Tuesday, November 29, 2011

Windmills of my Mind.....

Sadly, it has been over two months since my last post. In that time my mind has stumbled and tripped over at least a hundred different subjects, thoughts, or sentences that I imagined would be good blog material. Obviously none developed into a blog post. Such is my state of mind.

For the longest time after my diagnosis I clung to a raft of denial. While the ravages of this disease (syndrome, malady, etc....) are more akin to a large, slow-moving river than a rushing torrent, it is, nevertheless, slowly eroding away the banks on which my facilities reside. It was foolish of me to deny that the erosion of my motor functions, speech deterioration, and social withdrawal would inevitably lead to my diminished ability to think........even to feel.

The ironic reality of the degeneration of my brain's ability to generate the signals necessary to produce the coordinated movements necessary to tie a shoe is that it also saps my mind's abilities to create a story in which there is a beginning, a middle, and an end. I can seemingly exist in real time. That is, I am conscious of things around me and am self aware. I can also carry on a conversation about things in the now. I can even plan to do things in the near term, like pick up a few things at the store. The future beyond a few months is shrouded in fog.

One of the grandiose things I planned to accomplish after I quit working was to finish editing and cataloging the many many hours of family video tape I had taken over the last 24 years. I, over the course of two years, transfered ALL the VHS tapes to over one hundred DVDs. I then copied all of the DVDs to my hard drive. I bought video editing software and taught myself to use it. I then wrote a spreadsheet to allow me to catologue and sort the videos by subject, date, location, or by person. The spreadsheet even included "hyperlinked" shortcuts to each video. It is a work of art.

I began editing the videos and filling in the spreadsheet about five months ago. My first video camera was purchased in late 1987. I am now just finishing with the videos from Christmas, 1988. My fear now is that I'll never finish.

The act of watching a video version of a moment from a past life, choosing what moments to cut out to produce a more meaningful video, and then cataloguing the contents in a logical coherent manner has become the windmill to my Don Quixote.

Tuesday, September 20, 2011


After watching a self-help guru speak about one of the ways to reach inner peace, I decided to take his advice.

He spoke of how seldom we allow ourselves to "listen to the silence." He recommended that I find a place where there was no mechanical noise. No TVs, no ticking clocks, no whirring computers. This was harder than it sounded.

I succeeded only by unplugging a DVR and taking a clock to another room. Finally I was ready to "tune in to nature." I closed my eyes and sat in silence......ready for the epiphany. What would nature say to me? Would the song of a bird ring clearer than ever before or would the sound of the wind rustling the fall leaves become her whispering voice.

Time passed, then, in an instant, the answer came! Nature had spoken. She said, "look within" through possibly the loudest stomach growl I had ever heard. My own body was making fun of me and I found it hilarious. The stomach rumble was followed by the sound of my own laughter. I could not remember when I had last heard it. It was good to hear.

I guess the guru was right, but, I think he had something else in mind.


Friday, September 9, 2011

There are NO Twin Peaks.....

I sat down at my desk to consider a blog post and spied this doe grazing about 60 meters away.

There are days now when the body I am trapped in seems foreign to me. 

It seems impossible that this is the same body that pedaled me cheerfully, just a few short years ago, over 103 miles (165.7 K) through the rolling hills of West Tennessee .  It was a beautiful autumn Sunday, with temperatures in mid sixties (F) and very little wind.  I was one of nearly one hundred cyclists that rolled out from our Beale Street starting point.  For most of us it was our first attempt at a "Century" (100 miles in one day).  Most of the group wouldn't complete the circuit that rolled north of Memphis along and often within sight of the Mississippi River and back.  I did finish the ride though admittedly I complained a tad when my bike's computer/odometer rolled to 100.0 miles and I found myself still a few miles from the finish line back at Beale Street. 

My ride had required over six hours in the saddle and at an average speed over 16 mph, I had burned in excess of 3,800 calories.  While no Lance Armstrong, I was happy.  Hell I was ecstatic!  If you love to exercise and know what I mean by "Endorphin Rush" then you can imagine how I felt after 6 hours of steady pumping and the free beer provided by this ride sponsors.  I was, unknowingly, at my peak.

It is funny, in a sick way, how the peak of your life can slip by unnoticed.  Life doesn't give you a reminder that you had better pay attention because how you feel right now, this very instant, is the best you'll ever feel for the remainder of your life.

Friday, August 26, 2011

Taped-up Shoes....

