Saturday, October 16, 2010

Hotel California.....

This stuff is really kickin' my butt!

Even in my dreams I'm limited physically now.

My walking gate mimics Kevin Spacey in the "Usual Suspects." Only he's faking it.

My movements, especially eating, have become slow and hesitant. The medical term is "Bradykinesia." I call it humiliating.

My mother-in-law recently had a stroke from which she has been slow to recover. Her condition has required her to be admitted to a long-term rehabilitation center. She has a roommate that is in the later stages of Parkinson's Disease. My CBGD will follow a similar path and it is overwhelming for me to visit and confront, face to face, my future in such a place.

If I wasn't needed and still able to be productive, I would, no doubt, check out of this decaying hotel and move on.


I took this photo on a recent vacation Superwoman and I
took to San Francisco.

It was nice.


  1. I am v-e-r-y glad to see you. I've been kind of worried about you.

  2. "If I wasn't needed and still able to be productive. . . . " I think of that often. I have a client who is losing cognitive functioning rapidly now due to MS (which I have). Her physical abilities are crashing as well in most humiliating ways. I most often think of a client who is now long dead, who went from cane to wheelchair to bed while I knew her, losing bit by bit. And I wonder how much I will take. I'm not all that needed, all that productive, nor all that strong.
    For what it's worth, I look for your posts. I feel some kinship and a truckload of encouragement from your words. Yes, you are needed AND productive.

  3. Thank you for writing your blog. My mother has CBGD and has been living with me and my family (husband, three kids and three dogs) for the past four years. I think I noticed symptoms of it about 8 years ago. She is surrounded by all of us, but I know that she feels so alone with the disease as do I. It's a very lonely disease because unlike cancer or heart disease there are no support groups for either of us. Your blog creates a kind of support group for all of us who are affected by this horrible disease. I admire you for writing about your days, both your good and your bad. You are making a difference in other people's lives.

  4. As sad as this entry is, you did end on a GREAT note... key words and phrases...
    "recent"; "vacation"; "Superwoman and I"; "It was nice"!!
    Hang in there CW! The farther we get from this world, the closer we are to eternity! And the good news... EVERYTHING of this world is TEMPORARY! Eternity is FOREVER!! :)

  5. Over the past four years I have come across an enormous amount of information about CBS and other related neurodegenerative disorders. It seems to me that most neurologists aren't even aware of the research that's been published about CBS-- and more importantly, ideas to explore to attack it-- because they aren't looking. But it's all out there on the Internet waiting for you to find too. Perseverance and tenacity will succeed when the rest of the world tells you all is lost.

  6. Hey Bob, so glad to see you posting again, have missed your words. The pic is very beautiful, what a pink, vibrant. You do sound down, it is such an effort to be "up" and to not let others see the sadness and defeat, i am sad too many days but have become a very good "faker" at pretending happiness . I do find though by pretending, sometimes true joy does filter in. You are such an inspiration to so many in your battle against this monster of a disease. I did hear from Dr Boeve, they will hopefully begin the phase II trial of daventide in early 2011, there will be some strict guidelines put on by Allon Pharmaceutical. I am praying Kel makes it in. Maybe you should try? UPENN is also another site that will begin a trial of davuntide. Please keep fighting, stay active as much as you can. That seems to be a key thing, exercise. Kel is doing well, hasn't really slipped much in the last few months, on a plateau I believe. We are headed to the Badger/Hawk game this saturday in IA CIty. He loves his Hawkeyes. Take care, think of you often. Karla

  7. PEN,
    I'm sorry. I haven't been highly motivated and I have a lazy streak (when I can find the time).

    Thanks for your encouragement. It means a lot to me.

    I'm sorry you have to be involved with this. It seems to affect so many lives. It is like watching a multi-car wreck in super slow motion. I hope my words don't disturb you too much.

  8. TnQRus,
    I always understood the shortness of this life. I crammed a lot of living into my years but had envisioned a time to slow down and be retrospective. Just not yet.

    Thanks for the motivation. I have no doubt that a generation or two from now the medical field will lick a lot of these neurological demons. Probably with stem cell technology.

    It is nice to know you are still keeping tabs on me. I'm your biggest fan, you know! Tell Kel I'll root for Hawkeyes from now on.

  9. You inspire me beyond words...and one day, I wish the world has half the heart and mind you do , and then...and only then will we be almost there. Thank you brother.

  10. CW, you missed my point. Just trying to give you something to look FORWARD TO... not BACK or even SHORT-TERM... but FOREVER... something really worth focusing on! That's all. :) I know, I know... easier said than done! :(
    Just know that you're prayed for EVERY DAY! :)


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