IntrinsicTina

Every time I get to a place of acceptance, it seems God allows ALS to take that away as well. When I lost my job, I had to learn that a job did not define me. I said, Okay, if I cannot work here, then I will redouble my efforts to get to the bottom of my infirmity, heal, then get a better job. I got my ALS diagnosis. I grieved the loss of my life as I once knew it. I said, If I'm to lose control over my muscles, I will get my affairs in order; I will sell my motorcycle and my car and purchase a wheelchair van. We will build ramps onto the house, widen the doors, add a door to the bedroom, and add a roll-in shower. As long as I can assure my mobility, I can deal.    When I got a whopping dose of frontotemporal disease, as a byproduct of ALS, the combination of wildly fluctuating emotions and increasing caregiving needs, my husband became overwhelmed and tapped-out, abandoning me and forcing me into a nursing facility. My family withdrew. I thought, I cannot do this! Event...

20   1 I gotta talk about it! I had another scrumptious dining experience, here at Bailey Boushay House! And if you're one of my regular readers, you may get the impression that I only blog about Italian dinners. However, I will tell you now, I'm a foodie. French, Indian, Thai, Japanese, Vietnamese, Columbian, Mexican, Tex-Mex, African, Irish, American. By God, if it's a foodstuff, I'll probably try it and, quite possibly, like it! It's coincidental that I'm, once again, going to rave about the awesome Italian dinner we enjoyed. To mix it up for you, I'm going to start at the end. That's right, if I had the option, I would've had dessert, first. Of course, I may well have cheated myself. Dessert was not particularly Italian, but it was my personal favorite...Creme Brulee´. Imagine this...Chef, clad in his classic chef whites, rolls his silver cart of magic into the roomful of satisfied, yet expectant, diners. Atop his cart, whipped cream, lady fing...

Have you ever had password problems,? If you're online, the answer is probably yes. You go through your litany of passwords until you're locked out, happen onto the correct one, or you have to reset and pick another from your litany or, God forbid, you have to make up a new one! It can be a test of patience for an able-bodied person but consider the challenges to the physically-impaired. I have A.L.S., Amyotrophic lateral  sclerosis, otherwise known as Lou Gehrig's Disease or Motor Neuron Disease (MND). My disease process has left me a quadriplegic, and I'm fortunate enough to own  a Tobii alternative and augmentative speech device. This device enables me to communicate using eye gaze technology. It's amazing and brilliant and totally infuriating when it doesn't live up to expectations. It doesn't function exactly like your home computer, in that there are a lot of extra steps. For example, typing this blog entry requires forethought and few options for ma...

Tuesday is shaping up to be my best day of the week. Every day holds the requisite eating, changing, television, and napping. But Tuesday, I got a glorious, hot bath in a handicap-accessible bathtub with my Angela and Lisa, reorganized my shower caddy with my Lisa, read "The White Album" by Joan Didion with my Lindsey, "supervised" doughnut-making and sampled same with my Sandra among others, and listened to Ryan Feng play classical piano. A new book fell into my lap today. Of course, I mean that figuratively. "Play It As It Lays" by Joan Didion was just laying on top of the informal Bailey Boushay House library cart, so I borrowed it. .Guess what we'll be reading? I feel very blessed!

Can't quite call it a fall, but I did a slow-mo sink to the ground while loading up my bookshelf. Tried to recover and ended up flat on my back in front of the entry door. Talked to the cat until my husband tried to walk back into the house. (Oh, the comedic giggles we get to have today!) Once upon a time I would have railed in anger or cried in self pity.  Today, it was total acceptance.  Well, what else could I do?  On my knees next to my walker, I attempted to crawl back up.  No dice!  I pushed it away and went to hands and knees to discover the arms without strength and I did another slo-mo as my face touched the tile entryway.  Well, this is new, I thought.  Uncomfortable facedown on the cold tile, I worked my way onto my back.  The cat was delighted!  Her little face loomed over mine and her whiskers tickled my face. "Well, it's you and me, Grace, and I sure wish you could open the door or call somebody."  She couldn't.  S...

Last night my husband and I went out on a spontaneous "date".  Following a visit to the car repair shop, we found ourselves near the movie theater and popped in to see the movie, "Jack Reacher" with Tom Cruise.  This is a real deal as these days we are much less spontaneous due to...well, you'll see.  We knew we were in new territory as this was our first visit to a theater since the ALS diagnosis.  (I use a cane to walk and cannot use the restroom on my own.)  No problem, right? Attitude adjustment for certain.  First thing in the door we are gloriously assailed with the waft of hot popcorn...Yum!  But off limits to me with my present swallowing issues.  (The kernels collect at the back of my throat until I inhale them involuntarily and choke...Yikes!)  We bypass the snack bar altogether to avoid temptation (and to conserve money). Next, I look for a "family restroom" and find none.  Yikes again. We've already spent our money and ...