Thursday, April 30, 2009


After yesterday's rather depressing piece, I feel obligated to let everyone (both of you) know that things haven't always been this bad. In fact one day my Dad and I caught 27 fish. Here's the photo to prove it. I usually became impatient rather quickly on these fishing trips, but as I recall we hardly had time to eat our customary Bit-O-Honey.

I thought I would share a rather humorous anecdote that ended in a freefall (not to be confused with a free-for-all).

My baby sister (two years my junior) was always the risk-taker amongst the four of us (as demonstrated in the baton twirler photo). I was the oldest and had two brothers younger than the two of us.

As we grew old(er), had families and careers she continued to confess a desire to skydive. As in jump out of a plane from a very high altitude, falling at a high rate of speed, planning on a large piece of fabric to break your fall enough to survive, thus experiencing extremely high doses of natural adrenaline. I was all for the high without the plane and such.

For her birthday one year I (who then lived in Memphis) went online and purchased her a skydive package at Perris Valley, California (She lived in San Diego).

I flew out a few months later on a casual visit and she squealed, "This is so great! We can skydive together." I was caught in the manhood dilemma (an instance where you know you are about to do something fundamentally stupid to avoid the sissy word).

So we drove to the desert, took a five minute introductory class, watched a 30 minute video of their lawyer telling us the papers we were signing meant if we so much as slipped on a banana peel in the parking lot they could not be sued, and then got on the plane.

It was a twin engine plane carrying about ten other jumpers and a pilot with a bucket of KFC between his legs (could I sue if the pilot choked on a drumstick.....NO). My sister and I were jumping last because as novices we were tethered to other (non-sissy) professional jumpers.

It took several looong minutes to climb to the required 14,500 feet. We then leveled off as one jumper after another leaped enthusiastically out the open door. My sister was woo-hooing.....I was near sensory overload. As my new best friend (strapped to my back) and I made our way toward the door I reached a point where I could see the jumpers as they fell away from the plane. Let me take a moment to alert any of you who have watched films of skydiving and thought, "Boy that looks like fun!" BE ADVISED: All those films are in slow-motion! You do not float gently away from the plane. You fall like a freakin' rock! I mean fast. Ahem... I digress.

My sister, and her new best friend, position themselves, rock three times, and leap. I hear the scream I've known since she was two for about a millisecond and she is gone. Out of sight! We get into position, then my BFF pulls us back in and announces, "We missed the drop zone, we'll have to go around." I have just spent 1 1/2 hours driving to the desert, 45 minutes of earthbound build up, fifteen minutes of ear popping ascension to walk to the door of my manhood and was told WE HAVE TO GO AROUND AGAIN!

The next three minutes went by very slowly. We again neared the door, I forgot to count to three (sensory overload thingy), and we were out.

It seemed like 30 seconds before I could breathe and I was not prepared for the noise wind rushing by at 125 mph makes. I did maintain consciousness and just about the time I thought I had a handle on falling like a rock the chute went up and the deafening roar changed to silence.

One minute later.... we landed! Manhood intact!

Wednesday, April 29, 2009

Window to the future....

I have worked for the same employer for nearly 16 years. We started with one little tire & auto service store, seriously wondering how we were going to make the first week's payroll. Today we have two companies, eleven retail stores, and a sizable wholesale division. I have been the General Manager for over seven years. It has been a helluva ride!

I informed the owner of the company of of my diagnosis shortly after entering 2009. We work together everyday and have been a successful team. the problem is.....He is in complete denial.

He asked me recently what medication I was taking. I said, "Nothing now, why?" He said he noticed I was having difficulty when we were having lunch with a couple of vendors. I explained that it is a normal symptom of CBGD and that things will get worse. He thinks I should change doctors.

I am already having difficulties in some job related areas but I have developed coping mechanisms. I'm becoming pretty good at typing left handed and I keep Word open on my desktop to jot down notes that would normally end up on a yellow post-it. During phone calls when someone gives me a quick phone number, I type it into my calculator.

My biggest concern, at the present, is stress induced tremors. When I get into a stressful situation my right leg goes berserk. I've been a public speaker for years and though speaking before big crowds made me nervous, I was an expert at masking it. Now I even feel some tremor just writing this. A nice glass of Australian red wine seems to help, but I do have to drive home from work!

Right after I was diagnosed, I joined a support group on Yahoo that automatically forwards any emails posted to the group. Ninety-five percent of these are posted by caregivers supporting CBGD patients that are in latter stages of the disease. It gives me a window to my future. It is ugly and I often delete the emails without reading them.

The real dilemma is do I live all out now while I can or do I resist the temptation and spend all my resources preparing for the future. Most people have trouble not living in the past.... I have trouble not living in the future!

Well, THAT was depressing! I promise a counterpoint soon.

