IntrinsicTina

I cannot blog when the tobii acts up. Grrrr

It is repulsive to be sprayed in the face with sweat. Yet, some of my best caregivers, do just that. Nitrile gloves cause hands to sweat in a relatively short period of time and when they're removed with an efficient snap, 'they fling sweat droplets all over immobile me. Please turn your back to me before removing your gloves and wipe your hands before handling my hair. Also, the gloves taste awful. When fishing food from my mouth, just know this. SteriMed Plus is a poor quality brand, breaking easily, out-gassing, and awful taste. Don't reorder.

I'm so fortunate! My daughter loves me. What's the big deal? It could very easily have gone the other way. And I dare not forget it. True, I made certain she had good foods, plenty of rest, dressed adorably, and got lots of hugs and kisses. For her birthdays, I learned to decorate cakes and made an amazing Minnie Mouse cake, as well as a Teenage Mutant Ninja Turtles cake when they were all the rage. Halloween, I sewed her costumes, beginning with a bunny costume I modified from a Cabbage Patch Kid's pattern. Next, came a voluminous sweet clown costume from fuschia pink, royal purple, and sky blue satin fabrics. That one was sized so abundantly and was so beloved that she wore it a few years until the witch costume. Yeah, I made that one, too. We checked out stacks of books from the library and cuddled up to read them in our overstuffed recliner. I taught her the fine art of armpit farts, in front of the mirror one hot summer day. We bowled together on a league. I jump...

"If you are trying to kill me, raise the head of the bed all the way and hold my arms forward on the pillow. It allows the torso to collapse down and crush the diaphragm." I said this to my patient care technician this morning, following a choking incident. Ungrateful, huh? She's feeding me and I'm an asshole! In my defense, I've had two days of caregiver mis-steps and I'm at wit's end. I get tired of struggling for my life. I mean, beyond the ALS.  While being turned onto my side, I had to give detailed step-by-step instructions (veritably impossible with severe dysphasia), when the caregivers could not understand that I needed them to move my foot for me. No matter what I said nor did, they insisted on repeatedly asking if I wanted a pillow.   After becoming agitated, the charge nurse came to sort out the problem. Unfortunately, I was unable to respond, while face down, neck wrenched.

Today is my sister's birthday. It may well be her last birthday. We should be throwing her a blow-out party...But we're not. We are unable to. She has cancer, multiple myeloma to be precise. And after three years of fighting, coping with chemo and radiation, embracing baldness, and keeping a positive attitude, she appears to be losing the war. Multiple myeloma is a tough row to hoe; it leaches calcium from the bones, weakening them. We found out about the cancer following a sudden and catastrophic spinal fracture out of the blue. One minute she's bundling groceries into our mother's house...CRACK...groceries drop to the porch. Fast forward to today, she sits in a room at the University of Washington Medical Center, recovering from water in the lungs, discovered during the administration of a new drug. She's been given 3 to 6 months to live. There it is. It's been declared. My baby sister, Renee' was wanted. My mother and stepfather wanted another baby ...

Had I not gotten ALS, I wouldn't have had the opportunity to meet so many new and interesting people, nor had the opportunity to get to know the heart of the people already in my life. People with ALS that impacted me but lost their battle. Where do I begin? Gail Dubose came to our support group meeting in Kent only a few times but I remember her. She relied on her ex-husband before going into assisted living, then she was gone. I never would've known had I not "friended" her on Facebook. Notification of her funeral came in the form of a Facebook event post by her surviving family members. Unfortunately, my husband had a belly full of ALS and wouldn't take me to the service. I got to know people from all over the world thanks to the website www.patientslikeme.com. It was there that I met so many PALS; we support each other to the bitter end, we can't help but become invested in each other, we're on the same plight. But this support comes with a down...

