Dignify Dementia Blog

Dear Friends, old and new,

I'd like to introduce myself and tell you a bit of my story, I'm Jenni and my dad, Jim is living with Lewy Body Dementia (LBD) with Parkinsonism. We got the official diagnosis in Oct 2018 - that was it, the neurologist just said, "I think it's Lewy Body Dementia," then he handed us a prescription for Namzeric and shuffled us out of his office so he could see his next patient. We didn't even get a pamphlet, All we got was a diagnosis and prescription and what felt like a swift kick out of the office. My mom, my dad, and I had all heard of dementia (of course), but we had no clue what Lewy Body Dementia was. Fortunately, I was also a neurological patient and I relayed our experience to my doctor as I was getting a procedure performed for chronic and disabling migraines. As a favor to me, my neuromotor specialist at the University of Colorado Health agreed to see my dad, and look over his scans and test results so he could offer a second opinion. He ultimately agreed that it was Lewy Body Dementia with Parkinsonism in Feb 2019. However, instead of shuffling us out, he explained why he concurred with the initial diagnosis, he went over my dad's CT results with us, he asked questions about my dad's emotional state, and if he was behaving differently at home and in public. He also asked about his physical state, for example, and finally, he asked about recent falls or balance issues. After all that, he explained that Lewy Body Dementia is the second leading cause of dementia after Alzheimer's. He told us that LBD is a disease where abnormal protein deposits, called Lewy Bodies that affect chemicals in the brain that cause problems with thinking, movement, behavior, and mood. After all this, we were referred to the Neuropallitive Care Clinic at UC Health where we've gotten the care we need ever since. It has not been easy, but the support this team offers not only to my dad but also, to our entire family has improved the caregiving environment in our home.

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Lewy Body Dementia Association

By Peter Brissette • April 19, 2025

Offers resources, education, and support for those affected by Lewy Body Dementia

The Parkinson's Foundation

By Peter Brissette • April 19, 2025

National organization providing support and research for Parkinson's disease

The Alzheimer's Association

By Peter Brissette • April 19, 2025

Provides support, education, and advocacy for those affected by Alzheimer's disease.

A hand holding an elderly person's wrinkled hand, black and white.

Today I feel greedy

March 28, 2025

Today I want to know exactly what caused my dad's dementia. I want to know what is making him lose his words, his letters, his numbers, his ability to count and to read, and to just understand basic conversations. I want to know so I can scream at it, punch it, kick it, swear at it, and tell it in no uncertain terms how astronomically cruel it is to a man that does not deserve this. My dad is not a perfect person, but he is a good man, he tried to be a good son, brother, and husband (and I think he still does), and he was (and still tries to be) a good dad and grandpa, but why, why, why does he have to walk through the rapidly hardening cement that is LBD just to make an effort. I'm greedy today and angry today and if I can direct those feelings at dementia rather than my dad, maybe I'll have a chance at forgiving myself for losing my patience with him earlier this am. To anyone out there having a day like mine with your loved one, forgive yourself, breathe, and slowly, but surely move ahead with your day. You have my positivity and support.