Friday, January 9, 2009

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!


  1. You may have some options that you have the power to pursue on your own. Of course, they may not work. You will have to decide if they are worth trying. Search Google for more info on the following:

    1. Medium-chain triglycerides (MCT) / coconut oil
    2. Niacinamide
    3. Methylene blue
    4. Cinnamon
    5. Lithium

    Also, check out the forum:

    And the forum:

  2. Hi, I'm Ed. I'm a Vietnam vet diagnosed with CBGD in Sept of 07. I was diagnosed by a neurologist working with the VA in Denver. Some other neurologists are a little skeptical about the diagnosis, but offer no other ideas. I've had trouble with memory, deductive thinking, reading, loss of use of left arm and much weakness in left leg. My condition went downhill fast for almost a year, then seemed to stabilize when I started taking Univera supplements. It seems to have relieved my sleep apnea and prostate trouble, thus giving me more restful sleep. Also my energy level and mental state are much better. Thank you for your blog, everything we can learn and share helps. Ed

  3. Hello - My dad died of CBD in May 2002. While we didn't know exactly what he has until after his death, the doctors did try a number of medications. One was anti-depressants. I believe it was paxil. It did help him alot with respect to the mood swings he suffered. At a certain point, it didn't work any longer, but for the time he was on it, it did help.

    My dad was also a VietNam Vet, just an interesting tidbit. My mom is convinced that something he was exposed to during service is what created this illness.

    Ann (aka Libby J)


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