.     23 Had I not gotten ALS, I would not have met and experienced so many interesting people nor experienced the depths of people I already knew. Through the ALS Association Evergreen Chapter, I met an extraordinary couple with expansive hearts who turned their personal ALS journey into a lasting mission benefiting persons with ALS (PALS) in our region. Because of them, I personally benefited: by having a platform in which to connect one-to-one with other PALS, demystifying the disease and its processes; by being able to borrow necessary durable medical equipment as it became necessary with a fast-progressing paralyzing illness; by becoming empowered to do what I can to fight for a cure; by being offered educational resources and opportunities to learn about aspects of the disease I, otherwise wouldn't have been aware of. This amazing couple continue to allow PALS, their families, and caregivers meet right in their living room. Carl's first-hand insight and z...

Okay, I'm understanding my diet menu more within the scope of the care facility. I'm probably more toward Dysphasia Mechanical Soft but the care facility is likely doing me a favor, allowing me the dignity to make informed choices. I get it now and am contrite for my bad behavior. Sometimes I come at a problem from a victim mentality. Note to self: stop that!

23 .1 Raised some Hell today. Do not f**k with my food. I thought I was dealing with enlightened, educated, patient-centered people at this care facility. I am in control of my mental faculties and I've demonstrated that I am willing to modify my diet to keep safe, within the limitations of the declines I'm experiencing, as a result of ALS. I understand that any misstep on my part could result in my death. I accept that and am willing to absolve the facility of any responsibility. Therefore, I believe I should be in control of my preferred diet. I'm on advanced dysphasia as I was coerced to "try" it. Now that I've experienced and found it to be unsafe for my "brand" of dysphasia, I wish to revert back to the regular diet menu. However, the management denied me that basic human right and dignity. The following is my argument as to why their idea of Advanced Dysphasia Menu is actually more unsafe: "Your advanced dysphasia menu is unsafe. Jel...

I love my therapist. Yeah, I know it sounds creepy and cliche, but she really "listens"and seems to get me. That means everything to me right now.

Destined to find nanowrimo on the last day of November every stinkin' year! "What's nanowrimo?", you may be asking yourself. It's an acronym of sorts, which stands for National Novel Writing Month. This is a month long event designed to encourage anyone who ever thought about writing a book to actually write one. This event occurs every November. When did I find out about it this year? November 30th, about 5:00 am. Too damn late to participate...Again.

25 Went to the U Dub yesterday to see the pulmonologist. Been considering a tracheotomy and ventilator to give myself more time on the planet. As you can imagine, the decision to be "trached and vented" is a major one. Will it hurt, is the least of my worries. I was told a few years ago how easy the PEG tube was supposed to be; finding the reality to be excruciating, when the male doctor placed it between my breasts. ALS is painful. Our reality is loss and pain (and medication). Further loss of independence is a big consideration. My reality has me cared for by paid caregivers in a nursing home setting. I'm in a top notch facility but the nurses have not demonstrated proficiency operating the cough assist and suction machines, two machines essential to clearing secretions and preserving my life. And now I have to trust more unknown "professionals" on yet another machine in order to extend my life. . Oh, and my current top notch nursing facility, does not ...

Plastic garbage bags and totes litter my floor but they don't contain trash; they contain stories of my life, in the form of clothes. I have ALS, otherwise known as amyotrophic lateral sclerosis, motor neuron disease, or Lou Gehrig's disease. This degenerative neuro-muscular disease destroys the motor neurons, the communication system between the brain and muscles, which renders one paralyzed and breathing compromised. There is no treatment nor cure thus ALS is 100% fatal. Since I find myself in the latter portion of the disease, a quadriplegic, confined to my bed most days, I have no practical use for much of my hard-earned wardrobe. Finally the stars aligned where I could bear the dreaded chore, and my husband was willing to transport the dozens of 30-gallon spring green totes, full of shirts, pants, robes, career-wear, sportswear, and dresses to my nursing home. (Yeah, I live in one of those! It's where one goes when one doesn't purchase long-term care insurance ...