Not too awfully long ago, an old friend of mine stumbled across this photo in her high school yearbook. That's me in the Chino track jersey leading in the two-mile run against her school.

Note the taped-up track shoes. We didn't have much money back then, but it never kept me from winning races. I won a lot of them too. Not because I enjoyed winning, but because I could NOT stand to lose. EVER!

That attitude served me well in most aspects of life but did not necessarily bring me joy. You see, winning was not joyful but a relief. A relief that I had not lost.

In my early professional life, managing a retail store, I competed vigorously to maintain top sales until I was promoted to General Manager. Then the competition became the goals and quotas I set.

I never understood how runners, salesmen, and managers could accept second place so easily. I could not grasp how week in and week out runners would line up, to run the race, with no hope of winning. I still don't get it.

Now, as my body fails me, the victories are few and far between. I feel no joy when "winning" means I was able to carry a sack of groceries from the car and navigate opening the door to the kitchen. There is no joy in that. There is only relief. Relief because soon, very soon, I am going drop that sack of groceries and I will lose.

I will NEVER be the runner with no hope of winning. I will hang up my taped-up shoes and die.

Tuesday, July 26, 2011

I AM Still Here.....

The hours seem to slide by with syrupy slowness but the weeks seem to click by with each swing of the clock's pendulum. I know that seems to make no sense to most, but in my present state of mind (and health) it is reality.

I wrote that sentence over two weeks ago. It was the beginning of three days of work that I (or Google) failed to save. I was so frustrated with the loss that I haven't been back. I'll try to post soon!


Thunderstorms were booming in the distance one afternoon as I sat at my desk (NOT posting on my blog) when I saw this doe step out of the woods and look my way. I snapped this photo through the window.


Everyone knows when they were born. Only a very few us are lucky enough to find out why.


Saturday, June 18, 2011

Truthfully speaking.....

Another page has turned. I quit my job. At least I quit going to my office. I refuse to accept the near certainty that I'll never be of real value to the company I was so instrumental in building, but, ironically, I paved the road that I used to walk away. It was the right thing to do and the right time to do it.

I am still capable of analytical thought and even complicated problem solving. The problem arises when I try to convey the thoughts and solutions into spoken words. A year ago I wrote of the deterioration of my speaking skills. I have never put a lot of thought into the titles of my post and it was no exception when I named that post "Speaking the Truth." Now as I sit and try to describe the characteristics of my failing speech skills, I find it humorously ironic that the most fitting word that I can muster is LIAR. My speech pattern no longer exudes the confidence of a truthful person. It has the starts and stops of someone trying to make it up as they go. The subtle clue that gives the listener that the speaker is lying.

I recall a moment in my childhood when my Dad asked me if I had broken a tool that we were forbidden to touch. I was totally innocent (in this case) but when I opened my mouth to claim no knowledge of the event, I stumbled on my words. I remember instantly knowing that I had sealed my fate with a simple slip of the tongue. From that early experience I learned that whether you speak the truth or not, you'd better do it with an air of confidence and without hesitation.

I can no longer carry it off. I know it. I've become that guy that seldom initiates a conversation and when I do, I mentally rehearse the words before speaking. Even then I often trip over the words. Truthfully speaking.......


I hope to post more often over the next few months and have set up a workstation in one of our empty nest bedrooms. The phone shot below gives you a look at where I will spend most of my remaining days. Quite peaceful, I think.


Monday, May 30, 2011

Enough said....

I am nothing special, of this I am sure. I am a common man with common thoughts and I've led a common life. There are no monuments dedicated to me and my name will soon be forgotten, but I've loved another with all my heart and soul, and to me, this has always been enough.


Thursday, May 26, 2011

I'm tired.......

I'm tired of:
  • Saying, "It is what it is."
  • Keeping a stiff upper lip.
  • Being brave.
  • Carrying the load.
  • Wearing the armor.
  • Faking it.
  • Hiding the pain.
  • Walking funny.
  • Seeing the look on friends' faces.
  • Asking for help.
  • Feeling frail.
  • Not being able to smell the honeysuckle.
  • Being afraid.
  • Not knowing when.
  • Moving slowly.
  • Avoiding people.
  • Being such a wimp and blogging about it.

Saturday, May 21, 2011

Gross Miscalculation.......

Every month for the last ten plus years I have held a meeting with my Store Managers and key people to review sales, introduce new people and products, and make any important announcements. These meetings, though only a couple of hours long, required tons of preparation and an energetic presentation on my part. For the last year, as my symptoms became more difficult to manage, I grew to dread the event.

