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.



  1. Dear Bob, Thank you for the update on your condition. I think your sorting out the main focus of your blog will make it all the more valuable to others. However, we also, love hearing about your life in general, your garden and other daily things that make life worth living--you get a blue ribbon for it all.

    P.S. Thank you for posting the information about the second portrait bust of Neda "Angel of Freedom".

    Love and Light, your friend,

  2. Hi Bob,

    Thanks for the update. I've been wondering how you're doing with the CBGD. Please don't be afraid to use a cane or walker when necessary. It will help you avoid falling.

    My mom -- even though in the end stages of the disease -- still has a sense of humor and laughs quite a bit. Also, her memory stayed with her. I've read on the different websites that memory doesn't seem to be affected.

    Still rooting for you here in TX.


  3. Such a tragety.

    Ask your neurologist for some samples of Axona. That should help.

  4. Hi Bob, thanks for the update, i am going to ask Kel this weekend if he is experiencing any of the same, as usually he answers no when i ask him if he has changes, I am taking him to the cabin this weekend, on the Mississipppi, and we'll go pontooning, i now need to learn how to dock it. THe bluffs in Iowa are so beautiful, that is where we have our cabin, we live near Madison ,WI, Take care and i so enjoy reading your blog and i feel like i am following Kel's path too as he seems so withdrawn lately. Karla

  5. I'm glad you're posting updates- I wonder how you're doing sometimes.

    I don't have much to say other than this blog is on my short list of must reads, even though I'm a silent reader most days, and as long as you keep going with it, I'll keep reading.

  6. Paula,
    Thanks and you're welcome. Keep up the good work!

    Thanks for the encouragement. Give your Mom a hug from me.

    I'll ask about the Axona. Sinemet seemed worthless. I quit taking it months ago.

    Kel will confirm, I'm sure, that it is difficult to notice day to day changes. Thinking back a few months though and we can tell there are changes.
    Small world. The water you'll be floating on this weekend will be passing here in a couple of days.

    I too lurk about your blog though don't always comment. I'll try to keep up the blog 'til the last keystroke. What an slumped over my laptop with "C-ya" on the screen.

    Sorry, my morbid sense of humor takes over sometimes.

  7. I've wondered about you and decided to come on over and check you out. Sending you big hugs.

  8. Peach Tart,
    Thanks for checking up on me, and for the hugs. I've VERY busy lately and haven't had much time to read my favorite blogs. I'll catch up soon.

  9. Hi Bob. Lately, I haven't been in the blogosphere as much as would like too. Both my boys are visiting. They got military leave at the same time so I'm spending some good mom/son time.

    I have been thinking about you. I've told people about you and your blog, so I hope they have stopped by. Thanks for the update on your condition. It's hard to read sometimes, but at the same time, I love feeling your enduring strength at times of uncertainty. I hate to sound cliche, but your attitude and perseverance inspire me. Thank you.

  10. Theresa,
    My boy expects to get some time off in December. I hope, for his sake, it happens. Give your boys a firm handshake (what the hell...a hug) from me.

    Thanks for the encouragement! Really.


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