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.

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

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.......

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

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...

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......

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......

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......

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....

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.......

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...

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?

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.....

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....

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....

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......

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?

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.....

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....

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....

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.....

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.....

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.......

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....

I miss the person I was.

I think my wife misses him too.

It's too sad for words.

Emotional Birthdays.........

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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