CBGD

Conflicted or Confused......

2012-01-12T18:05:00.013-06:00

It has become difficult to write a blog post. Not that I have trouble thinking of subjects and God knows I have the time. It just always seems I am conflicted about how to begin and what to explore. It seems I am often "conflicted" about what to eat, then how many crackers with my soup. I'm "conflicted" about when to fill the bird feeders and what TV show to record. I am fearful that rather then conflicted, I am simply becoming confused.

I don't feel lost or disoriented and I wouldn't say that I'm befuddled but here's the rub. Can a person determine shades of red while wearing red-lensed glasses? Will I remain able to recognize and measure my own degenerating mental capacities? Maybe that is the punchline to God's cruel joke.
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Superwoman (my wife) scrapbooks (the verb). I mean with a capital S! She is so serious about it that I built shelves (before CBGD) to help her store and organize her tools and "embellishments."

Every meaningful photo of every birthday, recital, trip to the zoo or graduation has been pasted into its proper place and fittingly embellished.

Vacations have their very own scrapbooks.

When she told me the subject of her next project, I had to giggle. Then we shared a laugh when she said, "I'll have to hide this one from the kids." Before my readers jump to erroneous conclusions, the scrapbook will contain love letters, notes, and cards I've written to her over the last 25+ years. She saved them all. The little cards that come with flowers (there must be 100), notes left saying I had run to get milk, and even the occasional "I'm sorry, I was wrong" (there's more than one). There are the full-blown-my-life-has-changed-forever notes.

Maybe a "picture is worth a thousand words" but saving a note that says, "I'm at Tim's soccer game. Love, Bob" speaks volumes.

While Superwoman may have trouble verbally expressing her feelings, her actions are plain to read. She loves me and has for a long, long time!

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Windmills of my Mind.....

2011-11-29T12:50:00.005-06:00

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.

Listen.....

2011-09-20T12:44:00.001-05:00

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.

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There are NO Twin Peaks.....

2011-09-09T20:55:00.000-05:00

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.

Taped-up Shoes....

2011-08-26T17:14:00.003-05:00

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.

I AM Still Here.....

2011-07-26T14:24:00.008-05:00

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!

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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.

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

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Truthfully speaking.....

2011-06-18T10:57:00.006-05:00

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.......

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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.

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Enough said....

2011-05-30T18:45:00.002-05:00

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.

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I'm tired.......

2011-05-26T13:33:00.003-05:00

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.

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Gross Miscalculation.......

2011-05-21T11:15:00.005-05:00

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.

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

2011-04-14T17:14:00.003-05:00

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.

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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.

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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.

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

2011-03-30T12:56:00.004-05:00

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.

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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.

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The Good Ol' Days....

2011-03-10T12:57:00.005-06:00

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.

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

2011-03-04T18:03:00.004-06:00

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.

Roots......

2011-02-03T13:03:00.008-06:00

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.

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Another Milestone.....

2011-01-20T11:28:00.003-06:00

"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!

No more close shaves......

2010-12-23T14:48:00.004-06:00

Growing facial hair is not my biggest strength nor has it ever been a goal of mine. In my late teens I unsuccessfully made an attempt at a mustache and drew the conclusion that I was too far up the evolutionary ladder to pull off the lumberjack look.

The week of Thanksgiving, as a result of a patchy, tremor-filled morning shave, I threw away the razor. I announced to Superwoman, "That's it, no more shaving." Though her tone of voice said otherwise, she dutifully replied, "That's fine."

You should see me now. "Scruffy" is a kind term to describe my current appearance. Catching a glance of myself when passing a mirror causes me to pause and giggle a bit. Not so much because I look funny *snicker* but because I've reached a place where I can accept the change without remorse. Indeed, I take some pleasure that I have accepted the fact that shaving is something that caused me great discomfort, so I removed the irritant and have not lamented the consequences.

As I lose physical capabilities, I don't bemoan the loss, I mourn the consequences. I don't miss the movement of my fingers, I miss being able to draw a heart on my wife's Christmas card. I don't miss the strength of my grip, I miss the firm handshake from a friend. I don't miss smooth arm movements, I miss the giggles of wonderment from children as I juggled their Easter eggs. I don't miss the steady walking gait, I miss the walk. Ad infinitum.

Merely being "scruffy" is an acceptable consequence to the loss.

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Merry Christmas to you all!

Split-brain Consequences......

2010-12-09T13:54:00.004-06:00

When I was taking my second year of Psychology the professor ran a film on split-brain surgery. I found it fascinating that the two hemispheres of the brain perform different tasks and when the communication between the two are interrupted, weird things happen.

For example, after the surgery, the patient could be shown a fork while the left eye is covered and the patient knew it was a fork. He could pick another fork amongst other objects but could not tell the doctor it was a fork. When the right eye was covered the patient could not identify the shape. Only when both eyes were used could the patient identify AND verbalize the object.

When my symptoms first manifested, it was the pinkie and ring finger on my right hand. Over the next two years, slowly, like sand leaking from the hole in a cloth sack, my right side has lost its muscular strength and coordination.

Now it feels as if the right half of my body is a different person. The rare times I study my face in a mirror, I can see the sag of unstimulated muscle. Even my smile has become a crooked mask of what it once was.

I can only imagine as my left brain hemisphere continues to degrade what effects may appear. Perhaps I'll know the fork but be unable to say so.

I dread hurting the fork's feelings.

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I know I haven't been posting photos in my blogs lately, and it isn't just that I am taking fewer photos. It just seems that the world is less photogenic.

Social Withdrawal.............

2010-11-20T12:41:00.003-06:00

As the holidays approach, a sense of dread has settled into my psyche.

Historically, Thanksgiving Day has been my favorite holiday. It came with no baggage. No obligatory gifts, no religious dictates, no fireworks, and no memorials. It was a day to count my blessings. A day to focus on the good in my life, eat lots of comfort food, and spend the afternoon with family. It was a day to be thankful for.

One of the symptoms of CBGD is "social withdrawal." To analyze the reasoning behind the symptom is difficult because there is always the possibility that any psychological symptom may be caused by the, very real, degeneration of my brain. I think not.

Having led a life rooted in athleticism, I find my seemingly sudden frailty to be humiliating.

Eating is a particularly embarrassing thing to have to do in front of people. While eating should be a mindless task, it has become a slow, laborious endeavour that becomes more difficult if I believe I am being watched.

Last year's Thanksgiving was eventful in that I passed the carving-of-the-turkey on to my son. I fear that another year from now might mean someone feeding me at the head of the table. I don't think I can do that.

So you see, "social withdrawal" has its roots in the loss of dignity that permeates this disease.

Too much pride may not be a good thing, but its loss is deadly.

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Hereafter.......

2010-11-01T13:43:00.003-05:00

My younger brother was in town from San Diego last week and on a cool drizzly day we decided to take in an afternoon movie. I checked the local multi-plex and picked the movie, "Hereafter." I assumed with the names Matt Damon, Clint Eastwood, and Steven Spielberg associated with a movie that had a considerable amount of action in the preview trailer, I was safe. I was wrong!

You see, I've reached a point where crying about MY condition has been locked in a box and shoved to the back of my closet. Way back! I fear I also locked away a bit of my sense of humor, my ability to appreciate simple wonders, and a bunch of my creativity. However, when presented with a situation that others might find sad, I might find deeply despairing. Debilitatingly so.

Considering my weakened ability to discern sad fiction from mournful reality, and the fact that I am in the throes of an "illness" that will kill me, why the hell would I pick a movie called "Hereafter." Believe it or not I find that morbidly hilarious!

The movie dealt with the existence of an afterlife and loved ones who have "passed on" watching over us. Luckily I had buttered popcorn necessitating extra napkins. I'm not sure if it was as much of a tear-jerker to my brother because the "man pact" requires that we not discuss such things.

It is tough to hide despair and still show joy.

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Hotel California.....

2010-10-16T15:47:00.007-05:00

This stuff is really kickin' my butt!

Even in my dreams I'm limited physically now.

My walking gate mimics Kevin Spacey in the "Usual Suspects." Only he's faking it.

My movements, especially eating, have become slow and hesitant. The medical term is "Bradykinesia." I call it humiliating.

My mother-in-law recently had a stroke from which she has been slow to recover. Her condition has required her to be admitted to a long-term rehabilitation center. She has a roommate that is in the later stages of Parkinson's Disease. My CBGD will follow a similar path and it is overwhelming for me to visit and confront, face to face, my future in such a place.

If I wasn't needed and still able to be productive, I would, no doubt, check out of this decaying hotel and move on.

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I took this photo on a recent vacation Superwoman and I
took to San Francisco.
It was nice.

Living Organisms....

2010-09-10T11:20:00.004-05:00

I'm having a good deal of difficulty maintaining organized thought long enough to get a decent blog post together. Here is one I started recently then got distracted:

Our bodies are made up of millions of diverse living cells, each a single living thing in its own right needing food, shelter, and a place to leave its waste. The waste of one cell may be another cell's fillet mignon. Together, when they are all living their lives properly, they combine to be you or me.
When cells, for whatever reason, quit pulling their load.

Families are living organisms. Symbiotic creatures that need each other to survive. When one (or more) of them quit living right, the unit suffers. Maybe dies.

By the time I returned to the text I had forgotten where I was headed. I'm afraid it is a symptom of CBGD. If I am going to continue this blog, you and I are going to have to accept that its deterioration is part of it. I am going to accept that disjointed drivel means something too.

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On a side note, my hummingbirds seem to be feverishly stocking up for their winter migration.

Song of My Heart.........

2010-08-18T11:06:00.003-05:00

There has been a lot going on in my (our) life. Superwoman took my "rocks in your backpack analogy" to heart and began lightening her load and stopped picking up other people's rocks. Then her Mother had a stroke, immediately dumping a boulder into her already-too-big pack.

I try to lighten her load when I get the opportunity and I have been guilty of hiding my own ills from her in an effort to not add to her burdens. She gets a tad angry when my omissions come to light, but I do it to protect her.

I posted a "Love Letter to Superwoman" last December and I haven't written any love letters since. We had our twenty-third anniversary on August 3rd and with all our turmoil we almost missed the date.

This week, while working on transferring all our old home videos over to digital format, I ran across this spontaneous clip of her singing in our living room. It reminded me of one of the reasons I fell for her.

I am a very lucky man!

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Eating Mt. Rushmore.......

2010-08-05T13:09:00.003-05:00

My first "real" job was at a restaurant in Upland, California, called Betsy Ross' Ice Cream and Cafe. It was a three store chain that made their own ice cream in the rear of the Pomona store. They made great ice cream, but the real draw was the patriotically themed ice cream sundaes named The George Washington, Martha Washington, Washington Monument, and the 32 scoop Mount Rushmore. I can't remember all the sundaes......only my favorites.

I started out as a busboy, but moved up rapidly past dishwasher to the highly sought after position of fountain boy.

The restaurant was designed so that the ice cream was displayed at the entrance (ala Baskin Robbins) and the fountain boy was in full display in his white shirt, black pants, red paisley vest, and the, always stylish, red white and blue paper hat (Gandhi style). The job required showmanship, artistry, speed, and an incredibly strong wrist and forearm. I loved it! Especially Friday nights as the local high school football games ended and we were overrun with ice cream loving teenagers. Showtime! Tom Cruise had nothing on me (well, except for the looks and Nicole Kidman).

The 3 gallon ice cream containers were rotated from the zero degree freezer to a smaller freezer to allow it to soften some. Friday nights did not allow for this step, therefore, the ice cream was rock hard. My public, however, would not wait. The end result was the development of my right hand, wrist, and forearm. The job lasted through my freshmen year in college. My ice cream powered grip lasted until two years ago.

As I lost my fine motor skills in my right hand, I worried about losing my hand writing. I had not considered that this same loss of neurological connection in my brain would also cause my muscles to fail, causing a profound deterioration in strength.

I struggled to disconnect two garden hoses yesterday, eventually having to use a pair of pliers. Later, I couldn't open a bottled water.

It is as if there were 100 horses hooked to the wagon but only five of them are awake.

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The good news: I've never lost my taste for a good Martha Washington!

Iowa's Gift.............

