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 ...

What did you get for Christmas? Or what did you give? Unfortunately, I  did not give anything, not that I did not try. Just another unfortunate example of what I cannot do for myself, even though I have an augmentative and alternative communication device. After a Christmas morning of quiet, personal lamenting and escaping reality through sleep, my family showed up with gifts and laughter.  Precisely what I needed to lift my flagging spirits. My sister, my surviving sister, the one who, allegedly, doesn't cook, cooked a whole Christmas dinner. My family invited my husband for the Christmas dinner and he brought my mom and dad out to their place in Puyallup. Part of me was jealous that I wasn't even given the opportunity to participate, but a bigger part of me was grateful. I was grateful for the knowledge that my family has fully enfolded my husband into the family, and he won't be alone after I'm gone. I also benefited from her Christmas dinner preparation, the...

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 continue getting sass from one particular caregiver. He says, "You need to communicate with us." he continues to completely miss or dismiss the concept of I would if I could . It is part and parcel to having ALS, I am losing my ability to communicate and it is his job to assist me. Part of helping me, like it or not, is to learn my routine and anticipate needs, when possible. He misses the fact that I'm failing more every day and night time is when I'm weakest. It is extremely insensitive and arrogant to expect me to cater to his needs and expectations. Pushing me to repeat words or expound on a simple one word suggestion is physically taxing on my system, adding stress which further depletes me. Cuing is supposed to be caregiver's domain, not the patient's. Here is the situation, I am being changed. In the midst of the action, as seems to be his practice, he is sidelined asking me trivial, meaningless, but energy-sapping questions. Do I want my legs raise...

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...

1 23 I was determined to write a blogpost of praise for a change. Then, before I could open my browser and get Blogger loaded, my airway constricted and I battled to keep my shit together long enough to communicate, with my eye gaze-enabled AAC device, that whatever they sprayed down the hallway, was affecting my breathing adversely. (Shitcan the praise.) I'm constantly baffled by the level of ignorance of my condition, by professional caregivers. People who are paid to take care of me, because my husband, who loves me, lacks the expertise. And, by the way, I have better-than-average caregivers coming through here.  Regardless, I struggle daily because they have failed to latch onto the concept of the respiratory piece of ALS. They leave me flat on my back for too long of periods. They ask if I'm ready to go up from a flat-on-my-back down position. (They may as well be asking if I'm ready to breathe.) The answer is  "hell yes!" and "Duh!" Let's...

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 ...

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...

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.

Care Conference seems like a big waste of time and energy. Not enough follow thru. Email and signs don't teach newcomers nor old timers. Still no emphasis on time consciousness. Whenever I'm changed they ought to hold their breath, or breathe thru a straw with a clothespin on their nose, then perhaps they'll rush to raise my head and get pillows under my arms so I can get a good breath. Regarding the room issues, the overhead light closest to the windows has already been replaced. Never fixed. Always flashes intermittently, which interferes with Tobii operation. Nobody gives whole story. Tell Tate the history. I'm always asleep when he arrives. Same story with the DVD Player, never Finishes downloading the movies on Netflix since I got the new one.(Tate has already addressed all of these this very morning). Thank you Tate. I'm the weak link. Everyone assumes I can fend for myself but I cannot rely on the tobii working.  Dayshift doesn't place tobii in front ...

68 I use a Tobii I-series I-15 Alternative and Augmentative Communication (AAC) device to communicate 1-on-1 with people or in my blog. I've been using my tobii since 2013, three years and three months, to be exact. My AAC device can be used by touch or eyegaze, but I've always used the eyegaze feature since my hands went kaput back in 2012. Tobii is my main tool for communication since most people cannot understand my speech impediment.  Or more accurately, my unintelligible speech.  Specifically,  I use it to place phone calls to either my husband or for emergency use. I also use tobii to email, instant message on Facebook, social media, like Facebook, Twitter, PatientsLikeMe and Good Reads. I maintain a personal blog on Blogger which I devote a great deal of time to.  (Of course, you already know this if you're reading this post online.) Naturally, I must use tobii to communicate in real time for one-to-one conversations or for communicating in a group situation...

Three years and five months ago, I was diagnosed with ALS. I feel heavier each day. Gravity, the weight of it bearing down upon my chest, my arms, my legs; the weight of gravity pressing my buttocks hard into the mattress. Caregivers have trouble grasping the reality of weight pressing down on me when nothing "heavy" is on me. Muscle spasms are an ongoing problem, increasing in intensity, inexorably marching me toward total immobility. I am a quadriplegic but I take heart in the small movement that remains, my thighs retain the ability to open my legs into a cobbler's pose, sometimes I can bend my knees sideways but not upwards, defying gravity. Likewise, I can move my upper arms toward my torso and, at times, away but not enough to lift my arms nor defy gravity. Calf and forearm muscles are wasted away, appallingly flabby, skin absent of mass. Muscle spasms also occur on the inside and the muscles around my organs quiver and clench. The most vulnerable muscle is the ...

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...