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Top things to not say to a brain tumor patient...

So over the past few months I have experienced some pretty dismissing comments. I'm actually amazed that people would say these things ...

Wednesday, March 23, 2016

I Have a Diagnosis!

The answer is Cerebellar Cognitive Affective Disorder, in my brain, with poor information processing and retention. Cerebellar Cognitive Affective Disorder


My personal favorite bits include such information as:


"Impairments of executive function include problems with planning, set-shifting, abstract reasoning, verbal fluency, and working memory, and there is often perseveration, distractibility and inattention."


"Deficits in spatial cognition produce visual–spatial disorganization and impaired visual–spatial memory. Personality changes manifest as blunting of affect or disinhibited and inappropriate behavior. These cognitive impairments result in an overall lowering of intellectual function."



Additionally for some of my dear ones who struggle with being told that symptoms are imagined or there is no reason to have such changes:


"Underdiagnosis may reflect lack of familiarity of this syndrome in the scientific and medical community. The nature and variety of the symptoms may also prove challenging. Levels of depression, anxiety, lack of emotion, and affect deregulation can vary between patients."



Treatment methods include Cognitive Behavioral Programs. (I had used a cognitive-behavior program for 10 years in a treatment model prior to my diagnosis.)

"The current treatments for CCAS focus on relieving the symptoms. One treatment is a cognitive-behavioral therapy (CBT) technique that involves making the patient aware of his or hers cognitive problems. For example, many CCAS patients struggle with multitasking. With CBT, the patient would have to be aware of this problem and focus on just one task at a time. This technique is also used to relieve some motor symptoms."



There is no cure. I won't wake one day and magically be better. I, and others like me, fight to recover from our injury and adapt to issues for the rest of our lives. Increased fluidity may follow repeated practice of coping skills and may improve over time. There is nothing that says that all I have is all I will ever have, but the body is limited in how much and how completely it can heal. No one can exactly predict what this is, I intend to push as far as I can go.

NCBI Publications

God bless you.

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