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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The Coconut Experiment.......

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.......

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