Piecing Together the Puzzle of the Brain

Robert has had uncontrolled epilepsy his whole life.  At 46 years old now, after numerous head injuries (even with a helmet – yeah, that’s a neat trick), surgeries and medications, Robert is not quite the person he used to be. 

Robert finished high school and even took a few community college courses many, many years ago.  Now, he falls asleep reading a book after two pages (I’m trying to not take that personally since it was my book) but he can finish word search puzzles like there’s no tomorrow.  Most days he can’t remember what he had for lunch and sometimes he even forgets he ate lunch (even though he always enjoys eating it).

Robert was able to ride bikes when we were kids, figure out the bus system as he got older (he never was allowed to drive although our dad let him drive once because he was irresponsible that way) and was able to walk for miles to the mall or to the movies.  Today, he uses a walker to keep his balance, drags his right foot while walking and occasionally (okay, often) trips. 

For many years, Robert was able to manage his own medications (taking them and picking them up from the pharmacy) and all of his doctor appointments.  That would be virtually impossible today and so he has people give him his meds on time and I take him to his appointments. 

The decline in his motor function and cognitive ability has been dramatic when comparing him at age 20 to now at age 46. 

I want to know why.  Is it the uncontrolled seizures?  They can, after all, cause brain damage.  Is it all the head injuries?  Perhaps the medications are clouding his “normal” functioning?  Maybe it’s something else completely.   

Robert’s neurologist gave us a referral to a Memory Specialist and to a Neuropsychologist.  The appointment with the Memory Specialist was on Halloween; we see the Neuropsych in a couple of weeks. 

We (as in I) filled out a lengthy form before the visit and answered a gazillion (I counted) questions about family history, present behavior, past accidents and surgeries, current medications and goodness knows what else. 

The Memory Specialist arrived in the tiny exam room with another neurologist and a med student.  The three of them sat across from us and asked Robert several questions, glancing over in my direction every now and then for confirmation of his answers.  They asked him to remember 3 words but he only remembered one after being given multiple choice answers.  He couldn’t remember the city he lived in but remembered his brother lived in Danville.  He knew the date but thought it was Sunday instead of Monday.  He didn’t know the party affiliation of the president but guessed it was “the American party.”  He did some math problems (subtracting backwards, mainly) and I was a little worried about this section myself (because, of course, I was silently answering all the questions and remembering all the words just to be sure I could).

Robert was asked to write a sentence.  I had no idea what he would write or if he would be able to do so and I was fretting like he was taking the SAT and his college career depended on it, but as I glanced over at his glacially slow handwriting, I saw a sentence take shape.  “God loves you.”

Of course.  What else would he write except maybe, “God Bless You?”

The doctor then did the physical exam and it became very obvious very quickly that Robert has a huge vision gap on his right side (that explains so much – running into people, doors, anything on his right side!).   The field of vision on Robert’s right side is so compromised that he couldn’t see the doctor’s fingers when he held them up.  This was probably the most useful information I got out of the appointment because it’s information all of us can use in order to help Robert make safe decisions when walking around.   Heads up to those visiting: don’t stand to his right!

The appointment lasted much longer than anyone expected (close to 3 hours).  The neurologist repeated several times that Robert is a “unique” case.  He finally told me that he doesn’t think Robert has dementia because he scored a 21 – 24 out of 30 on the dementia test they were performing (from what I understand, 30 is normal).  My research indicates this is mild dementia but the doctor doesn’t really think that’s what Robert has going on.

Because Robert’s case is so unique, the doctor thinks Robert has 3 – 4 things at work.  The uncontrolled seizures and the medication can certainly be contributing to his cognitive and physical impairment but he also thinks Robert is showing signs of Atypical Parkinsonism.  The symptoms are like Parkinson’s disease but “atypical” because that isn’t the primary diagnosis.  There could be several factors underlying this condition. 

The appointment left me with more questions instead of explaining what is going on with Robert and pinpointing “this one thing” that we could fix.  I know it’s crazy but some part of me still wishes for a magic diagnosis and solution that would help Robert.  This magic solution would stop his seizures and stop his cognitive and physical decline.  

I told you it was crazy.

The doctor didn’t make any changes to his medications (actually, I’m relieved about that since we’ve had so many bad experiences when the meds change).  The doctor wants to see him again in a year to do these tests again and compare the results.

In the meantime, we’ll see the Neuropsychologist later this month and we’ll see what magic she may hold.

It’s hard to let go of crazy.