2010-07-22T11:41:00.006-05:00

This past March I posted about Kel On Wheels, a fundraiser/bike ride in a little town in northeast Iowa. What I didn't post was my secret desire to show up at the ride and witness the efforts, firsthand, of friends and family members as they raised money to fund research on CBGD.

As the date approached for the July 17th event, I became more resolute that I was going to make the trip to Decorah, Iowa and go alone. Superwoman didn't much like the idea but she had another commitment.
I began to check maps, price flights, and even visit the little town via Google Street. I emailed Kel and Karla (fellow CBGD patient and his wife) to test the waters about whether I would be welcome and they responded with open arms. I booked flights to St. Paul, MN, rental car, and the best room the Super 8 Motel had to offer. My little adventure was taking shape.
I will not bore you with trip details (like the good fortune of sitting next to skinny people on over-booked flights) but I took my time and some of the little things were my favorites.

Iowa is known for its corn and coming from cotton country I know how pretty fields can be. But I was not prepared the hundreds of square miles of the greenest rolling hills I had ever seen. As the sun set, the fireflies twinkled from the tops of what seemed to be every corn stalk. I parked by the side of the road, stood outside my rental car, and marveled at a sight I had never imagined. Millions of them forming an earthbound universe of what appeared to be twinkling stars.

The following morning I drove to the park where the ride was to begin. I was nervous knowing I was going to meet so many new people. Then as my GPS directed me along the town's main street, things began to look familiar. I was looking at the shops I had visited (virtually) on Google Street. It gave me an odd sense of Deja Vu.

Seeing the cyclists preparing their bikes as I parked my car across from the small park, brought up all sorts of emotions. This was the first time I had been to an organized ride since being forced to quit riding. I was jealous.

I spotted Kel and Karla, recognizing them from photos posted on the ride's web site. I was greeted with enthusiasm and heartfelt friendliness. I self-consciously stumbled with my words but no one cared. I was standing in the middle of a group of people that radiated love for each other. It was a joy to witness.

While I had not planned to photograph a lot, I didn't see anyone really working at recording the riders, so I picked a spot out on the course and began snapping shots. I took over 130 photos of almost always smiling riders.

There were festivities in the afternoon and evening that I was honored to attend, but finally my body reminded me of my limitations and I unceremoniously (though emotionally) slipped away and retired.

Back when I was cycling long miles alone, I wore an identification tag that had my emergency phone numbers engraved on one side. On the other was a quote from Steve Prefontaine (Pre) that read, "To give anything less than your best, is to sacrifice the gift." I used that quote to inspire me on long hard rides. I thought the "gift" was my physical ability and to not work hard was wasting the gift. I was wrong.

Before I left for Iowa, since I was traveling alone, I slipped the ID chain around my neck in case of an emergency, the phone numbers would be there. I took it off only to shower. As fate would dictate, as I sat alone in that little hotel room in Iowa, a glint of light reflected off the ID tag. I picked it up and read the quote. "To give anything less than your best, is to sacrifice the gift." I pondered the gift that I had lost and realized that wasn't the only gift I had.

I had spent the day watching people give of their gift. In doing so, they opened my eyes. They changed me.

Thank you Iowa, for restoring my faith in the gift of love.

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Call Me Rock...

2010-07-10T11:52:00.004-05:00

Superwoman (my wife) has had a tough week. I won't share the details here, but the rocks in her backpack are weighing on her.

The "backpack" analogy was first told to me by a Viet Nam veterans' counselor. Everyone has their own backpack to carry around, all day, every day. In this backpack we place rocks (burdens). Sometimes we pickup a big, heavy rock, like the loss of a friend or loved one. Often we pickup small ones like the laundry cart that dings your new car. While the small ones don't weigh much individually, continually picking them up and tossing them in your pack will soon outweigh a boulder. Some of us carry rocks made of anticipated burden.

The trick is learning how to take rocks OUT of your backpack. Pick a rock....any rock. Say the one made of worrying about some future event that may not even happen. Envision reaching back and grabbing that rock. Feel its weight. Identify what it's made of, take a big wind-up, and throw it as far as you can. Then leave it where it lands. (I usually throw mine into deep water).

You'll never empty your backpack, but you can sure lighten the load. With practice you'll even quit picking up some rocks altogether.

Superwoman picks up every rock she can reach. She even picks up other people's rocks. Some people are willing "rock-givers" (co-workers, children) and she takes them too. While she is strong and can carry a big backpack, I worry about her.

I worry about the size of the rock that is made of ME. Ironically that is one of MY rocks.

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The Wall......

2010-07-03T11:22:00.006-05:00

Just a few short weeks before being diagnosed with CBGD, I was pedaling up "The Wall" on the second day of a two day, 150 mile bike ride. "The Wall" was an intimidating incline that rose first slowly then at a difficult angle above the expansive flatness of the Mississippi River delta region where the ride took place. It was the only real climb on the whole course and had garnered a reputation as a killer among many of the intermediate and beginning riders that were drawn to this annual charity ride.

By Colorado standards it really isn't much of a challenge but we are elevation-deprived in my neck of the woods so we call it "The Wall". Like everything else in life, it's all relative.

I liked The Wall. I trained for it, even trained ON it. I approached it like many other obstacles I've faced in life. I turned a difficulty into a strength.

To excel as a cross country runner in high school I identified the course on which most of our important races were run, a hilly course at Mount San Antonio College. About three quarters of the way through the course there was a series of switchbacks that were incredibly steep and literally heartbreaking. Many runners have been reduced to walkers on those switchbacks.

I would run workouts at MTSAC, not on the course, but just on the switchbacks. Over and over I would run them. One day I did it in army boots. I wanted to own those switchbacks and eventually I did. Come race day, when the lead group of runners melted on those switchbacks, I would say hello to my old friend and fly through the pack.

As I type these words, those experiences seem so long ago and the person with all that drive seems dead. It's so wrong on so many levels.

The Wall before me now I can not train to conquer.

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Lost My Flair......

2010-06-28T15:02:00.005-05:00

There are things that have slowly, at almost imperceptible speeds, left my life.

My handwriting was never flamboyant or even beautiful, but it was mine. There was a flair to my signature that tended to express my somewhat outgoing personality.

It seems that as my right side fine motor skills deteriorated, the first thing to go was the "flair." I believe my personality began to lose its flair too.

Now I cannot write. Rather I draw letters and it takes a concentrated effort to do that. It also takes a concentrated effort during social interactions to carry on a conversation. No longer able to casually emphasize words with body language is constricting and distracting.

I am certain people subconsciously pickup my stiff body language as me being disinterested in what they have to say. This leads to only superficial conversations.

That is the thing I have lost that I miss the most. Real in-depth conversation containing pats on the back, handshakes, a punch in the arm, a hug, or any physical contact.

I'm sure it's my fault. I've lost my flair.

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On a happier note:

As summer ends, I thought it appropriate to photograph some of the suns we've brought back from our many trips to Mexico that adorn the exterior walls that line our deck. Superwoman will be upset that I didn't wash them first.

Create your own video slideshow at animoto.com.

Batteries are low......

2010-06-24T15:48:00.003-05:00

I haven't added any posts to this blog for weeks now. Not a day goes by that I don't think of something I should write about but by the time I have time the inspiration has passed. In truth, that is basically my current situation in a nutshell.

Finding the motivation to accomplish tasks, even small ones, is becoming increasingly difficult. What's the point? Mind you, I don't have a problem doing things that benefit, or will benefit, others, but it just hard to justify self improvement.

I mean I still go to work daily and am still very productive, but I have no interest in attending a motivational seminar that will "insure years of personal gratification through improved people management skills." There was a time when I loved those things and always walked away with my batteries recharged. I haven't had my "batteries" boosted for a while now and frankly can't name a thing that I believe could do it.

Maybe drugs. As a child of the 60s and 70s that was always an option. It's been a long long time since I've had the "munchies." Too long!

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"Speaking" the Truth....

2010-06-03T15:02:00.003-05:00

I am afraid to speak the words. It's as if I avoid saying, "I'm losing my ability to verbalize my thoughts," then it won't be true. But it is.

For as long as I can remember I've been a bit talkative. Spoken language has been my friend, my shield, and my weapon. My verbal skills are the rocks I have built my career upon.

I was not always sure I would be able whip you in a fight but I was almost always sure I could convince you that fighting me was not a good idea.

Slowly, ever so slowly I am becoming aware of a slowing in my speech. As the tremble in my little finger has digressed to my inability to write, do does the tremble in my lips lead me to believe I will soon go silent.

The insidious nature of my malady is such that I never notice the day to day deterioration. Some days are better than others, but the day that was a bad day three months ago is now a good day.

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It's Lonely In Here.......

2010-05-19T11:26:00.002-05:00

As my CBGD progresses, my body feels more like a shell than part of me. A shell in which I am trapped. The part of me that is my conscious self seems to be shrinking inside it, like the Easter egg that was not found. Eventually the inside hardens until, when shaken, the egg just rattles with the death inside.

It is so, so lonely in here.

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Left-handed Compliment...

2010-05-08T16:19:00.003-05:00

As I continue to lose the use of my right hand I am forced to rely on my left hand to do tasks it has never learned to do.

I was making a purchase at a department store the other day and took my item to the cashier to check out. I dread these little encounters because they inevitably require two hands. I pulled out my wallet, that I keep in my left rear pants pocket, opened it, and with a bit of fumbling managed to remove my debit card. I looked down at the credit card swiper. The slot to insert the card was on the right side, requiring me to hold the card in my left hand in goose neck fashion to swipe my card.

I was successful on my third attempt prompting the cashier to say, "Oh, I'm left-handed too. It's good to be among right minded people," she giggled.

"I've only recently become left-handed. An illness," I said.

"Then you were meant to be left-handed all along," she ventured.

Maybe she was right.

Personally I think she sleeps in a pyramid with scented candles burning and whale sounds coming from her mood-a-rama.

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How Lucky Am I?

2010-05-06T15:51:00.003-05:00

A couple of days ago, just as I walked from my car to my backdoor, my Blackberry buzzed indicating an email. I petted the dog, wiped my shoes on the mat and entered the kitchen. Then I checked the email.

It was a notification that someone had posted an "anonymous" comment to one of my blog posts.

It read:

Thank you for your blog. Wish I had found it sooner. My wife has CBD. She is 36yrs old and we have a 4 yr old son. Although she had some symptoms for over 2 yrs she was just diagnosed last june. The disease has been very progressive and she now lies in a hospital bed unable to speak, walk, laugh, smile, or give us a kiss. Cant wait to bring her home but she continues with a fever.
I wish she would have had the strength to speak about her disease the way you are. It really depressed her and she wouldnt talk much about things we needed to discuss. Now i feel i should have pushed harder for her to speak to me about things because now its too late.
So thank you for sharing your experience with everyone and being so strong.

It truly took my breath away. While I am bitter to be struggling with this disease during what should be my professional peak, the timing could have been so much worse. My children are self-sufficient (usually) and I still have time to tie-up my loose ends.

This anonymous comment shook me from a place I should not visit very often. A lonely place where the only thing keeping me alive is a suicide clause on a life insurance policy.

Moods.....

2010-04-30T16:46:00.008-05:00

There was a time when I had no sympathy (tolerance) for people that used their "moods" to avoid things like work, confrontation, or me. We've all heard someone say, "Not now, I'm not in the mood."

I felt you should have control over something as emotionally based as moods. As I move along this road I am forced to travel, my perspective has changed.

My "moods" are taking on an increasingly physical nature. I'm not sure whether my bad days (physically) cause me to be depressed or the other way around. I just know they show up hand in hand, smiling with an evil grin, saying, "We are going to humble you today."

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Common Experience - Different Perspective....

2010-04-23T10:55:00.008-05:00

One of my nephews is in town for a visit and he showed some interest in visiting the National Civil Rights Museum located in Memphis, Tennessee. My day off is Tuesday and despite the fact that the museum is closed every Tuesday we decided to drive downtown and visit the site.

The museum is built using the actual front of the infamous Lorraine Motel where the assassination of Martin Luther King took place.
It was a beautiful day in Memphis and as we drove toward the location my nephew shared his views on the life of MLK. He is about 500 pages through the 700 page Pulitzer Prize winning biography "Bearing The Cross..." and is well spoken on the subject. He has visited MLK's church in Atlanta and childhood home. He found it fitting that as he neared the end of the book that he would stand so near to the spot where Martin's life ended as his martyrdom began.

