Dear Caregiver,
I need for you to realize how much ALS impacts my breathing. Like most caregivers, you probably already understand that my muscles are failing me. ALS affects neurons in both my brain and spinal column, overexciting, then killing them. Hence, my fasciculations (muscle twitches, nee spasms), paralysis, dysphagia (swallow difficulty), and dysarthria (speech difficulty).
ALS affects my breathing making it difficult to breathe while flat on my back or when I'm set up at 90-degrees. Do not underestimate the effect, the weight, that gravity has on weakening chest muscles, including the diaphragm. It's like trying to breathe with a 100-lb weight on my chest. It can, literally, kill me. It's why I fly into a rage at caregivers, seemingly without provocation. I'm in fight or flight mode, trying desperately to live to see another day.
One of the most problematic activities is changing my Attends. It is essential to minimize the amount of time I spend flat on my back. Gather all supplies prior to reclining me, (includes brief, wet washcloths, sheets, pads). Also, raise the bed up for caregiving PRIOR to reclining me. Know your stuff. Don't expect me to give direction nor to respond to questions while reclined. If a delay is unavoidable, turn me on my side. I breathe easier on my side. If I am trying to speak, listen carefully. There is a problem or I would be quiet.
Make no mistake, I am high maintenance. I am exacting, a micro-manager, the stakes are high, SURVIVAL.
I need for you to realize how much ALS impacts my breathing. Like most caregivers, you probably already understand that my muscles are failing me. ALS affects neurons in both my brain and spinal column, overexciting, then killing them. Hence, my fasciculations (muscle twitches, nee spasms), paralysis, dysphagia (swallow difficulty), and dysarthria (speech difficulty).
ALS affects my breathing making it difficult to breathe while flat on my back or when I'm set up at 90-degrees. Do not underestimate the effect, the weight, that gravity has on weakening chest muscles, including the diaphragm. It's like trying to breathe with a 100-lb weight on my chest. It can, literally, kill me. It's why I fly into a rage at caregivers, seemingly without provocation. I'm in fight or flight mode, trying desperately to live to see another day.
One of the most problematic activities is changing my Attends. It is essential to minimize the amount of time I spend flat on my back. Gather all supplies prior to reclining me, (includes brief, wet washcloths, sheets, pads). Also, raise the bed up for caregiving PRIOR to reclining me. Know your stuff. Don't expect me to give direction nor to respond to questions while reclined. If a delay is unavoidable, turn me on my side. I breathe easier on my side. If I am trying to speak, listen carefully. There is a problem or I would be quiet.
Make no mistake, I am high maintenance. I am exacting, a micro-manager, the stakes are high, SURVIVAL.
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