Occasionally, we are seized with a rebellion so sickening that we simply won't pray. When these things happen we must not think too ill of ourselves. We should simply resume prayer as soon as we can, doing what we know to be good for us. -- TWELVE STEPS AND TWELVE TRADITIONS, page 105  Gee, I could have saved myself years of self-reproach by taking it easy on myself. "Try" as I might, I never could make prayer, in the traditional sense, a daily occurrence for stretches longer than a month. I had good intentions but inevitably, I'd be running late and forget. Or worse, I'd get a big, fat bout of attitude about not getting my wishes (the permanent position at the Gates Foundation, being fired from my last job when my health deteriorated, the cancellation of my Panama Canal cruise, and the various abandonments I experienced following my ALS diagnosis) and off I'd go, cursing my Higher Power, turning my back, isolating, and wishing I were dead (actually, I wa...

I've been critical of how slow communication is on a speech generating device; pair that with a mind-reading, impatient, git-r-done husband, and you have potential for comedy. A few nights ago, my micro-bead-filled neck pillow sprang a leak. My caregivers placed medical tape over the offending seam, in an effort to stem the flow of teeny, tiny, little, electrostatically-charged, styrene beads and set it aside, so I would remember to ask my husband to buy a new one. Tonight, as he was trying to get out of my room at, what he considers, a decent hour, I anunciate "p-i-l-l-o-w" to alert him to an urgent need and begin visually-pecking out instructions on the Tobii: T-a-ke m-y b-l-ue p-i-l-low. I n-eed y-ou to b-u-y a n-ew o-ne b-e-c-ause... " Riiiiiip. Off came the tape and out spewed a thousand little white balls. Oh.

  .1 1 1                                                     ...white as a Mormon. ...the smell of cat piss and dying parent..                                        "I wasn't ready to become an official member of the 'Dead Dads Club'." This gleefully irreverent and vulgar remembrance is just what the doctor SHOULD HAVE ordered. Marshall tells it like it is, no Pollyanna "think positive" white wash of the gritty details of living with parents dying from ALS, aka Lou Gehrig's Disease and Cancer from a spoiled child-turned-caregiver's point of view.

My friend, Peter is meeting with the management of our "home" to discuss ideas on how to make it a better place for ALS patients. What a great idea and a much more positive position to come from than I come from. I'm not exactly certain of the format tomorrow but since I cannot communicate quickly on-the-fly, I better write up a few ideas from my viewpoint. Since ALS robs us of our muscles, but differs in which ones, it's important to be fully educated on the effects of muscle loss by different regions of the body. While nurses learn anatomy and physiology, I don't believe PCT's, CNAs, and such get that education. And, let's face it, book learning is vastly different than hands-on experience. I find the PCT's, by and large, far more adept at attending to the activities of daily living, particularly, if they have experience with people with neurological deficiencies or brain injuries. They should get intensive instruction on ALS. It's remarkable...

Tonight we had a very special evening event at Bailey Boushay House. Viva Italia--a night of opera and delicious Italian fare. It was like a night out on the town without the logistical problems associated with transporting people with disabilities. The third floor dining room was transformed into an exclusive Italian ristorante´ resplendent in cabernet-colored linen, candlelight, plants, and sculpture. Flutes of sparkling cider caught the firelight playing on the computer monitor. It began with several opera numbers (I'm an opera idiot and couldn't begin to offer further descriptors) and proceeded with a gorgeous Caesar salad in a baked, filigree cheese bowl. A few more operatic tunes followed by a delicious tomato basil bisque that I'd swear contained real basil, rosemary, and parmesan reggiano. More gregarious opera and then a plateful of rustic Italian favorites, manicotti, pasta Alfredo, and chicken Parmesan, asparagus, and red pepper. Mangia, mangia, mangia! Still...

I looked up Huntington's Disease. Wow! If I thought I had it bad!!?!! Huntington's is like ALS, Alzheimer's, and Schizophrenia altogether. I cannot imagine, and I don't have to. I see it everyday. (or, I think I do.) My neighbor here at "the home" seems to have it. I say "seems" because nobody will share her diagnosis with me, rightly so, due to HIPPA laws. But, you cannot hide symptoms. Tiny, bird-like in appearance, translucent pale skin, luminous dark eyes and tresses, and torturous, stick-like limbs.  She evokes the protective mama bear in caregivers and patients alike. I tried making friends when I arrived to no avail. She'd look down, ignoring me and hyperfocusing on her activity, usually being fed. I was dismayed see her spend days in a darkened room despite a prime sunny location. Not unlike me, irregular sleep\wake cycling; must have others perform all activities of daily living; very limited ability to communicate. She swings from...

