IntrinsicTina

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...

Tina's Twelve Days of Christmas (full version) ♫ On the first day of Christmas, my true love gave to me...a glass pickle to hang in the tree. ♩  On the second day of Christmas, my true love gave to me...Two red poinsettias, and a glass pickle to hang in the tree. ♩  On the third day of Christmas, my true love gave to me...Three chocolate Santas, two red poinsettias, and a glass pickle to hang in the tree. ♩  On the fourth day of Christmas, my true love gave to me...Four rein-dogs poopin', three chocolate Santas, two red poinsettias, and a glass pickle to hang in the tree. ♩  On the fifth day of Christmas, my true love gave to me...Five red heart ornaments, four rein-dogs poopin', three chocolate Santas, two red poinsettias, and a glass pickle to hang in the tree. ♩  On the sixth day of Christmas, my true love gave to me...Six bags of kisses, five red heart ornaments, four rein-dogs poopin', three chocolate Santas, two red poinsettias, and a glass pic...

Getting right to it, Tina's Twelve Days of Christmas nears it's crescendo:  ♫ On the eleventh day of Christmas, my true love gave to me... eleven Trophy Cupcakes, ten Snowman bright lights, nine Fran's dark chocolates, eight Christmas crackers, seven cotton candies, six bags of kisses, five red heart ornaments..........four rein-dogs poopin', three chocolate Santas, two red poinsettias, and a glass pickle to hang in the tree. ♫ I have to share with you, the effort my husband is making. He brought me a few different choices for the eleventh day of Christmas: Eleven candy canes, eleven Lindor truffles, and eleven Trophy Cupcakes. Of course, I cannot possibly eat all of the nummy goodies, so my caregivers are, deservedly, getting tasty holiday treats.

24 24 24 My favorite Christmas took place in West Yellowstone, Montana. My husband and I took my daughter to snowmobile Yellowstone National Park. Sixteen, curly, honey-blonde, lightly-blemished, a new driver, full of the cockiness of youth, exuding the air of boredom that only a teenager exhibits when confronted with unfamiliar circumstances. We procured a room upon arrival, the Best Western, abandoning our habit of driving into the night, and sleeping in the car, in a bear-threatened campground. We walked the tiny town, amid parka, polar fleece, wool, and boot-wearing tourists, browsing souvenir shops and dodging sports utility vehicles towing personal snow machines, mobbing the ranger station for tour permits. Snowmobile Rentals, flurry of trying on snowsuits, gloves, and boots, Should we buy balaclavas? Let's get this party started! We depart with a guide, my husband on one machine, myself and my daughter on another, six other snow machines in our caravan, You are entering ...

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...

♫ Ten, ten, ten, ten, let's sing a song of ten. How many is ten? ♫ Like, literally, millions of kids, I grew up watching  Sesame Street and The Electric Company. I watched those programs well into my teens since I was the eldest of four kids. Longer if you factor in seven year gap between the middle children. Of course, I introduced my daughter to my old pals. Is it any wonder that I naturally think of ditties when I hear numerals from one through ten!? Anyway, this is the next verse of Tina's Twelve Days of Christmas...  ♫♫On the tenth day of Christmas, my true love gave to me...Ten Snowman bright lights, nine Fran's dark chocolates, eight Christmas crackers, seven cotton candies, six bags of kisses, five red heart ornaments, four rein-dogs poopin', three chocolate Santas, two red poinsettias, and a glass pickle to hang in the tree. ♫♫  We are getting ever nearer to the end of the song. Wonder what that husband of mine, has planned for the finale? 

