IntrinsicTina

Mishandled, misunderstood, & marginalized. I cannot begin to count how many times I was hurt while under the care of Life Care Center of Federal Way. It was many times per day and we're not talking during physical and occupational therapy, where its part and parcel to what they do. Ignorance of the disease, ignorance of body mechanics, and a general attitude of lethargy with regard to learning about ALS, is what I noted. It was far easier to say a curt "sorry" and proceed as before. Efforts to educate caregivers was mostly like banging my head against the wall. The few who paid attention, deigned to do a little self-education, left this facility quickly with the exception of two nurses and two caregivers. Even the Director of Nursing, who allowed the ALS Association to provide education on what ALS is, didn't bother to attend. Neither did my main night nurse. The lack of training hurt me every time I had to have my Attends change, underwent a clothing change,

Knees crushing into linoleum-topped concrete, useless muscles over-stretching, tendons straining, arms bent backwards, supporting 200-lbs of pain-filled body. Pants-wrapped ankles, bare ass vulnerable, soundless scream, mute agony, two caregivers in frozen consternation, ineffectual and unqualified, a novice nurse holding patient's arms, torture-like. Picture our prisoners-of-war, in the hands of the enemy, kneeling with bamboo rods jammed-in the crooks of their elbows as they're leaned forward, in absolute submission. Circa 1960's. Pain, surpassing childbirth, in that there was no pause for contraction build-up. Surrounded, hands lift and drop, repositioning hands lift and deposit their red-faced, tear-stained lump, half-on half-off the bed. Further insult of pain as muscles fail to support the lower body. The preceding attempts to describe one incident of many, the real life experience of a woman with ALS, in a highly-rated skilled nursing facility, in the United Sta

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

I may have a terminal illness but I have found joy in good friends visiting, cards, letters, balloons, flowers, email messages, facebook posts, caregiver's loving ministrations, tub baths, tender moments, ballads, ice cream, good food, junk food, a kind word, smiles, intuition, movement, Family, small efforts, gentle touches, good books, fellow sufferers, fundraising, advocacy, babies, old people, animals, meditation, movies, sitcoms, music, beauty, the past, dreams, colors, glitter, poetry, diversity, people, peace. Let's face it, this list Could continue on ad infinitum. What do you find joy in?

The only thing that matters is that he is an alcoholic who has found a key to sobriety. These legacies of suffering and of recovery are easily passed among alcoholics, one to another. This is our gift from God, and its bestowal upon others like us is the one aim that today animates A.A.'s all around the globe. --TWELVE STEPS AND TWELVE TRADITIONS, p. 151 When I read this paragraph, it paints a broadstroke picture of our AA way of life. Simply speaking, one alcoholic to another alcoholic shares their experience, strength, and hope, as he knows it to keep sober himself. I'm not much of  a sponsor and yet, I've managed to stay sober. I've always nurtured a fire within my heart for sobriety and Alcoholics Anonymous . Even times  when I was absent  from meetings (which I do not .recommend), I remained committed  to sobriety, prayed rightly, shared my experience, strength, and hope with other alcoholics, and read our literature.  Admittedly, this practice is dicey  a

Acute muscle spasms wrack different parts of my body; I yawn and my throat goes into spasm, threatening to lockdown my voice box. When I tilt my head up to get my teeth brushed, my neck muscles clench shooting pain to the base of my skull. A tiny muscle has "given up the ghost" on the left side of my mouth, while the right side lifts baring my front teeth. My nose twitches but not in the cute Bewitched way. Whenever I am moved down in bed, my chest spasms and I, spasmodically gasp and gulp for air. Speaking of my chest, there are two muscles that jiggle my breasts; now, those spasms are comedic. They seem to say, "Hey, lookie here!". A lot of good that would do! Muscles in my arms, legs, and torso wiggle and jiggle countless times throughout the day. It's gotten so that I barely notice them, save for the largest ones that seem like I can measure on a seismograph. Reclining brings on a spontaneous stretch that, literally, curls my toes. Unfortunately, many qu

I'm disappointed! Last night, or should I say this morning, I composed an email complaint regarding two new hires. Both of them have me worried for my safety. One, a nurse, tried moving me on her own and ended up leaving me flat on my back, with a pillow on top of me, no call button, and she closed the door. All of which is a recipe for death for an ALS patient with my issues at this stage of the game. Luckily, I did not die and was found by a pair of PCT's, breathless, angry, and shaken. The other is a PCT with attitude issues and no desire to learn the idiosyncrasies of caring for an ALS patient. I've been "helped" by her three times now and I read her loud and clear. She is not cut out for the moving target of ALS symptoms. She's already gotten angry with me and beat feet out of my room when she should've been doing her job, learning how to care for an ALS patient. I don't need a caregiver who takes training, personally and is quick to anger and

