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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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!

Anticipatory Grief.......

It has been a tough week.

I was a Psych major in college and I tend to see things through those psych-colored glasses. I've been feeling kind of bummed out for weeks and talked to my doctor about it. I feared that I was slipping into depression. After some self analysis, I believe I'm going through a normal grieving pattern. More specifically "Anticipatory Grief."

Anticipatory grief is, "grief that begins before (in anticipation of) the loss, such as the initiation of divorce proceedings or when a loved one is diagnosed with a terminal illness." Only this time the loved one is ME and I'm not just mourning the loss of life but the loss of quality of life.

Grief and mourning is supposed to be healthy and normal. Humans survive the grieving process though there is almost no way to do so without completing all the steps. Denial (been there), Anger (can't seem to find this one yet), Despair (can't shake this one), and finally Acceptance of the loss. I haven't been able to wrap my brain around how to get to accepting the loss. It makes no sense!


I have tried to keep this blog upbeat but honest. Today it was hard to be both.....Sorry!

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.

i MISS....

I miss riding my bike! We've had weather in the high 60's the last few days. A year and half ago that would have meant several hours of endorphins, at least two gel packs, and my customary halfway reward of a package of Jelly Belly Sport Beans.

I thought about selling my bike after my CBGD diagnosis, but it feels like I'd be selling an old friend. It carried me from 209 lbs to 173.

Most of my rides were solo rides, though I often hooked up with some younger guys that would truly drive me to new levels (of speed and pain). One of them was a weightlifter named Doug that was a hoss. He was a large guy that loved to take the front and I was more than willing to let him pull me along.

In 2007 I was asked to be the Captain of the Memphis Hightailers MS 150 Team.
I had been involved with the ride for years as a photographer and fundraiser. This gave me the opportunity to motivate others to raise funds too. I trained hard and put together some group training rides. The end result was the team raising over $26,000 for the local Multiple Sclerosis Society.
The ride was also memorable because I crashed with five other riders at 20 mph on a remote asphalt road. I rode the final 57 miles with a separated shoulder and much road rash. The jersey I wore that day was torn and bloodstained.

A few months later the bike club asked me to come to a meeting at a local restaurant under the guise that I was going to make a presentation. They even asked me to invite my wife which was a bit unusual but it was a free meal. After I made my little presentation the club president asked me to stay up for a moment. The club presented me with a Golden Spoke award for my efforts as captain of the MS 150 team. The award turned out to be the torn jersey mounted and framed.
My sneaky wife had been a part of the conspiracy all along!

I was humbled and embarrassed. Even though I had not yet been given a name to my disease, I knew my riding days were over. I continued to get calls from Doug and the guys to join them for early morning rides. I was ashamed to say my body was failing and made up lame excuses until they quit calling.

Someday I'll have to come clean!

Who's Lonely Now....

To try and get a better view of the road ahead, I am reading a book titled "Finding Meaning with Charles." Since my CBGD diagnosis I have searched for some patient testimonies to get some semblance of what to expect. There is an abundance of caregiver sites but in my "victim" state of mind I dismissed them as not possibly knowing what I (or other "victims") are feeling.

While there may be some truth to my assumption, in that no one can KNOW what another feels, I am finding that I am gaining valuable insight into the state of mind of a caregiver. As lonely as it feels to be trapped inside a degenerating shell, I am fortunate to have a loving wife that is steeling herself to the task ahead and we will travel this road together.

Of the many insights I have gained, perhaps the one that hit home most was a trait I shared with Charles. We were both independent, athletic individuals that once our symptoms began to overpower us, we choose to attempt to hide them. We both told our wives to keep the secret. Denying them of their own support group.

The author of the book, Janet Edmunson, gave me the ability to see that I was not alone but I was forcing my wife to be. As a result I have told my wife that I am prepared for the secret to get out if she wished to tell her closest friends and family. She seemed relieved.

I will, I'm sure, refer to The Book from time to time as I move along. Thank you Janet.....and I'm sure my wife thanks you.

Shifting Solstice (not astronomically)

A few years ago, right after I had cycled my first century (100 miles in one day) I was feeling pretty good about myself and all was right with the world...... with one exception. The heater in my wife's car was on the fritz and and I was catching the fallout.

So I surprised her with a new little two-seater sports car. It is a Pontiac Solstice with a five speed transmission. Sweet little car that she quickly warmed to (the heater worked). She accused me of buying it for myself but it remains her daily drive. I will admit to having a bit of a crush on the feel and handling of her little sportster.

In all honesty I had recently attended the Panoz racing school in Atlanta as a guest of Pirelli Tire. I really had a blast and caught a bit of the racing bug. My 1994 Jeep Cherokee just wouldn't allow me to practice my new found skills.
Er, so I bought my wife a car.

Yesterday, as I often do on Sunday, I took her car for a drive to the car wash. I always hand wash it because of the convertible soft top.
Then I took it out for the "blow the water spots off" part of the process. ; )

Bam! Another reminder that things are not the same. I couldn't speed shift. And the more I tried, the weaker my arm became and the stronger the tremor. As I got more upset my right leg muscles began to twitch. I cruised back to the house and toweled off the car.

There is no moral to this story. Just another example of the process. My life is forever changed.

Do Not Go Gentle Into That Good Night......

When I was 14 years old and a new student in the drama class taught by Elanor Franks, I was given an assignment to do a poetry reading. At the time, I probably knew three poems by heart and they were all written by Dr. Seuss.

I had entered the class at mid-semester and Ms.. Franks was determined to have me removed from the class knowing that I was a semester behind the rest of the class. I was a bit insulted.
I was determined to find a poem that I could read with the dramatic enthusiasm that might change her mind.

When I first read Dylan Thomas, I felt a connection to his style and subject matter. But when I first read Do Not Go Gentle Into That Good Night I had an epiphany. In nineteen lines he had defined how I hoped to live and die. That was 1966.

I learned the poem, read it with youthful vigor, and never forgot its meaning. I lived life with the intent to be spent at the end. At 14 I had decided that when I faced "the dying of the light" I would have no regrets for having not lived. I do not!

Do Not Go Gentle Into That Good Night
by Dylan Thomas

Do not go gentle into that good night,
Old age should burn and rave at close of day;
Rage, rage against the dying of the light.

Though wise men at their end know dark is right,
Because their words had forked no lightning they
Do not go gentle into that good night.

Good men, the last wave by, crying how bright
Their frail deeds might have danced in a green bay,
Rage, rage against the dying of the light.

Wild men who caught and sang the sun in flight,
And learn, too late, they grieved it on its way,
Do not go gentle into that good night.

Grave men, near death, who see with blinding sight
Blind eyes could blaze like meteors and be gay,
Rage, rage against the dying of the light.

And you, my father, there on the sad height,
Curse, bless me now with your fierce tears, I pray.
Do not go gentle into that good night.
Rage, rage against the dying of the light.

PS. When I finished reading the poem, Ms. Franks loudly pronounced, "Welcome to the class Robert!"

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.