23 The ninth day of Christmas, and I'm peaved. I was so excited to see a Fran's Chocolates bag, and so disappointed to find out that five out of nine were dark. I don't like dark chocolate! I know, I know, I'm terribly ungrateful, and I'm not proud of myself. On the contrary, I'm ashamed of my attitude. I fully understand that I am not owed anything. I know full well the consequences of ingratitude. I am lucky that my husband visits me as much as he does, much less brings me gifts, tacky or not. And still, I was powerless to stop my train wreck to crazy town. Nevermind, that I am worn out by well-meaning caregivers. Some days one after the other, for everything I must do in a day. By the time he shows up, I'm done with patience, tolerance, and kindness. If I ever ever even woke up with any... Oh, admit it, nobody always awakens joyful and happy. I woke up happy then I had a bad hair moment. Here is the most recent installment of Tina's Twelve Day o...

Got a chance to let my party goblin peek out a little at Bailey Boushay House, in Seattle, Washington. God, I love these parties!!! They are a real boost to my spirit. Day in and day out, I am in my room, pleasant as it is, I get starved for new understanding peeps to interact with. Additionally, I need new foods to pass over my bored palate. (Sorry, Daniel, as good as your food is, I am not accustomed to the limits set by institutional standards, for my level of dysphagia.) Thanks to Chef Daniel, I got a chance to sink my teeth into...wait for it...Beef Wellington, Stuffing, Sourdough Bread, Caprese Chicken, Cranberry Pear salad, and Broccolini. Following a fantastic meal, Chocolate Lava Cake accompanied by thick, rich, and creamy Egg Nog. How do I convey the deliciousness? My eyes rolled back and my taste buds practically sang. Mmmmmmmmmmmmm. ♪ Tis the season to be jolly, ate my fill, plus cake by golly. Fa-la-la-la-la-la-la-la-la-la ♪♪ Not only did we dine, we got to listen to...

...On the eighth day of Christmas, my true love gave to me... eight Christmas crackers , seven cotton candies, six bags of kisses, five red heart orns, four rein-dogs poopin', three chocolate Santas, two red poinsettias, and a glass pickle to hang in the tree.  What the devil is a Christmas cracker?! That is my question. They look like brightly-colored, wrapped candies but they are not. I hope they are not firecrackers; I hate firecrackers. Oh well, they look beautiful, bright, and shiny.

Yes, it is the eleventh of December, as a matter of fact, however Hot Rod, my husband, has just gotten to the seventh day of Christmas. What's more, is that I'm amassing quite the cache of candy, more than I can eat or store. Sad news, huh? Don't cry for me! I can share and I have. Tina's Twelve Days of Christmas  On the first day of Christmas, my true love gave to me...A glass pickle to hang in the tree.  On the second day of Christmas, my true love gave to me...Two red poinsettias, and a glass pickle to hang in the tree. On the third day of Christmas, my true love gave to me...Three chocolate Santas, two red poinsettias, and a glass pickle to hang in the tree. On the fourth day of Christmas, my true love gave to me...Four rein-dogs poopin', three chocolate Santas, two red poinsettias, and a glass pickle to hang in the tree. On the fifth day of Christmas, my true love gave to me...Five red heart orns, four rein-dogs poopin', three chocolate Santas, two red ...

24 I have a dear friend heading out to Maui for the first time next week. Since I've been there before (4 times), I've got a few suggestions of things to do and eats. Note: I've always been budget minded but I have always, always, always had fun! First, I have always rented a car; Getting from the airport to the hotels, beaches, and tourist areas requires travel. Plus, the road to Hana must be driven and takes a full day. The road to Hana is challenging, pack your patience and FOOD, opt for full insurance on your rental car, and leave early!!! Worthwhile for photo opportunities. Do not even consider the shortcut, it is not worth the risk of death or stranding. Stop early along the way for the best banana bread of your life. Anywhere, but especially at Aunt Sandy's on the Ke'anae Peninsula. Buy Fruit at the fruit stands along the way. Bananas are amazing, try to locate a fuzzy red fruit called Rambutan, for a unique taste treat. Check out http://www.mauiinformation...

