Wednesday, November 30, 2011

I am grateful today.

Last night I went to a new brain injury support group. I liked the people and there was pizza. The leader does not have a brain injury so there is actually some kind of order. The last time I sat down to post on my blog I was very upset. I had been asked not to return to my previous support group. The leader did not think the group was "a good fit" for me. I think she just does not like me. I can understand it. She reminds me of all the brain injured traits that I display. When she talks I hear myself and it is disconcerting. I talk too loud or too much. I ramble or elaborate excessively out of fear that I am not being clear. So, I was asked to leave the group because I was being too brain-injuryish?
In the new group nobody talks too much. People listen and respond. There are enough people so you get a balance of responses. The dogmatic are tempered by veterans with more balanced views. And, best of all, there is humor. I laughed hard a few times. I feel pretty good about that.

Monday, November 7, 2011

Cerebellar Cognitive Affective Syndrome

I read an article this weekend about CCAS, the brain injury type that is the cause of my disability. This excerpt was of particular interest. I wonder if anyone else thinks this sounds a little bit like me. Hmm...

"Following the uneventful surgery for resection of the benign mass, she was noted to have a marked personality change, becoming disinhibited, disrespectful,  and childlike. Testing using the simple tools of behavioral neurology revealed impairments in working memory, perseveration, distractibility, and lack of mental flexibility. She also showed deficits on visual spatial performance.
Over the next few months her mother recounted that the patient would report inability to make a sandwichnot knowing what to do first, and in what order. With time she improved many of her abilities, but executive functions remained impaired, and the next two decades have revealed a pattern of personal choices, psychosocial interactions and judgment that have left her requiring regular family intervention to provide support and safety.
This combination of mood and personality changes with the cognitive impairments that could be demonstrated on neuropsychological testing were the first indicators of the persistent pattern of executive, visual spatial, linguistic, and affective impairments in the remaining 19 patients that we studied prospectively over the next 6 years, and which we identified and named the CCAS."

I might have been able make a sandwich but I could not pack a bag. My first day back at school in August 2007, I was reduced to tears because I could not figure out what to do to set up my classroom. I sat crumpled on the floor crying and confused. I thought I was just tired. It wasn't until spring break that year when I tried to pack for a vacation to Cancun that I started to see a pattern. I was up all night and in the morning, I could barely close my suitcase. When we got there I found I had no t-shirts, no toothbrush, and no underwear. I did have a number of empty cosmetic cases and ziplock baggies. I also had more books and crafts than I could possibly use on a week long trip. Nothing like this had ever happened to me. Doctors still said I was probably depressed or distracted because of the brain surgery 11 months earlier. I knew "depression" was not the cause but I did not no where to turn. 
What a long and bumpy road it has been to get here but here I am. For now, I remain optimistic about what may be ahead. 

Oh BTW I can make a taco, at least a taco costume. Here is Tess dressed as a taco for Halloween:

Lily was a mummy.

Aren't they so cute? I love my girls!

My best girl was Rock Lobster: