IntrinsicTina

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 whi...

It happens all the time, I'm wary of sometime and on-call  staffers. They  "think" they know how to care for me. They do not. Even though I'm reassured by the full-time staffer that they will help them.They do not. So I am being changed, Turning me over onto my side, the on-call nurse doesn't turn me using my hip and shoulder, instead she rests her right hand onto my flank and ribcage. Due to dysarthria, I've lost the ability to speak consonants and rely on caregivers to learn the few words available to me if I'm without my speech generation device (SGD). I tell her "Off" and she takes her hands completely off of me and uses her body to block me from rolling off the bed. The other caregiver doesn't correct her for either move which impedes my ability to breathe. With ALS, I'm losing muscles daily, as this occurs, others take over. I used to have muscles that lifted my chest, allowing me to breathe, now my belly and neck help me. I...

I have been violated. Again. My trust betrayed. Again. This time, I was in the shower, talk about vulnerable! I have late-stage ALS, if I may borrow the terminology. ALS is not measured in stages, to my knowledge, and I've made it my business to learn all things ALS, for the past four years. ALS has taken away virtually everything a person can do, and almost everything I am. I'm quadriplegic. And I've lost the ability to speak. The greatest loss has to be speech. Because even though I have the best available speech generation device, which allows me to use my eyes to type, I no longer have the energy to get my point across to caregivers in time to do any good. I even lack the energy to communicate with the management to report abuse. Back to the shower incident. I'm so happy to be getting a shower. I figure I'm going to get a good one because one caregiver was a former shower aide, and she has showered me before. Furthermore, she is going to teach another how ...

Managed care, do not get me started. It is the bane of my existence and my savior. If quadriplegia has curtailed my activities, and it has, then being in a home has curtailed even more. I've had to dumb it down and set my standards low. Gone, are the halcyon days of getting in my wheelchair to go for a stroll or sit in the sun, or even sit in the sun room. Neither the nurses, nor patient care technicians, know how to put me in my wheelchair. Seriously. My chair has head controls and it is a bafflement. Most caregivers don't even realize I have head controls. First, they hit the left head pad when they lift the armrest which turns the chair on. Next, they sling me over and place me in the chair. The problem? My head, naturally, rests on the headrest, which accelerates and drives the chair and is beyond my control. Running over a caregiver or running myself into an obstruction are very real consequences of their ignorance. What could be worse? The caregivers remain clueless abo...

1 Overwhelming frustration, It is what I feel regarding life preserving efforts on me. ☹ As a person with ALS, I have respiratory issues. As a woman who loves her life, and doggedly clings to it, I employ the use of the cough assist and suction machines to expectorate and remove secretions, when necessary.  (That is a sanitized way to say machines suck snot from my throat and mouth so I can breathe. Gross, huh?) ALS ain't pretty. I am in my fourth year living with ALS and I feel the progression of the disease . Okay, I probably have made that pronouncement before: when my fingers triggered, froze, then failed; when it crawled up and stilled my right, then left arm; when I stumbled and fell, then went from cane, to walker, to wheelchair; when I was forced to use an adult diaper; when I was forced into a nursing home; when I was demoted to advanced dysphagia diet; when my neck weakened; when it became necessary to sleep sitting up; when I almost died of respiratory failure November...

I have an untenable situation; some of my caregivers do not realize how limited my speech is, how difficult it is to pronounce consonants, and thus limit my vocabulary. Add in my diminished lung capacity, further limiting available vocabulary; three or more syllables are simply not possible. Therefore, I must be concise and to the point. In fact, it is better not be relied upon to provide explanations. And yet, it happens daily and several times per day. Despite asking for yes or no questions, I get choices. Do you want to begin with soup or eat your entree? I cannot pronounce "soup" nor "entree" Nor can I physically point. Now, imagine the caregiver who plunks themselves down and asks, "What would you like to eat?" Further, imagine that I'm having an issue...my brief (adult diaper) needs changing. ...My speech generating device is malfunctioning. ...I cannot breathe and need suctioning, or need the cough assist machine, or to be,  simply, repositi...

2 Last night, 6/3/16, a new-to-the-facility nurse entered my room to administer my night medications via my PEG tube. I tried to tell her to access my PEG by unbuttoning my top; she disregarded my attempts to communicate, reached under my covers, and lifted up my gown. I dissuaded her by vigorously shaking my head, signifying negative to her actions, as well as vocalizing the words, NO and MY TOP, to no avail. She kept arguing her case, which clearly showed me that she was assuming that I was being irrational. I was forced to keep pressing my objection, wasting my precious energy. In the meantime, a patient care technician (PCT) who understood me better came along; I was able to communicate to undo my gown buttons and expose my PEG to make my intention obvious. Again, she, the nurse advanced on me, yanking up my gown. Again, I had to vigorously fend her off but now I was forced to argue my intention with two caregivers, who assumed irrationality and forced care upon me. At this poi...