Thursday, March 10, 2011

The Good Ol' Days....

A few of my readers are either CBGD patients (I'm told "victims" is not politically correct) or caregivers. While my blog posts may give you an idea of my state of mind, I think it important to occasionally convey my physical condition. That being said, prepare to be bored.

I posted a Symptom Time-line back in November, 2008. At that time, the symptoms that concerned me most were the loss of fine motor skills (particularly the ability to write) and minor hand and leg tremors. Boy, those were the days!

Since then I have progressively lost strength and coordination in my right hand and arm. So much so that performing any task requiring two hands is difficult and frustrating. Frustration and stress exacerbates my most painful symptom, the near constant tension in my upper right leg. Specifically my hamstring, quadriceps, and gluteus (butt cheek). In normal use these muscles either flex or relax to perform tasks. Mine are in a near constant state of war with each other. Only sleep or a conscious command to relax bring a bit of relief.

Even when I can momentarily get the muscles to relax, they feel as they do after a terrible cramp. Then, as soon as I return my thoughts to life the battle begins anew.

As a natural right-hander, I find using my left hand for some tasks difficult. It is like trying cut your own hair while looking in a mirror.

As my condition worsens my movements have become slow and halting requiring deliberate thought.

Eating with a fork is challenging and humiliating and as I struggle to balance the food on a trembling fork, slowing inching it to my open mouth, the war in my leg ratchets up. I still enjoy good food, I just don't enjoy the act of trying to get it to my mouth. The good news is that I'm dropping some pounds.

While I have yet to have a doctor confirm it, I perceive a jerkiness in my eye movement. It isn't a huge thing now but makes me feel vulnerable when driving in traffic, eyes darting from mirrors to roadway. Yes, I'm still driving, but plan to quit BEFORE the big accident. :)

All in all I try to keep up a brave front. Even though I know that I will eventually look back on these as the Good Ol' Days.


  1. That quite touched my heart! It made me sit back and think about my life!!

  2. Gee... the small things we take for granted EVERY DAY that we're not even aware of... getting food from a plate to our mouths... driving with confidence... thinking about everyday stuff and not about what our muscles are doing! WOW!
    Thanks for always putting life in perspective... and helping us 'victims' to prioritize! (we're all victims... to hell with PC) Good post! Thank you for making the effort... and sharing your life with us.
    Hope you and SW have a wonderful trip to CA!
    Until the next post... ... .. :)

  3. My husband passed away 15 months ago from CBGD. One of the hardest things to deal with was how it affected his speech. He could speak but it was hard to understand him and eventually he didn't speak at all. Consequently, we never discussed how he was feeling or what he was going through. It was like CBGD was an 800 pound gorilla in the room. We saw it, we knew it was there, but we pretended it wasn't. He couldn't tell me what he was thinking or how he was feeling.

    Your "diary" of the journey that you're on has given me some insight into what my husband was going through and for that I thank you.

    It's a brave thing you're doing and you have my utmost respect.

  4. thank you for are doin good.better than my sister who was only offically diagnosed last you believe in cinnamon and have you tried anything that helps you?please keep in touch with all of us its good to know we are not alone.take are always in my prayers

  5. Thank you for sharing! My mother in- law was diagnosed with CBGD 3/4/11. It seems to be progressing quickly. Of course there had been things going on for about a year before this. We had thought maybe a stroke, but her Dr. told her it was not a stroke, and didn't give any insight as to what it could be. Finally, we went to a more reputable facility and got the diagnosis. I have been trying to read everything I can about CBGD. Reading your blog has been very helpful, and I truly appreciate what you are doing.

  6. Bob, Thanks for the update on your condition. I have been out of circulation for some time, but I am still out here thinking of what you are facing. Wanted to stop by and check on things, so your post was the perfect idea for my purposes. Sorry about losing coordination and strength in your one side. It is hard to eat and do the everyday lifestyle tasks that are so important. I feel for you. Listen you take care, Dan B (We Will Go On Guy)

  7. hey bob, i haven't posted lately but always know that i read everything. Kel was at MAYO two weeks ago, the MRI did not show anymore atrophy on the left side so that is good news, but cognitively he has declined. The dr's also felt that the left side was having myoclonic activitiy. Kel also struggles with utensils and getting the food to his mouth, some days worse than others, i have started to put many of his meals in bowls instead of plates to help him. We are going to particpate in the dauventide clinical trial probably starting in June. Well gotta get to work. think of you often. Karla

  8. My mom was diagnosed retrospect the symptoms began in January 05 - she is now 62. There is so much I want to write ... but I will just say, thank you.


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