IntrinsicTina

I wish that my caregivers were allowed to access my blog. I guess for the sake of privacy laws, I lose what could have been a very valuable resource to communicate. Early on in my AAC device using days, I explored ways to type and save documents using my eyes. I was delighted to find a method to save document files, right on my Tobii Dynavox device. Unfortunately, I also quickly discovered how easily it was to overwrite or, simply, delete a file. Not at all like a Microsoft product. Much too volatile. I find it impossible to describe how morale crushing it was to pour heart, and dogged determination into describing a best practices on my care to find it vaporized precisely when I needed it. I tapped my Microsoft resource who said "not a problem" but it never materialized. People forget. That left an online resource; I already had a blog but would it be compatible with gaze technology? It was. Now I, painstakingly, peck out my heart, soul, complaints, instructions, blurb...

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...

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...

As a kid, I loved riding in the car, especially long trips; roadtrips with my grandparents were the best. On these trips, one was sure to encounter big rigs, coated in road grime, with Wash Me written with an jokester's fingertip. I am the big rig. I'm miserable, again, and not because ALS.  It's because I'm in a managed care facility. You could say that the scrutiny is on other things, not on whether or not I get bathed. In a nutshell, I'm dirty. My skin itches and hurts. My scalp itches, burns, and hurts. I'm supposed to get bathed three times per week, and I used to. But with the last major staff turnover, the habit, abruptly, ceased. I don't understand. I wear adult diapers and take daily bowel medications; thus I have an added need for cleaning. And I sweat. But, somehow, for some reason, I am no longer a priority. I'm an option. They do not understand the personal cost to me when I do not get a bath or shower. I'm certain that if the sear...

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...

Got a chance to let my party goblin peek out a little at Bailey Boushay House, in Seattle, Washington. God, I love these parties!!! They are a real boost to my spirit. Day in and day out, I am in my room, pleasant as it is, I get starved for new understanding peeps to interact with. Additionally, I need new foods to pass over my bored palate. (Sorry, Daniel, as good as your food is, I am not accustomed to the limits set by institutional standards, for my level of dysphagia.) Thanks to Chef Daniel, I got a chance to sink my teeth into...wait for it...Beef Wellington, Stuffing, Sourdough Bread, Caprese Chicken, Cranberry Pear salad, and Broccolini. Following a fantastic meal, Chocolate Lava Cake accompanied by thick, rich, and creamy Egg Nog. How do I convey the deliciousness? My eyes rolled back and my taste buds practically sang. Mmmmmmmmmmmmm. ♪ Tis the season to be jolly, ate my fill, plus cake by golly. Fa-la-la-la-la-la-la-la-la-la ♪♪ Not only did we dine, we got to listen to...

23 23 Deep or shallow? Do I go deep within my soul or stay topical, light, and shallow? La, la, la, I love having access to audiobooks! Although having ALS has left me a quadriplegic and confined to my bed and my hospice room, I take flights of fancy and live alternate realities through the imagination of others. Then there is my reality which changes daily. I have the mindset that it is what it is, and I have done all that can be done, therefore I shall get on with it and be as happy and healthy as I can be. Take today, a fairly typical day in the life, I've been even keel, status quo. I had a good visit with my husband, no big blow-ups, a bit of mental tug-o-war, as dysfunctional, but loving couples do. Same with my caregivers, no big deals, some capable, others not so much. This night I request the shower chair which doubles as the commode. I get two of my favorite caregivers, one pretty efficient, the other an eager relative newcomer. I can appreciate the value of trainin...

Today marks the twentieth anniversary of my last alcoholic beverage. It will be a deferred celebration. I live in a nursing home, a hospice facility, more precisely. My husband wished me a "Happy Birthday" and gave me a fancy enameled coin depicting the Roman numeral for twenty, "XX". It's a beauty! Black, navy, red, and shiny gold. My girlfriend and sobriety sister, Arlene, sent me an email Birthday wish. I may have additional Birthday wishes on FaceBook, but I dare not check, lest it interfere with my AAC device**. Tough break, the most popular social media site on the internet, and Tobii cannot be bothered to make them compatible. Argh!!! Add that to Tina's bitch list on technology available to ALS patients. And add that to my personal resentment list. Yes, just because one accumulates 7,300 days in a row of not drinking alcoholic beverages and works the program of Alcoholics Anonymous, one is not immune to resentments. We just know what to do about...

3 19 What's the worst aspect of having ALS? Is it the continual loss of motor skills?  One day you can no longer lift your own finger? Hand? Arm? Or scratch your own nose when it itches? Or wipe it when it runs? Or pet your own cat? Or hold your husband's hand? Or button your own blouse? Or unzip your favorite blue jeans? Or wipe your own behind? Notice the new stilt in your gait? Trip over air to faceplant on the kitchen floor?  The front porch? Graduate to a cane? Rolling walker? Then a manual wheelchair? A fancy motorized wheelchair? Is it the falling away of friends and family who don't understand my disease process? Admittedly, ALS, amyotrophic lateral  sclerosis, is a scary disease, it's a terminal illness, there are no pluses to this disease, you shrink, shrivel, slobber and, ultimately, die anyway. They are right to be afraid but you are not contagious. And you need support and effective advocacy. The few that visit, are put off by the out of sync speech ...

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...

The mind is a wild and wonderful thing. Today a lot more goes on upstairs than people realize. Many people make the mistake that because I live in a nursing home, I must also be feeble-minded. That because I speak like a five-year-old (due to dysphasia), I must also have the intelligence of one. It's frustrating and exhausting explaining and proving myself to those around me. Particularly frustrating is repeating myself three and four and five times to people who regularly care for me. Now I am not prejudiced. On the contrary, one of the greatest benefits to being in this home is my proximity to other cultures. But the people who struggle the most with my speech and care are people who speak English as a second language.It's a challenge to come up with alternate ways to describe things that you need. Speaking of challenges, learning to use my Tobii alternate and augmentative speech (AAC) device is a doozy. I have always had a fairly easy time learning new programs and systems...