It is difficult to mask dread and be a motivational speaker.

In preparing my Power Point slides for our May meeting I inserted this image at the end of my presentation with the intent of announcing that this was to be MY last meeting. As I rehearsed my thoughtful, inspirational, motivatingly instructional (in my mind) spiel, I would inevitably reach the final "That's all Folks" slide and my emotions would begin to swell at the thought that such a meaningful part of my life was about to end.

Many (most) men define themselves by what they do for a living. Indeed, historically, even our surnames were derived from our jobs: Shoemaker, Carpenter, even Smith (skilled-worker). Choosing to quit work under ANY circumstance would have been difficult for me. Now it is nearly intolerable.

I finally decided that I would only use the slide and make the announcement if I felt I was in a state of mind where I could say the words with strength, enthusiasm, and with a smile on my face. I made a gross miscalculation!

The meeting went well. I was prepared and had the self confidence that comes only from experience. As I finished the final topic I took measure of my self-control and made the decision to say the words out loud. The slide flashed onto the screen and I said, "This will be the last meeting that I'll attend." I continued as if my voice was coming from a place in me that could not feel. I explained that I had other things in my life that I needed to accomplish in the time I had left and closed with a "That's all Folks."

For a brief moment I thought I'd made it through the ordeal unscathed. I had never considered the impact my words would have on the men in the room. Some were more than co-workers. Some were friends. Some I had mentored, others I had coached through difficult times in their lives . One was my son.

One by one they came to me with hugs, handshakes, and halting words that I cannot recall. The floodgates opened. I turned and faced the wall lest they see their leader crumble.


Thursday, April 14, 2011

The Road to Linear Distraction..............

It has been a tough couple of weeks since my last post. The physical challenges of daily activities are beginning to wear thin the veneer of courage that I once thought I'd wear to my grave. One day last week, while trying to get out of bed for work, the well of emotion that lay buried beneath months of conscious suppression burst forth in violent sobs of self-pity and fear. I had not allowed my self to go to those depths of despair. For a time I was sure that I had waited too long in preparing for my personal "end times."

I called work to let them know that I would work from home and the only voice that I could muster was weak, timid, breathless, and shaking.

I climbed back in bed and began to rebuild the walls behind which I would place the fear, the doubts, and the debilitating self pity. Once broken, the walls don't seem as strong as they once were. Or perhaps, the things they hold back are growing in strength.


Just as my "unrehearsed movements" have become nearly impossible with my right hand/arm, my speech has lost its natural fluidity and color. I recently saw a video of a TV commercial I had done a number of years ago. The stark difference between the strength and confidence that I heard in that video and the shallow, meek voice I hear now tells volumes about what is going on inside me.


I have something weird going on. Random memories appear suddenly. Not a meaningful memory brought forward by a smell or a song, but a random snippet of a meaningless but remembered moment in time. At first a curiosity, now I fear it may be a symptom.

I still seem have all my faculties but linear thought can be difficult when a sudden image of a distant moment in time leaps to the front. The image doesn't leave as quickly as it appears primarily because I'm then curious why I even have a recollection of a trivial event 30 years earlier. The end result is distraction.


Wednesday, March 30, 2011

Don't get me started......

We had a really nice trip to Phoenix and beautiful drive to San Diego where we spent some quality time with my brother and sister and their families. Some of them I'll probably never see again. At least not on this plane of existence.

The trip exposed some of my worsening frailties. It was the first time I felt dependent on my wife (Superwoman) for so many common tasks. She is great at anticipating my needs and I REALLY hate asking for help with personal issues and would rather struggle through something like trimming my toenails than be exposed to the humiliation. We have many bridges to cross.

While I continue to work, I have set dates for retirement. My job performance is suffering and while I only know how to do things the right way, it is hard to be highly motivated. That's tough when, as the General Manager, I am the primary motivator to 130+ employees.

Social Security will not allow anyone to apply for disability until after the last day of work. It makes sense on some levels but ironically, I would probably try to work longer if I could set a date and get approved in anticipation of the inevitable.


I was listening to a radio discussion about a bill to abolish the death penalty in Connecticut. I found it ironic that states spend millions of dollars in court to defend state sponsored capital punishment yet outlaw voluntary euthanasia. Don't get me started.


Thursday, March 10, 2011

The Good Ol' Days....

A few of my readers are either CBGD patients (I'm told "victims" is not politically correct) or caregivers. While my blog posts may give you an idea of my state of mind, I think it important to occasionally convey my physical condition. That being said, prepare to be bored.

