Specter

Post-it note found on a garage door.

Post-it note found on a garage door.

I've made a lot of changes in the past year, some came instinctively others presented themselves as I've opened up to a more active state of listening. Lifestyle changes are a vital part of my shift in the past several years - among other things like diet and self care. Sustaining long periods of anxiety or stress isn't helpful for anyone, but if it means it might harbor an environment for this disease to present itself, I'd rather play offensively rather than defensively. My father was 47 when his symptoms started to manifest more prominently (it was 1992, I was 11), far ahead of medical research on diagnosis. In fact, this disease only started to be diagnosed in the mid-1990s, after discovering Lewy Bodies in the cortex of post-mortem brains of a group of dementia patients. 

If my time frame is similar to my father's, I have ten years to make art, make a life ... make it all matter. It's challenging to make plans, dream, or think beyond my own life making when the sand is draining from the glass in such a taunting way. "How can I know for sure?", you might be asking, and that's exactly why I refuse to shrug off this specter that lingers in my future - because I'd rather not wait to find out. 

How much change is necessary? My affection for caffeine is moderate, but I have considered removing it, sometimes chastising myself for such hyper awareness and increasing physical restrictions. However, I cannot deny the mental sharpness and obvious increase in energy when I briefly stopped drinking coffee a few years ago - I was like a toddler fresh off a 4 hour nap. By the late 1990s my father had removed a lot from his life, both dietary and lifestyle. He was on the defensive, chasing any potential solution or remedy, and despite all his efforts over the 22 years he fought with Lewy Body Dementia, the specter took him at 69.

Terry's journals

Terry's journals

His decades of journals aren't contemplative reflections or 'Dear Diary' entries, but instead regimented documentation of everything he did each day - Fastidious notes cataloging food intake, dosages of medications, scheduled activities, energy levels, etc. He even created a timeline document of significant health concerns dating back to when he was a child - searching for answers beyond 'depression, anxiety, chronic fatigue, sleep apnea'. Early on he would take this timeline with him to doctor appointments. To him, those were symptoms of something much bigger lurking un-diagnosed. In July of 2014, after a month in the hospital and a month before he passed away, he looked at me and tearfully asked, "Am I dying?" 

I'm 37. I've started a 'grown up' life on three separate occasions. I've left occupational positions, ones that brought me great joy, to care for my dad, and recently I've done it again to care for myself. This is my offensive, my clandestine effort to challenge a fate that lives inside me; part of recognizing how stress affects my brain is slowing down enough to listen. The deeply coiled horror that was my young years, witnessing my father unravel in front of me, is a story of its own. The journey to tend my own story is just beginning.

"Hereditary forms of LBD have been found only in rare circumstances, of patients with strong family histories of Lewy Body disorders (i.e., multiple generations with multiple individuals with dementia with Lewy bodies or Parkinson's disease). [...] Unlike genetic risk factors, some environmental and lifestyle factors that increase disease risk can in theory be changed relatively quickly. Unfortunately, as of this writing, only a handful of studies have looked at preventable risk factors for LBD. Those studies suggest that LBD risk is increased in people with histories of depression, anxiety, or stroke, or a family history of Parkinson's disease, and people who drink less caffeine than average" Lewy Body Dementia Association | Caregiving Brief, Genetics.

More information:
How childhood trauma affects health across a lifetime By Nadine Burke Harris
How stress affects your brain - Madhumita Murgia