We parked in the museum parking lot and walked to a spot just below the balcony where this famous black and white photo was taken. It was a somber experience. One that my nephew will always remember. I was glad to share the moment with him. Whenever he recalls the experience he'll think of me.

I walked alone up the hill next to the building from where the fatal shot was fired and snapped a few pictures.

One of the good consequences of my "situation" is that I've become more aware of memory building moments. Those little pieces of time when two people are sharing a common experience, but have profoundly different perspectives.

Like the time, as a lad of twelve, I helped my grandfather roof a tin storage shed. He probably would not recall even roofing the shed but I remember how he skillfully hammered the nails, how he carefully taught me how to safely handle the sheet metal, and how he smelled as we sat on the tailgate of his truck parked in the shade of a giant oak eating our well deserved lunch.

Trying to see the changes that are happening to me, both physically and emotionally, through the eyes of others is difficult. We are sharing a common experience but have profoundly different perspectives.

It sometimes helps to walk up the hill alone and look back.

Diet Aids & Baseball....

2010-04-19T17:06:00.006-05:00

It was a breezy sunny day when the six us arrived at Autozone Park to enjoy an afternoon of minor league baseball. The park is arguably the finest place to watch baseball below the major league level and I feel truly at home among the enthusiastic fans.

My company does significant business with Autozone and as G.M. they often perk me with some nice tickets and yesterday we sat first row, behind the home dugout, just down the third base line. Sweet!

I had a really nice time, despite the home team loss, and even felt healthy as the walk from parking was easier for me than my late-seventies year old parents. At least until about the sixth inning.

Needing a little bladder comfort therapy I rose to make a trip to the facilities and naturally asked if I could get anyone something from the concessions. Unfortunately orders were placed.

As I stood in line to place a small order for drinks and hot dogs I began to worry about being able to handle the money, pick-up the order, and put the desired condiments on the dogs. As I neared the front of the line my right leg began its customary nervous quiver. The quiver (tremor) is hardly visible but it is terribly disconcerting and makes it difficult to make quick decisions as a great deal of brain power is being used to keep the strongest muscles in my body from breaking into a one-legged Celtic jig.

Thinking ahead I paid with the biggest bill I had to avoid fumbling with money, placed my order (skipping myself because I, by now, had lost my appetite), and managed to precariously stack the two drinks and two hot dogs, carrying with my left hand and steadying with my now slightly trembling right. I made it to the nearby condiment table, unstacked, and added mustard and pickles to the dogs. Restacked the order and began my journey from the top steps all the way down to the front row (see video above).

Now despite your expectations that this all ended in disaster....it didn't. I delivered the goods and plopped satisfactorily into my seat. (albeit now hungry).

A day at the ballpark is great therapy and now, good for my waistline.

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NOTE: I am NOT bald and could never dance a jig like the fine gentlemen in the video.

Falling Trees, We Are......

2010-04-08T12:00:00.003-05:00

Based on scientific cosmological observations, the known Universe is estimated to be 13.75 billion years old (plus or minus .17 billion years). The Earth is only 4.54 billion years old and the Sun cranked up about 30 million years earlier.

It took 800 million years for the first living cells to form on the earth. There have been multi-celled creatures on the Earth for 1 billion years and simple animals for a brief 600 million years. Mammals have been shedding hair for 200 million years and birds have existed for 150 million years. Dinosaurs gave the planet up 65 million years ago.

Human ancestors (genus Homo) first appeared 2.5 million years ago and man as he appears today made his entrance 200,000 years ago. The Christian religion has existed for 1,977 years. I have been breathing for a minuscule 58 years.

How funny is it that we give such importance to our personal existence when in the relation to cosmological time our entire species has not existed but milliseconds?

Don't even get me to talking about space and our relative size.
Being a science nut for as long as I can remember, I have always struggled to find meaning in my existence knowing my time here is short. Truly, my existence would have been nothing without love, family, and friends. We don't exist except for the impact we have on other lives.

"If a tree falls in a forest and no one is around to hear it, does it make a sound?" The philosophical extrapolation of that question is "If a person lives and no one is impacted by his/her actions, did he/she ever exist?" I say no.

As I try to find peace in my short time left I am confident that I "existed." I loved a wonderful woman who gave me my son.
I became a "Dad" for two children who likely would have grown up without one.

I heard my father say, "I'm so proud of you" and my mother look at me as if I could part the sea.

There is so much more! I have lived! I am at peace.

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If there is a message in this post it would be to encourage you to tell the people who have impacted your life that they made a lot of noise when they fell in your forest.

Too Fast or Too Slow?

2010-04-03T16:03:00.004-05:00

Through my tears I sobbed, "It's happening so fast."

I had a particularly rough day Thursday. I knew from the moment I woke up that something was wrong. While I have days where my right side motor skills are troublesome, Thursday they were like my wiring was short circuited. I guess in a purely medical sense, it is.

I struggled to shower and dress for work, gimped my way to the car, and drove to work. My leg muscles tighten when I'm at rest and after my 30 minute commute I almost fell exiting the car.

I managed to put my ten hours in productively and drive home. Superwoman met me at the door and ask me how my day was. That opened the floodgates. I had spent the day steeling myself against the pain and swirling emotions, but now the dam broke.

"It's happening so fast," I said to her tearfully. I felt so guilty for letting her see me that way. Even though it has been a two year process it still seems like yesterday that I'd spend Sunday afternoon on a 60 mile bike ride.

It's happening so fast!

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Songs of Spring.....

2010-03-26T15:27:00.006-05:00

Spring is roaring into the mid-south (of the USA for my off-shore friends) with clear skies and warm temperatures. Daylight Savings Time now allows me to leave work before dark (7 PM) and the light lifts my spirits a bit.

Trees are blooming in my backyard. I remember planting them as saplings. It seems like last week. I also just noticed my sentences are getting shorter. What's up with that?

I bought myself a toy a while back that is great for bird "listening." I take a walk with my dog into my trails and sit on a bench that sits under a large pine tree and just listen. At first the birds are screaming alarms and threats as we enter their territory. Slowly, as I sit motionless, the clamor changes to the songs of spring. Mating calls and territorial announcements abound.

My listening device brings many unseen birds into view, at least in my mind's eye. Far off crows protesting an owl's presence, high-flying red-tailed hawks screeching to warn off potential interlopers, and mockingbirds reaching for every possible song never repeating a verse. It is peaceful.

I sometimes let my mind leak to thoughts of "the end ." I hope it comes on a spring day as I listen to birds.

Frozen Shoulder....

2010-03-20T12:36:00.006-05:00

When I had my last cycling crash, during a 150 mile Multiple Sclerosis fundraiser, I damaged my right shoulder and had a bunch of "road rash." That was September, 2007. A year later I was diagnosed with CBGD, right side specific. In the ensuing months my right hand and arm have become club-like and increasingly rigid. Normal for Corticobasal Ganglionic Degeneration.

A debilitating side-effect has been the development of a "frozen shoulder." It is a very painful syndrome and seems to be worsening as my right side becomes more rigid. I think my CBGD would be tolerable if this source of constant pain could be managed. I've had regular cortisone injections and they help for a week or two but the shots are painful in their own right.

My doctor has prescribed pain medicine but I've been avoiding them until I can no longer stand the pain. That time is near and I'm fearful of the line I'm about to cross.

Kel On Wheels....

2010-03-12T13:13:00.002-06:00

Through this blog I have found a support group of sorts, many of whom either have CBGD or know someone who has it. This illness (syndrome, disease, pain in the ass) does not limit its effects to the victim (patient, sufferer, babe in the woods). Many people are touched in many different ways and respond in equally different ways. Some go the route of denial. Choosing to ignore the progression of the handicaps. Others become worried caregivers. Trying to do too much at the expense of their own well-being. Then there people like the friends and relatives of Kel.

Kel's wife, Karla, stumbled upon my blog while looking for answers about the issues Kel and I share. She has been a regular reader and commenter and recently told me about a The Kel On Wheels benefit bike ride. Love of cycling is another thing Kel and I share and if I could I would be there on July 17. But alas, I can't, but some of you could. If you can't make the ride how about Sponsoring Karla.

This is a rare malady and therefore doesn't draw the big research dollars that are needed to help or even cure us. Every little bit helps. Thanks!

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Coming soon, Springtime! (version 2010)

I'm tired of saying goodbye.....

2010-03-04T18:13:00.011-06:00

Superwoman and I enjoyed our San Diego trip.....for the most part. She was held back a bit by my limitations and I was intermittently very happy and overwhelmingly melancholy.

I was born in San Diego and spent many very happy years there. I've traveled a bit and still believe it is one of the earth's beautiful cities. Chances are very large that I'll never see it again.

The primary purpose of the trip was to visit my sister and brother and their families but it morphed into me visiting some of my favorite places, evoking emotional upheavals, then trying to contain the waves of sadness knowing I would never lay eyes on them again.

The San Diego Zoo, where no matter how old you are you can always find a sense of wonder and amazement at nature's diversity. In a time gone by I'd walk the miles of trails until the Zoo closed and then sit outside the fences well past dark to listen to the howls and screeches that a typical Zoo visitor never experiences.

The Ocean Beach Pier that extends so far out into the ocean that the sound of the breaking surf is a distant whisper. Years ago I would use fishing as an excuse to escape to that place where salty tears mix easily with ocean spray. There was an understanding among the characters that fished the deep waters that we were all casting more than bait into the vastness. Vietnamese families fishing for food hoped that the place somehow offered security. Mexican men laughing away their burdens as they sipped warm beer from cups as there was no alcohol allowed. We would quietly stare into the water waiting for the tug of some creature. There would be bursts of energy when someone hooked a stray mackerel, attracting the stares of pier-walkers and the short-lived admiration of other fishermen. Then quiet would return, allowing waves of unwelcome introspection. Hours after sunset I would walk the long pier back to the beach. Each step bringing the sound of the breaking surf ever louder and reality ever closer.

There was always a lightening of burdens as if each cast of my line was throwing away unnecessary cares. In truth it was the time spent alone, in the salty air, allowing unbridled introspection. Staring not into the water but into my soul. I became a better man fishing that pier. Never would a visit to the OB Pier not leave me feeling lighter. Until this visit.

Sunset Cliffs has many of the same qualities as the Pier except the waves crash violently and loudly against the eroding sandstone rock. Each visit was different. The surf higher or the tide lower, the wind gently caressing or blowing hard enough to require a lean as I would near the cliff edge. There were no epiphanies in my relationship with Sunset Cliffs, only a profound appreciation for its beauty. That must be why I broke down and sobbed when it was time to leave.
I will never stand precariously at the edge of those crumbling cliffs, hear those sounds, or smell that air again. I'm weary of saying goodbye.

Eye for an Eye.....

2010-02-17T12:10:00.004-06:00

Recently, on top of my growing loss of right side motor skills, I have noticed blurred vision in my right eye. I have enjoyed near perfect eyesight until I hit 50 years old, then I began to require reading glasses. This new development is not a total surprise as most literature on CBGD includes references to vision problems. There are references to a bunch of other maladies too. I'm going to have so much fun (he says with his best tone of sarcasm)!

On a good note: I am taking a much needed vacation tomorrow. Superwoman and I are going to San Diego to visit my brother and sister and spend sometime exploring my old hometown. Sunshine and sea air is a great antidote.

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When I started this blog I envisioned writing a steady stream of prose about the physical and mental aspects of this rare "illness." Then, near the end, I imagined signing off with a moving tribute to those around me who gave me strength and then a hardy "Hi Oh Silver" as I road off into the sunset.

The truth is, as my corticalbasal brain regions, controlling motor functions, dies it is taking with it my initiative to do a lot of things. I've never been a lazy man. I wanted to be but couldn't find the time.

Last year I wrote about grief. In that post I said I couldn't seem to get to the "angry" phase. That is changing. I try to accept the cards that have been dealt me, but damn, what a crappy hand.

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PARDON MY RAMBLING BUT THAT SEEMS TO BE ALL I HAVE TODAY.

Line in the Sand.......

2010-02-01T12:41:00.003-06:00

I've started at least three separate posts over the last few weeks, only to become disgusted with myself for being so negative. I certainly have loads of good in my life and should count my blessings. Ironically my math skills seem to be slipping away, making counting more difficult.

