I have been using my Bipap 24/7 they don't even bother to check my lung capacity. The fact that it was at 16% last time may also have something to do with it. :-)
Taking into account these changes, recommendations are made. These include some additional modifications to my wheel chair controls so I can continue to run around and get into trouble. Another suggestion was to have a barium swallow test to see if eating will become recreation. (Not looking forward to that.) Meanwhile they suggested I start using formula in my feeding tube. Previously I had been drinking ensure because it was taking me about an hour to eat.
One other change was more fun. We are starting to look at speech generating computer programs. There are programs where you can type in what you want to say, but that is a bit of a problem as my hand is not doing real well. There are also programs that will track eye movements in typing, then speak. Another possibility is foot controlled track ball and switch. I still talk and can be understood most of the time. We are still exploring options. The ALS association communications specialist can get other machines from the manufacture to try.
Good or bad, there are always new things to learn. Looking at how fast some others have progressed, I really am lucky to be changing so slowly.
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