2 Back to the important things in life, fun and presents. On the sixth day of Christmas... What do mean it's not the sixth? Oh yeah, we are giving my husband a mulligan. He thought it was a good idea to give his true love, six slices of white bread. 😼 Yes, I know, I know I married him. That is just the way he rolls. As he said, I'm just a dumb tinner and YOU married me! I remember marrying a sexy cowboy-type who rode a sexy, black, iron horse. I guess we know where my head was at. On with Tina's Twelve Days of Christmas...  On the first day of Christmas, my true love gave to me...a glass pickle to hang in the tree.  On the second day of Christmas, my true love gave to me...Two red poinsettias, and a glass pickle to hang in the tree. On the third day of Christmas, my true love gave to me...Three chocolate Santas, two red poinsettias, and a glass pickle to hang in the tree. On the fourth day of Christmas, my true love gave to me...Four rein-dogs poopin', three choc...

Pleasantly surprised today, a nurse relayed a message from the Director of Nursing, a change is coming. The other night, a patient care technician (PCT) sprayed a heavy duty air freshener down the hallway...nearly suffocating me. Unfortunately, it was not the first time. I have ALS, amyotrophic lateral  sclerosis, a neurological degenerative disease which has progressed far enough that it has impacted my breathing. Furthermore, I am a quadriplegic, meaning all four of my limbs are paralyzed, and unable to speak intelligibly. I live in a skilled nursing facility, also known as a sniff (SNF). I rely 100% on caregivers to attend to my every need. Imagine my dilemma, I have approximately 10% Forced vital capacity (FVC), Meaning that is all the air that I can breathe, compared to the 110% that I started with. Now, I'm contending with toxic pollutants invading my hospice room. Insult to injury, I cannot escape nor can I tell anybody to close the door and open a window. I'm desper...

It's beginning to look a lot like Christmas, every where I go.... And these days I usually go in my room. I got my favorite Christmas minion to decorate a bright spot, or two, in my room. My in-room artwork, provided by Bailey Boushay House, sports battery-operated, white, micro-lights and my glass pickle, thanks to my minion. And, I have my tiny Christmas tree, prominently displayed on the countertop, right at my eyeline. To my left is the end table with my two poinsettias, my chocolate Santa suckers, Jelly Belly-poopin' rein-dogs, my Seahawks "12" Snowman (from my bestie, Rita), and my emperor penguin. My favorite minion, a.k.a.Flhrod@comcast.net, a.k.a. Hot Rod, a.k.a. Rodney, also known as my husband, brought me another gift of five christmas tree ornaments. Thus, continuing the saga of Tina's Twelve Days of Christmas.  On the first day of Christmas, my true love gave to me...A glass pickle to hang in the tree. On the second day of Christmas, my true lov...

My husband took my mom and dad to the airport early Saturday morning.  What a good son-in-law he is! He even asked my dad if he put anti-freeze in his car. He did not and there's snow in the forecast! Whut whoa! My husband took the initiative and put in anti-freeze. I forgot to mention that they are on their way to Maui. I guess Dad had his mind on other things... My husband had plans to ride his Harley to the Toy Run in Olympia. However, he forgot to do his homework and find out exactly where the event was. He rolled into the Black Lake area of Olympia and no Toy Run. I find this hilarious! Why? He owns a smart phone, and is such a luddite, he did not bother using his phone to get the location. Typical Rodney. Oh well, I guess we know why I got a big, stuffed, Emperor Penguin. Rodney did bring me another installment of Tina's Twelve Days of Christmas. He found the cutest, little, novelty reindeer, actually the reindog creation from The Grinch Who Stole Christmas. The Nove...

