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 ...

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...