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Me No Speak

Telling people what I need. It's the bane of my existence.

I have ALS, amyotrophic lateral  sclerosis, or Lou Gehrig's disease. As such, ALS has no treatment nor a cure. It has myriad symptoms that lead ultimately to death: mucus gone wild, muscle spasms, emotions hijacked, paralysis, swallow insufficiency, and voicelessness, to name a few. I'm going to pick at voicelessness, actually unintelligible speech. Yeah, I  make noise, but few can discern what I'm saying.

Unfortunately, I have a high number of caregivers unfamiliar with intricacies of my care. As such, they all think they are capable of attending to my care needs but, sadly, they are not. Take turning me in bed, as in the numerous diaper changes I require in a day. Due to muscle atrophy, or death, surrounding my lungs and chest, I use my belly and diaphragm to breathe. This requires my caregivers to handle me by my shoulder and hip, and not to lean me against their body. They don't naturally do this which is bad for me. I can only say "Off" to which they usually argue that they must hold onto me or I will fall off the bed.

"Well, no shit!", I think, "I have ALS, not memory loss." Then, there are those who remove their hands and allow my body to lean against their bodies. Now I'm really struggling. Allowing the weight of my body to rest against theirs is worse, as I will tire once the adrenalin of the fight or flight response peters out. If I had custody of my voice I would say, "Turn me by my hip and shoulder only. And don't lean against me, please." 

Life with ALS would be so much easier.

Consider this, I'm on my side, needing suctioning but can only just manage, "Mouth" to indicate the vicinity of my problem. Now it's up to the caregiver to play 20 Questions. "Do you need it wiped?" "Do you need suctioning?" I nod ascent to the latter. Unfortunately, it's about now that I realize mucus is not draining out of my mouth as I need to be turned a bit more. I say "Over".  However, she refuses, citing lack of space to do so safely.

I insist as I only require my shoulders to be rotated about a centimeter and can be done safely. Sadly, she's not a PCT, and doesn't seem to realize this. She grabs my shoulder underneath and yanks it forward, bringing my shoulder in exactly the wrong alignment, stressing my shoulder joint nearly to dislocation, causing me considerable pain. If I could speak I would have prevented all the missteps and the pain or at least be able to communicate my pain.

Do you know I've been scolded more than once to "Use your words" or some such sentiment by skilled caregivers. And worse, I've been told "I cannot understand you!" and walked out on many times. Is this really the best caregivers can do? 

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