Lewy Body Dementia
I'm losing my mind.
Not psychologically, as if by mental illness.
But physiologically. My brain is dying. An overabundance of proteins is forming little pools or clumps in my brain. It is killing my neurons. Those electrically-charged neurons zip around feeding me information, helping me form thoughts, communicate, run, tie my shoes. Collectively, they are my mind. So, yes, I am actively losing my mind. Those rogue proteins have their work cut out for them, however. The brain has about 100 billion neurons.But, as I sit here writing, they are being picked off like tin targets in an old fashioned carnival shooting gallery. Ping, ping, ping. I feel an urgency to tell my story because I can't say for sure whether next month I'll even remember writing this. Such is my very complicated disease. I wrote a few months ago that I had been recently diagnosed with Parkinson's disease. I lived for months with that diagnosis, more or less coming to terms with it: I am a Parkie. Or so I thought. Then, new symptoms pointed to something much worse. It appears, after extensive testing and observation by specialists (five at last count), that I have Lewy body disease(LBD), also called Lewy body dementia. Lewy body disease is like Parkinson's and Alzheimer's combined. Lewy bodies (the culprit behind the disease, named for a Dr. Frederic Lewy) are primarily made up of those rogue proteins, also called alpha-synuclein proteins. The disease works and presents like Parkinson's. In both cases, these proteins kill neurons. It's just that with Lewy body disease the proteins are killing neurons over a wider swath of the brain.Both diseases are marked by tremors, stiffness of joints, muscle spasms and other movement disorders, that vary patient to patient. Both diseases also come with dementia. With Parkinson's, dementia, if it comes at all, usually comes in its late stages, sometimes decades later.
The big difference is that with Lewy body disease, the dementia comes early, sometimes before any movement disorders are noticed. With Lewy body disease, dementia is often accompanied by hallucinations and REM behavior disorder, which cause people to physically act out their dreams, hitting, kicking or talking. Despite Lewy body disease being the second leading cause of dementia after Alzheimer's, it is not well known, lacking a high profile celebrity advocate such as Michael J. Fox for Parkinson's disease.
The suicide death of Robin Williams raised awareness of Lewy body disease after his widow blamed symptoms of the disease and a late diagnosis as contributors to his death.
It's a difficult diagnosis, made by trained and systematic observations over time. The only definitive diagnosis can be made at autopsy by actually seeing the Lewy body build-up in the brain.There's some debate in the scientific community about whether Lewy body disease is just a more extreme form of Parkinson's. They are diseases on the same spectrum - but early diagnosis is important as it guides the best treatment.
Parkinson's patients have lifespans that are close to the national average. Muhammad Ali lived to be 74 after three decades of living with Parkinson's.
Lewy body disease, on the other hand, comes with a shortened life expectancy: Five to seven years on average after diagnosis, according to the Lewy Body Association.
The Mayo Clinic says eight years. I'll go with Mayo.
So, I'm 57, that gets me to 65, if indeed the Lewy body dementia diagnosis holds true. But really worse than lifespan concerns is the very real possibility that my quality of life will spiral downward as these Lewy bodies kill my brain cells.
I'm calling it a 'possibility' because I am holding out hope for the best. I hope it is super slow to progress; that my 100 billion neurons will organize and fight back against these protein hordes; that a cure will be found just in time.There are cases in the scientific literature of people who upon autopsy were found to have brains that indicated Alzheimer's disease yet during their lives they showed no symptoms. Researchers say their brains apparently found "work-arounds" to the plaques and tangles that are believed to be the root of Alzheimer's.
So that has me hopeful and encouraging my neurons: Come on you lightning quick neurons, put the Stephen Curry crossover on those proteins and get to the hoop. So far, so good. Like Parkinson's everybody's disease is different. I hope and pray that 15 years from now, I'll be writing a column saying: "Guess what? I'm still kicking."
As for my current health, I'm on numerous medications which sometimes leave me a little spacy. My short-term memory is not at its best, but I'd say I'm functioning at a relatively high level, doing my job, playing basketball and enjoying walks around the neighborhood with my wife, Catherine.
I sometimes have 'Lewy moments,' as my wife likes to call them, where I stare off into space. I'd like to say I'm thinking about what's important in life: relationships with people, the creation, and God. But actually, it's probably more like the Sling Blade scene where one of the movie's characters asks Billy Bob Thornton what he is thinking: "I was thinkin'. I'm gonna take me some of these French fried taters home with me."
They say my abstract thinking will diminish. Does that mean I'll see things more like Norman Rockwell, not Pablo Picasso? I like Rockwell all right. His work is grounded in a traditional reality. However, I'd have to say in my current state, my thinking has been more in the day-glo colorful vein of Marc Chagall or Henri Matisse or Paul Gauguin.
It's when it turns into a Fellini movie that I may need to adjust my medications. A few minutes later I go to work leaving the apple in the grocery bag on the counter. I call this forgetting what I remembered I forgot.
After processing and coming to terms with the ruthless degenerative disease that is Parkinson's, my family has been blindsided by this probability that I have Lewy body disease. Whether they thought about it in this way or not, my daughters seemed to know it is bucket-list time for Dad.
I am also in danger of losing what they call my "executive function" capabilities. This basically means multitasking, absorbing various sources of information and making complex decisions. How this manifests: I'm getting ready for work, looking for my two cell phones. I walk into the kitchen as part of my search, I see an apple and think I would like to bring that to work, so I start looking for a little grocery bag to put that and other snacks in. My dog barks from outside, wanting in. I let my dog in and go upstairs to brush my teeth. My wife asks if I have found my phones.
"Oh shoot," I say.
Mike Oliver is a veteran journalist as editor and reporter in investigative work, health care and politics. He started at the Birmingham News in 1982 out of Auburn University and went on in 1987 to work for 12 years at the Orlando Sentinel, followed by 10 years at California's Bay Area News Group (Oakland Tribune, Contra Costa Times). He came full circle in 2011, returning to AL.com/The Birmingham News. He is married to Catherine, a Presbyterian pastor, and has three grown daughters.