I'm in a really good care facility, I really, really am.  Therefore, I am loathe to complain as much as I do. It would be incorrect to assume that Bailey Boushay House is an awful facility based on my complaints thus far. On the contrary, it's a fabulous place with mostly high quality caregivers. (I'm in a position to know.) I'm upset about a recurring problem I'm having with a male charge nurse. The first time I became aware of him was following my arrival, February 2015. I was struggling with caregivers, unfamiliar with my care, who placed me in a situation compromising my breathing. As a paralyzed person, with severely impaired speech, I was fighting a losing battle for my life. I was, however, able to make some noise through adrenaline-fueled panic yelling. He turned away in the hallway, muttering "Oh great, another noisy one." or a close approximate. I've had numerous negative encounters with him since. When responding to my calls, he used min...

It pains me to send caregivers packing. Before ALS, I was much more polite--not that they would believe it. Some days I awaken intolerent, protective, without energy stores. Today was such a day. I was awakened from a dead sleep, in the midst of a vivid dream, by a man in my face, asking if I was having breakfast. I wasn't ready to answer the question since I was still groggily trying to extricate myself from dream state to reality. I'd been carrying an armload of clothes from a motel room, my husband and I were staying in, to a disembodied voice, "Tina, are you eating breakfast?". I responded, "Let me wake up." To which he responded, "Your hair? Your head? Do you want your head up? Are you having breakfast? Do you wanna eat?" all in rapid succession. My ire raises as I'm peppered with questions by this little man leaning into my face, hands on knees, like he's talking to a kindergartner. Why, oh why don't they follow the care ins...

My heart yearns for human touch. I spend my days within the confines of my hospice room, needlessly. I have a state-of-the-art head-operated wheelchair. I sold my beloved Harley Davidson Softail Deluxe to buy a wheelchair van. Caregivers, doctors, and nurses but, rarely, people who love me, bother to be with me. Nitrile-encased hands clothe, feed, and change me. Where are the people to hold my hand, touch my face, or hug me? Without the gloves? Even my husband, during his visits, seemingly has forgotten the value of touch and must be prompted to hold my hand, hug me, or kiss me.

I'm so alone. My husband keeps showing me so. Today, he came to the Seattle MOHAI and never gave me the opportunity to join him. This, in itself, wouldn't be so bad, but consider this: He drove 20+ miles to go to this museum; he knew I wanted to go to that particular museum, since we missed opening hours last spring. It's located close to the hospice house I'm stowed at. We own a wheelchair van. He doesn't include me in any family events, despite close proximity, the ability to transport, and my desire to attend. He assured me that he would keep me involved in life, promising to position my hospital bed to the living room (in our home). He's off work for over ten weeks and yet, I don't ever see him before 4 pm. He wanted me to agree how well he's done, visiting me. And, yet, I rarely see the light of day, the seasons change, or breathe fresh air . This is not love. Ours, is the relationship people are grateful, they don't have. Why be angry ...

Starbuck's mugs and cards, that WAS my hot button collection. I once coordinated my coffee travel mug to my outfit-of-the-day. My chocolatey-rich brown Calvin Klein business suit paired well with my tall brown insulated mug with golden swirl embellishments. My pink silk jacket from Rottles, one of my more luxurious purchases, went perfectly with the red with the gorgeous pink rose emblazoned thereon. The stainless steel with the navy power suit, etc.   So successful, so affirmed, so necessary. I was contributing to society, paying taxes, living responsibly within my means. My collection got donated to Good Will as I worked at clearing clutter for my husband's sake. I think my yarn stash qualifies as a collection.  I spent free time knitting and collecting balls, skeins, and hanks of delicious fibers like: self-striping sock yarn, woolen tweed from Ireland, silky, shiny ribbon yarn, oh-so-soft and decadent angora, sturdy wool from Germany, innovatively-dyed Japanese fibers,...