First and foremost, it is important to know exactly what to do to keep me safe. Bring a cupful of water and a toothette (swab) to the food table. This can be used to moisten my mouth, to move food from the roof of my mouth or to remove food.  Be prepared to call for additional help from nursing in the event of a choking incident. Pull the call light cord from the wall.  Make certain patient is upright. For me, 90-degrees is unsafe for respiration.  Temperature check. Touch food to patient's bottom lip whenever presented with hot, fresh food.   Spicy factor. Spicy or overly sour foods can produce excessive saliva. No thin liquids by mouth. Jello turns into a thin liquid. No mixed textures. Soups are the usual suspects. Small bites.  No multiples. Loading the spoon or fork with small pieces of food creates a hazard. I can't track.  No flat pieces. Sliced cheeses, meats, pickles, etc. Can't track within my mouth.  Use gravies, sauces, an...

Another verse for my Tina's Twelve Days of Christmas 'and a new name, for my husband's sake. He has an aversion for acknowledging the inevitable, the impending end to me. That's kind of gratifying. He loves me. He found my twist on the old standard amusing and is taking up the challenge to bring the song to life. I love it! And I love him! On the first day of Christmas, my true love gave to me...a glass pickle to hang in the tree. On the second day of Christmas, my true love gave to me...Two red poinsettias and a glass pickle to hang in the tree. On the third day of Christmas, my true love gave to me... Three chocolate santas, two red poinsettias, and a glass pickle to hang in the tree.

My husband has been bringing touches of Christmas cheer to my hospice room. Thus far I've received two red poinsettias and a glass pickle to hang in the tree. Oh no! That could be the start of whole new version of  The Twelve Days of Christmas. We can call it The Dying Woman's Twelve Days of Christmas or something in that vein. On the first day of Christmas, my true love gave to me...A glass pickle to hang in the tree. On the second day of Christmas, my true love gave to me two red poinsettias and a glass pickle to hang in the tree. Sing it! Feel free make suggestions for additional verses....

Pleased to report a good save and measurably improved response to suctioning needs. As usual, adult diaper change spurred secretion movement; I was surprised when the patient care technician (PCT) Calmly asked me if I needed suctioning. Upon my ascent, she told the other PCT to pull the emergency cord, and turned on the suction machine. She even did a decent job removing most of the secretions. The charge nurse promptly responded to the call, backing up and taking control of the suction wand.  If I may, my only critique is that this particular nurse is the only critical thinker who considered gravity when suctioning. I was rolled onto my left side, thus the secretions were pooled in my left cheek, not the back of my throat.

Contrary to what I publish to my blog, I want people to know that I am not unhappy. I laugh often and love much. I do enjoy Life, despite my circumstances. Having ALS is a bad break, but I should hope that it doesn't define me. I've had some incredible experiences that I doubt I would've had otherwise. I've rubbed elbows with some good people. I've gotten to know people in a unique way. I've been a part of purpose much greater than myself. I've been able to contribute to the future.  I learned to love Football way too late in life!I wish I could have gone to a game and watched the Seahawks in person! I adore all of them but mostly, Richard Sherman. I've really enjoyed watching the games with my husband.

I'm better about noticing when I need to use the cough-assist and suction machines. When I indicated that I needed them, the new nurse had no idea where to stand in relation to the equipment. The charge was not taking control, in my opinion, leaving me to use my head and eyes to motion her to assist. I got panicked in the face of malfunctioning equipment, yet again, and ordered the charge out. (An order that he, wisely, disregarded. I still had secretions that needed to be dealt with.) However, the new nurse, mistakenly, thought I meant for her to leave, so she did. Oops! Another nurse filled her spot. Lucky for me. So, the new issue is that somebody is fiddling with the dials on the cough assist machine. Really! As if I don't have enough challenges. Furthermore, the nursing home does not have any idea what the settings should be.

23 23 Deep or shallow? Do I go deep within my soul or stay topical, light, and shallow? La, la, la, I love having access to audiobooks! Although having ALS has left me a quadriplegic and confined to my bed and my hospice room, I take flights of fancy and live alternate realities through the imagination of others. Then there is my reality which changes daily. I have the mindset that it is what it is, and I have done all that can be done, therefore I shall get on with it and be as happy and healthy as I can be. Take today, a fairly typical day in the life, I've been even keel, status quo. I had a good visit with my husband, no big blow-ups, a bit of mental tug-o-war, as dysfunctional, but loving couples do. Same with my caregivers, no big deals, some capable, others not so much. This night I request the shower chair which doubles as the commode. I get two of my favorite caregivers, one pretty efficient, the other an eager relative newcomer. I can appreciate the value of trainin...

