IntrinsicTina

My chief challenge right now is mouth management. That is not a euphemism for not swearing, though a few caregivers may argue that. I'm talking about the very things that healthy people never even think about; the  lubrication of mucosal linings and mucus evacuation. ALS has blessed me with an overabundance of mucus, otherwise known as secretions, and has taken away the ability to manage that abundance. A healthy body just clears it away by salivating then spitting or swallowing. I've lost control of my tongue, along with air pressure, thus I cannot spit nor swallow properly and must create work-arounds. My ALS doctor, actually the pulmonologist, prescribed two machines; the suction machine to remove secretions from the mouth and throat, and the cough-assist which brings secretions back up from my esophagus and trachea (windpipe). Both of which can be very traumatic. There is nothing quite comparable to having a hard plastic wand rammed down the gullet, or into the soft pal...

First and foremost, it is important to know exactly what to do to keep me safe. Bring a cupful of water and a toothette (swab) to the food table. This can be used to moisten my mouth, to move food from the roof of my mouth or to remove food.  Be prepared to call for additional help from nursing in the event of a choking incident. Pull the call light cord from the wall.  Make certain patient is upright. For me, 90-degrees is unsafe for respiration.  Temperature check. Touch food to patient's bottom lip whenever presented with hot, fresh food.   Spicy factor. Spicy or overly sour foods can produce excessive saliva. No thin liquids by mouth. Jello turns into a thin liquid. No mixed textures. Soups are the usual suspects. Small bites.  No multiples. Loading the spoon or fork with small pieces of food creates a hazard. I can't track.  No flat pieces. Sliced cheeses, meats, pickles, etc. Can't track within my mouth.  Use gravies, sauces, an...

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'm on a modified diet.  I did not choose to be on this diet. The management of the facility defers to the speech therapist. Speech therapists professional opinions vary, in my experience. My first speech therapist was thorough and gave me a standardized form, detailing recommended diet, and guidelines pertaining to oral care: Check for pocketing after every meal; Small bites; Sauces and gravies to moisten foods for cohesion, No mixed consistencies; Foods to avoid; Foods to Beware of; (Liquifiable foods like jello and ice cream); Liquid recommendations; thin, syrup-like, pudding, npo; Alternate sips and bites; and such.   I think informed choice is the fairest objective. But despite being of sound mind, I do not get to choose. I will, however, endeavor to educate. The Dysphagia Advanced Menu clearly says hash browns but the kitchen sends mashed potatoes. Mashed potatoes just aren't appetizing at breakfast, but catsup on hash browns or sliced, fried potatoes (aka Home ...

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...

I have a hole in my chest. Located right between my breasts. Yesterday, my husband got an eyeful, which he didn't ever count on seeing. I had an appointment with a gut doc, otherwise known as a gastroenterologist, to get a new PEG tube installed. What an eyeopener. I was already anxious, sweating my previous visit where the doctor ripped the still-inflated PEG from my unmedicated chest, sending me into shock. I'm happy to report this visit went substantially better. My caregivers told me that my Mic-Key style PEG, (percutaneous endoscopic gastronomy), or simply, feeding tube, closing flap was breaking off and likely needed replacement. They feared they wouldn't be able to use it to administer my liquids and medications. Replacement of feeding tubes require a doctor's visit, not an easy task for an ALS patient in hospice; I require a ride in a cabulance and an attendant, familiar with myself, my particular needs, my communication system and it's idiosyncrasies,...

1 1 1 2 I feel good, I knew that I would now... , screams the Godfather of Soul, James Brown. Music and soul food was the point of the night...another heartfelt offering to we, who have found ourselves, less than whole, victims of circumstance, ripped from our lives...such as we were...into such as we are. A night to forget our unfortunate circumstance, and remember who we once were...through music and food. We entered a roomful of musical notes, literally and figuratively, hanging from the ceiling and filling the air, spilling out of music videos. Familiar and new friendly faces greeted us, making certain each and every one of us was well-situated and comfortable, presenting us with printed menus. Like a well-appointed restaurant, with a well-paid wait staff, it's easy to forget that most are volunteers with hearts of gold. They could be home watching Game of Thrones or going on their own night out, instead, they chose to be here at Bailey Boushay House, making our night ...