We had a bit of an ice storm recently. I spun out my company Jeep and hit a freeway center barrier. I'm basically a one-armed driver now and don't know if that had any bearing on my ability to avoid the crash.

As my condition worsens I worry that perhaps I can't recognize the impact it is having on my behavior. When do I know it's time to quit driving, working, living. There is no line in the sand...... at least not one that I can see.

I miss me....

2010-01-15T14:18:00.003-06:00

I miss the person I was.

I think my wife misses him too.

It's too sad for words.

Emotional Birthdays.........

2010-01-13T17:21:00.007-06:00

THIS POST WAS WRITTEN IN MID-JANUARY. I'VE BEEN RELUCTANT TO POST IT BUT SEVERAL COMMENTS CONVINCED ME TO POST ALL MY THOUGHTS, GOOD AND BAD.

Monday was my birthday. Unlike last year, I was able to allow some semblance of celebration.

I was born the day before my father's 20th birthday. So as I was growing up we celebrated our birthdays together. One cake....loads of candles. It was gratifying to share cupcakes and pizza with my Dad again this year though it was packed with emotion.

My Dad is 78 years old, in poor health, and a career alcoholic. He was a great father. He was attentive, took the job seriously, and we never doubted that he would put his family ahead of all things. He made our childhoods fun and secure even as he worked multiple jobs to make that happen.

He was the first in his family to graduate from college at 38 years old, the same year he retired from a twenty year US Navy career. His work history in the newspaper business and as Sports Information Director for local universities coupled with his new degree segued nicely into a second career in professional baseball. He was set to have wonderful life in a job he loved. Life had other ideas.

At sixteen, as the oldest son, while my Dad was on a tour of duty in Viet Nam, I was forced to act as the man of the family. My youngest brother was born during my Dad's sea duty.

I left home at nineteen, when my brother was only three, and only returned for visits as he grew up. He took a different path than the rest of us and in many ways exiled himself from the loving support of an ever forgiving family.

He reentered my life when my mother had her stroke. It was if he had been training to fulfill the needs my parents now had that I could no longer provide. He was at a place in his life that allowed him to move in with them and care for them. He's been a lifesaver. Mine!

During the Father/Son birthday celebration my brother gave me a card. Some silly Peanuts card that my Mom probably picked out at Walgreen's, but in it he wrote, "I'm so sorry I missed the last twenty years with you. I hope to make up for it over the next twenty." I teared up as I read the words.

I can't tell him he waited too long, but I can tell anyone reading this. Don't wait!

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The Coconut Experiment.......

2009-12-31T12:27:00.009-06:00

It occurred to me today that it had been just over a year since my first post, "The Diagnosis."

I just finished reading it and it depressed me. Not because of the contents but because I remember my physical condition and the state of mind I was in at the time. It is disturbing to know how bad I've gotten in this past year and to know that this illness does not stop until I quit. There are no timeouts or vacations from it. It is relentless and insidious.

One of the Anonymous commenters on my blog challenged me to eat two Mounds Bars a day for two weeks with the implication being that the coconut would have beneficial affects to my "starving brain."

A year ago I dismissed the coconut oil fanatics on the assumption that if it worked my doctor would have prescribed it for me. Now I'm more desperate.....so I tried it.

Now let me paint you a picture. Every morning as I leave for work I grab a banana and a 12 ounce can of V8 that I consume on my 25 minute drive to work. Coffee is the first thing I do when I get to my desk (coffee CAN be a verb).

Now let's add 21 grams of sugar and 250 calories packed into a very tasty combination of dark chocolate and coconut. Can you say buzz! Then eat another one on your commute home. Can you say appetite killer!

About three days into the regimen I noticed that my mid section began to gurgle a bit. Two days later my stomach had developed a language of its own. Still I persevered because I said I would.

At the end of two weeks the results were in:

1. Tom Hanks was right about coconut being a natural laxative.
2. It will be two years before I eat another Mounds Bar. (On a side note, Superwoman put two Mounds in my Christmas stocking).
3. No noticeable improvement in motor skill function.

I can cross the Mounds/Coconut experiment off my list of things I have tried in moments of weakness.

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I still walk about my land, camera in hand. It has been wet though not too cold.
I cannot tolerate cold without my right arm shivering uncontrollably.

Leaves this year are gigantic. Either that or I'm just paying closer attention.

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Tied in Knots.......

2009-12-24T09:23:00.006-06:00

Last Sunday morning was the day Superwoman's church choir was scheduled to do their annual Christmas concert. She puts many hours of work into the rehearsals and as a (the) primary soprano she always has a key solo.

I don't attend church except for the times I am guaranteed to hear her sing. If and when God speaks to me, he sounds like her.

I had a tinge of dread about going this year. Too many buttons and too many people that know my secret. It may be my imagination but it seems that people that know of my illness look at me as if they are measuring the changes since they last laid eyes on me. It is a very uncomfortable feeling.

As I dressed, my tension built as I neared the moment of truth (the cuff buttons on my left shirt sleeve). I struggled to align the ivory button with the seemingly tiny hole. It was impossible and I decided to quit for a bit to calm my nerves and push away the demons of unwelcome introspection. I decided to tie my tie and return to the button in a bit.

I usually tie a Double Windsor knot and I proceeded to measure the ends as my brightly colored Christmas tie hung about my neck. I flipped the larger tie face around the narrower tail and looped it over and then froze. I began again, this time facing myself in the mirror. Again I flipped and looped and froze. I COULDN'T REMEMBER HOW TO TIE THE KNOT.

It seemed as if the images of how to perform the task existed in my brain but could not travel to my hands.

After several failed attempts I managed to complete a Half Windsor and quit. I then angrily managed to button my offending cuff.

I went to church and tearfully stood beside my Mother and sang perhaps our final Christmas carols together.

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I am concerned about the "tie incident." While I still seem to be able to recall and perform intellectual tasks, I seem to have trouble being creative. It as if there is a fog over my imagination. Even this blog post seems lacking.

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Superwoman's Christmas Table (taken with my Blackberry)

Merry Christmas

Love Letter to Superwoman.....

2009-12-10T14:26:00.003-06:00

There was a time, mostly early in our relationship, that I wrote love letters to her very often. Not always long ones but always heartfelt ones. Heartfelt because I REALLY loved her.

When I met her she was the single mother of a nine year old daughter and a four year old son. She worked full time, was active in church, and was doing a super job raising her kids. She was the strongest woman I'd ever met. She woke up everyday with a job to do and she only new one way to do the job. With perfection. When she gave me the opportunity to be part of her life I knew I'd be crazy not to bathe in those waters. She made me a better man.

Over twenty years has passed and I never stopped loving her, but I stopped writing her love letters. I don't know why. I guess I thought there wasn't anything more to say.

Don't get me wrong, we had rough patches where we both thought the marriage was over, but we persevered. Then we crossed some magic threshold. We knew we would grow old together and it was going to be a good trip.

It is not fair to her that now, in what should be the payoff time for a job well done, she is handed the burden of watching me shrivel up and die.

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Dearest Wife,

I love you! If I had my life with you to live over again, I would change very little. I would try to make better decisions at a few key spots and I would not stop writing you love letters. I was wrong, there is lots more to say. I hope I have the time to say it all.

Forever and Always, b

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Thanks Thanksgiving.........

2009-11-28T15:01:00.006-06:00

Thanksgiving Day was a couple of days ago. Superwoman worked her magic and we had fifteen family members over for a scrumptious feast. As most all southern American families do, everyone brought a dish or two to share. We had too much to eat and all slumped into chairs after the banquet and talked of things trivial and important.

Every year I stand in awe of the genius that marketed jello as a salad.

There were two highlights to the day for me.

1. I can no longer manage the task of carving the turkey and this year decided to teach my 21 year old son how to do the honors. He was intimidated as I was the first time I was confronted with a twenty-one pound turkey armed only with a carving knife and a Betty Crocker cookbook.
He had the advantage of my tutelage. It was probably harder on me than him as I pointed out the places to begin the cuts and joints that needed to be popped. I would give an instruction and then pretend to be busy elsewhere so he didn't have the old master looking over his shoulder. I could not have been prouder when we finished. The gauntlet has been passed....Long Live the (new) King.

2. The second highlight lasted 37 minutes 53 seconds. I had booted up my home PC with the hope that maybe, just maybe, I could reach my son, Tim, in Iraq. Sure enough, just minutes after all the guest had arrived, we got a text from his wife that his (very iffy but expensive) internet was working. I rushed to the office and seconds later from the middle of the Iraqi desert came the voice and smiling face of our soldier.

Everyone had a chance to speak with him and ask him if the Army fed them turkey and whether it was hot in the desert and other nervous talk. One by one they left our office until it was just the two of us. Me growing frail and unsure and, the little boy I had raised, looking healthy and confident. We had a couple of minutes of "man to man" and I told him I loved him and to be safe and we ended the call.

It truly was a Happy Thanksgiving in so many ways.

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Ceaseless Surf.........

2009-11-18T14:40:00.005-06:00

There was a time when I wondered what chronic pain felt like. I imagined that it was something you could simply tough out and get accustomed to. My years of long distance running and cycling taught me that as I trained through the pain of workouts I became better able to endure the pain.

This is different. My physical pain is ceaseless. It is worse at times and there are moments where it seems to slowly recede only to wash over me moments later.

If you've ever stood in the surf at the edge of the waterline of any ocean you'll know what I mean. The water runs away from your feet then gathers itself for another assault at the sand beneath your toes. Each unremitting surge weakening your stance as you sink into the sand.

My pain is the water. It is bearable yet indefatigable. As the sand washes away so does my resolve.

I believe I can endure the pain but I fear my determination is being swept away by the inexhaustible, ceaseless efforts of the gentle waves.

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Mirrors on My Mind....

2009-11-12T12:47:00.010-06:00

It has been over three weeks since my last post in which I visited the impact that my Mother's stroke had on my perspectives. Truly, my life has been altered.

She, after a ten day hospital stay and much physical therapy, has returned home. While she continues to improve she will never be the same.

The first night after her stroke I slept at the hospital on a small couch that was in her private room. We talked and though she had a slight slur it was apparent that her cognitive skills remained intact. We laughed as a nurse marveled at how much I resembled her. We cried as we discussed the future.

It is ironic that the symptoms she had has a result of the stroke are similar to what I will experience. Where she was struck down in minutes, mine will take years. But we are going in opposite directions.

It is her left side and my right side. It is already like looking in a mirror when I look into her eyes, now our body failures mirror each other. We see the humor in that. Cruel joke though.

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New perspectives........

2009-10-23T16:54:00.006-05:00

In a heartbeat, I've gone from patient to caregiver.

A few days ago, my 75 year old Mother had a stroke. Though she remains completely lucid and seems very aware of the bullet she dodged, her life is forever changed. So is mine.

While spending countless hours at our local hospital seeing that her needs are met, I found something. Meaning to my life.

Not that I have led a meaningless life, but since my diagnosis I have defined the meaning of my life in terms of how and when I was going to die. I focused on making sure my wife could live financially well. House and property paid for, dependable car, debt free. How shallow is that?!

In caring for my Mother I forgot about my illness. For the first time in nearly a year, it was gone. Meaningless! No matter what happened, I couldn't die now. She needs me.

Is it possible that my illness will give meaning to the lives of my loved ones? Can I deny them that?

Damn, this is complicated.

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It's Not My Arm, It's My Brain.....

2009-10-19T14:33:00.005-05:00

My symptoms first manifested, on a small scale, in March, 2007. In September of that year, during a charity 150 mile bike ride, I had a crash. I was in a long pace-line of cyclist when five of us went down. A rather large cyclist behind me ran over me as I skidded across the pavement at 18 mph.

After untangling, taking inventory, and checking my bike, I rode the final 54 miles. My shoulder was in great pain and after crossing the finish line I broke down, not from the pain, but from the mental effort.

The human mind is a powerful thing. I have been (or was) a distance runner since age 8 and have marveled at the my body's ability to run long distances. One second you're running as fast as you can and immediately after crossing the finish line, you can't even stand. It's all mental.

Back to the shoulder. The doctor diagnosed a severe separation and rotator tear. By coincidence it was my right shoulder and my CBGD symptoms are specific to my right side.