It's important to me to report that I had another respiratory issue and was well taken care of. The equipment was working properly and Sara was on duty.

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...

Checking in to document yet another fail on the respiratory front. During a brief change I needed suctioning. This happens quite often and it is always an exercise to get the patient care technician (PCT) of the day to understand me and not turn me on my back. The PCT on this day used the alphanumeric board to determine my need. Thank you Sophie! She, correctly, pulled the cord to initiate a staff emergency. Nurses answered the call promptly but were thwarted by another machine failure. The suction machine failed to suck! You cannot make this shit up! This machine fails 7 times out of 10. At what point is it considered negligence?! Is this how it is supposed to be? Obviously, I lived, for I am on another rant. The mucus secretions pooled while I lay on my side and Sophie cleaned them out with a toothette. I don't get it.

Managed care, do not get me started. It is the bane of my existence and my savior. If quadriplegia has curtailed my activities, and it has, then being in a home has curtailed even more. I've had to dumb it down and set my standards low. Gone, are the halcyon days of getting in my wheelchair to go for a stroll or sit in the sun, or even sit in the sun room. Neither the nurses, nor patient care technicians, know how to put me in my wheelchair. Seriously. My chair has head controls and it is a bafflement. Most caregivers don't even realize I have head controls. First, they hit the left head pad when they lift the armrest which turns the chair on. Next, they sling me over and place me in the chair. The problem? My head, naturally, rests on the headrest, which accelerates and drives the chair and is beyond my control. Running over a caregiver or running myself into an obstruction are very real consequences of their ignorance. What could be worse? The caregivers remain clueless abo...

Deja vous. Last night I had an attack, an attack of glue-y mucus that tried to drown me. I have ALS, advanced by time, and thus, suffer from the more distasteful ravages of the disease, debilitating muscle spasms, quadriplegia, and excessive mucus secretions. In a moment, I went from relative comfort to fighting to clear an obstruction from my trachea. No, I do not sport that appurtenance. This time, I had competent caregivers, adept at using the cough assist and suction machines, and the cough assist machine failed. Somehow, the dials got moved and I didn't have the air pushing in. (Try explaining that while you're struggling not to drown in snot. I did.) Luckily, we got past that hiccup, and got the obstruction clear. I ended up needing to give those machines a workout several times that night.What was even better was being aided by a critical thinking nurse, who asked good questions to determine the cause of the unusually thick mucus. He discovered that I'd become de...

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...

The Flying Nun, a character played by Sally Field in 1965, was my most memorable Halloween costume for two reasons: I idolized Sally Field and watched The Flying Nun, episode after episode, then rerun after rerun. And I remember my mother fussing, making my costume from a sheet and an album cover. I felt special and loved. Lord only knows where she scrounged up a crucifix, since we weren't church goers! In turn, I wanted Halloween to be special for my daughter and made her first costumes. I modified a Cabbage Patch bunny costume when she was a babe in arms. Next was a silky satin clown outfit that I fussed over. That one was a big deal, a financial splurge, and so unbelievably high on the cute scale! I think my efforts had an impact, Halloween is a big deal in her life. Or, so my ego hopes. Her costumes really amaze me, she plans months in advance.

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 ...

24 24 What a Night! Just when I begin to think that life doesn't hold much more for someone like me, with limited abilities, life throws me a delicious curve ball.