I posted a Symptom Time-line back in November, 2008. At that time, the symptoms that concerned me most were the loss of fine motor skills (particularly the ability to write) and minor hand and leg tremors. Boy, those were the days!

Since then I have progressively lost strength and coordination in my right hand and arm. So much so that performing any task requiring two hands is difficult and frustrating. Frustration and stress exacerbates my most painful symptom, the near constant tension in my upper right leg. Specifically my hamstring, quadriceps, and gluteus (butt cheek). In normal use these muscles either flex or relax to perform tasks. Mine are in a near constant state of war with each other. Only sleep or a conscious command to relax bring a bit of relief.

Even when I can momentarily get the muscles to relax, they feel as they do after a terrible cramp. Then, as soon as I return my thoughts to life the battle begins anew.

As a natural right-hander, I find using my left hand for some tasks difficult. It is like trying cut your own hair while looking in a mirror.

As my condition worsens my movements have become slow and halting requiring deliberate thought.

Eating with a fork is challenging and humiliating and as I struggle to balance the food on a trembling fork, slowing inching it to my open mouth, the war in my leg ratchets up. I still enjoy good food, I just don't enjoy the act of trying to get it to my mouth. The good news is that I'm dropping some pounds.

While I have yet to have a doctor confirm it, I perceive a jerkiness in my eye movement. It isn't a huge thing now but makes me feel vulnerable when driving in traffic, eyes darting from mirrors to roadway. Yes, I'm still driving, but plan to quit BEFORE the big accident. :)

All in all I try to keep up a brave front. Even though I know that I will eventually look back on these as the Good Ol' Days.

Friday, March 4, 2011

I'm STILL here.......

It finally dawned on my over-worked (lazy) brain (ass) that it was rather thoughtless of me to post about suicide and then quit posting for a few weeks. Sorry! I'm still here. Er, I'm not sorry I'm still kickin'. I am sorry if any of my (two) readers started their mourning too soon.

Actually, though physically I am a wreck, I have something to look forward to. Superwoman and I are flying out to San Diego for a few days of rest.

I promise to post before we leave in mid-March.

Thursday, February 3, 2011


Our youngest son recently spread his proverbial wings and flew the nest. This resulted in me having to keep one of the "not-until-the-kids-move-out" promises. This one involved carpeting several fully furnished rooms.

We built this house twenty years ago on a few acres of old family property. It was dream of mine to give the children something I never had. Roots. A home they could always return to. Growing up in a military family did not allow me the luxury of a geographic point of reference that I could call home. My kids have that. I wonder if it means as much to them as I imagined it would have meant to me.

But I am off point. That happens a lot to me these days.

The carpet men moved furniture from the fully furnished rooms into other fully furnished rooms. The ability to move about the house became even more challenging than normal (for me). It was frustrating to be so limited and the obstacle course magnified my inability to move fluidly. So I spent the day holed-up in my office.

I almost missed rediscovering a moment from twenty years earlier. While the house was being built, before the original carpet had been installed, I visited to check on the builder's progress. It was a gray December day, chilly but not cold. As I wandered through the lifeless structure a warmness rose in my body. I was a starving plant whose shriveled roots had finally grown deep enough to reach water. I flushed with life knowing my home was to be real.

Alone, I stooped, and just outside the master bedroom, I scratched the shape of a heart into the new concrete. "Bob loves Gale," I scrawled inside the heart.

I had long since forgotten the act but when I looked down and saw the heart, I was again warmed to my soul. The house we had built had become the home I never had and my roots were still pulling nourishment from the spring that was our love for each other.


Thursday, January 20, 2011

Another Milestone.....

"The suicide clause is designed to prevent people who are contemplating taking their own lives from obtaining life insurance. To accomplish this, the clause states that if the insured commits suicide within a specified period of time, the policy will automatically be voided. Once the mandated period of time has elapsed, the insurance company must pay the claim even if the insured commits suicide."

Today is the day! The two year suicide exemption date has passed on a life insurance policy I bought shortly after I was diagnosed with CBGD.

I am not checking out soon but knowing I can (financially) is a great burden lifted.

The thought(s) of my family being burdened with the weight of my care is more than I can handle. Hopefully, I will have the will, the courage, and the resources to spare them.

Selfishly perhaps, I also would like to end life with a smile on my face and a sliver of dignity left.

The real trick is going to be having the wisdom to see when the time is right. I have more to accomplish!