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 centralfloridalewybody@gmail.com (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.**

8 thoughts on “Difficult Diagnoses

  1. Thanks for this post Bob. My father died in 2016, after a fairly lengthy battle with Lewy Body Dementia. It was indeed sad to see the decline in this once-vigorous man, but can I tell a story about an occasion when he seemed able to break through the fog of his dementia? When he turned 90, he was well into the depths of the disease. But we arranged a gathering of family and close friends – about 25 people – for a dinner at his nursing facility. Near the end of the party, my mom called me over and said, sotto voce, “He wants to make a toast – what do we do?” Dad was barely able to speak at that time…but what the heck, it was his party, so we gave him the floor! And he put together about 3 complete sentences, saying very clearly (I paraphrase)…it’s been a long time since we all have been able to get together…thank you all so much for being here…I love all of you. Where did that come from? Perhaps a lifelong habit of gratitude, as a Depression baby and WWII veteran, who managed to thrive and prosper? Anyway, it remains one of my finest memories of dad, and taught me that even in the ravages of a disease like this, we may catch glimpses of the human being underneath.

    1. Michael, more details on my late partner from my first post…responding to your story: After over a year of her decline, I struggled to arrange three weeks in Scotland where we’d hiked and gone to the Edinburgh Festival.
      It was touch and go all the way, dealing with her anxieties and shifting interests for the itinerary. She took a wrong turn en route to Newark Airport and misplaced her rollerbag there! But upon arrival she was completely coherent, joyful and interactive with the many enlightened and charming people we met! It was amazing, just what I’d hoped for and our last hurrah. About a month after return her son arranged for a nursing home and within two months she was mostly mute (“My brain is broken” she said, though able to sing a couple of songs with visitors) and couldn’t move. Three months on, her body stopped.

  2. Yes, Bob LBS is awful and not uncommon. My partner at 75 began mental deterioration (getting lost, inability to read a calendar or add numbers), and became prone to falls in her dance classes. In a year she crashed her car, had wild fears and needed a companion and soon after, a nursing home. She couldn’t move and soon couldn’t speak and died within six months. Support from friends and professionals is key for the caretaker in this challenging process. Vastly increased spending on research might begin to find some answers/treatment…..

  3. Who can tell what awaits us. I try to live each day as it comes and love those around me all I can.

  4. My younger sister, a nurse, mentioned recently, with a nervous laugh that she hoped her youngest daughter would one day be able to take care of her.  Then, my own daughter shared that she needed to have at least one child – for the same reason.  Interesting.. I’ve lost loved ones to such tragic illnesses and my own medical history has been a bit of a roller-coaster. But although I have the same worries about dementia (sadly, alarmingly, it’s in my family as well) and other physical and mental disabilities, I prefer to imagine a future like the fictional old lady in the 1997 motion picture ‘Titanic’. After putting her affairs in order, she climbs into a comfortable bed, turns off the light and – young again – she joyfully rejoins her true love and the loved ones who went before.. Movie-magic? Maybe these images are unrealistic but habitually focusing my thoughts in this direction still seems a healthier, better bet than dreading the others. I do hope so… Thank you for sharing this difficult but important topic, Bob.

  5. Nearly every family has been or will be profoundly touched by the escalating effects of dementia. Mine has; doubtless so has yours.

    My now-grown daughter lives in another state. We average one phone call every other week. They are good chats yet they hew to a ‘what’s new’ agenda.

    As the catching-up inevitably draws to a close, we are charged with one fundamental task before saying our goodbyes: each must tell the other one thing about her or his life the other has never heard. We attempt to build on the cache of our personal knowledge of each other. We unveil a personal memory for the other to hold.

    Memories bind us to each other. Community is the building and sharing of memories — those made as well as those yet to be made. We own our memories and in turn, while we yet are able to do so, we place them in the care of others.

  6. Bob, I really enjoyed this post as it captured some of the things my uncle and his loved ones have been struggling with the past few years. We knew he had dementia and were saddened to see him lose his memory, his jokes and his stories about my late father. When I saw him in October at his daughter’s funeral he was very disoriented and confused. By April he had difficulty walking and after a few falls landed in the hospital. He just recently was diagnosed with Lewy Body and now resides in a long term facility. Thank you for shedding light on this common illness that many know little about.

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