At the risk of alienating friends, neighbors, and family: Just watched the second presidential debate between Hillary Clinton and Donald Trump.What a shit show! An embarrassment for our nation. Every year we have eroded more and more. I will likely pass from this world by 2017, but I worry for my daughter and her future. Our leaders have no sense of dignity. Actually, that is what I see with Donald Trump. Hillary Clinton seems to want decorum and dignity but the Donald has had a debasing effect on American politics. His tactics have had a polarizing effect on me. His bullying and bluster are over the top. What he refers to as "locker room" banter as if that somehow makes it acceptable, is not much different than Paula Deen getting caught using the "N" word. It absolutely reveals his heart and his low opinion and disregard of women. I truly fear for the future of our nation.

I just met my new psychologist and I already like her. I would say that it is effortless to talk to her, but talking to anyone through an augmentative and alternative communication (AAC) device takes a great deal of effort. One must think about what to say and drill it down concisely and succinctly, Then attempt to type it out with your eyes on a wonderous, but infuriating machine, and hope you nail the 'Speak' button, and not the 'Cancel' button. You're praying that the device doesn't spontaneously, disengage the eye gaze, leaving you mute and helpless. You're also praying that the calibration holds and your eyes don't tire or dry out. Aside from all of that, she did not overwhelm me with rapid fire questions, nor invade my personal space, by insisting on reading while I'm writing, instead of allowing me to "speak". Those things are huge. Counseling somebody with my disabilities, present unique challenges. I have major physical deficit...

Settin´ my gleaming 2006 Harley Davidson Softail Deluxe upon it's kickstand, swingin´ my right leg over the black leather, conch-studded saddle. I undo the top heavy duty snap on my form-fitting, white leather chaps, to get to the front pocket of my Gloria Vanderbilt blue denim jeans, where I, accidently, left my circular key on the Harley Davidson-authorized key fob. With a twist, I lock my bike and check my tombstone tailight, to make sure I've shut off the lights. The glacier white pearl literally glows on the two tone paint scheme under the streetlights, before the sun comes up.  I'm a lone rider on my daily commute among the sedans, SUVs, and trucks headed out to begin their days. I'm stopping off to pick up my treasured grande´, non-fat, no water, chai tea latte´ before clocking in to work. How does one carry a latte´on a motorcycle? You ask. I have a method. I have a leather handlebar bag, that I prop up the travel cup in, with extra gloves and headscarves. V...

Have you ever bitten your own face? I have. I awoke from a deep sleep and had an involuntary muscle spasm in my mouth and jaw. To the best of my reckoning, my jaw loosened up and dropped over my bottom lip and covered my upper (chin?), then a muscle tightened up, drawing my teeth right into my face. I strained to relax and soften my muscles to keep from breaking the skin. It was too late to avoid minor swelling and bruising. What a truly bizarre feeling! One more thing to fear, waking up to the face-eating monster, me. The entertaining spasms that give me the anti-finger. Think about it. All of my fingers are paralyzed, however I still have feeling (or sensation) and yet, they are still susceptible to spasms which move them, lift them skyward, defying gravity, defying paralysis. Yawning brings on a storm of spasms, drawing my entire face into a grimace. It also affects my throat and tongue. Indeed, even my soft palate. Muscle spasms are not all bad. The ones in the early days w...

My husband's eldest cousin died, unexpectedly, this weekend. His body was discovered off Vashon Island in a kayak. We really don't know any details. Charlie was not only a family member, but a friend. My husband logged many hours mountaineering on many of the peaks in Washington, and one in Oregon. Mount Rainier, Mount Baker, Mount St. Helens (before the eruption), and Mount Hood (if I'm remembering accurately), Along with Charlie and his brothers; Mike, Dan, Rick, and Ernie. They sounded like a somewhat motley crew, climbing mountains on-the-cheap and whilst drinking Rainier Beer and smoking grass. Oh, and cousin Ernie was crazy (or more politically correct, mentally ill). It made for some hair-raising tales of adventure, not fit for publication by The Mountaineers.  It should be known that the misadventures occurred when they were young and dumb. Charlie grew up to become a responsible adult, a single father of two sons, a respected electrical inspector, and a minis...

