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

Love Letter to Superwoman.....

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.........

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.........

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....

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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