Lewy Body, How I Hate Thee

22 Feb

In honor of my uncle and on the 1st anniversary of his passing…….

You may not have heard of Lewy Body Disease but next to Alzheimer’s it is the second most common type of dementia-related illness in North America.

Individuals with Lewy Body dementia can be paranoid as well as have hallucinations involving people, children, and animals. They are also likely to have tremors and walk with a shuffling gait similar to what you would see in someone who has Parkinson’s disease. It is difficult to diagnose and frequently mistaken for Alzheimer’s disease.

Uncle Leo, Uncle Benny, and Uncle Hy, circa 1956.

Uncle Leo, Uncle Benny, and Uncle Hy, circa 1956.

The three gentleman in this photo were my father’s brothers and my favorite uncles (the woman with them was my grandmother).  They’re all gone now.  Benny was diagnosed with Lewy Body disease at 91. But it’s possible he had it long before he became noticeably unwell. While Leo was previously diagnosed with Alzheimer’s disease, it’s likely he really had Lewy Body disease too.  Leo died in 2011 two months shy of his 90th birthday. All but his last six weeks were spent at home with family.


Uncle Benny was never married and did not have children.  Of the last 10 years of his life, he spent six of them in a very nice retirement home.  The final four were in a not-so-nice City of Toronto long term care home. In his later stages, he would see people who weren’t there and throw punches at caregivers because he thought they were trying to hurt him. He attempted to throw a few punches at me too, but I was never afraid of being injured. That’s because he had shrunk down to about 100 pounds due to paranoia about the food being poisoned. The institutionalized cooking hardly looked appetizing, but it was the Lewy Bodies that made my uncle think the staff was trying to harm him.

My Uncle Benny was like a father to me and I spent a lot of time with him over those years. They were extremely hard to watch. He was 95 years old when he died on December 5, 2012.  As much as I miss him, I’m relieved his battle with dementia is finally over.

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3 Responses to “Lewy Body, How I Hate Thee”

  1. lifeonmylane February 24, 2013 at 10:58 pm #

    I’m sorry for your loss. My Mom has Lewy Body Dementia so I understand some of what you went through with your uncles. It is such a horrible, ruthless disease!

  2. Ismenia Silveira March 1, 2013 at 2:09 am #

    I am sorry Judi.
    My mom appears to have Lewy Body Dementia. She is currently in a long term care facility in Toronto. She began with hallucinations and then the tremors came later. The treatment has been the same as that of Parkinson’s disease. I sympathize. It is awful.

    • dementiadeli March 1, 2013 at 3:11 am #

      Ismenia, I am so sorry. Lewy Body is an absolutely retched disease. I had no idea you were going through this too. It is so hard to watch the people we love loose their grip on reality. If you ever just want to talk, please give me a call.

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