Insidious digression....

When I was first diagnosed with CBGD I was fervently proactive in preparing for my impending death. I rushed around organizing finances, informing family, and washing windows. Then as the days passed I became complacent. My symptoms, day to day, did not seem measurably worse. I continued to read literature on the disease and some days put the book aside because reading about the progression of the disease was worse than having it.

But now, four months after my diagnosis, I understand. It's like the tiny ivy vine wrapped around the sapling. It slowly tightens its grip even as the oak strains to grow.

While my symptoms are not noticeably worse than they were yesterday, they are profoundly worse than they were four months ago. I don't need a haircut today but I will in three weeks. I don't have troubling swallowing food now....but I will.

The newest symptom, if it is a symptom, is vision related. I have enjoyed 20/20 vision my whole life though reading glasses became necessary in my 50s. Recently after reading for a few minutes, then walking outside, I experience some double vision. My right eye seems to be slow to adjust to the change in focal range. It temporarily affects my depth of field. Not good!

The bottom line: I must recapture the sense of urgency I once had.

The Good News: We have booked our trip to Cozumel. My sister and her husband are meeting us there to assist me in making one last series of scuba dives. I love diving and I know that the last one will be emotional. I have had emotional dives before, when I have drifted around a coral head and been overwhelmed with the beauty of swarming schools of fish. But this will be different. Knowing I'll never experience the weightless serenity again.



The bright side is that I was lucky enough to have experienced it at all.

The Mentality of the Physicality...

The physical aspects of this syndrome is at this point the lighter side of the impending darkness. I still speak normally, have no swallowing problems, and my eye site (other than the ever present reading glasses) is fine. I get around fine though I have noticed a change in my gait when walking. Sort of a lazy leg walk. The "alien limb" symptom that is described in CBGD literature is aptly named. I have the sensation that my right arm and leg may at any time do something I don't expect. As if part of my brain is spending resources to keep them in line. My right hand and arm stiffens when I sit at my desk and seems cooler to the touch.

As recently as two years ago, I was cycling 150 - 200 miles a week. I still long for the endorphin rush those long solitary bike rides provided. Last night as I tried to share my status with my wife she suggested that I get back on my trainer (stationary bike). My response was, "What's the point." I regret saying that. It was a weak moment when I should have toughened up. I can't know her pain, I can only try not to add to it.

I haven't been treated for depression.....yet. I feel like that is a line in the sand of a vast desert. If I cross it there is no turning back. I guess in reality the metaphor is accurate.

I only know that my lows are VERY low and the highs are not very high. I think about suicide as a real option at some point down the road. I know these are not rational thoughts to a healthy mind but my mind is not healthy in so many ways. I may feel differently about that line in the sand once I've crossed it and I may find the desert has redeeming values, but for now it has no visible horizon and I am mortally afraid what it may contain.

I believe the fear of losing my dignity is greater than my fear of losing my physical abilities.

I am (was) a proud man that has led a full life. I have climbed mountains, swam with turtles over a hundred feet below the ocean surface, and jumped from an airplane 14,000 feet above the earth. I have planted seeds and eaten the fruit of my labor. I sang with Pavarotti (though so did the other 15,000 people) and spent countless beautiful days on golf courses without a single hole in one. I swelled with pride when I witnessed my children perform in plays or ran their hearts out in races they would not win.

It has been a wonderful ride. It is not over!

Cast of Characters

Any decent narrative requires solid establishment of its characters. This post will attempt to introduce you to me and my Cast of Characters.

ME: I was born January 11, 1952, in San Diego, CA. My father was career Navy and we spent my childhood at various duty stations including Huntsville, Alabama, Natchez, Mississippi, Memphis, TN, and Chino, CA.

During these travels my parents managed to expand the family to provide me with a sister (2 years my junior) and two brothers (5 and 16 [surprise!] years younger).

We really jumped around in the late 60's and I attended four different high schools, finally graduating from Chino High School, in Chino, CA in 1970.

I won the lottery that year. The US Military draft lottery that is. Soon after my ping pong ball was pulled I received the "Greetings" letter from my Uncle Sam. I ignored the letters until they started including references to the FBI. I joined the US Navy to avoid the Army. I did two tours of duty in the Viet Nam theater aboard the USS Camden as a Nuclear Weapons Transhipment Specialist. Thankfully I wasn't called on very often and managed to avoid combat with a couple of hair raising exceptions.

I attended several colleges and universities after my enlistment was over finally finishing at Cal. State LA. I lived much of the 70's and early 80's in a kind of adolescent stupor that was a combination of living in Southern California and various chemical enhancements. I won't dwell on my first marriage during this period as it was a mistake in SO many ways.