Orange, gold, rust, burnt sienna, ochre, raw umber; the riot of fall colors, in the trees and at our booted feet; a drive in the countryside; the taste of hot apple cider on my lips; the satisfaction of a truckload of firewood we gathered and cut ourselves; elk herds on the move; hearty stews, savory soup, crusty whole-grain bread, pumpkin and gingerbread spice lattes; these are the memories I tap into the most this time of year. Cabela's fliers in the mailbox; Carhart's camo-clad hunters swarm outlying areas; mushroom garthering; huckleberry picking; logger burgers; forest service roads; cheese sandwiches on the woodstove; warm quilts, cool sheets, and flannel nightgowns; cold butt, warm heart.  Immensely grateful to have the well of memories to draw upon.

I read other people's blogs and get critical of my own. I'm not positive enough, not eloquent enough, not organized enough; I'm far too arbitrary of topic. I'm unable to add pictures and links due to system limitations and that frustrates me. Next thing you know, I'm not blogging. I have to step back and remember why I blog. I blog for myself. I blog to remember. I blog to communicate. I blog to work things out in my head. I exorcize demons. I pour out my heart. I blog to say what my lips cannot. My blog is my voice. .

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...

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.

I struggle. In many ways, I struggle. I struggle to be heard--to be understood as the muscles atrophy in my mouth, tongue, and throat, such is the reality of dysphagia. I struggle to move food from one side to the other within the confines of my mouth. I struggle to chew, to swallow, to nourish my body in a natural manner. I struggle to keep positive in the face of the losing battle that is ALS at this point in time. I struggle to graciously accept the fact that the majority of my friends and family don't understand this disease and keep their distance from me. I struggle to be kind to caregivers who don't know how to care for me -nor follow my care plan. I struggle to stay awake during the day. I struggle to be patient when I get yet another person unfamiliar with my eating/feeding routine. I struggle to pray and meditate each day. I struggle to dream up topics for my blog. I struggle to keep out of regret, remorse, and resentments. I struggle with decisions I've mad...

So fortunate today, Ethiopian food with a BFF and my husband to feed me.   I was first introduced to Ethiopian food twenty years ago by my friend, Rita, and her husband (at the time), Darryl. My experience with Ethiopia, or it's people, was zero--unless you count images of emaciated, starving people, including listless babies with swollen bellies, on news programs when I was young. "What could they possibly eat besides the rice that humanitarian groups donated?!", I thought. How ignorant I was! They withheld the details, saying only that we would be eating with our hands. "What the...?" Walking through the door, I couldn't even begin to relate the scent that wafted out the door. It was utterly foreign to me--not unpleasant, just not an aroma I associated with food. And, it was smokey, not cigarette smokey, something coffee-ish and dusky spicy in fragrance. Soccer was on the television and a few men, evidently family members, drank coffee at the tiny ba...

Today is my birthday--another milestone met--another year of birth anniversary. I didn't expect much of a celebration this year and that was fine by me. I tire easily and can't bear up under the social expectations of others. Smiles and efforts to speak, with or without my speech generating device, taxes my energy--quickly. After a lifetime of acquiring stuff, I need nothing anymore; you cannot take it with you and I live in hospice where I live my life in a room. I'm pretty happy to have a delicious morsel that I can manage to eat despite my mouth, tongue, and throat weaknesses. Tonight was delectable and tender Lamb Curry, individual-size banana splits, chocolate mousse, and cupcakes. My mother and sister, Renee, surprised me with a visit complete with gorgeous fall flowers, gourmet cupcakes, a gift of audiobooks (my favorite kind) and their time, despite health challenges. My husband showed up while they were here, helping to carry the conversation, thus I did not ov...

I keep discovering that my best caregivers have left. Just about the time I am comfortable with people -- I discover they are leaving, or worse, they've moved on without saying good-bye. Please note: I detest being denied closure!  I understand that people have a right to move on or move up -- it's hardly a stretch to imagine a gifted, intuitive patient care technician (PCT) may want to strive for more, going back to school to become a nurse or a nurse that wants a more lucrative or challenging position. I do not begrudge them, I applaud their ambition. Not that long ago, I shared that ambition -- after all, I earned my college degree in accounting in 2005 facilitating a career change from administrative assisting. However, a part of me, selfishly wishes they'd confide in me, share their plans for the future, be sure to say good-bye when they leave. My emotions do not differentiate between family, friends, caregivers these days. I get emotionally attached to those who a...

