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Lewy Body Journal: Our Family's Experience with Lewy Body Disease
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Stories, May 2017 (1 story)

Story 1. Received: May 14, 2017

Dear Lewy Body Journal,

Thank you for sharing your story. Our story is very similar. My husband, A, died this past March of LBD. He was first investigated for dementia in early 2011. He had never been sick and was only 68, a practising lawyer, an avid squash player and cyclist. On February 14, 2012, he saw the neurologist again, was diagnosed with senile dementia and told by the doctor that he had to relinquish his driver's license and stop work immediately. He was started on Aricept and referred to a Gerontologist. Over the next few months, the Parkinsonism symptoms began to appear and he suffered a couple of sudden falls.

A was cared for at home until the summer of 2014 when he had his first bout of aspiration pneumonia and was hospitalized for two weeks and then sent to a rehab hospital for 5 more weeks of physio. He was sent home with some home care a few times a week and we were able to get him into a daycare program once a week which he enjoyed immensely.

It was the Gerontologist who made the diagnosis and guided us through his illness with appointments every couple of months. A second bout of pneumonia a year after the first made it clear that he could no longer be cared for at home and he was admitted to a long term care home. We were so fortunate to get the home we did get as they have a wonderful dementia program and an amazing, caring staff. I now will be volunteering at that home in hopes of giving back a little.

LBD is a terribly devastating disease that locks our loved ones up in their bodies. Thank you for your journal and God bless you.

Ontario Canada

Other Stories Introduction
Stories, July - November 2016
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