IntrinsicTina

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