IntrinsicTina

Do you cut toenails? Cut straight across, do not shape by clipping. This prevents ingrown toenails. This is my latest saved message, or phrase, that I stored in my Tobii. I save many messages to my augmentative and alternative communication (AAC) device, in the hope that I will remember them, and be able to retrieve at a later date, when next I need them. Trouble is, the next time I want to access this message, I must remember the exact wording I, originally, used at the time I saved it. Or at the very least, Do you cut...  Good luck with that!  Time passes and before you know it, you need someone to trim those tree climbers, again. This time your favorite, experienced caregiver is available. Obviously, you don't need to use your saved message. More time passes. Those pesky toenails grow. I may be dying...losing muscle, and my very breath, every day. Tell it to my toenails. 'Cuz they didn't get the memo. They are resplendent. Time to cut toenails, yet again. All new s...

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 ...

I am an undesirable. I have ALS. I take up way too much caregiving time. Oh, doubtless the caregiving industry wants the dollars we generate to fill their coffers, but we are a losing proposition. I've been in two managed care facilities now, and I can tell you stories of overpromising and underdelivering. Mismanaging, getting lost in the system, ignored call bells, not bothering to learn the disease process, and critical think solutions, train carestaff to the deficits. More than half the staff of this well-rated skilled nursing facility, could not verbalize what ALS is, I venture to say. And they are the best thing going for the ALS patient. I've been in residence for two years now, and the caregivers that attend me day in and day out, do not grasp the concept that I am safer, from a breathing standpoint, rolled up on either side, rather than be positioned flat on my back, where I'm subjected to the weight of gravity pushing down on my chest. For the first year, thi...

If my caregiver doesn't know how to react to a slight choking incident, I refuse to allow them to feed me. If you had a DNR Do Not Resuscitate order attached to your name, Wouldn't you? Furthermore, if you have a choking incident, the Powers That Be are eager to downgrade your diet. Yeesh! Does slurry sound good to you? (Involuntary shudder) If a caregiver doesn't know how to properly turn me, clean, or transfer me without obstructing my breathing or endangering me in some way, Why would I allow them to help me? It's my life that I'm PROTECTING. I want to live.  I dismiss a lot of caregivers from my room! A Helluva lot.  Nurses and caregivers, alike, must be able to communicate with me. I have a major speech issue, therefore, they should be able to work a rudimentary alphanumeric communication board or setup my communication device, or have a basic understanding of how it works. And yet, this is a major lack. A major lack and the root cause of all the safety iss...

1 Momentarily sad, and at the extreme risk, of being repetitive, I am frustrated. Why? Let me just state my sincere appreciation for having access to an AAC device, also known as a speech generation device. Without it, I would be trapped in a heinous episode of Twilight Zone or Black Mirror, having a lot to say and not be able to say anything. And in this day and age of technological "miracles". Heinous. I am one of the fortunate ones, whose insurance covered my device, with my diagnosis. I have A.L.S., also known as amyotrophic lateral sclerosis, or Lou Gehrig's Disease. It's a terminal illness, but before it kills us, it robs us of everything we have and everything we are. The ability to walk, raise our hands, dress and feed ourselves, talk, gesture, and, ultimately, breathe. But I'm here to discuss the ability to discuss, to voice an opinion, to rise up "as it were" and be counted.  I am a fully cognizant individual, informed, college-educated, an...

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...

I find it difficult to blog. I have plenty of ideas but executing those gems gets lost in the minutae of operating my Tobii, my augmentative and alternative communication device, which operates with the positioning of my eyes. One may think that I ought to just be grateful that I live in the computer age and get on with it. But my experience is that if we say nothing, you get nothing. How else do things improve? I'm an avid, daily user of the technology. I am also told that I'm one of the fastest users that my Tobii representative has ever seen and she covers several states. And, still, I have days when I abdicate and resort to communicating by practically, unintelligible speech, which wears me out and exasperates me. For one thing, I live in a nursing home situation with many caregivers, not one of them has speech generating device experience nor training. This is ludricrous! As one of many patients with dysarthria, major speech deficits, I believe responsible caregivers ...

I am honored to get to preview and test cutting edge solutions for Microsoft with regard to eye gaze technology enhancements. It makes sense considering we live in the land of Microsoft. I, especially, enjoy giving feedback and being able to be part of the solution, since I've been so openly critical of current technology options. Without giving away any secrets, they're working to improve the accuracy and usability of the eye gaze technology. They're also trying to give our "voice" more emotions and inflection. Less robotic, more realism. I'm heartened by their efforts, I'm only disappointed that it isn't instantaneous. I feel like I'm making a difference for the good of all people. Isn't that what all of us want? To make a positive difference. To matter.

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.

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. .

