IntrinsicTina

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...

Had an "episode" today. I'm telling you, not to brag, but to be brutally honest. I am not proud of it. By episode, I mean a lapse in polite socially-acceptable behavior, an emotional outburst. I will explain how it came about (for myself as much as for you).  I was at the end of eating my lunch when I choked. It happens. Just part of the disease process of ALS As muscles fail. What began to ramp up my emotions was my thoughts that I wasn't getting the help I needed. My power wheelchair had cycled off leaving me powerless to tilt forward to clear my airway (my PCT was not aware of my technique) so I coughed away expending energy. As a result, I was coughing up secretions and needed the suction machine which had NOT been set up. The aide immediately set about putting the components together but the going was slow and I kept coughing away. Without the suction machine working, I was thinking "Oh  God, this is just like the last home I was in, paying lip service t...

I cannot believe the end has come so quickly. I was stuck in a wholly inadequate nursing home for damn near a year. It may as well been prison. The management was not interested in my well being as much as in the conformity of  their populace. They blithely took away any small freedoms I had in the name of safety. I went from farm fresh eggs to institutional crap. From organic juicing to the cheapest watery flavored facsimiles. The nastiest blandest toughest excuse of food I ever had the misfortune to taste and I grew up on commodities. When I was physically able to manuever my power chair, they slowed it to a crawl. Then they took it away altogether, ignorant of the medical necessity of it. They were ignorant of the PseudoBulbar Affect (PBA) or Frontotemporal Disease (FTD) I was suffering from which governed my emotions. Instead, they would treat me as a child and exert discipline upon me. Wholly inappropriate. I needed treatment and understanding. There was no real attempt to l...