IntrinsicTina

A goldfish snatched from it's bowl, writhing and wriggling, silently gasping...

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...

. Literally!  When the plumbing stops up, life is not so jolly...So you should opt-out now if graphic defecation or the unvarnished realities of ALS offends....Cause it's about to get real.

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...

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...

Fun Fact: This is the first time, in two weeks, I've been able to feel the backside of my front teeth, due to mucus encasement. It is also the first time, in two weeks, I haven't felt like I was sucking on a snot popsicle. I'm unsure why I had an increase in mucus secretions, but it was pouring out. It was all I could do to keep up. My poor caregivers were put to work scrubbing dried-on mucus from the back and front of my teeth. The effectiveness of brushing my teeth was questionable. Thus, when they freed from their prison, we got right on teeth brushing. Oh, it's the simple things! I wonder, dear reader, if you are repulsed by the more glamorous realities of ALS?

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...

Contrary to popular belief, I do not save up my gas to sadistically torture my caregivers. I smile when I break wind because I always have. Like any eight-year-old boy, and some little girls, I find bodily functions hilarious. My family was so poor, that our main source of entertainment was each other. When you eat commodities, you get powdered eggs, powdered milk, and a humongous chunk of fart-producing, fake cheese. A quiet night in front of the tube, was, invariably, interrupted by an SBD, or a ripper. What is an SBD? An insidious noxious cloud that explodes inside the nostrils, inspiring either retreat or battle stations. Within our family, it was battle or die. You may be thinking that this was a mere pastime among siblings; you would be wrong to exclude the parental units. Dad was a sneak attacker, waiting until us kids were mesmermized by a television show... Rrrrrrrip! We'd get an aromatic flutterblast right at eye level. Mom wasn't quite so disgusting but neither...

I continue hemorrhaging people. Stephanie, my Stephanie, has given notice of her intention to end her employment. Thankfully, she gave me notice as well. Tears were shed. I totally get that she must do the right thing for her life. Her Baby Girl deserves to have her mama at home on holidays. I will miss the love and her art on the graduated pitchers. I'm not gonna lie, it's hard to lose good people. People who are there, the ones that actually care. The ones who hug and kiss me (with permission) when I cry. The ones I laugh uproariously with; the ones who tell me off-color jokes and don't mind their language. Seems like only yesterday that I lost Meredith to Magic Mike, marriage, and the midwest, nevermore to hear her sound effects while rolling me over in bed. Lisa also went home to the midwest. Don't they understand snow and tornados?! At least my sweet Sophie moved to California. I see much traffic and smog in her future. Man, she's gonna be a great nurse. ...

I think ALS is what one gets when one prays for patience. I don't actually recall praying for patience, but I thought about praying for patience. That must have counted. I number among that neurotic bunch of people who believe we have a daily reprieve on our alcoholism, based upon our spiritual condition. Indeed, I've logged over twenty years sober and clean. I like to say that I learned how to pray in my 12-step program, but that is not completely accurate. I learned how to pray as a child in that rout manner:  God is great. God is good. Let us thank Him for our food. Amen. I also learned to say nighttime prayers: God bless mommy and daddy, and Grandma and Grandpa... My foray into Born Again Christianity, in my teens, left me feeling like a fraud upon my return home to a more hedonistic household.  Therefore, I credit my 12-step program with teaching me the nuts and bolts of praying right. Thanking God for all the blessings in my life. Not giving Him my laundry list o...

Flop goes my head, muscles have given up the ghost in the left side of my neck. Another day in the life of the ALS patient. I'm not sniveling so much as documenting for posterity. Losing my neck muscles is problematic in the sense that it's difficult for caregivers to place my head properly.  Additionally, caregivers operate on old information; they don't really get the progressive nature of my disease. Consequently, my head doesn't get properly supported. I'm struggling with my toes curling as my tendons contract, my muscles have died. It was so much better when my husband curled my toes! I may have to resort to wearing glamorous moon boots lined in genuine simulated sheepskin.  I spend 99% of my time lying or laying in bed. As a result, the skin at my heels is getting sensitive to pressure and my left knee and thigh are in near constant spasm. Both conditions are painful. It's winter in the Pacific Northwest of the United States, with winter comes dry ...

Things that make me giggle... Caregivers who enter my room exclaiming "It smells great in here! " when I've just filled my pants.

I always brightened when I saw you walking into my room. I had faith in your abilities as a nurse. But your smile and midwest, down home, make no apologies wit was a balm to my soul. You are my cat soul sister. I'll never forget your "crack kitty" drawings on my daily graduated pitcher. And the outlandish tales you spun. You brought me a little piece of home with your cat stories of "Diaper",  I felt like I knew him. Thank you for sharing your engagement with me. I could picture you climbing that ladder to find the suitcase, your expectation of finding WWF wrestling tickets was hysterical! I loved it and I love you! I'm grateful for the time I had with you. I hope the midwest treats you well. Have a great wedding and a better marriage! I wish I had met you when I was healthy. Cheers!

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...

ALS blesses me with myriad muscle spasms; some playfully jiggle a given body part, others painfully seize and wrench. In the early days, I was the recipient of more than one spontaneous orgasm, when my clitoris was jiggled. Regrettably, those freebies were shortlived and few in number. They were, by far, the most pleasurable and the most memorable. Most often, my fasciculations, the technical medical terminology for these muscle spasms, range from unnoticeable to annoying to painful. Luckily, for me, the painful ones are short in duration, but they can be quite acute. For example, charlie horses, or muscle cramps in the legs, are intense and used to awaken me screaming.Now they are de rigueur. Since I, literally, cannot move a muscle voluntarily, I can only breathe through the pain. Another troublesome spasm hits me deep inside my left ear, it's what I imagine, a red, hot poker feels like being plunged into your ear. Yes, I actually get the sensation of extreme heat to enhance ...

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 a difference good caregiving makes! I'm not energy-drained, over-taxed, nor overwrought. I'm not injured, not under-medicated, I haven't been talked down to. Good caregiving makes me glad to be alive. I want to be alive. I should not have to fight my caregivers.

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...