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.

--------------------------------------------------------------------

Talking With My Hands.....

I've talked with my hands for as long as I can remember. Not sign language but verbose gestures emphasizing my point. My parents sometimes made me sit on my hands as I told them some exciting story about my school day. It was hard to do.

My childhood was filled with family games of Charades and school plays. I later was scholar shipped and attended The National Conservatory of the Dramatic Arts in San Diego, California. I'm sure these experiences only encouraged me to physically enhance my speech.

I recently stumbled across this tid bit:

According to a new study, talking with our hand is actually beneficial. This makes thinking easier. A research conducted by the University of Chicago revealed that people who moved their hands more frequently while talking have higher retentive memory compared with those who kept their hands still.

Researchers at the University of Chicago explained that gesturing while speaking seems to make speech less of an effort which may leave more mental resources available for memory.

Now, you can tell yourself its ok to use your hands. It’s one way of improving your memory.

Last night I was having dinner with friends (thank you Olive Garden) and became aware that I was gesturing only with my left hand and my right hand was just sort of dancing beneath the table. I looked at it with a sense of bemused embarrassment (a term I stole from L.Q.).

One of the more common symptoms of my illness is loss of speech. It's ironic that even though I have not yet lost vocal abilities I have, in a sense, begun to to lose MY method of communicating.

--------------------------------------------------------------