IntrinsicTina

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...

22 As a person with ALS living in a nursing home, I encounter much ignorance and get homogenized care. That is not saying my caregivers are stupid. On the contrary, they are intelligent and highly skilled. The problem is that ALS is not your typical disease. To effectively and safely care for us, one must have a thorough understanding of ALS disease processes. ALS destroys nerve cells in the brain and spinal column that control muscles, muscles that control arms, legs, eating, and breathing. As these nerve cells die, they cause itching, numbness, spasms, involuntary movement, varying degrees of pain, and, ultimately, paralysis. It's extremely important to understand what is NOT effected by ALS. Mental competency is NOT effected. Although, there is growing evidence of possible emotional involvement. Sensory is not effected, that includes the senses of touch, smell, taste, sight, and hearing. In my opinion, caregivers who employ critical thinking skills fare far better with ALS p...

I've had some amazing caregivers over the course of my ALS journey. In fact, I've had some amazing friends who acted in place of caregivers, in my tumultuous early days, when I lost mobility and emotional degradation (unbeknownst to me at the time). Marcie comes to mind. She dropped everything to care for me, despite the disadvantage of not having any real idea of what ALS was. As I deteriorated, my hands failing, using a cane, and becoming unable to dress myself, she prepared food and babysat me through the night. (My husband worked the graveyard shift.) If you saw the movie, "You're Not You", and remember the bathroom scene with Hilary Swank and her new caregiver, played by Emily Rossum, awkwardly maneuvering urination and wiping, then you witnessed Marcie and I. She was great but I focused and built upon perceived negatives (my motor neurons NOT at work). I severed our relationship due to exaggerated fear and anger. At the time, I thought I was astute and jus...

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...

1 I have ALS. And it sucks. But, I'm handling it. I am not ALS. The misery is not every second of every day. I find joy in the simple and the real. I applaud and envy those people who have family who gather round them to care for and love them to the grave. I don't have that. My family ignores me, and worse, reaches out with hateful, uncaring messages, worse yet, they blame me. That way, they can go about their lives guilt-free.  My family have all retreated into their various dysfunctions. My biological sister,into her "blame the victim" hostility stance. Whipping up her life long resentments until she's hard of heart and spoiling for a fight at the drop of a hat. Hair trigger, comes to mind. Even wrangling her best friend to throw barbs when she cannot. I've felt it absolutely necessary to ban her from. my life for self preservation. She has violent tendencies. Just listen to how quickly she wants to "kick my ass" or anyone else who doesn't a...