I had a sketchy dream, most of them are. I had hiked up a gorgeously green hillside with companions, when we came upon a wide, tan vehicle. It was intriguing and different so we gathered around it. Sauntering up behind us, the owner started getting the vehicle ready For flight! Mistaking the vehicle for a road-borne craft, we were shocked. And irresistibly drawn to it. I, uncharacteristically, asked for a ride and landed a gracious invite. He was on his way to Boeing to make a document delivery and decided to let us tag along. The helicopter-esque craft had no blades but manuevered much in the same way. We lifted up, seemingly, without effort, encircling the area, admiring the waterways, greenways, and acres of white, light industrial and office buildings (looking a lot like Microsoft). Cars and roadways weren't in evidence on this tour. I commented to the pilot, my surprise at the lack of windows in the footwells, unlike my helicopter tour of the Hoover Dam. This lack did not im

I seem to dream of everything that has ever happened in my life. In these dreams, I am whole, I have ALS but I have yet to display the symptoms. I am walking, talking, using my hands and fingers normally. I am not extraordinary, just as I was in my real life, performing routine activities on an above average level. A sought after employee that held herself in low esteem--always striving for perfection. Last night I went back to work at Wendy's Old-fashioned Hamburgers in Kent, Washington, the site of my first job. Lord only knows why. I was positioned in the front end as order coordinator but given no instruction; it was assumed I knew what I was doing as a former employee, regardless of the elapsed thirty-five years between then and now. The first order came in as I stood between the cashier and grill operator; I strained to recall the activities of my role. Do I lay down the bun and layer on the condiments for the grillman? Wrapper or no? Dip the chili? Ready the drinks? I

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&#

I need to watch what I listen to when I fall asleep at night. Sounds like a no brainer to you, huh?  I was so grateful to awaken from my Hell-ish dream of disembodied body parts. Thankfully, I don't recall the entire dream, although worrying about the smell of decomposing flesh was an experience I never thought I'd have to face. Yeesh! (gag) I'm such a fan of murder mysteries and the paranormal genre with vampires, werewolves, fairies, shapeshifters, etc. and I never have issues when I nod off to my various audiobook selections.  Clearly Forensics and the Green River Killer are subjects best left to the light of day.

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

"You don't know what it's like!" My husband and I laughingly bat that sentiment back and forth since before we were married. It began when my husband overlifted at work, herniating his lower spine. When his disc herniated, it blew into the spinal capsule to impinge upon the sciatic nerve. It knocked my normally stoic, German-descendant to his knees! Over and over, my husband would grit his teeth, attempt a grin, and recite, "You just don't know what it's like!" and "Nobody's ever hurt this bad!". If you've never experienced sciatica, "you're very blessed, indeed". It's a deep painful, sharp, numbness that can affect butt cheek(s) and/or leg(s). In the case of my husband, the top of his foot and toes permanently lost sensation due to nerve damage. He, eventually, had surgery alleviating the pain, so effectively, that post-op he declared that he no longer needed the heavy pain medications he was using to cope wit

My image will live on in a promotional video (DVD) for the Seattle Cossacks. In 1995, I was very active in the motorcycle community, particularly the Harley Davidson motorcycle community. It was just before I bought my first Harley Davidson Sportster. My boyfriend was a mild-mannered, tech-saavy, patch-holder in an outlaw motorcycle group. Whenever my boyfriend was too busy, I got shifted to his long-time friends, a successful, motorcycle-riding, married couple. I enjoyed this lively couple, logging many miles together when I finally took the plunge and bought my own ride. I was their third wheel for quite awhile and wouldn't you know, Rita, the wife, and I are captured for posterity flanking our Cossack friend, long-time bottom man, Dave Eady. We were attending the Sun and Surf Motorcycle Rally in Ocean Shores, Washington, viewing the ever popular Seattle Cossack's stunt riding performance. Afterward, we behaved like groupies, chatting up several team members, but Dave was

"...Snot running down his nose..." excerpt from Agua Lung by Jethro Tull I'm so flamin' angry! How can a caregiver not notice snot running down my nose and into my mouth?! If they are close enough to ask if there's anything they can do for me, why wouldn't they notice the slug trail down my face? If you think this is a disgusting subject, just imagine living the reality. Add insult to injury, I enunciate my very best "tissue". And still no light bulb moment. Seriously!? Unfortunately, this is not a one-time event.