In May of 1986 in a fit of geographical flight from the path I was continuing to follow, I loaded up my truck and moved to Memphis. Here I met my life's partner and married her (and her two kids). In 1988 she bore me a son and we've been family ever since.


My Wife: Gale was a single mother of two children
(Tim 4 and Jennifer 9) that in a rather forward fashion invited me to a "singles" Sunday school class at her church. I've always loved children (still being a child myself) and her's were no exception. We've been married for over 21 years now and she is without question my moral compass and the love of my life.

I can't give her age for fear of an even earlier mortality. She had spent her entire life in the Memphis area before we met. Together we have spent time in California, New York, Boston, Hawaii, Central Europe, Italy, and many trips to Cozumel, Mexico. I scuba dive and though she was a non-swimmer when we met, she has become an avid snorkeler. She took swimming lessons after (ahem) age 50 and even went back to college to learn Spanish after it was apparent that we would continue to visit Mexico. She has been to Guatemala twice on medical mission trips where her Spanish has endeared her to the local villagers.

She is a wonderful mother that never took the easy way out. She will be a tireless caregiver as my condition worsens and if there were any way that I could spare her, I would. Truth be told, if I have the strength and opportunity...I will spare her.

Our children: Jennifer, Timothy, and Scott are as different as they could be yet have an inseparable bond when faced with a common enemy........like their parents. :-) Jennifer and Tim have a biological father that lives out of town and periodically comes in and out of their life. For Jennifer, in particular, that gave her the imagined option of, "I'll go live with Daddy." As she grew older and realized the real consequences of that statement she dropped it from her vocabulary. Today as a wife and and mother she seems to really appreciate Gale & I and the job we've done as parents.
Tim married his childhood sweetheart, became a Deputy Sheriff, and is leaving for Iraq in May, 2009, with the Army National Guard. He is a driven, focused young man that grows more like his mother every day.

Scott is my biological son so he's stuck with me. He is soon to be 21 and leads a busy life. I do see empty cereal boxes and dirty clothes that indicate he still lives with us. Scott has a strong moral direction and he seems to have the respect of his friends because of it.

Being the sneaky father that I am, I monitor their MySpace pages to keep abreast of what is going on in their lives that they are willing to share with the world but not their parents.

As my story goes on I'm sure I'll need to bring up other people, but these are the people I feel responsible for. I've spent a good portion of my life protecting them and providing for them. I have a profound sense of guilt that my illness will cause me to let them down. If I had one wish granted or prayer answered, it would be that I not be a burden to these special people that so enriched my life.

The Diagnosis....

It was Friday, November 14, 2008. A particularly crisp fall day in Memphis. The kind of day you wish would go on forever.

I had been to a total of five doctors, had at least five MRI's, and still didn't know why I was losing the fine motor skills in my right hand. Today I was seeing doctor number six with the attitude that any diagnosis would be a relief. I was wrong.

The doctor I had picked had an Indian name. I choose this doctor from a referral list strictly because the office was in the same clinic where some of my MRI's had been done and I didn't want to have to lug films around.

I waited two hours in a near empty waiting room slowly developing an attitude. When a rather round flowered nurses' smock called my name and ushered me to a room (I only refer to the smock because for the life of me I cannot remember another single detail about her).

I was surprised to only wait another twenty minutes before a tap on the door announced the woman that was coming to define my future. I was surprised the doctor was a woman. Her name had not given me a clue and I felt chauvinistically foolish.

She sinecerely apologized for my wait and got right down to business. I gave her a document I had prepared giving a timeline of the progression of my symptoms. She complemented my organization but I had just grown tired of repeating the same story over and over. She patiently read my past. The difficulty I had noticed shifting my bicycle during long rides, then the weird way my right arm refused to swing when I walked, then the rapid deterioration of my handwriting.

She asked me a few questions that I now do not recall. Then she confidently said, "I'm ninety percent sure I know what you have." WHAT!

She refused to spill the beans until she had spent a good 45 minutes testing my right side versus left side reflexs, sensitivities, and coordination. She left the room for a minute and returned with literature and web pages that I could go to for support. Then she said, "Corticobasal Ganglionic Degeneration, otherwise called Parkinson's Plus."

She wants to see me in six months but I'm not sure why. I've read the bad news now. "Mean survivability after diagnosis is EIGHT YEARS."

This blog will be a record of my progression (er, degeneration). This first post was typed entirely with my left hand. Kind of a bitch when you're right-handed to start with.