IntrinsicTina

Care Conference seems like a big waste of time and energy. Not enough follow thru. Email and signs don't teach newcomers nor old timers. Still no emphasis on time consciousness. Whenever I'm changed they ought to hold their breath, or breathe thru a straw with a clothespin on their nose, then perhaps they'll rush to raise my head and get pillows under my arms so I can get a good breath. Regarding the room issues, the overhead light closest to the windows has already been replaced. Never fixed. Always flashes intermittently, which interferes with Tobii operation. Nobody gives whole story. Tell Tate the history. I'm always asleep when he arrives. Same story with the DVD Player, never Finishes downloading the movies on Netflix since I got the new one.(Tate has already addressed all of these this very morning). Thank you Tate. I'm the weak link. Everyone assumes I can fend for myself but I cannot rely on the tobii working.  Dayshift doesn't place tobii in front ...

Interesting experience this night. I couldn't respond to my caregivers when they worried and fussed over me. I could hear them asking me questions but try as I  might, I was powerless to communicate. What's more, I could not move air in and out of my lungs. It was like I was merely a spectator, no longer a participant. What's more interesting, to me at least, is that I was not filled with terror. It just, was. I wanted to tell them that the bipap was not turned on but was, in fact, further exacerbating the problem. One of my complaints about care in a facility, is that caregivers are ill prepared to care for us, PALS (people with ALS). With staff turn over and the nature of shift work, there are far too many caregivers on rotation to learn how to administer to our specialized needs. And just when they are trained up to give good care, they move on. In the year and a half  that I've been here, the staff remains ill prepared to effectively attach my bipap mask to my f...

1 1 Dear Caregiver, I need for you to realize how much ALS impacts my breathing. Like most caregivers, you probably already understand that my muscles are failing me. ALS affects neurons in both my brain and spinal column, overexciting, then killing them. Hence, my fasciculations (muscle twitches, nee spasms), paralysis, dysphagia (swallow difficulty), and dysarthria (speech difficulty). ALS affects my breathing making it difficult to breathe while flat on my back or when I'm set up at 90-degrees.  Do not underestimate the effect, the weight, that gravity has on weakening chest muscles, including the diaphragm. It's like trying to breathe with a 100-lb weight on my chest. It can, literally, kill me. It's why I fly into a rage at caregivers, seemingly without provocation. I'm in fight or flight mode, trying desperately to live to see another day. One of the most problematic activities is changing my Attends. It is essential to minimize the amount of time I spend fl...

My psychologist gave me notice today.

I'm chagrined to realize how little I've managed to produce blog posts. I must admit that I've been so fatigued to the exclusion of all activities, save for listening to my beloved audiobooks, bathing, and attending my monthly ALSA meetings. Oh, and watching the TV news, and movies via Seattle Public Library and Netflix. How small my world has become. I have read some good books, which I chronicle and review on www.Goodreads.com/IntrinsicTina. I'm an avid reader of detective novels, mostly pulp fiction, formulaic works from Jonathan and Faye Kellerman, Kathy Reichs, Michael Connelly, Clive Cussler, and James Patterson. But I've grown fond of biographies and memoirs, listening to the stories of Drew Barrymore, Wildflower , Marial Hemingway, Burt Reynolds, Enough About Me , Carrie Fischer, and Sarah Silverman, to name a few .  You may think that my life is not worth living, but I think it is. I can no longer do what I used to do, but I have love in my heart and a ...

I wish I were at the Democratic National Convention. What a great time it looks to me. I surprised myself by being transfixed and watching every single night of it! I had already decided to support Hilary Clinton before the DNC, but watching it in it's entireity solidified my choice. I'm also more fearful than ever that our country is in real trouble if Donald Trump comes to power. I pray the people of the United States of America get wise And vote for Hilary Clinton.

19 1 Do yourself a favor and watch the movie, Gleason: Diary of a Saint. While the subject matter is difficult, a sports hero is diagnosed with a terminal illness, the family deals with their new reality with love, humor,  and purpose. Six weeks after his diagnosis, his wife delivers a diagnosis of her own, she's pregnant. What ensues is a unique all access pass into Steve and Michel's life. If you're offended by off-color humor, this is not your movie.  I loved every piece of this flick! I found it unflinchingly honest. (Check Michel's look of horror when Steve's coordination starts to go following a triathlon or the communal nature of Steve's bathroom routine.) And as a fellow PALS (person with ALS), I garnered a few tips on how to set up my communication device for my weakening neck muscles. I also must find out where Steve got his leg pillows. Rather than going softly into that sweet night, Steve and Michel start their Gleason Initiative Foundation, whic...