I received an email this week from the wife of a friend who had just died. He was a victim of Parkinson’s Disease along with Lewy Body Dementia. (I’m not a doctor and I don’t even know if I’ve stated his diagnosis correctly). He was always a free spirit, enthralled with life in all its abundance, committed to social justice and an enthusiastic supporter of and participant in the arts.
Having encountered Lewy Body Dementia only once before, I needed to do some research and so I checked in on the Mayo Clinic’s website: “Lewy body dementia, also known as dementia with Lewy bodies, is the second most common type of progressive dementia after Alzheimer’s disease dementia. Protein deposits, called Lewy bodies, develop in nerve cells in the brain regions involved in thinking, memory and movement (motor control). Lewy body dementia causes a progressive decline in mental abilities. People with Lewy body dementia may experience visual hallucinations and changes in alertness and attention. Other effects include Parkinson’s disease-like signs and symptoms such as rigid muscles, slow movement and tremors. Lewy body dementia is progressive…Death, on average [is] about eight years after symptoms start.”
Eight years may be the statistical average, but this was not the case with my friend. I last saw him two years ago, he was fine—no mention of this devastating (and spreading) illness and no signs of cognitive impairment—and so, it was shocking to hear that he had passed (in my only previous encounter with the disease, her decline was similarly swift).
And this news came just a few weeks after another friend was diagnosed with Alzheimer’s Disease. This energetic social justice warrior and profoundly curious man promised, upon learning of his diagnosis to be “the best person living with Alzheimer’s that there ever was”—a fitting and touching paean to celebrating the fullness of life right to the end—whenever that may be—and typical of his zest for life.
Parkinson’s Disease, Alzheimer’s, Lewy Body Dementia (an autopsy of Robin Williams revealed that Lewy Bodies prompted his suicide)—these terms seem to be occupying an outsized space in my consciousness these days. I guess I fit that demographic now. And, since suffering some cognitive impairment six years ago as a result of a traumatic brain injury, the subject of declining mental acuity has been a fascination for me—watching, waiting, wondering if and when I, too, will face the dynamics that increasingly seem to be confronting my peers and their families.
In these posts I often address the latest headlines, political intrigue, domestic and international challenges that we face and the responsibilities we have as individuals to enhance the quality of life in our world. What often goes unreported (in both these posts and in the nightly headlines) are the slow-moving trials that unfold in the lives of families, friends and loved ones who minister quietly and patiently to those who ever so gradually slip into the inability to care for themselves or communicate their inner feelings and fears to others. These care-givers are truly among the unsung heroes of our day and for whom we should be forever grateful. We never know when their patience and forbearance may be needed by any one of us.
**For information about support groups for those diagnosed with Lewy Body Dementia and their care partners, contact Central FL Lewy Body Support Groups at firstname.lastname@example.org (914-589-2004); Sue Bouder, Coordinator/Facilitator and Florida certified Dementia Trainer. Although based in Florida, because of its virtual format, groups are open to those from across the US.**