For the longest time I was able to hide my loss of fine motor skills and the increasing stiffness in my arm behind my shoulder injury. When buddies called for golf or bike rides, I could blame it on the shoulder. Not any more.

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I attended the funeral of a relative recently. As is often the case, I saw other relatives that I had not seen since the last time someone died. Several of them ask how my arm was doing. I typically just said, "As well as can be expected," not wishing to go into the details of my illness.

After the services, as the throng made their way out of the building, a cousin said, "I hope your arm gets better." Suddenly, a woman (with big hair) grabbed my arm and rather dramatically began to recite bible verses about God's healing power. I waited until she was finished before extracting my arm from her grasp.

Then I said, "It's not my arm, it's my brain." I left before she grabbed my head. :)

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I Can No Longer Live With Myself.......

2009-10-12T23:33:00.004-05:00

It is normal for most of us to imagine, expect, desire, or strive for a future better than our present. That presupposes a dissatisfaction with the present and disregards the fact that when the future arrives it becomes the present. Not the present that we were unhappy with but a new unrewarding present.

I find myself in a quandary. I can no longer aspire to a brighter future. My illness guarantees many unpleasant moments, and indeed, the reasonable expectation of a total loss of physical dignity. This dilemma forces me to try and find the path to happiness in the now. Not tomorrow, or next month, or even after work, but NOW.

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When I was first diagnosed I quickly planned a future that ended with my suicide at just the right moment to spare my family from the burdens my illness would surely bring and to allow myself the dignity of death on my own terms. The right moment would be when I felt I could no longer live with myself.

I obsessed about a way I could make an empirical decision as to when the moment was here. The scientist in me tried to identify the variables and quantify the measures with which I could identify my self worth. I even created a spreadsheet to record the areas of subjective variables I might use.

I stepped outside my situation and took a fresh look at my ideas from the end point backwards rather than from my then current point of view (present to future). The end would come when "I could no longer live with mySELF."

Here's the deal. Who is the "I" and who is the "Self" and how can one have authority over the other, indeed, the authority to destroy them both.

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There is a man than has wandered a five mile radius of my office for at least 15 years pushing either a lawnmower or a bicycle. He argues with himself rather loudly and never makes eye contact with anyone.

I was stopped at a red light as he walked by this morning. His strides were long and angry and he seemed to shout at the small push mower as he crossed the street in front of me. I thought to myself that "I hope I never become like him." Then I realized I had actually spoken the words and I was, in fact, having a conversation with myself.

There is a much thinner line between him and me than I had imagined.

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Input and suggestions are always appreciated.

You Can't Speed Read Life.....

2009-10-10T12:11:00.004-05:00

In another life I taught speed reading. We used projectors to rapidly display phrases at set intervals and then tested for retention and comprehension. Being a tad on the competitive side (I check my neighbor's mailbox to make sure I get more mail) I worked hard at getting to the point where I could comprehend larger groups of words at faster and faster speeds.

John F. Kennedy reportedly read at an incredible 2,000 words a minute at 80% comprehension. I never reached those speeds but I read constantly though I fear I have been less than selective about the minutia I have stored in my head. For instance, while in Viet Nam I read Tolstoy's "War and Peace," Solzhenitsyn's "Gulag Archipelago," and (the rebel that I was) "The Quotations of Chairman Mao." (I even relished carrying the Little Red Book in front of officers). But most of the time I devoured books by Louis Lamour whose westerns I could read in a couple of hours or Robert Heinlein escapest science fiction. I even read "The Hobbit" and "The Lord of the Rings" trilogy two or three more times as well as Tolkien's lesser known works.

I still read every magazine article that happens to be within reach though while in the military I occasionally looked at the pictures too. :)

I don't speed read anymore. Or maybe I can't. My eyes don't move as smoothly from line to line and I find myself rereading a sentence to be sure I grasped the full meaning of the prose.

I once looked forward to retiring so I could read the great works that I never got around to. Now I guess I'll have to pick a "Bucket List" of literature and hope I find the time.

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This post was inspired by Jimmy Bastard whose recent blog,
"Silence of Speech" made me slow down and really read.

Wimp Disclaimer....

2009-10-07T13:30:00.004-05:00

It is not common for me to reread my blog posts but I read a few today. I'd like to let my readers know (both of you) that in my day to day life I'm not as much of a wimp as my blog may make me seem.

I post things, feelings, and thoughts that I otherwise push aside. I am actually having a pretty good day today. Business is good, weather is really nice, and I have had a very productive morning.

So if I always seem to depress you, today, smile.

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Photo is from Father's Day 2006 (New bike jersey)

Pride Cometh Before......

2009-10-05T17:11:00.004-05:00

It has been a brutal time since I last posted. I have had such a tough ten days that I've been reluctant to share it.

It seems I've somehow aggravated an old knee injury on my "good" leg and it is quite painful. It also adds to my instability.

On my day off I decided to weed and mulch one of our flower beds. It should have been a small job, but it exhausted me. Later, while checking my vegetable garden, I fell. I was stepping over the rabbit fence and just didn't clear my trailing leg. I fell like a sack of potatoes. Luckily I landed on soft earth avoiding stakes and garden tools.

The earth felt warm and the tomato vines I had bruised as I fell were giving off their distinctive odor. I took a careful inventory as I lay there, then I cried. I had known that a fall would come but I was not ready for it.

Then later that day, while talking to my wife, it all came bubbling to the surface. I sobbed, "I'm sorry." She hugged me as I tried to regain my composure.

I was sorry not only that I was the reason our dreams were being slowly shattered but I was sorry that I had failed to maintain my facade of strength. I must not place the emotional burdens I carry on her.

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Flowers for Superwoman....

2009-09-28T13:53:00.004-05:00

In an earlier post, I mentioned cutting flowers every Sunday for Superwoman. The season for flowers is coming to an end and the days are shortening. I cut flowers in the dark last night. The mosquitoes were hungry.

Here are photos of the last two weeks' arrangements.

It's a bit of a challenge cutting flowers and almost impossible to try to arrange them, so Superwoman has to do that herself. I hope she doesn't, at some point, feel that the flowers are just another thing that she has to do for me.

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Lack of purpose....

2009-09-24T16:58:00.005-05:00

Sometimes I'm overwhelmed with a profound sense of melancholy.

My life has been filled with opportunities to lead people, to make a difference in the lives of others. Most of the time I took the bull by the proverbial horns. I have raised good children, and mentored young men in their professional careers and in competitive sports. Often it took no large effort on my part. Just a word of encouragement or a pat on the butt. I actually enjoyed the respect and validity that came with age. Now in a flash it seems to have evaporated.

I should wish to go out with a bang. Perform some heroic humanitarian feat. Instead I am lucky to be able to give myself a clean shave. My physical frailty has infected my mind.

I was at a stop sign today and my eyes fell upon a man walking slowly and carefully through a nearby parking lot. His steps were unsure and without a sense of purpose. As I watched him I realized it was me.

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Feeling Jumpy......

2009-09-19T15:59:00.003-05:00

You know how too much coffee can give you the shakes? Imagine a total overdose and you get an idea of what it feels like to be in my body. Plus, I love me some coffee!

I probably should lay off the caffeine but I truly enjoy a good cup of coffee (or ten) and I refuse to deny myself the pleasure at this stage of the game. I just wonder if it makes me jumpier.

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I took this photo last night before Superwoman and I went out to dinner. Look closely, she is in the background. It's been a bumper year for our frog population. I catch them and relocate them to my garden. Maybe that also contributes to my jumpiness.

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Boy, this has been a lame post.....I just could not think of a way to work in my frog photo.

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Periodic Explanation......

2009-09-10T11:37:00.003-05:00

When starting this blog in November, 2008, I didn't have a clue where I was going with it. Now, 61 posts later, I still don't. However, as time has passed and I've received comments and emails from patients and caregivers I have a clearer picture of what I hope it will be in the end. Primarily, a running record of my state of mind as I deal with the growing array of symptoms.

With that in mind, and to answer requests from e mailers, I will occasionally post an update of my physical symptoms.

I originally posted a chronological list of symptoms in December, 2008. The "syndrome," over the course of time, can be expected to produce rigidity, slow movements, postural instability, speech difficulty, difficulty swallowing, memory loss, and difficulty planning and executing unrehearsed movements. There is more, but these are the primaries. The movement disorders manifest themselves, at least initially, on only one side of the body.

These symptoms are all caused by the degeneration of tissue in the brain including the basal-ganglia. Thus the name Cortico Basal Ganglionic Degeneration. Mean survivability after diagnosis is eight years though death is not a direct result of the syndrome, but rather the result of bedridden complications such as pneumonia.

My current symptoms are:

Rigidity in my right hand, right shoulder, right buttocks and right hamstring. (Notice a pattern here). Lately there has been stiffness in my neck but it may not be syndrome related.
My walking gait continues to worsen with a "step left - clop right" rhythm that I cannot correct no matter how hard I concentrate. I find that I am losing fine motor shills in my right toes much as I have in my fingers. I don't write with my toes so no big deal here but it may relate to my walking.
Slow movements: Everything takes longer and it seems that I must use a conscious effort to get my right arm to perform tasks. Imagine having to visualize your hand holding the toothbrush so that your left hand can squeeze the toothpaste tube to make it happen and you get the idea.
Postural instability: I can't say for certain that I'm beginning to lean, but sometimes I have to catch myself from stumbling while taking small steps, like trying to avoid stepping on something. If I'm going to lean....please let it be left (politically speaking). :)
I haven't experienced speech loss but my voice seems to be getting weaker or softer. But that could be a good thing as I've always had a tendency to be a bit loud. My theater background taught me to project and I did.
Memory loss: That's a tough one because I've always been weak at remembering names but strong at remembering numbers. It was always hard calling that little blond I met at the club when I recalled her number and not her name. Seriously, it does appear that I have to look at a phone number twice when dialing, though it could be that transmitting the number to my left hand vs right is more difficult.

That's where I stand at the present. Some days seem better than others but some days are more stressful than others so the difference may not be physical. I seem to get emotional easily about sad things though laughter seems to be a thing I remember doing. That's sad.....I use to love laughing and making people laugh.

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Neda Revisted........

2009-09-05T12:40:00.007-05:00

A month ago I posted about the tragic murder of the Iranian girl, Neda, and the subsequent sculpting of her image by a long time friend of mine, Paula Slater.

Since that post the bust has been cast in bronze and Paula's efforts on Neda's behalf has gained notable attention.

In response to requests to sculpt Neda with her hair free-flowing to symbolize her as a free woman, Paula has produced this new image of the woman who has come to exemplify the struggle for human rights in Iran.

This bust will also be cast in bronze.

The Press Release is available and is very informative.

Please join me in spreading the word about Paula's work and her efforts to support the struggle for basic human rights for Iranian women.

It is one thing to be trapped inside a body that is failing. It is another thing entirely to have your quality of life reduced by outside oppression.

"We hold these truths to be self-evident, that all men are created equal, that they are endowed by their Creator with certain unalienable Rights, that among these are Life, Liberty, and the Pursuit of Happiness." Thomas Jefferson, 1776

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Hiding the Blemishes....

2009-09-05T10:18:00.005-05:00

It seems that my blog has turned into a metaphorical garden blog. I think it will change with the seasons as I write what comes to mind and the growing season changes to the dying season.

We live in the delta region of the Mississippi River and in many ways it is everything you think it is. Ten years ago the poorest, worst educated people in the country lived in the neighboring county, Tunica. Then the casinos came in and now they are no longer the poorest county.

Every September since 1857 (except for a few years off for the little North vs South thing) the locals have a get together known as the Mid-South Fair. It has it all; livestock contests, racing pigs, trained chickens that will kick your butt in tic-tac-toe, tractor exhibitions, talent contests, cooking competitions, carnival rides, and incredible amounts of unhealthy food and unhealthy people that love to eat it. Elvis always went. It certainly contributed to his weight issues.

Other than the obvious opportunity to people-watch we always enjoyed visiting the Horticulture exhibit. People enter their best and biggest. Everything from azaleas to zinnias.

Several years ago Superwoman and I decided to enter some things from our garden. Exhibitors get in FREE! That same year I had tried my hand at watermelons in my garden. I had never had much luck with melons and that summer was no exception. I think I had three vines, that produced three watermelons. Two that were puny and one really nice, though not real big, one.

