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...

.     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...

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...

Demands made upon other people for too much at-tention, protection, and love can only invite domina-tion or revulsion. TWELVE STEPS AND TWELVE TRADITIONS p. 44 I've heard people in AA say that every question they've ever had was answered between the pages of the Big Book of Alcoholics Anonymous. That has not been the case for me. Perhaps, I did not know where to look. Perhaps, I wasn't asking the right questions? Sometimes, I get my answers retroactively. Like now...The preceding quote, which actually came out of the 'Twelve and Twelve', as they say, Gives me some wisdom I needed last year when I clung so desperately to my husband when my disease caught up with me so quickly. (If you're reading this blog for the first time, I have A.L.S. And became paralyzed within eight short months. I was forced into a nursing home when my husband abandoned me a few months after that. I am currently 18 1/2 years sober.) When I ended up abandoned, I could only see the res...

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...

I've told tales about how my family abandoned me in my hour of need. Unfortunately, they are true. However, I think it's important to let you hear about what my family had to endure as we went down the rabbit hole of fast-progressing ALS with a side of FTD (frontotemporal disease). It must have been June 2013 that I last felt relatively normal. My father, stepmother, and stepbrother came out from  Ohio for a visit. I was using a manual wheelchair but able to self-transfer. I thought I was handling life's challenges well. Although, I was blithely cutting people out of my life for what I percieved as grave infractions. First to be cut was my sister, the one related by blood and closest in age to me. She and I have always had very different personalities and have clashed many times on a variety of subjects. This time it was following a shared vacation to Maui. I'm an avid photographer and took many photos despite failing strength and coordination in my arms, hands, wri...

  So much has happened in my life since my last blog entry! Let me just fast forward and tell you that all ends well...Eventually. September brought my husband leaving me, moving all of his personal belongings out of our home, hiring strangers to care for me, then taking off on our two-week Disney cruise to the Panama Canal. Our air-conditioner slow- leaked water,  buckling our diningroom subfloor. Our septic system failed. One of my two caregivers didn't work out. I alternated between all-consuming rage and soul-wrenching despair. I was seeing a team of therapists; physical, occupational, and speech.  One of my therapists called county mental health after I made an off-color remark about killing myself if only I had the ability. I thought the comment was more of a smart ass way of acknowledging physical helplessness. In retrospect, it was an indication of my increasing depression. October brought about a reconciliation of sorts. My husband stayed gone for six weeks. ...

Gonna take me awhile to "exorcise this demon".  The farther away I get from releasing my friend from caregiver status, the more I realize the magnitude of the bullet I dodged. I realized the reason she shied away from transporting me in her vehicle (while we shopped for our wheelchair van) was that she was concealing the fact that she went back to smoking.  I clearly stated that I would only take on a non-smoker citing close proximity and eventual life-threatening breathing difficulties.  Once, climbing in to her car, the smoke was palpable, the butts were in a bottle of water, not to mention her e-cigarette habit.  The worst had to be the lies I told myself on her behalf.  Every time she helped me undress/redress my nose was pressed against cigarette stench that I kept thinking was due to her chain-smoking roommate.  Now, I know better. Shame on me and my assumptions.