Late night rant

I have a lot to be grateful for, more than anyone I know. I truly believe that it took ALS to open my eyes and take a gander outside my own little world, where so much was taken for granted. I received over150 birthday cards this year, including dozens from kids who were asked to write to me even though we had never met. Their artwork and messages made me,~(let me ) bawl my eyes out. In fact, almost everything elicits a wet emotional response. It's a crying shame (literally). I'll get back to you tomorrow.

Eyes on my birthday

Today is my 55th birthday and I am spending it in San Antonio. We drove into town yesterday afternoon and checked into the Sheraton on Houston Ave. We were lucky enough to have landed one of possibly two rooms with a curbless, roll in shower. We are THRILLED at our good fortune, considering that the alternative would have consisted of scrub brushes attacking me from the toilet. Nowhere to run. No WAY to run!!! I'll continue this post after I finish lunch : jumbo shrimp cocktail adorned with avacado strips, lemons, lettuce and celery, Wasabi encrusted Ahi tuna, (sashimi grade) with Chinese vegetables, all bedded upon steamed white rice. I love room service and Amy.

Morning brief

Today is marked by the excitement of a three day trip to San Antonio for my birthday.I hope to post during the trip.

Eyegaze is now the default post vehicle

If this post actually posts i will be surprised since i have the uncanny ability to discover new ways to lose my way lately. This IS an experiment. I will be back today.

Eyegaze post of today

Inescapable is the fact that my impatience and frustration has impeded my progression not only with the Tobii, but in all facets of my new life, that of an ALS sufferer. I want to be cured now. Not tomorrow, not some day, not by the will of God, (he's had plenty of time to analyze my worthiness). By and large, I've fared better with less medication than typical, discovering as much about the practice of western medicine as I have about myself. Odds are, at this time, now, I would be wise to consider pills to be comfort food, laced with side effects minor in nature yet annoying at best, resting upon me the responsibility of not only identifying the power within me, but to communicate to myself that I have the ability to improve my conditions, both physical and not. I will not deny that somehow, some way, my Clonis has all but disappeared, my spasms have become controllable, and my anxiety-infused depressionary periods have been regressing/shortening, all due to some yet-to-be understood change in my mind's eye. Could it be a third eye??

Eyegaze post number two: fixation development

The tobii has gone from a really cool gadget to an inadequate nightmare to a really cool gadget to an adequate nightmare in a matter of a few hours. I just finished a lengthy post only to  delete the entire entry with one mistake lasting one third of a second. This particular format doesn't allow me to save, so all is lost. Dinner time.

Eyegaze number one : little sis near Trivoli

 It is about time I dedicated a post to my most prolific and zany reader. Words alone cannot begin to describe her.  I'm going to make a feeble attempt, knowing full well my efforts will fall into the abyss of inadequate accolades. Just imagine Annie Oakley meets Laura Croft. The fact that we're not actually related is of no consequence.. She has become my soul sister through her many emails and letters, her cards and stories.  Those who know her can relate. Those who don't, well, so much a loss.  She is kook, and she is my kook and I love her for the brightness she brings to me every single day.

Help me help me

Imagine posting with your eyes while eating an egg sandwich. It is amazing how chewing screws up how your eyeballs track. 

Eyegaze post

THIS REALLY SUCKS IF I WAT ANTHING TO Contain 
CONTINUITY

As Time Passes

Most days my head is within 3 feet of a clock.  I do little.  I would have suspected that time would drag on but the truth is I am amazed how fast the hands move.  Amy is writing this so I do not guarantee any unedited content. ( HUH!!  Typist is offended!)  
My speech is so poor that 90% of the day I am unable to dictate.
The other 10% I can barely achieve vocal sobriety.  

Today we discussed Hospice care.  Their objective is to make me as comfortable as  possible during my decline.  About that- I still am.  I can no longer pluck on my IPad.  I really need to get on the Eye Gaze and resist my frustration at it's limitations.  I am more seriously considering a feeding tube.  