When I told SW that I was entering my watermelon, she scoffed. I thought it was a pretty watermelon. It had only one flaw, right in the middle, where some offending insect had tried to unsuccessfully bore through the rind.

I picked the melon, leaving a bit of stem for that natural look, washed it carefully, then gave it a nice polishing with some olive oil. I don't think it was cheating but it sure made the variations of color stand out.

When we arrived at the Fair with our flowers and such, we had to register and tag each entry with our names. The tags for the flowers had little strings. The ID tag for melons was a sticker which I filled out and carefully placed right on top of the insect scar.

We returned the next day to find my watermelon tagged with a blue ribbon.

Now I'm admittedly not a very good loser, but I've been told I'm an even worse winner. Superwoman is still eating crow over that one.

I'm still trying to hide my blemishes, but I'm running out stickers.

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Don't Judge a Book by Its Cover....

2009-08-29T13:55:00.008-05:00

Just a quick post to remind everyone that you can't fool Mother Nature but she sure can fool you.

In my garden, I always planted Zinnias and Sunflowers near the tomatoes. They attracted birds and insects that eat insects. One of my favorites to watch is the Hummingbird Moth.

It flies just like a one inch long hummingbird would, flitting from flower to flower. Recently I learned a bit more about the Hummingbird Moth. It seems, my favorite little pollinator, when in its larva state is THIS!

The dreaded enemy of all tomato growers!

So now we know......Mother Nature has a sense of humor.
I believe I can hear the trees snickering.

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Fruits of My Labor.....

2009-08-24T17:35:00.008-05:00

Two or three months ago I posted about planting my annual garden. Last month I posted (whined) about caterpillars. Today's post is about the good news.

My garden has done well and is producing loads of GREAT tomatoes and an abundance of flowers for Superwoman's weekly flower arrangement.

For years, every Sunday, I have tried to cut flowers and do an arrangement for Superwoman to take to work on Monday.

This accomplishes three things:

It makes Superwoman happy.
It makes me look better than I am to her co-workers.
It causes her co-workers to give their husbands grief about the husband of the lady at work that is so loving that he gives her flowers every week.

Truth me told, I've saved a fortune. Seriously, it was always relaxing to walk to my garden after a tough twelve hour day at work and commune with nature. Recently I've cut way back to ten hour days, but I still enjoy the garden. I still cut the flowers but my arranging days are coming to an end.

This year I planted more perennials so they'll be flowers after I can no longer plant. I'll sure miss those homegrown tomatoes.

I grew up in a Dark Room....

2009-08-20T16:44:00.015-05:00

I grew up in a darkroom. Really!

My father had many careers including Sports Editor of the local newspaper. Part of the job required taking sports photos and developing them quickly enough to have them for the next days edition. This career branched out into taking team pictures at the local little leagues, charity golf tournaments, and special events. We had a film processing darkroom at home and I spent much of my childhood slaving away under dim red light to meet deadlines and fill orders.

I learned about exposure, contrast, cropping, and the effects of chemical temperatures on photo paper and film. But I wasn't allowed to touch the cameras! At least not until I got older...... much older.

This experience gave me an unusual perspective on photography. By the time I finally began to acquire my own 30mm cameras and lenses I had solved the secret to good photography. I'll tell you the secret at the end of this blog.

I have taken hundreds of rolls of film and when I switched to digital thousands more shots. We have about thirty family photo albums containing memorable moments frozen in time. (Superwoman loves scrap booking).

The photos in this blog are 99.9% mine. The trouble is...... they don't make left-handed cameras. For that matter they don't make one-handed cameras either. It is becoming increasingly difficult to change shutter speeds and F-stops given the small dials and buttons. Sometimes I miss the shot that I knew I wanted.

I will miss this hobby when it's gone. Like everything else connected with this dreaded disease, the bulb doesn't burn out, it slowly dims until it is too dark and cold to provide comfort. Its ironic that I started in a room with a dim red light.

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Here is some samples from my garden.
Click on images for full resolution.

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PS. The secret to good photography:
Take lots and lots of pictures!

Guilt.......

2009-08-13T11:36:00.005-05:00

There have been so many things I have felt I needed to post about that I have not gotten around to any of them. I feel guilty about that. In fact I feel guilty about a lot of things.

Guilt, by definition, requires the act of doing something wrong. "Feeling guilty" is suppose to be a feeling about the commission of a wrong. I feel overwhelmed with guilt for letting people down.

Meeting the expectations of others, or my perceived version of their expectations, has been a driving influence in my life. Whether it was parents, employers, lovers, wife, or children, I worked hard at being who they wanted me to be. I believe we all do that to some extent.

As my physical abilities deteriorate, I find I lack the ability to meet what I think others expect of me. The buddy that wants to play golf, the son that needs help working on his car, hell, even the UPS driver that wants a signature are all instant reminders that I can no longer do what people expect.

My wife cuts my food for me now. It is humiliating.

She cried the other night from the weight of many burdens. I am one of them and I feel guilty about it. I wanted so badly to tell her everything was going to be okay, but they won't.

She is trying so hard to be Superwoman (and doing a great job except for the flying) but she has an impossible task. She can not heal me. I feel guilty about that too.

I ran cross country and track through high school and into my 30's. I loved to run and I was good. I won a LOT of races. What drove me was not that I loved to win, but that I HATED TO LOSE. Winning was not joyful to me, it was a relief from fear of failure. I've carried that my whole life.

Now I face the ultimate failure. The inability to take care of myself.

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A Departure for Neda....

2009-08-04T10:31:00.008-05:00

WARNING: I am departing from the theme of my blog for this post. In essence, however, this post may have greater value than all my others and in turn add greater meaning to my blog as a whole.

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Several weeks ago I, along with millions of others, watched the cell phone video of the murder of a young girl on the streets of Iran. It haunted me that we witnessed her final breaths yet were powerless to do anything about it. In a country that has, for centuries, suppressed a woman's basic rights, we watched them squeeze the very life from one. Her family was prevented from having a memorial service.

Yesterday, I got an email from a long time friend who has, over the years, become a world renowned sculptor. She too had seen the video. She too wept. Then she took action the best way she knew how.

Please visit her web site at:

Fine Art by Paula B. Slater - Works in Progress

By doing so, we make a small statement that We,the people, will not stand by silently.We must not!

Neda Agha-Soltan,

philosophy student, an accomplished singer and was passionate about music and travel. She was also studying to be a tour guide and had traveled to Dubai, Turkey and Thailand.

Neda was engaged to be married.

End of Perks....

2009-07-27T18:15:00.006-05:00

Running a multi-million dollar company has its perks. Most of these perks are supplied by product vendors. I have toured Italy and central Europe on someone else's dime. Rarely a week goes by without someone wanting to take me to lunch at some nice eatery. Then there are the golf tournaments where every team wins prizes. NBA tickets, concerts, and formal balls are always in the mix.

Pau Gasol and my bride.

I've learned to eat left handed fairly well but recently, at lunch, someone ask me if I was on some kind of medication.
I'm not on any medication. There goes the lunch perk.

My ilness has caused me to become anti-social. At first I tried to hide it. Now I just try to hide.

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Biofeedback......

2009-07-23T12:56:00.005-05:00

Many years ago, in a Physiological Psychology class we studied Biofeedback. It had nothing to do with the day you were born or where Saturn's fifteenth moon happened to be. It was all about what the body's autonomic system did under certain conditions. Things like heart rate, blood vessel diameter, breathing, etc.

We used different mechanical devices to measure what our body's functions were doing while we reacted to different stimulus. Modern lie detectors use these devices. Then, for extra credit, we would spend time connected to these devices learning how to control various autonomic systems with our own minds.

I became very accomplished at being able to control my heart rate and my galvanic skin response. We would even have contests where two students would hook up and compete to see who could best control their systems. This was particularly difficult because the very nature of competition causes your autonomic system to kick in. I kicked butt!

Now, these many years later, I feel like I'm walking around hooked up to a giant monitoring machine. If I become frustrated while trying to perform some task my brain fails to block some of the autonomic systems that would normally require a real jump start. For instance, if you become incredibly angry, you would likely become red faced (open capillaries-rapid heart rate) and even begin shaking (muscular twitching). But you would not experience this without being really ticked-off. I, on the other hand, now have a much lower baseline.

I can have difficulty inserting a key into a lock and as I struggle I can feel my system kicking in. I am fortunate that I understand what is happening and am able to revert back to my days as a Physio-Psych-Geek-Stud. I breathe slowly and use my old tricks (that shall remain a secret lest I expose the link between autonomic and carnal).

At this point it works, but my baseline is lowering or perhaps even dissolving. Thank you Biofeedback!

Spray or Not to Spray......

2009-07-16T12:09:00.011-05:00

My tomato/flower garden is coming along nicely despite my late season start. Sunflowers are shooting up and the zinnias are blooming.

I use jute string to tie up the plants to prevent storm damage and help the tomato plants support the weight of the fruit. There are certain things that just have to be done with two hands and tying up tomatoes is one of them. I can do it but it takes concentration for my right hand to work and even then sometimes it jumps from position to position. I can't carry a cup of coffee in my right hand anymore. Well, I can but it's messy (and painful).

My condition casts such a cloud over my outlook on life. The distant future is so bleak and causes such dilemmas. My work is fairly rewarding and gives a momentary meaning to my life, but my hobbies and interests all included physical activity or required at least some dexterity.

I'd love to be "the guy" that faces all this courageously and finds meaning in the fight. I DO put up a facade to my parents and children and try to with my wife (but she reads my blog).

How do I find JOY under my present circumstances?

I fear I can no longer hide my condition from business associates. I can see the look in their eyes. They know something's not right. I was too vigorously active in the past. Two years ago I played 18 holes of golf in the morning and biked 55 miles in the afternoon. Now I can't even putt and riding my bike would be suicide.

Two days ago I found a caterpillar on a tomato plant that was the size of my pinky (finger!). I picked him off and looked at the minor damage he had done. I can spray the plants to kill any others or try to manually find each critter. If I do it manually I'll surely miss some, leading to more damage. If I spray, the plants don't seem as healthy but there won't be any further bug damage.

All I need! Another dilemma in my life. At least I have a hobby.

34 degrees 54 minutes 49.52 N by 89 degrees 59 minutes 11.75 W.....

2009-07-08T16:06:00.011-05:00

Twenty-three years ago, the 1948 Massey Ferguson tractor I used to periodically mow a nine acre piece of property that adjoins ours, gave up the ghost (Died - for my Canadian listeners). The tract of land had been a hay field when my grandfather grazed cattle on it and I continued to mow it long after the cows were gone. There is something manly about driving a tractor.

But the tractor had gone to a better place. The next time the grassy field grew to about a foot high I used the riding mower we used for the lawn to cut a path from one end of the old hay field to the other. Then I cut a few paths that branched off the main path to create a maze of trails throughout the old cow pasture. Over the next twenty plus years I continued to mow the paths leaving the rest of the vegetation to nature.

Today you can see the paths from space (see Google Earth at the coordinates in the blog title). How cool is that?

The paths and the surrounding foliage has become my personal park. I put an old bench under a big pine tree where I sit in silence remembering the past and contemplating the future.

It's ironic. I mowed that first path 23 years ago having no inkling where it would lead and now I know though the path itself has never changed, just everything around it.

Failing Leadership.....?

2009-07-03T15:18:00.008-05:00

As a young child I was small and was often one of the last boys chosen in the neighborhood pickup games. This fact may be at the root of why I have spent most of my life in positions of leadership. From High School on there is a pattern of being at the forefront. Multiple team captains, club presidencies, jury foreman (twice), student governments, retail management, and now running an 18 million dollar a year company. I guess I loved to play the game a lot and the only way to be sure your in it, is to start it.

I've always felt a bit shy in social situations and I would (and do) compensate by pretending to be confident. This gives people the impression that I AM confident, so they step aside and put me in charge. Then I'm forced to find the courage to follow through. Does that make sense?

The most important way to fool people into thinking you have it all together is using body language. Shake hands firmly and enthusiastically, don't cross your arms or put your hands in your pockets. Stand squarely on two feet with shoulders back and chin up. Smile confidently even if your knees are knocking. The next thing you know you've been elected. (Lots of opportunity for Bush jokes here, but I must resist).

