October is Lewy Body Dementia (LBD) awareness month. Susan Schneider Williams, the widow of Robin Williams, described Lewy Body Dementia as “the terrorist in my husbands’ brain.” This is a perfect description of how LBD kills its’ victims. It attacks and disables cognitive functions, causes hallucinations and delusions, and cripples the body with Parkisonian symptoms. Ms. Williams editorial is available in the most recent issue of Neurology. In her editorial, she describes how Robin suffered from extreme anxiety, delusions, tremors and difficulty reasoning. He was unable to remember his lines in his last movie, when memorizing pages of dialogue had once been easy for him. They went from doctor to doctor seeking a diagnosis. The autopsy of his brain showed an unusually severe case of LBD. She has asked for help for increasing LBD awareness, improving early diagnosis, and research into more effective treatment.
Like a thief in the night, LBD steals the personality of your loved one. I remember saying to a good friend “I want my husband back.” He never came back. I lost him to LBD, a progressive and deadly disease. LBD is very personal to me. I watched my husband go from a vibrant, funny, quick witted, very physically fit man, to a man who could no longer smile or ride bike. Rogers face became like a mask, and I begged him to smile. At the time, I thought he was depressed. I didn’t know about the mask of Parkinson’s. Then came the falls on his bicycle. He commented that he had fallen more in the last few months than he had fallen in years. He tried to hide his failing memory, but I was aware his memory was declining. He couldn’t manage his medications, so I took over. He was fastidious about his money and it seemed he didn’t care much anymore. I found mistakes and omissions, and managing the money became my job too.
And so began the difficult journey to a diagnosis. Roger was depressed, Roger did not have Parkinson’s, and then a diagnosis that seemed to fit; traumatic brain injury. Months earlier, Roger had fallen, hit his head, and was briefly unconscious and confused. He had a CT scan that did not show any bleeding in the brain, so he was deemed O.K.. His symptoms seemed to begin after his fall. I was relieved that we had a diagnosis and that rehabilitation was likely to improve his cognitive and motor skills. Sadly, he did not improve after months of rehab, and finally he was diagnosed with dementia. I remember the awful feeling that my world had turned upside down and my husband had a terminal illness.This was a battle we would not win. Roger died November 1, 2015. Although Ms. Williams and I have never met, we are bonded by the horrible pain of Lewy Body Dementia, and our inability to stop the disease.
Lewy Body Dementia afflicts 1.4 million people in our country. Even though it is the second leading cause of dementia in our country, second only to Alzheimer’s, many people have never heard of it. A common question is “Lewy who? Education about LBD is desperately needed. Not all dementia is Alzheimer’s! Patients with LBD are likely to have hallucinations, problems with movement resembling Parkinson’s, and fluctuations in alertness and cognition. Patients with Alzheimer’s are less likely to show these symptoms. It is very important to diagnose LBD early because of drug sensitivities that can harm or be fatal to LBD patients. Conversely, drugs frequently prescribed to Alzheimer’s patients (Aricept, Namenda and Exelon) can be more effective with LBD patients. There is much more to learn about Lewy Body Dementia and I am happy to share what I know. You can use “Comments” to contact me. Check out lbda.org for
comprehensive information on LBD. I hope a majority will soon be able to say “I know Lewy.”
It’s time to stop the “terrorism” of Lewy Body Dementia.
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Wow…terrorist in the brain. Powerful and informative. Thank you.
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