Friday, June 13, 2008

The cerebellar cognitive affective syndrome

Friend Caroline directed me to a great study link at

The cerebellar cognitive affective syndrome
JD Schmahmann and JC Sherman Department of Neurology, Massachusetts General Hospital, Boston 02114, USA.
Anatomical, physiological and functional neuroimaging studies suggest that the cerebellum participates in the organization of higher order function, but there are very few descriptions of clinically relevant cases that address this possibility. We performed neurological examinations, bedside mental state tests, neuropsychological studies and anatomical neuroimaging on 20 patients with diseases confined to the cerebellum, and evaluated the nature and severity of the changes in neurological and mental function. Behavioural changes were clinically prominent in patients with lesions involving the posterior lobe of the cerebellum and the vermis, and in some cases they were the most noticeable aspects of the presentation. These changes were characterized by: impairment of executive functions such as planning, set-shifting, verbal fluency, abstract reasoning and working memory; difficulties with spatial cognition including visual-spatial organization and memory; personality change with blunting of affect or disinhibited and inappropriate behaviour; and language deficits including agrammatism and dysprosodia. Lesions of the anterior lobe of the cerebellum produced only minor changes in executive and visual- spatial functions. We have called this newly defined clinical entity the 'cerebellar cognitive affective syndrome'. The constellation of deficits is suggestive of disruption of the cerebellar modulation of neural circuits that link prefrontal, posterior parietal, superior temporal and limbic cortices with the cerebellum.
So, you may be thinking, what in the world does that all mean? Some of my readers understand this "med speak" much better than I do, and I suspect some of you might be baffled at why this article has interest to me.

Well, let's see. I have an "acquired, post traumatic chiari" which means that part of my cerebellum has herniated or been pulled down into the spinal canal (the same is true of my brainstem).

Since my injury, I have had so many cognitive challenges and they are so hard to explain, even to myself! I just didn't understand why and I didn't have words to explain just what my challenges were. All I could say was, "It's hard for me to talk on the phone." It's hard for me to do several things at once like I used to. "I find it hard to do things that have multiple steps."

For example, a friend ordered 3 books from me. All I had to do was take those books, inscribe them and wrap them up, put them into a box, address the box and take them to the PO and send them on their merry way.

But it took me a week to do it and I finally had to make myself get it done. The night before I knew I had to knuckle down and package up these books, I went to the closet and got the three books from a box. I got the address book, the packaging tape and put them with the books onto the kitchen island. This felt good. I had gotten a few of the steps out of the way.

how could this be hard to do? It's simple as it can be. But it's a struggle for me. Finally, the next day, I accomplished this task.

When Caroline shared this link, it helped me so much. Listen to the problems that people with this newly-named syndrome have: "These changes were characterized by: impairment of executive functions such as planning, set-shifting, verbal fluency, abstract reasoning and working memory; difficulties with spatial cognition including visual-spatial organization and memory"

I looked up "set shifting" and found this information fascinating. It means that when you are working on a project with multiple steps (and what project doesn't have multiple steps?), you must go from one step to the next. But for people with this syndrome, they find difficulty with forgetting about the previous step so that they can move to the next step. The previous memory stays with them and clutters the mind.

I can SO relate to this! And it caught me broadside because I thought, "This is why I can't play a muscical instrument anymore!" I thought about how you must forget one step immediately and move onto the next, and how my struggles with playing, besides the obvious physical challenges, caused me to feel "brain-fried" after playing my mandolin, banjo or guitar.

Once again, I can't explain why I feel better just knowing there's a reason for why I experience things the way I do. It's not very often that we find doctors who will explain these things to us, if they even know. And yet, it's something we live with, day in and day out and if we can say, "This is normal for someone with damage to the cerebellum...this is expected for someone who has suffered these traumatic injuries," it all affords some sense of understanding and normalcy and awareness that is healing on a different level.

Caroline also shared this link, to Dr. Oro's blog:

Thanks, my Canadian friend!


Chuck Martin said...

Your situation brings a lump to my throut and a glaze to my eyes. I pray that in a year you will have your fusion and back to your old smiling self. You are such an insperation. My deafness has been a burden and they want to give me a bionic ear. A hole is drilled in the back side of your skull and a wire with bionic end placed into your inner ear. A magnet the size of a nichle attached to the inner wire is placed on the outside. An instrument like a hearing aid, but three times as large, is held behind the ear and the wire is connected by magnet to your head. I don't want to do it, who wants to walk around with a wire hanging out of your head with a large contraption behind your ear. Then I read your blog daily and think how silly, I could be wearing a head brace and in your moccasans. Keep your chin up V, we could both be Tim Russert. Life is precious...

God bless you,


By His Grace said...

Thank you, chuck! I love you and Laurene very much. I have a friend who had this ear procedure done and she is doing awesome, does cowgirl poetry, too!

You could grow your hair out like Willie Nelson, then no one would see the wire! I don't mean to make light, we all have our challenges. And they are all very valid to us, it doesn't matter what anyone else is dealing with you know? What WE are dealing with is the big thing because it is what WE are dealing with in reality! As it should be.

Hey, I've been around you enough to know you NEED that implant!! smile

Happy Father's Day, my friend.


Bosque Farms Fair Association said...

Virginia, I have been reading your blog and are such an inspiration to me. You are always positive, faithful, loving full of grace and so strong. I praise God for giving you all the above and being a part of my life and brought us together. I pray that I can continue to learn from your example and lift you up when your down. What a blessing you are. Love, Joleen