My point here is that as I feel more frail and less physically able to maintain the image, I fear someone is going to find me out. I'm actually the little kid in right field that was the last one picked. They all just thought I owned the team.

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When a resolute young fellow steps up to the great bully, the world, and takes him boldly by the beard, he is often surprised to find it comes off in his hand, and that it was only tied on to scare away the timid adventurers.
R.W. Emerson

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LAST MEAL.....

2009-07-01T14:51:00.004-05:00

Not mine, his!

We live in northern Mississippi about a ten miles from the Big River. We have mosquitoes that steal cars. You can worry about West Nile Virus while we worry about dying from blood loss.
But not from this guy (or his progeny)!

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On another note: I feed birds (and regretfully, squirrels). It can get expensive if you are committed to keeping the feeders full. Every once in awhile I get a real surprise. Like this Red Breasted Grosbeak. It is always a surprise when I see one but according to my little log book they return every year on April 29th, the day before my redheaded son's birthday. Weird but true. This was taken a couple of months ago.

If you like birds (and squirrels and chipmunks) and get a little bored then CHECK THIS OUT.

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On a personal note: My walking gait is slowly getting worse, but while at the grocery store yesterday if felt kind normal as I pushed a shopping cart. The bad news is......... I hate shopping!

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The Beginning of the End....

2009-06-27T13:14:00.004-05:00

On October 28, 2007, at about 4:15 PM my cell phone rang displaying the name "Grandma."

My 92 year old Grandmother still drove a car, whipped me in Scrabble, and sang in the church choir, but rarely used her cellphone, so I was concerned that she was having car trouble. I answered cheerfully and was surprised to hear a strange female voice say, "Do you know Lillian Esrey." My heart jumped as I identified myself. The voice told me she had been in a head-on collision with a drunk driver. She sobbed as she told me it was really bad.

The wreck was barely three miles away but the voice said the ambulance was already on scene and was to take her to a trauma center in Memphis. I broke down when I told my wife but regained my composure when I told my mother that we needed to go to the hospital.

We never saw my Grandmother alive again. The next day I had the task of identifying my Grandmother's broken body as it lay motionless on a stainless steel table. I choose to go to the morgue alone. I'm glad that only I carry that image.

The man that killed her eventually plead guilty to negligent manslaughter and was sentenced to 15 years in prison.

At the time of her death my symptoms were just manifesting themselves as something that was degenerative. Her instant removal from my life changed me and is a line of demarcation that I will never be able to recross. I miss her daily.

Anger Management......?

2009-06-20T09:41:00.006-05:00

A few months ago I wrote about grief and how it pertained to my condition. At the time I had not reached the level where I could express or even feel anger about my illness. I'm afraid that is changing.

In my frustration of not being able to do things that were simple tasks six months ago I feel increasingly bitter. I've ALWAYS been a person that internalized emotions. From experience, I know this is not a train without stops. Sooner or later something has to give.

Anger can only be directed inward for a short time before it starts looking for outlets. It usually reaches out to those closest to you. My dog will forgive me faster than my wife, so Lucky may have a rough go of it. :)

Seriously, despite my efforts to think positively, sometimes it becomes too much. Basic psychology teaches that how we define our biological condition controls how we react to situations. Our body responds similarly to extreme joy that it does to intense anger. Our reactions to the biologic conditions define us. I fear that my end days will define me as a bitter, angry man. How can I short circuit the process? How can I skip over anger and jump to resignation and peace?

I have not found the answers, but I'm searching for them. In the meantime.......I'm pissed!

New Developements....

2009-06-18T09:46:00.018-05:00

There has been a weird new development in my symptoms. Nothing! I mean there is nothing new and my current issues seem to have hit a plateau.

I wake up every morning and take inventory. What hurts, what works, and what doesn't. For the past week I've felt pretty good (relatively speaking). I'm still working 50+ hours a week and business is good. I guess the digression is taking place at its own pace.

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The tomato/flower garden I planted is coming on nicely except some cut worm sliced some of the sunflowers of at ground level. The little bastards! I enjoy the sunflowers and the birds do too.

Here are a few of last year's.

I also take photos of some of the wild things that grow around here.

These (get your mind out of the gutter) become these.

Then these!

Click on images to enjoy full resolution.

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If a picture is worth a thousand words then this has been a very long blog!

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Be Safe My Son......

2009-06-11T12:04:00.004-05:00

It is one thing to romanticize about the patriotic heroism associated with military service. It is another thing entirely to experience the utter futility and needless loss of life that wars produce. It is ironic that though I, after serving my country twice in Viet Nam, as a devout pacifist spent the early part of the week saying goodbye to my oldest son as he prepares to leave for Iraq.

He was not, as most are, some fresh out of high school 18 year old that was sold some bill of goods by an Army recruiter. He will soon turn 27 and made an informed decision that going through military training would augment his chosen career in law enforcement. Despite my political leanings I encouraged him because he was doing things for the right reasons. For that I am proud.

But I am fearful not only for his physical well-being but afraid that his experiences will cause him to see the rest of his life through the olive drab glasses of a cynic. A cynic like me. Never to again accept things at face value.

A few soldiers will be wounded, fewer still will pay the ultimate price, ALL will be changed.

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Talking With My Hands.....

2009-06-06T12:10:00.005-05:00

I've talked with my hands for as long as I can remember. Not sign language but verbose gestures emphasizing my point. My parents sometimes made me sit on my hands as I told them some exciting story about my school day. It was hard to do.

My childhood was filled with family games of Charades and school plays. I later was scholar shipped and attended The National Conservatory of the Dramatic Arts in San Diego, California. I'm sure these experiences only encouraged me to physically enhance my speech.

I recently stumbled across this tid bit:

According to a new study, talking with our hand is actually beneficial. This makes thinking easier. A research conducted by the University of Chicago revealed that people who moved their hands more frequently while talking have higher retentive memory compared with those who kept their hands still.

Researchers at the University of Chicago explained that gesturing while speaking seems to make speech less of an effort which may leave more mental resources available for memory.

Now, you can tell yourself its ok to use your hands. It’s one way of improving your memory.

Last night I was having dinner with friends (thank you Olive Garden) and became aware that I was gesturing only with my left hand and my right hand was just sort of dancing beneath the table. I looked at it with a sense of bemused embarrassment (a term I stole from L.Q.).

One of the more common symptoms of my illness is loss of speech. It's ironic that even though I have not yet lost vocal abilities I have, in a sense, begun to to lose MY method of communicating.

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Knowing It's The Last Time.....

2009-06-03T11:40:00.008-05:00

Under normal circumstances it is rare that you know you'll be doing something for the very last time. Maybe the day you retire or the last day of high school or perhaps the last visit to the hospital to see a dying friend.

My circumstances are different. I planted my annual tomato / flower garden yesterday. It was a very difficult challenge and left me exhausted. Then I wept. I knew that it would be the last garden I ever plant. I was barely able to dig the holes and struggled to hammer in the support stakes. If my condition continues to degrade at the present rate, there is no way I'll be able to plant next year.

I keep running into things that I've always been able to do but now, either can't or am barely able to struggle through.

The message here is to be cognizant of how lucky you are to be able to do not only the things you enjoy, but also the things you now think are necessary evils. Be happy that you can peel that bannana, pop that top, fasten that seat belt and be joyous that you can carve that turkey.

My Wife sends a meeting request...

2009-05-28T15:56:00.008-05:00

My wife sent me meeting request. She, after 20+ years, has finally learned how to get a commitment out of me.

The meeting is for Saturday night and the subject is finances. I have done the family finances for at least fifteen years. We have both been in the same jobs during that whole time and have, until the most recent stock market calamity and my health prognosis, been on pace for a comfortable retirement. Now we, after our 401K's have been reduced to 201K's and the assumed fact that my earning years have been shortened, have to go to plan B.

I have until Saturday night to define plan B.

I kid her about how comfortable I'm leaving things for her next husband. She says there will NEVER be another husband. She says it with such a degree of enthusiasm that I wonder if I should be insulted. I would like to think I was so much fun she couldn't wait to do it again.

There is no accounting for taste.

One Lone Egg....

2009-05-26T12:02:00.012-05:00

Being in retail, I work loads of hours and ALL Saturdays. For years I've taken Tuesdays off. This one was fortuitous.

I've been watching the Wren family every morning as I prepare for work, with a clear view from my bathroom window.

I've often walked over to take a photo before leaving for work.

There were initially four eggs but it seemed that only two chicks were visible. They grew at an amazing pace.

This morning, as I watched, it seemed the adults were visiting the nest in a rather nervous fashion (I believe wrens drink LOTS of coffee) and seldom feeding the chicks.

I took a break from their show to do some work when I heard feverish chirping outside. I grabbed my camera and went to the window just as the last chick was peering over the edge of the planter that the nest was in.

And instant later it was gone!

I quickly rushed outside to take this one picture and went inside, visiting the nest one more time as I past. It was empty except for one lone egg.

Dreams of the Future....

2009-05-25T16:51:00.007-05:00

I seldom have nightmares. I guess by and large I have a certain sense of reality that causes me to live in an overall state of well being. I think surviving Viet Nam sort of calmed me down. I truly do not sweat stuff I can't control.

Last night I had a dream that I needed assistance to climb a small set of stairs. I sobbed. I think it woke me up.

Geez that's pathetic sounding.

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Wrens have hatched and Mom & Dad are busy feeding. Quite entertaining.

Mental Agility....

2009-05-22T16:47:00.006-05:00

I just got back from visit to my neurologist. She ask me the standard questions including how the medication (Sinemet) was doing. I told her I quit taking it over a month ago.

The side effects out performed the benefits. I believe the medicine contributed to the emotional roller coaster I was riding. Now that I'm off it, I only lose control in private.

She also gave me some mental agility tests. I won't make the Olympics but I was above normal. That 's scary considering there were flashcards involved that I believe I first saw in kindergarten.

On another note: I inadvertantly ticked off a reader who has been recommending that I go to WalMart and buy coconut oil. He/She said it "might add six months to my life." I responded that I would take six HEALTHY months but that I didn't want to add six months to the end. I think I hurt her/his feelings. Sorry, but I hate going to WalMart!

On another note.....a house wren set up house in a hanging plant outside my bathroom window (again). I quit watering the plant so I made the choice to kill the plant to save the birds.

I 'll keep you informed.

The Alien is a Woman...

2009-05-18T12:22:00.004-05:00

Warning: This post will probably fail the "Politically Correct Test."

One of the more common symptoms of my illness is "Alien Limb Syndrome." While some of the literature describes arms that totally do their own thing, mine is not at that point yet. Mine just seems to have a personality of it's own, and in my humble opinion, it is female.

A court of law would not recognize me as an expert in the field of female identification, however, I have been around women since before I was born and I have never mistaken a man for a woman. EVER! (And that includes some rather difficult to remember nights in Hong Kong, Las Vegas, and Honolulu).

I base the gender identification of my offending limb on the following factors:

There are times that no matter how beneficial to my well being performing a task might be, my arm and hand (further referred to as SHE) may stubbornly refuse to cooperate.
Some days SHE is in a better mood than other days.
Too much caffeine makes HER irritable and may give her the shakes.
Logic has no affect on HER at all.
SHE has difficulty with cellphones while driving.
Getting dressed always takes HER longer.
SHE's easier to manage after a glass of wine or two. (It's for her not me).

So there. Irrefutable proof. It sort of gives new meaning to "getting in touch with your feminine side."

Out Of The Closet...

2009-05-16T12:02:00.005-05:00

My wife has been reading my blog but denying it. I thought using THIS photo in my last post might flush her out. I was right (surprise, surprise).

She voiced displeasure that I would use a picture of her with her tongue sticking out and wearing reading glasses. I responded, "Photos don't lie, except the ones where you use Photo Shop to remove the wrinkles."

I asked her which photo she would have preferred. She said, "The one of me and Michael Douglas."

So here is that one.

I feel obligated to let my reading public (both of you) know that the "Michael Douglas" in this photo is actually a waiter at the Hofbrauhaus in Munich, Germany. He too could carry many mugs of beer. Mmmm!

My Wife Is Leaving Me...

2009-05-14T15:01:00.004-05:00

Not really, but it's a catchy title.