Living in a nursing facility and having mobility issues gets one automatically placed in adult diapers. (a real ego crusher being forced to unlearn a lifetime of good toileting habits) I'm fortunate enough to be in a facility run more humanely, and can, on occasion, use a bedside commode. However, I must be hoisted by lift and sling, sans dignity-preserving covering, to be deposited upon said commode, like a bottomless, lame zip-lining ride, hoo-hah hanging out. And that's not the most cringe-worthy part! Add two well-meaning, albeit bumbling patient care technicians, who cannot retain the procedural steps to transfer me and must discuss, start, hesitate, rediscuss, restart. Whilst I clench butt cheeks, rolling my eyes at the absurdity, and try not to think ill thoughts. They finally get me up in the sling when progress again ceases. At the same time, suspended a foot over my hospital bed, my bowels moved infinitesimally. I scolded them in panic, disregarding my dysphasia, my...

Following another lukewarm, under-spiced meal of chili, really a mere suggestion of chili, my husband wanted to know what I wanted to eat from the local Italian joint. I indicated the beef bracioli. "Bracioli is usually cooking long and very tender. Ask them.", I typed, deleting errant keystrokes and retyping. He kept steering me to spaghetti and meatballs, forcing me to defend my choice. Spaghetti gets hung up in my throat, choking me. Then he goes on about the veal parmesan. All the while I'm trying to speak through the Tobii, fighting it to "see" me. By then, I'm getting frazzled. Then he tosses out that I'm purposely hiding the top line of my text on Tobii, a defect that I have no control over, that frustrates me to no end! I lost it! Screaming my wordless, soundless frustration, tears streaming down my face, blood pressure erupting, my impotent rage trapped within my useless ALS-ravaged husk of a body.

22 As a person with ALS living in a nursing home, I encounter much ignorance and get homogenized care. That is not saying my caregivers are stupid. On the contrary, they are intelligent and highly skilled. The problem is that ALS is not your typical disease. To effectively and safely care for us, one must have a thorough understanding of ALS disease processes. ALS destroys nerve cells in the brain and spinal column that control muscles, muscles that control arms, legs, eating, and breathing. As these nerve cells die, they cause itching, numbness, spasms, involuntary movement, varying degrees of pain, and, ultimately, paralysis. It's extremely important to understand what is NOT effected by ALS. Mental competency is NOT effected. Although, there is growing evidence of possible emotional involvement. Sensory is not effected, that includes the senses of touch, smell, taste, sight, and hearing. In my opinion, caregivers who employ critical thinking skills fare far better with ALS p...

20   1 I gotta talk about it! I had another scrumptious dining experience, here at Bailey Boushay House! And if you're one of my regular readers, you may get the impression that I only blog about Italian dinners. However, I will tell you now, I'm a foodie. French, Indian, Thai, Japanese, Vietnamese, Columbian, Mexican, Tex-Mex, African, Irish, American. By God, if it's a foodstuff, I'll probably try it and, quite possibly, like it! It's coincidental that I'm, once again, going to rave about the awesome Italian dinner we enjoyed. To mix it up for you, I'm going to start at the end. That's right, if I had the option, I would've had dessert, first. Of course, I may well have cheated myself. Dessert was not particularly Italian, but it was my personal favorite...Creme Brulee´. Imagine this...Chef, clad in his classic chef whites, rolls his silver cart of magic into the roomful of satisfied, yet expectant, diners. Atop his cart, whipped cream, lady fing...

I've had some amazing caregivers over the course of my ALS journey. In fact, I've had some amazing friends who acted in place of caregivers, in my tumultuous early days, when I lost mobility and emotional degradation (unbeknownst to me at the time). Marcie comes to mind. She dropped everything to care for me, despite the disadvantage of not having any real idea of what ALS was. As I deteriorated, my hands failing, using a cane, and becoming unable to dress myself, she prepared food and babysat me through the night. (My husband worked the graveyard shift.) If you saw the movie, "You're Not You", and remember the bathroom scene with Hilary Swank and her new caregiver, played by Emily Rossum, awkwardly maneuvering urination and wiping, then you witnessed Marcie and I. She was great but I focused and built upon perceived negatives (my motor neurons NOT at work). I severed our relationship due to exaggerated fear and anger. At the time, I thought I was astute and jus...

"If you are trying to kill me, raise the head of the bed all the way and hold my arms forward on the pillow. It allows the torso to collapse down and crush the diaphragm." I said this to my patient care technician this morning, following a choking incident. Ungrateful, huh? She's feeding me and I'm an asshole! In my defense, I've had two days of caregiver mis-steps and I'm at wit's end. I get tired of struggling for my life. I mean, beyond the ALS.  While being turned onto my side, I had to give detailed step-by-step instructions (veritably impossible with severe dysphasia), when the caregivers could not understand that I needed them to move my foot for me. No matter what I said nor did, they insisted on repeatedly asking if I wanted a pillow.   After becoming agitated, the charge nurse came to sort out the problem. Unfortunately, I was unable to respond, while face down, neck wrenched.

