The Neurologist we saw gave us a preliminary diagnosis of Moderate Dementia associated with Alzheimer’s disease. I don’t know what I was expecting from this Neurologist, but it certainly wasn’t the bum rush knock down diagnosis followed by a hasty exit that saw us leaving the office struggling to grasp what was happening as we tried to calm a very distraught man.
Having been handed a life changing diagnosis, we were left to navigate our way towards comprehension and to realign ourselves to a new reality. I immediately began looking up and reading anything I could find that might give me a hint as to what we were looking at going forward. Turns out there is no straightforward answer. There are many different types of dementia. One’s journey through this maze will be as unique as the person making it. There are commonalities between the types of dementia, things to look for that might clue a body in to where one is. There are stage markers but the line between stages is blurred. Alzheimer’s is the most prevalent form of dementia and possibly the best mapped and understood. As the disease progresses there are markers that determine what stage one is in. The stages are defined and numbered. When I studied these, I was not convinced we were dealing with Alzheimer’s disease.
Of the types of dementia I read about, one kept popping up. CTE, chronic trauma encephalopathy. Many of his symptoms and the rapidity of his decline seemed to fit this box better than any other. CTE cannot yet be legitimately diagnosed until an autopsy is performed, but his array of symptoms fit here better than any other.
CTE, chronic trauma encephalopathy, a form of dementia that comes on in late life after years of contact sports became the most likely form of dementia we were dealing with. CTE can claim one at any stage of life after repeated blows to the head. With my spouse it appears we are dealing with late life onset, characterized by dementia. My spouse played monster man on defense on his high school football team and was proud he put out at least one a game with his ferocious defensive hits. He also ranked in the top 10 in karate magazine as a fighter for many years in his 20’s and 30’s and he trained many fighters over his 50+years in the martial arts. I would say he took more blows to the head training in the dojo than he ever did in the ring competing. All this took a toll. And today we are paying that rate.
After our disturbing and unhelpful interaction with the neurologist we saw our family doctor, under her care we were able to get some positive traction. She asked if there had been any trauma that might have set off what we were seeing. There had been, my spouse had been given some personally devastating news that he had been unable to accept or deal with. We now believe this kickstarted what became a precipitous decline over the past couple of years. Any intense stress can influence and possibly damage an already fragile infrastructure. The brain is incredibly complex and already under stress from the repeated physical trauma the psychological stress proved to be a catalyst that sent my spouse spiraling over the edge.
As more cases of CTE are encountered, research is ongoing and new advances are being made. At the moment my spouse’s diagnosis is based on the array of symptoms and his history of contact sports. His symptoms include a 180 degree personality change, hallucinations, aggressive behavior, short term memory loss, loss of executive functions, fear of being alone, paranoia sleeplessness, and some loss of fine muscle control so far. We are treating with some medications that have alleviated the worst of the aggression and hallucinations. We are wrestling with the fear of being alone and his loss of short term memory and fading long term memories. He is unable to operate his iPhone, use a TV remote, or make simple decisions on his own. We live in the moment. He doesn’t know what day it is or even what time usually. He can dress and self care with reminders to bathe thrown in. He knows where he is and enjoys low stimulating environments best. We are trying to get the most out of our days while we have days left to us.
MrsSmithsLifeUnexpected 