My husband asked that I write about my experience as a patient in the skilled nursing facility, Lifecare Center of Federal Way. It's a difficult endeavor due to my many traumatic experiences and the impact of fear and anxiety it left upon me. I hesitate because I don't want to insult the few good souls who made it bearable.  One may wonder why I did not document issues as they occurred. At first, I was unable to write due to the progression of ALS. Although, I owned a speech generating device, it was new and I was unpracticed. Additionally, I was having issues dealing with either frontotemporal disease (FTD) or PseudoBulbar Affect (PBA). My emotions were raw and I was laid open to impulsivity and acting rashly. (It's important to know what these conditions are NOT. They are NOT dementia. They do NOT effect cognition.).  I mention these deficits, not to evoke pity, but to gain understanding. Finally, I was intimidated. Fear of reprisal was more than a vague fear, on at lea...

Talking to a caregiver the other day, she mentioned that she "hates Facebook because it's so fake." I've heard the same charge made about funerals and memorials. I have a different point of view. Look closely at a tree; not very attractive if is has a big ole burl blemishing the appearance. What about broken branches from the last storm? And the gaping hole, former home of birds, current home for squirrels. What a flaw! N.ow that I think about it, it's not symmetrical. Hardly a perfect specimen with bugs burrowing into the bark and vermin running about, up and down the trunk. Yikes! Now step away from that tree, see it with fresh eyes. You see it more generally; it's a tree, home to birds and squirrels, a food source for woodland creatures, a focal or backdrop for the nature photographer. Perhaps it gets harvested, becomes furniture or lumber to build a home. And that ugly burl? Goes to the craftsman to become stunning art. Maybe it falls to the woodsman...

My posts seem to evaporate into thin air, or so I thought. In order to explain, I must first explain how the Tobii I-series alternative and augmentative speech device (AAC) and speech generating device (SGD). I'm able to access many websites through the SonoKey software. Being able to interact with those websites depends upon numbers attaching to the operators. This allows me to make selections and operate portions of the website using eyegaze technology similar to a mouse. It's marvelous technology and I'm grateful for it. However, it is plagued with problems. Usually, and I don't know why, by the time I enter the numbers corresponding to the operation, the numbers change. I've tried to wait-out the numerical change and been foiled. This makes accuracy of selection difficult. So frustrating! Especially, when the selection evaporates a post I've worked hard on! Not only that but I've been offered a choice "Are you sure you want to delete this post...

Today is my birthday--another milestone met--another year of birth anniversary. I didn't expect much of a celebration this year and that was fine by me. I tire easily and can't bear up under the social expectations of others. Smiles and efforts to speak, with or without my speech generating device, taxes my energy--quickly. After a lifetime of acquiring stuff, I need nothing anymore; you cannot take it with you and I live in hospice where I live my life in a room. I'm pretty happy to have a delicious morsel that I can manage to eat despite my mouth, tongue, and throat weaknesses. Tonight was delectable and tender Lamb Curry, individual-size banana splits, chocolate mousse, and cupcakes. My mother and sister, Renee, surprised me with a visit complete with gorgeous fall flowers, gourmet cupcakes, a gift of audiobooks (my favorite kind) and their time, despite health challenges. My husband showed up while they were here, helping to carry the conversation, thus I did not ov...

I spend my days in solitary trivial pursuits and in slumber. Listening to audiobooks, contributing to websites like patientslikeme and goodreads, blogging, reading the Daily Reflection on the Alcoholics Anonymous website. I have a Word of the Day delivered to my email from Dictionary.Com. Despite my impending demise, I'm intensely interested in learning. Classics, mystery, paranormal romance, are my preferred genres. But I've ended up reading non-fiction, biographies, true crime, and climbing books. On Good Reads, I document the books I've read, rating and reviewing them, and sharing these on Facebook. Oh yeah!  I forgot. I spend time on Facebook, communicating with family and friends and subscribing to pages centered around PALS communicating with PALS. This ended up being one of my main means of communication. On Patients Like Me, I document my ALS progression, my moods, and communicate with other persons with ALS (PALS) from all over the world. Note: ALS is also kn...

After catching up another PALS blog, it put me of a mind to do what I learned in the recovery community, make a gratitude list. While I've had to endure losing practically everything I've worked for and who I am, I've got a lot to be grateful for. I've been abandoned by my husband, pigeon-holed in a nursing home, and virtually left for dead by family and "friends" but I still have much to thank my lucky stars for. I live in the best facility in the state of Washington for people with ALS. While it's not exclusive to ALS sufferers, it is a place that has the best resources available for our unique and rare disease. My room has a built-in lift (EWC), fresh paint with low VOC, linoleum devoid of stains and rips, a large sunny window, original artwork, tech-saavy appliances, namely a flat screen television with a Blu-Ray Player that is operable by my Tobii speech generating device (SGD). Yeah, I own my SGD! I'm extremely grateful to be able to communic...