Saturday, April 25, 2009

A few weeks ago I posted a photo taken in my yard in a post about "Gettin' Small" to better appreciate nature at the micro-level. I have a camera that has great macro settings and allows for great detail. I was looking back at those photos and realized I wasn't getting as small as I thought I was.

I missed seeing this guy!Click on image to view larger.

Click here to view perspective.

Thursday, April 23, 2009

Creeping Tension....

Blogging comes with a great deal of responsibility. On one hand there is the obligation to write (especially if your blog is called The DAILY something-or-other). On the other hand there is a desire to not post a load of crab just to be posting.

I get explosions of divine inspirations, then by the time I get off the freeway and boot up the laptop, they appear lame in fluorescent light. The whole purpose behind this blog was to leave a breadcrumb trail that I and others could follow should we wish to view the past as I dealt with my illness. I have often departed from that theme but I assure you that my life has not. You might just say the breadcrumbs come from a variety of loaves. Some days sweet bread.....some days sourdough.

Since my diagnosis of CBGD on November 14, 2008, my symptoms have progressively worsened, but not in a dramatic fashion. Most noticeable to me is my walking gait. It is not quite a limp to look at but there is an audible difference in my footfall. My thigh muscles in my right leg are in a constant state of "creeping tension." I must make a conscious effort to tell it to relax. This works for a few seconds then the tension returns. The bright side is I'm getting some exercise even while I type this. The bad news is: I know that if this "creeping tension" follows the expected path I will eventually loose the use of the leg. Right now, I'm thankful for cruise control.

Tuesday, April 21, 2009

Cozumel in 3 minutes or less....

My first attempt (and maybe my last) at posting a video in my blog. I do have a web cam but they are not very flattering. Just know that in April, 2009, I am still able to do these things.....that is a blessing!

Wednesday, April 15, 2009

Flying Dreams.....

The night after I returned from my dive trip to Cozumel I had "Flying Dreams."

These are vivid dreams in which I can fly. No arm flapping needed. Just push off and up
I go, slowly as I climb and faster when I swoop toward the earth. The sensation is incredible and the views are more realistic than I can imagine while awake.

Historically I've had these uplifting dreams when I have been at peace with my life. I'm not at a place right now that I could call peaceful, so I believe the dreams were carryovers from my dive trip.

Ninety percent of the diving in Cozumel is "drift diving." Incredibly peaceful and nearly effortless. The boat drops you off at one end of a reef formation. You drop to the bottom, assure that you have good neutral buoyancy, and let the current propel you along the reef. Take a deep breath and you begin to rise, exhale and you sink. Nearly an hour later, after gently sailing above beautiful peaks and valleys containing amazing wildlife, without the sound of a human voice (maybe the voices in your head), you slowly ascend back to the surface and the waiting boat.

An hour of weightlessness with only the sound of breathing in air and exhaling bubbles is as close to flying as I'll ever get......while awake!

Monday, April 13, 2009

Back to Reality...

As much as I dreaded it, I couldn't avoid returning to the real world. It was a wonderful trip and except for a few lapses, I was able to push my condition out of the way and have some fun.

I'll post a real blog about the soon as my world rights itself.

PS "Warm Saltwater" does cure what ails you but the effects are temporary.

Friday, April 3, 2009

I'm Here!....

Just a quick post to let you know I made it.

This is a photo taken out my back door. It's 87 degrees with a nice breeze.

I'm not diving until Monday.....I can't wait! Viva Mexico!

Thursday, April 2, 2009

Warm Saltwater....

It's a running joke of mine that the cure for most of what ails anyone is "Warm Saltwater." I'm actually referring to the warm water in the Gulf of Mexico just off of Cozumel.

I've taken taken about twenty trips to the island over the last decade. Scuba diving is always a prime objective of the trips and the windex water and abundance of aquatic life makes it a perfect destination.

My last trip was in March, 2008, and I truly feared I had made my last dive. A funny thing happened during a big case of denial. I'm booked and leaving Saturday!

I'm not a risk-taking type of diver and have been nervous about handling my equipment with my ever worsening right side movement disorder. So I scheduled a pool dive with my dive shop as a confidence builder and a refresher on what does what. This is not a supervised dive and you must do everything yourself.

The pool is about 25' deep and indoors. I checked and doubled checked my equipment and air supply then gently rolled into the water. It was nirvana! I think they may have slipped a splash of "laughing gas" into my tank because I was one happy guy.
I spent 30 minutes underwater.....weightless...without a momentary thought about my condition. No pain, no rigidity, no tremors.

I told my wife that for obvious health reasons I may have to stay in Cozumel. Sometimes she just doesn't have a sense of humor.

So I will probably be out of the blogosphere for a week or so. With any luck I'll come back and report that "Warm Saltwater" really is a cure for what ails you.