1 24 Glittering Birthday tiara, emblazoned with "Birthday Bitch", sent forth by my surviving sister, sits askew the lampshade. A half eaten bag of tortilla chips remains on the table, dyed navy and green, in honor of the Seattle Seahawks. Perfuming the air, a squat, clear, vase filled with short-cut, long-stemmed, white and red roses. Birthday cards litter my counter and tabletop, wishing me a  "Happy Birthday" in varying shades of funny. One tells me my sister "squeezed a unicorn to make me a rainbow" and there sits a rainbow-hued pile of poop. Another tells me a "Birthday Hug is Incoming" as a grey kitten flies through the air, from my husband. Still another, tells me that my mother "was going to get a flash mob together to do a birthday dance"; when you open the card, it belts out "Everybody Dance Now" and a little man vibrating (dancing). One good musical card deserves another and I have one left from last year from my...

Looks like I made it! Another year older and I don't think I've EVER been more grateful or relished the simple act of breathing more. I ate Thai food, dark chocolate mousse, and a killer good Birthday cake! I overdosed on Iliza Schlesinger stand-up. Check her on Netflix! War Paint, Freezing Hot, Confirmed Kills. Did you know that PINtrest is porn for white women?!  Me neither.How about when you applied to become a girl, and they asked what your favorite season is. "Fall. Motha-fuckah!!" She retorts. Because we love #Pumpkin everything! And we lose our shit when the leaves turn.  Babe, babe, babe, babe, babe, babe, babe, babe: Is it cold outside? I got serenaded at midnight, so sweetly. All day I had Birthday wishes, on Facebook and in person. Lynn sang and played harp for me and my family. I got serenaded a second time by dayshift. And Jordan, my sweet Jordan, who comes to crochet bedside for me, showed up to facilitate birthday shenanigans. She's awesome! She...

2 1 1 Tomorrow is my Birthday, I shall be the oldest I've ever been, and I suspect, I'll ever be.

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.

Today is September 11th, a day that our nation, collectively, grieves the terrorist attack on our homeland. It is also a day significant in my life; four years ago, I was diagnosed with ALS. Instead of hearing what I have to do to get better, I learned that I would never be better, again. I was overwhelmed, emotionally. Absolutely overloaded. Loss has been a daily reality. Struggle is my constant companion; the struggle to accept my condition, the struggle to accept my future, the struggle to accept the loss of my independence, the struggle to confront my mortality. It's been messy but I am both stronger and softer.  Life is good.

Today is the day of the ALS Walk. I should specify the city, Seattle. I have a team, TEAM TINA, formed by my husband, at the last minute. I must admit that I was not interested in the details of the walk. I doubted that I'd survive to attend and thus, nonstarter. Not a good attitude, I know. I did not attend. I'm just too fatigued all of the time. Just holding up my head is an effort. I was surprised and heartened to find we raised $500! It is so important to raise money for research to cure ALS. This is a horrible disease!!! Thank you to my walkers and donors! ***I stand corrected.  Team TINA had 12 walkers and raised $650!!  Wow.  I am humbled.

3 19 What's the worst aspect of having ALS? Is it the continual loss of motor skills?  One day you can no longer lift your own finger? Hand? Arm? Or scratch your own nose when it itches? Or wipe it when it runs? Or pet your own cat? Or hold your husband's hand? Or button your own blouse? Or unzip your favorite blue jeans? Or wipe your own behind? Notice the new stilt in your gait? Trip over air to faceplant on the kitchen floor?  The front porch? Graduate to a cane? Rolling walker? Then a manual wheelchair? A fancy motorized wheelchair? Is it the falling away of friends and family who don't understand my disease process? Admittedly, ALS, amyotrophic lateral  sclerosis, is a scary disease, it's a terminal illness, there are no pluses to this disease, you shrink, shrivel, slobber and, ultimately, die anyway. They are right to be afraid but you are not contagious. And you need support and effective advocacy. The few that visit, are put off by the out of sync speech ...

