Monday, September 28, 2009

Flowers for Superwoman....

In an earlier post, I mentioned cutting flowers every Sunday for Superwoman. The season for flowers is coming to an end and the days are shortening. I cut flowers in the dark last night. The mosquitoes were hungry.

Here are photos of the last two weeks' arrangements.

It's a bit of a challenge cutting flowers and almost impossible to try to arrange them, so Superwoman has to do that herself. I hope she doesn't, at some point, feel that the flowers are just another thing that she has to do for me.


Thursday, September 24, 2009

Lack of purpose....

Sometimes I'm overwhelmed with a profound sense of melancholy.

My life has been filled with opportunities to lead people, to make a difference in the lives of others. Most of the time I took the bull by the proverbial horns. I have raised good children, and mentored young men in their professional careers and in competitive sports. Often it took no large effort on my part. Just a word of encouragement or a pat on the butt. I actually enjoyed the respect and validity that came with age. Now in a flash it seems to have evaporated.

I should wish to go out with a bang. Perform some heroic humanitarian feat. Instead I am lucky to be able to give myself a clean shave. My physical frailty has infected my mind.

I was at a stop sign today and my eyes fell upon a man walking slowly and carefully through a nearby parking lot. His steps were unsure and without a sense of purpose. As I watched him I realized it was me.


Saturday, September 19, 2009

Feeling Jumpy......

You know how too much coffee can give you the shakes? Imagine a total overdose and you get an idea of what it feels like to be in my body. Plus, I love me some coffee!

I probably should lay off the caffeine but I truly enjoy a good cup of coffee (or ten) and I refuse to deny myself the pleasure at this stage of the game. I just wonder if it makes me jumpier.


I took this photo last night before Superwoman and I went out to dinner. Look closely, she is in the background. It's been a bumper year for our frog population. I catch them and relocate them to my garden. Maybe that also contributes to my jumpiness.


Boy, this has been a lame post.....I just could not think of a way to work in my frog photo.


Thursday, September 10, 2009

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.


Saturday, September 5, 2009

Neda Revisted........

A month ago I posted about the tragic murder of the Iranian girl, Neda, and the subsequent sculpting of her image by a long time friend of mine, Paula Slater.

Since that post the bust has been cast in bronze and Paula's efforts on Neda's behalf has gained notable attention.

In response to requests to sculpt Neda with her hair free-flowing to symbolize her as a free woman, Paula has produced this new image of the woman who has come to exemplify the struggle for human rights in Iran.

This bust will also be cast in bronze.

The Press Release is available and is very informative.

Please join me in spreading the word about Paula's work and her efforts to support the struggle for basic human rights for Iranian women.

It is one thing to be trapped inside a body that is failing. It is another thing entirely to have your quality of life reduced by outside oppression.

"We hold these truths to be self-evident, that all men are created equal, that they are endowed by their Creator with certain unalienable Rights, that among these are Life, Liberty, and the Pursuit of Happiness." Thomas Jefferson, 1776


Hiding the Blemishes....

It seems that my blog has turned into a metaphorical garden blog. I think it will change with the seasons as I write what comes to mind and the growing season changes to the dying season.

We live in the delta region of the Mississippi River and in many ways it is everything you think it is. Ten years ago the poorest, worst educated people in the country lived in the neighboring county, Tunica. Then the casinos came in and now they are no longer the poorest county.

Every September since 1857 (except for a few years off for the little North vs South thing) the locals have a get together known as the Mid-South Fair. It has it all; livestock contests, racing pigs, trained chickens that will kick your butt in tic-tac-toe, tractor exhibitions, talent contests, cooking competitions, carnival rides, and incredible amounts of unhealthy food and unhealthy people that love to eat it. Elvis always went. It certainly contributed to his weight issues.

Other than the obvious opportunity to people-watch we always enjoyed visiting the Horticulture exhibit. People enter their best and biggest. Everything from azaleas to zinnias.

Several years ago Superwoman and I decided to enter some things from our garden. Exhibitors get in FREE! That same year I had tried my hand at watermelons in my garden. I had never had much luck with melons and that summer was no exception. I think I had three vines, that produced three watermelons. Two that were puny and one really nice, though not real big, one.

When I told SW that I was entering my watermelon, she scoffed. I thought it was a pretty watermelon. It had only one flaw, right in the middle, where some offending insect had tried to unsuccessfully bore through the rind.

I picked the melon, leaving a bit of stem for that natural look, washed it carefully, then gave it a nice polishing with some olive oil. I don't think it was cheating but it sure made the variations of color stand out.

When we arrived at the Fair with our flowers and such, we had to register and tag each entry with our names. The tags for the flowers had little strings. The ID tag for melons was a sticker which I filled out and carefully placed right on top of the insect scar.

We returned the next day to find my watermelon tagged with a blue ribbon.

Now I'm admittedly not a very good loser, but I've been told I'm an even worse winner. Superwoman is still eating crow over that one.

I'm still trying to hide my blemishes, but I'm running out stickers.