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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New perspectives........

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.....

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.......

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.....

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....

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......

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....

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....

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......

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......

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........

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....

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....

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.....

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:

1. It makes Superwoman happy.
2. It makes me look better than I am to her co-workers.
3. 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....

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.......

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....

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....

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......

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......

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.....

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.