23 .1 Raised some Hell today. Do not f**k with my food. I thought I was dealing with enlightened, educated, patient-centered people at this care facility. I am in control of my mental faculties and I've demonstrated that I am willing to modify my diet to keep safe, within the limitations of the declines I'm experiencing, as a result of ALS. I understand that any misstep on my part could result in my death. I accept that and am willing to absolve the facility of any responsibility. Therefore, I believe I should be in control of my preferred diet. I'm on advanced dysphasia as I was coerced to "try" it. Now that I've experienced and found it to be unsafe for my "brand" of dysphasia, I wish to revert back to the regular diet menu. However, the management denied me that basic human right and dignity. The following is my argument as to why their idea of Advanced Dysphasia Menu is actually more unsafe: "Your advanced dysphasia menu is unsafe. Jel...

Plastic garbage bags and totes litter my floor but they don't contain trash; they contain stories of my life, in the form of clothes. I have ALS, otherwise known as amyotrophic lateral sclerosis, motor neuron disease, or Lou Gehrig's disease. This degenerative neuro-muscular disease destroys the motor neurons, the communication system between the brain and muscles, which renders one paralyzed and breathing compromised. There is no treatment nor cure thus ALS is 100% fatal. Since I find myself in the latter portion of the disease, a quadriplegic, confined to my bed most days, I have no practical use for much of my hard-earned wardrobe. Finally the stars aligned where I could bear the dreaded chore, and my husband was willing to transport the dozens of 30-gallon spring green totes, full of shirts, pants, robes, career-wear, sportswear, and dresses to my nursing home. (Yeah, I live in one of those! It's where one goes when one doesn't purchase long-term care insurance ...

I've been critical of how slow communication is on a speech generating device; pair that with a mind-reading, impatient, git-r-done husband, and you have potential for comedy. A few nights ago, my micro-bead-filled neck pillow sprang a leak. My caregivers placed medical tape over the offending seam, in an effort to stem the flow of teeny, tiny, little, electrostatically-charged, styrene beads and set it aside, so I would remember to ask my husband to buy a new one. Tonight, as he was trying to get out of my room at, what he considers, a decent hour, I anunciate "p-i-l-l-o-w" to alert him to an urgent need and begin visually-pecking out instructions on the Tobii: T-a-ke m-y b-l-ue p-i-l-low. I n-eed y-ou to b-u-y a n-ew o-ne b-e-c-ause... " Riiiiiip. Off came the tape and out spewed a thousand little white balls. Oh.

My friend, Peter is meeting with the management of our "home" to discuss ideas on how to make it a better place for ALS patients. What a great idea and a much more positive position to come from than I come from. I'm not exactly certain of the format tomorrow but since I cannot communicate quickly on-the-fly, I better write up a few ideas from my viewpoint. Since ALS robs us of our muscles, but differs in which ones, it's important to be fully educated on the effects of muscle loss by different regions of the body. While nurses learn anatomy and physiology, I don't believe PCT's, CNAs, and such get that education. And, let's face it, book learning is vastly different than hands-on experience. I find the PCT's, by and large, far more adept at attending to the activities of daily living, particularly, if they have experience with people with neurological deficiencies or brain injuries. They should get intensive instruction on ALS. It's remarkable...

I'm in a really good care facility, I really, really am.  Therefore, I am loathe to complain as much as I do. It would be incorrect to assume that Bailey Boushay House is an awful facility based on my complaints thus far. On the contrary, it's a fabulous place with mostly high quality caregivers. (I'm in a position to know.) I'm upset about a recurring problem I'm having with a male charge nurse. The first time I became aware of him was following my arrival, February 2015. I was struggling with caregivers, unfamiliar with my care, who placed me in a situation compromising my breathing. As a paralyzed person, with severely impaired speech, I was fighting a losing battle for my life. I was, however, able to make some noise through adrenaline-fueled panic yelling. He turned away in the hallway, muttering "Oh great, another noisy one." or a close approximate. I've had numerous negative encounters with him since. When responding to my calls, he used min...

I read other people's blogs and get critical of my own. I'm not positive enough, not eloquent enough, not organized enough; I'm far too arbitrary of topic. I'm unable to add pictures and links due to system limitations and that frustrates me. Next thing you know, I'm not blogging. I have to step back and remember why I blog. I blog for myself. I blog to remember. I blog to communicate. I blog to work things out in my head. I exorcize demons. I pour out my heart. I blog to say what my lips cannot. My blog is my voice. .