Amy and I are considering a trip by car to California this Spring.  Our primary objective is to visit a Master Zhou.   Amy will now explain why.
This Master of Qi Gong has been practicing with the world's most respected gifted healers and martial artists his whole life and is quite famous in his homeland of China for his accomplishments.  He has been the subject of many scientific studies that are astounding. He has the ability to produce heat from his hands  which he attributes to the control of his Chi- Universal Life Force.
Not that Ripley's Believe It Or Not or That's Incredible are scientific but you can find many a You Tube video highlighting his unique gifts there as well.
To experience ANY physical unexplainable reaction to me would give credence to those who assure us this healing energy field thing is real and can be manipulated to improve health.
I say Light me up and make me smell like BACON!!!!

Back to Tracy-
I don't know about all that stuff; at the very least the Master can cook me up and serve me to his family for at least a month.  As far as Chi goes I welcome a double dose (chi chi).  Preferably large in size as I always welcome boob therapy.  For those of you who are as uneducated as Amy, chi chi is boobs in Chinese.  Look it up!

My motivation for this trip is slightly different from Amy's.  I look forward to making this trip with her as one last excursion west.  We made the trip several times for several reasons.
My goal is to stop at every lookout point, roll out of the van and take in the view, whether it be mountains or trees or fresh air or sunshine.  A lot of stuff on me is dead, but my sense of adventure lives on!  I would also like to see the stars at night far from any city, so I will remind myself how insignificant I am.  I feel this will make it easier to accept my own limitations.  I hope Amy recognizes the significance of this.  I can hang on a long time knowing that I can not change the universe even as it changes me.

I was 53 years old when I was diagnosed with ALS.  I will soon be 55.  Each of these years have felt like a week.  I wonder how many weeks I have left.  I love my Amy.

Amy thinks I am having a down time.  I'm not.  Reality is, in the absence of a cure, I'm being given a pillow.  That pretty much says it all.  Comfort food for a dying man.

On the up side winter in Dallas ain't so bad and Netflix rocks.  My grandkids are wonderful and I can't imagine only getting to see them every few months or so. Every day never grows tiresome.

I apologize for the up and down of this post but the reality is my Fred Flintstone brakes are nearly worn out. My only options are to lift my feet or to crash.  I'm not sure if I have the balls to do either.
Hopefully I won't take so long to post, primarily because Amy is willing to suffer through typing for me.  Without her, you all would be without me.

You or me

It won't take you long to realize I'm not tracy. This is my attempt to blackmail Tracy into blogging again.  I will misquote, missspell, and generally embarrass and irritate him until he is forced to get involved.   At this moment he is ramming my chair! Ahhhaaaa...  My plan Is working!

Happy New Year

I don't need to look back a year to recall where I was. ICU at Methodist Hospital recovering from a heart attack brought on by several blood clots originating in my left leg and settling in both lungs. This year I avoided any calamity. Instead, I enjoyed my Netflix Christmas gift by watching Day of the Dolphin (1971?) and the Day of the Jackal (1973). The last few days I have watched classics such as The Deep (William Peter Blatty), and the obscure Sometimes a Great Notion (Ken Kesey).  

Christmas was great, mainly because all of my family was there and the grand-kids were insanely amusing. I always prided myself on choosing a great Christmas tree, but this year's 9 footer is the best of all. Sarah has taken the torch. 

As for me and my health, things are progressing little by little. My speech is mush. I have more trouble breathing than before. I have to be careful not to aspirate whenever I drink anything. My right hand, the one that has had limited mobility, is diminishing in usefulness. I am losing energy every day. We are still experimenting with the Deanna Protocol. I have yet to receive my breathing aid, at first thought to be a Bi-Pap but now I have been told the machine will be more sophisticated, providing additional options in case of breathing issues whether asleep or awake. Let it be clear that this is not a trachea device. I will never allow a mechanical device to take over what my body should do on its own. 

Tomorrow my mom and my sister are visiting and I'm looking forward to seeing them again. I hope they have a lot to say because my hearing functions much better than my speaking.  

A few weeks ago my brother, Mick, visited for a couple of days and I can't say how much it meant to me that he should take the time and the money to come by. The truth is, we can go for months or more without communicating and then get together as if no time has passed. I'm very proud of him and his accomplishments despite all the early in life obstacles he has endured. If he moves to Dallas in my lifetime, he and his family will make my day, week, month, year.

I know I need to work on my eyegaze, but the limits of technology make for a tedious transition. I thank Rachel for coming by today to extend my present form of communication.  I promise not to lapse as long between posts from here on out. Ta ta for now!

PS: Happy New Year!