The Good Ol' Days....

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

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

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

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

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

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

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

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

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

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

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

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

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

Roots......

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.....

"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......

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......

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.............

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.......

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.....

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....

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.