.1 I'm afraid my time is ending. My battle is soon over, with a foe who has slain so many wonderful people. I am but one of many. I'll not see my daughter marry, nor bear my grandbaby. This makes me sad. I hate to leave my husband, the love of my life.  We had such dreams, houses to finish, miles to ride, vacations to take, and love to make. Several times, I've awakened, sluggishly, locked half in, half out of a dream. Nurses have, lovingly, held my hand, while I've cried reluctant tears.

I love my husband. You are supposed to love your spouse. But I'm fortunate enough to really know that I love him through thick and thin, sickness and health. Our love has been sorely tested. Love gets tested from many directions. Fidelity, finances, and children are the biggies. And we were no different. I lost a marriage, a lifestyle, and financial security when my first marriage dissolved due to infidelity. His history bore the same scar. We both had a single daughter from our first marriages that we saw only sporadically thanks to custody battles. We were mirror images on many levels; our children, hunger for a monogamous relationship, our emotional scars, our Harley Davidson motorcycles, gainful employment...What more do we need? How about love of God and compatibility? Sobriety? About God, we both classified ourselves as believers. We weren't church attendees, nor did we belong to a congregation. If we did, we may have had some issues. But our church avoidance was an...

I'm on a modified diet.  I did not choose to be on this diet. The management of the facility defers to the speech therapist. Speech therapists professional opinions vary, in my experience. My first speech therapist was thorough and gave me a standardized form, detailing recommended diet, and guidelines pertaining to oral care: Check for pocketing after every meal; Small bites; Sauces and gravies to moisten foods for cohesion, No mixed consistencies; Foods to avoid; Foods to Beware of; (Liquifiable foods like jello and ice cream); Liquid recommendations; thin, syrup-like, pudding, npo; Alternate sips and bites; and such.   I think informed choice is the fairest objective. But despite being of sound mind, I do not get to choose. I will, however, endeavor to educate. The Dysphagia Advanced Menu clearly says hash browns but the kitchen sends mashed potatoes. Mashed potatoes just aren't appetizing at breakfast, but catsup on hash browns or sliced, fried potatoes (aka Home ...

17 A friend died today. That phrase, all too familiar when one collects friends with ALS. What was noteworthy for me, was my reaction to it; I was enraged. An example of frontotemporal disease, the emotion-altering gift to 10% of ALS sufferers? Or an understandable reaction to this debilitating disease? Or I'm just an a**hole? You be the judge; I can't stop you anyway.  My first reaction to the news was grief; tears streamed down my face, as I recalled her effervescent personality. I only met her a few years ago during an ALS event. She was magnetic; you wanted to be lucky enough to be in her orbit. If she was attractive, the added combination of her husband's devotion, and her faithful sidekick, a lovely retriever, made her impossible to resist. If I'm unflinchingly honest, I coveted her life, with or without ALS. Her husband never abandoned her, never left her to steal her last vacation, and probably cuddled her in bed toward the end. Her community came together to...

My hospice care is state of the art. I believe that. Formerly, I was warehoused at a Life Care Center, a well-rated skilled nursing facility. My reality was tantamount to prison. I was not lovingly cared for; I was not even professionally cared for. I survived poorly trained, and yet, certified nursing assistants, poorly staffed, crowded conditions, and sadistic management.  Following a 60-day stay at the hospital, I was discharged to Bailey Boushay House, a skilled nursing facility geared toward the care of patients with HIV-AIDS, who also take ALS, Huntington's, and end of life care. They are more generously staffed and operate in a culture of respect and inclusion. I am fortunate and blessed to be here. When I arrived, I was a skeptic, watching for the shoe to drop, when the veneer would wear off, to reveal the real goal of money, not caring. Was overwhelmed by the stark differences, so many differences! I had my own room, not having to listen to Keeping up with the Kardas...