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...

Since I've been sick with ALS, I've been blessed with angels here and there. One friend that really stuck with me is my girlfriend, Judy. We were friends before and continue to be friends. She has been my faithful friend, water aerobics buddy, (even dressing and showering me), and caregiver in the early days. I sold her my beloved Harley Davidson Softail Deluxe and was pleased that my best friend would be riding it and loving it as much as I did.  My sponsor is another faithful friend. As a result of the ALS, I've had some behavioral issues, (either frontotemporal disease or PseudoBulbar Affect), and she has never hated on me and has always gone out of her way to support me. She even wrote out another fourth step for me when I lost the ability to write and before I could operate my Tobii. Of course,  I had to voice my own people, institutions, resentments, fears, parts, defects, etc. One could say that she has shown me unconditional love and acceptance over nine years. ...

You came home, a bundle swaddled in blue, an instant pride-and-joy. Born into a family of three sisters, a novelty, the best toy ever, a living doll. You had to endure endless kisses, your feet never touching the ground, and ridiculous nicknames. You grew. You taught us that spaghetti is acceptable as a full body rub, beware of ice cream cones in an accelerating car, and McDonald's cheeseburgers are a sedative. As an adorable towhead, you were all boy in spite of being Mama's boy. Puppy dogs, worms, and bugs held magnetic appeal, and all the better to chase girl siblings. And grew. Peanut butter and mayonnaise makes a great sandwich filling, Pacman cupcakes are popular among cub scouts, and baloney sticks to the ceiling up until Mom walks through the door. Little brothers are attractive nuisances, cute as can be until one brings a boyfriend home. And grew. Farts are effective weapons, particularly in sneak attacks, and up close. If you tell Mom that she smells like ...

Nineteen years sober today. My husband bought me a beautiful coin commemorating my time free from alcohol and drugs, one of our family traditions. Some of my fellows will be bringing me a meeting and a cake at the end of the month to celebrate. So grateful for that.

Picture perfect weather on the banks of Lake Washington, the #2015WalktoDefeatALS was a wonderful event for walkers, drivers, riders, and volunteers. What wasn't to love?! Family, friends, young, old, smiles, hugs, kisses, dogs-on-the-leash. The happy hub-bub of greeting, check-in, t-shirt pick-up, assemblage, live music, a rousing speech by one of our own, team photos, selfies, and departure group by bouyant group. We raise awareness, money, and our spirits. Today we are one in our cause. Today we are not alone in our disease. Today we have hope. Today we matter. I'm so appreciative of my family, my friends, and the surprises I received when my mother showed up as well as my former coworker. Even my sister who's been fighting multiple myeloma showed up in a wheelchair to support me. My mother also showed up in a wheelchair. This is a BIG deal! My daughter traveled from SoCal to walk in this event. My husband's family showed up to walk again this year, his brother and...

In keeping with the solemnity of the day, 9/11, I'm going to chronicle my progression with ALS, my personal 9/11. September 11, 2012, three years ago today, I was diagnosed with ALS. I'm not special or remarkable in any way, I am average.  I'm not a celebrity, sports hero, astrophysicist, best-selling author, doctor, lawyer, nor anybody of note. I am a wife, a mother, an aunt, a niece, a sister, a daughter, grand-dog grandma, and a friend. I was an employee, an accountant, a late-in-life college graduate, an adventurer, a Harley rider, a photographer, a knitter, a crafter, a writer, a hack, a house-painter, a gardener, amateur birder, a hiker, a cook, a traveler, a lawnmower, a pet parent, a dancer, a foodie, a Starbuck's enthusiast, and a gadget geek.  My ALS diagnosis was a complete and utter shock. Though I struggled to not allow ALS to change my life, ultimately, it changed everything. At this point in time, ALS always wins though we fight the valiant fight. Alt...