Actually, we were talking last night and she brought up her best friend who had gone through a bout with breast cancer a few years back. In the midst of the battle her husband broke camp and left.

My wife, now facing a hard few years with me, said she couldn't imagine how a spouse could abandon someone in their darkest hours.

I asked for at least two weeks notice.

See, I still have a sense of humor.

Dove of my Life....

2009-05-08T17:11:00.006-05:00

A few weeks ago I was taking a walk on the trails on my property when I came across this broken bird's egg. I always take my camera on these walks because I never know what I might see. I snapped a photo but thought it was kind of sad and didn't use it until now.

I'm always looking for some metaphorical relationship between my photos and my blog. This time there is no need.

I was walking on the same trail, in the same spot a couple of days ago when I came across this little guy. Lucky paid him no mind. It was nice to know that there was more than one egg in the nest.

Life goes on.....

Of course you know to click on images for larger view!

Mother's Day Blues.....

2009-05-07T15:13:00.004-05:00

My parents were mere adolescents when I was born. The good news is that I still have them in my life. They live about 100 meters from my home in a house that my Grandfather built. I see them nearly every day, if even for a couple of minutes, and feel guilty if I don't (Mom sees to that).

I told my folks about my diagnosis early on but spared them the details. Thankfully neither of them knows how to "google." My Mother however has been watching me with that eye that only Mothers have and as my symptoms become more obvious she becomes more motherly. (I can only eat so much).

This past Sunday I told them I needed to sit down with them about their affairs. There is a real possibility that they may outlive me and I wanted to make sure they had wills, funeral arrangements, and insurance in a place that was easy to find.

The conversation went well and I was pleased to find they were well prepared. Then they took the opportunity to turn the tables on me. They drilled me for half an hour with questions about my illness. I answered them in my best clinical voice...... then I began to crack. Then my Mom began to crumble. I went for a glass of water. I took a long drink, composed myself, and went back into the room.

My Dad said, "You always try to beat me at everything." It was an uncomfortable attempt at humor though true in every way. He taught me chess at age five and never LET me win....I had to beat him on my own.

I hugged my Mother like I always do. She wouldn't let go......I sobbed, "I'm so sorry. "

I live in dread of losing my parents but I can not bear the thought of what my death would do to them.

Whew! These things are killin' me!

Non-Sissification....

2009-04-30T14:56:00.010-05:00

After yesterday's rather depressing piece, I feel obligated to let everyone (both of you) know that things haven't always been this bad. In fact one day my Dad and I caught 27 fish. Here's the photo to prove it. I usually became impatient rather quickly on these fishing trips, but as I recall we hardly had time to eat our customary Bit-O-Honey.

I thought I would share a rather humorous anecdote that ended in a freefall (not to be confused with a free-for-all).

My baby sister (two years my junior) was always the risk-taker amongst the four of us (as demonstrated in the baton twirler photo). I was the oldest and had two brothers younger than the two of us.

As we grew old(er), had families and careers she continued to confess a desire to skydive. As in jump out of a plane from a very high altitude, falling at a high rate of speed, planning on a large piece of fabric to break your fall enough to survive, thus experiencing extremely high doses of natural adrenaline. I was all for the high without the plane and such.

For her birthday one year I (who then lived in Memphis) went online and purchased her a skydive package at Perris Valley, California (She lived in San Diego).

I flew out a few months later on a casual visit and she squealed, "This is so great! We can skydive together." I was caught in the manhood dilemma (an instance where you know you are about to do something fundamentally stupid to avoid the sissy word).

So we drove to the desert, took a five minute introductory class, watched a 30 minute video of their lawyer telling us the papers we were signing meant if we so much as slipped on a banana peel in the parking lot they could not be sued, and then got on the plane.

It was a twin engine plane carrying about ten other jumpers and a pilot with a bucket of KFC between his legs (could I sue if the pilot choked on a drumstick.....NO). My sister and I were jumping last because as novices we were tethered to other (non-sissy) professional jumpers.

It took several looong minutes to climb to the required 14,500 feet. We then leveled off as one jumper after another leaped enthusiastically out the open door. My sister was woo-hooing.....I was near sensory overload. As my new best friend (strapped to my back) and I made our way toward the door I reached a point where I could see the jumpers as they fell away from the plane. Let me take a moment to alert any of you who have watched films of skydiving and thought, "Boy that looks like fun!" BE ADVISED: All those films are in slow-motion! You do not float gently away from the plane. You fall like a freakin' rock! I mean fast. Ahem... I digress.

My sister, and her new best friend, position themselves, rock three times, and leap. I hear the scream I've known since she was two for about a millisecond and she is gone. Out of sight! We get into position, then my BFF pulls us back in and announces, "We missed the drop zone, we'll have to go around." I have just spent 1 1/2 hours driving to the desert, 45 minutes of earthbound build up, fifteen minutes of ear popping ascension to walk to the door of my manhood and was told WE HAVE TO GO AROUND AGAIN!

The next three minutes went by very slowly. We again neared the door, I forgot to count to three (sensory overload thingy), and we were out.

It seemed like 30 seconds before I could breathe and I was not prepared for the noise wind rushing by at 125 mph makes. I did maintain consciousness and just about the time I thought I had a handle on falling like a rock the chute went up and the deafening roar changed to silence.

One minute later.... we landed! Manhood intact!

Window to the future....

2009-04-29T12:29:00.006-05:00

I have worked for the same employer for nearly 16 years. We started with one little tire & auto service store, seriously wondering how we were going to make the first week's payroll. Today we have two companies, eleven retail stores, and a sizable wholesale division. I have been the General Manager for over seven years. It has been a helluva ride!

I informed the owner of the company of of my diagnosis shortly after entering 2009. We work together everyday and have been a successful team. the problem is.....He is in complete denial.

He asked me recently what medication I was taking. I said, "Nothing now, why?" He said he noticed I was having difficulty when we were having lunch with a couple of vendors. I explained that it is a normal symptom of CBGD and that things will get worse. He thinks I should change doctors.

I am already having difficulties in some job related areas but I have developed coping mechanisms. I'm becoming pretty good at typing left handed and I keep Word open on my desktop to jot down notes that would normally end up on a yellow post-it. During phone calls when someone gives me a quick phone number, I type it into my calculator.

My biggest concern, at the present, is stress induced tremors. When I get into a stressful situation my right leg goes berserk. I've been a public speaker for years and though speaking before big crowds made me nervous, I was an expert at masking it. Now I even feel some tremor just writing this. A nice glass of Australian red wine seems to help, but I do have to drive home from work!

Right after I was diagnosed, I joined a support group on Yahoo that automatically forwards any emails posted to the group. Ninety-five percent of these are posted by caregivers supporting CBGD patients that are in latter stages of the disease. It gives me a window to my future. It is ugly and I often delete the emails without reading them.

The real dilemma is do I live all out now while I can or do I resist the temptation and spend all my resources preparing for the future. Most people have trouble not living in the past.... I have trouble not living in the future!

Well, THAT was depressing! I promise a counterpoint soon.

2009-04-25T14:22:00.004-05:00

A few weeks ago I posted a photo taken in my yard in a post about "Gettin' Small" to better appreciate nature at the micro-level. I have a camera that has great macro settings and allows for great detail. I was looking back at those photos and realized I wasn't getting as small as I thought I was.

I missed seeing this guy!Click on image to view larger.

Click here to view perspective.

Creeping Tension....

2009-04-23T17:02:00.006-05:00

Blogging comes with a great deal of responsibility. On one hand there is the obligation to write (especially if your blog is called The DAILY something-or-other). On the other hand there is a desire to not post a load of crab just to be posting.

I get explosions of divine inspirations, then by the time I get off the freeway and boot up the laptop, they appear lame in fluorescent light. The whole purpose behind this blog was to leave a breadcrumb trail that I and others could follow should we wish to view the past as I dealt with my illness. I have often departed from that theme but I assure you that my life has not. You might just say the breadcrumbs come from a variety of loaves. Some days sweet bread.....some days sourdough.

Since my diagnosis of CBGD on November 14, 2008, my symptoms have progressively worsened, but not in a dramatic fashion. Most noticeable to me is my walking gait. It is not quite a limp to look at but there is an audible difference in my footfall. My thigh muscles in my right leg are in a constant state of "creeping tension." I must make a conscious effort to tell it to relax. This works for a few seconds then the tension returns. The bright side is I'm getting some exercise even while I type this. The bad news is: I know that if this "creeping tension" follows the expected path I will eventually loose the use of the leg. Right now, I'm thankful for cruise control.

Cozumel in 3 minutes or less....

2009-04-21T11:04:00.004-05:00

My first attempt (and maybe my last) at posting a video in my blog. I do have a web cam but they are not very flattering. Just know that in April, 2009, I am still able to do these things.....that is a blessing!

Flying Dreams.....

2009-04-15T17:19:00.009-05:00

The night after I returned from my dive trip to Cozumel I had "Flying Dreams."

These are vivid dreams in which I can fly. No arm flapping needed. Just push off and up
I go, slowly as I climb and faster when I swoop toward the earth. The sensation is incredible and the views are more realistic than I can imagine while awake.

Historically I've had these uplifting dreams when I have been at peace with my life. I'm not at a place right now that I could call peaceful, so I believe the dreams were carryovers from my dive trip.

Ninety percent of the diving in Cozumel is "drift diving." Incredibly peaceful and nearly effortless. The boat drops you off at one end of a reef formation. You drop to the bottom, assure that you have good neutral buoyancy, and let the current propel you along the reef. Take a deep breath and you begin to rise, exhale and you sink. Nearly an hour later, after gently sailing above beautiful peaks and valleys containing amazing wildlife, without the sound of a human voice (maybe the voices in your head), you slowly ascend back to the surface and the waiting boat.

An hour of weightlessness with only the sound of breathing in air and exhaling bubbles is as close to flying as I'll ever get......while awake!

Back to Reality...

2009-04-13T16:26:00.005-05:00

As much as I dreaded it, I couldn't avoid returning to the real world. It was a wonderful trip and except for a few lapses, I was able to push my condition out of the way and have some fun.

I'll post a real blog about the trip.......as soon as my world rights itself.

PS "Warm Saltwater" does cure what ails you but the effects are temporary.

I'm Here!....

2009-04-03T16:07:00.005-05:00

Just a quick post to let you know I made it.

This is a photo taken out my back door. It's 87 degrees with a nice breeze.

I'm not diving until Monday.....I can't wait! Viva Mexico!

Warm Saltwater....

2009-04-02T15:54:00.005-05:00

It's a running joke of mine that the cure for most of what ails anyone is "Warm Saltwater." I'm actually referring to the warm water in the Gulf of Mexico just off of Cozumel.

I've taken taken about twenty trips to the island over the last decade. Scuba diving is always a prime objective of the trips and the windex water and abundance of aquatic life makes it a perfect destination.

My last trip was in March, 2008, and I truly feared I had made my last dive. A funny thing happened during a big case of denial. I'm booked and leaving Saturday!

I'm not a risk-taking type of diver and have been nervous about handling my equipment with my ever worsening right side movement disorder. So I scheduled a pool dive with my dive shop as a confidence builder and a refresher on what does what. This is not a supervised dive and you must do everything yourself.

The pool is about 25' deep and indoors. I checked and doubled checked my equipment and air supply then gently rolled into the water. It was nirvana! I think they may have slipped a splash of "laughing gas" into my tank because I was one happy guy.
I spent 30 minutes underwater.....weightless...without a momentary thought about my condition. No pain, no rigidity, no tremors.

I told my wife that for obvious health reasons I may have to stay in Cozumel. Sometimes she just doesn't have a sense of humor.

So I will probably be out of the blogosphere for a week or so. With any luck I'll come back and report that "Warm Saltwater" really is a cure for what ails you.

You Gotta Get Small...

2009-03-25T18:00:00.010-05:00

I have been so in tune with nature lately. It might be just the fact that spring has sprung or that I know there are limited numbers of them left.

Loving the big spectacular images of spring can be breath taking and impossible to ignore.
It takes a little more effort to fully experience the fullness of what is going on. The flowers in this photo bloom in my yard every year. I have never bothered to appreciate them before. To learn their names or pay attention to their life span. You have to get small to see it, smell it, know it.

Yesterday.... I got SMALL!