Saturday, November 10, 2012

Cerebellar cognitive affective syndrome and why planning is so hard for me

It was November 2010, before anyone was able to put a name to the problems I was having with my brain. After my surgery in April 2007, my main issues were building up the ability to walk for 5 minutes at a time, making sure I ate enough protein, and controlling my tears. I found myself weeping if more than one person visited at the same time or if anyone stayed more than a half hour. It was frustrating because I did not feel sad but I could not control it. That made it embarrassing too.

Once I built up my physical strength, I began to sense that something was wrong. Insistent that I had not received change from my purchase, I argued with storekeepers. When I found the receipt and small bills in my wallet, I was shocked. It felt like a magic trick had been played on me. It was like someone took a reel of film and cut out some cells and spliced the pieces back together. The events that took place from the time I paid until I demanded my change simply did not exist. Rewind. Nothing. Terrifying. 

Misunderstandings piled up. I probed, prodded, inquired, and searched for meaning in what I was being told. It felt innocuous enough. "I don't understand what you mean." Why were people getting angry with me? I was confused.

The most puzzling symptom emerged when I went back to work in September of 2007. Setting up my classroom for the start of the year had become a mindless task after 20 years of teaching. That first day in my classroom, I found myself opening and closing doors and drawers, locating lists and looking at them, moving piles of books from one part of the room to another, until after 6 hours, I realized I had accomplished nothing. Before my brain-injury, I considered efficiency to be one of my strengths. For every task I had a system and with each repetition, improvements were incorporated. It is hard now to articulate what it felt like to be frozen in my classroom completely aware of what I needed to do and yet somehow, inexplicably unable to initiate the steps necessary to begin the process. This was my introduction to the term “executive functions.”

The brain controls all our functions, voluntary and involuntary, physical and mental, sensory and motor, consciousness and sleep, emotion and affect, metabolism and regulation. It is easy to assign roles specific parts of the brain. This helps us understand why an injury to a certain part of the brain affects specific functions. Executive functions are complicated and require communication between many parts. This term was my initiation to the world of brain injury.

For three years I struggled to make sense of how my problems could be explained by the location of my injury. My neurosurgeon said there was no way I could be having those symptoms based on where the tumor had been and bled. He told me this three months post-surgery, six months post-surgery, a year post-surgery, and so on. My neurologists and neuro-psychologists confirmed a brain injury with their tests but could not explain the myriad of symptoms.

Then I met Dr. Jonathan Silver. He gave me an article by Dr. Jeremy Schmamann, Disorders of the Cerebellum: Ataxia, Dysmetria of Thought, and the Cerebellar Cognitive Affective Syndrome. A name for what is wrong with me was comforting. It was not all in my head. I mean, it is, but I didn’t make it up. There is even a Wikipedia page for CCAS now.

“It is characterized by disturbances of executive function, which includes deficient planning, set-shifting, abstract reasoning, working memory, and decreased verbal fluency.”


Mark said...

This post was fascinating to me! I have felt that the doctors have been doing their best with me, but really don't have a clue as to what's going on. What you write has proven it to me.

Having lived with TBI for 24 years, I had always assumed that my difficulty in planning was a result of the frontal lobe damage I received. This is truly eye-opening!


Valeri Schmidt said...

I really hope you are still around here. For the last 18months I have been told that I should not have the sympstoms i do, "there is no reason" have you met with Dr Shuahhman from Boston? How did you get someone to listen? thanks!

Aly V said...


I was referred to Dr. Jonathan Silver in NYC where I live. He made the diagnosis. He knows Dr. S and all of his work. He did not think there was any reason for me to meet him. The diagnosis was such a relief for me. I knew what I was experiencing but I didn't know why. Things finally made sense. I hope you are somewhere that you can get the help you need. You have to be your own advocate. Good luck.