Thursday, November 10, 2011

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.


Anonymous said...

I have experiences some of the same things you have - my daughter's seizures started before she was a year old, and through many different medications and test, there is nothing to show why she has seizures. The medications control the seizures fairly well but she because her most recent seizure occurred with the required amount of medication in her system, I am concerned again and really want an explanation. No one (her doctors) really seem concerned at this point but I'm with you - I want answers, I want an explanation as to the root of her seizures, and I want a cure!!!

Trish Hughes Kreis said...

It's hard not to just want the magic answer to stop the seizures for good. It sometimes takes quite a while to find the right combination of medications, surgery or other treatments. Don't give up hope - Robert's neurologist said there are a couple of new meds coming on the market in 2012. There are also new research studies which hopefully will give us some answers. You're a great mom to keep pushing for answers for your daughter and to keep a close eye on her and her seizures. Don't give up!

Leslie said...

I am looking forward to the new medications as well. The old reliable meds aren't doing the trick any more. Friends like you help keep our hopes up in a not-always-friendly world.

Trish Hughes Kreis said...

Leslie, Please let me know if you try the new meds. Robert's been on so many different meds in his life and it's always a balancing act since the body gets used to them after a while. I'm happy you stopped by -- never give up hope, Leslie. Take care.

Anonymous said...

Roberts story is like my son's Jason's story in so many ways. It's been a frustrating, stressful and heartbreaking 40 year journey to watch Jason decline alittle more each year. But, we do what we need to, to keep Jason safe, happy and involved in Life.

Linda Andersen

Trish Hughes Kreis said...

Linda, Jason & Robert's story do sound very similar. It sounds like you are wonderful parents to Jason -- he is so lucky to have such loving parents. It's very difficult to see the decline in Robert, too. I would like to keep in touch since their paths seem to be so similar. Take care.