An interview with Misty Dickey on Advocacy for Lewy Body Dementia on September 22, 2023 by George Ackerman, Ph.D, J.D.
Misty’s mom, Lawana Jeanette Briedwell. Aug 1, 1945-Oct 1, 2020, pictured.
Biography
I have been married for 34 years. I work as a CPS investigator.
I go to college full time, and this is my senior year. I have 3 children and 9 grandchildren.
Please tell me a little about your background.
I’m (was) a daughter, a sister, a wife, a mother, a Granma/Nawnaw, friend and advocate for Lewy body dementia caregivers.
I was always close to my mom. She was my biggest supporter and cheerleader I grew up mostly in Oklahoma, traveling about as my bonus dad was in construction I married my wonderful husband 34 years ago and we have a beautiful family I have worked for the state of Texas for almost 6years and became an investigator a year ago when my mom passed away I started back to college to retain my bachelor degree and continue with my masters I spend any free time with my family.
Can you tell me more about your advocacy?
I began my journey with Lewy in 2016. My mom had dementia since 2011 but in early 2016 we noticed big changes. We went to doctors and had tests, and no one could tell me what was happening I did my own research and basically diagnosed mom myself No one was any help. I had to fight, argue, and advocate for my mother. I was a full-time caregiver.
Lewy body dementia
Lewy body dementia is not a single disorder but rather a spectrum of closely related disorders involving disturbances of cognition, behavior, sleep, movement and autonomic function.
In these progressive disorders, Lewy bodies (abnormal deposits of a protein called alpha-synuclein) build up in the brain. Lewy bodies in the brain stem cause a disruption in the production of chemical messengers (neurotransmitters) called dopamine. Too little dopamine can cause parkinsonism, a clinical syndrome that’s characterized by tremor, bradykinesia (slow movement), rigidity and postural instability. Parkinsonism can be caused by Parkinson’s disease itself as well as by other underlying neurological conditions such as LBD. These Lewy bodies are also found throughout other areas of the brain, including the cerebral cortex. The neurotransmitter acetylcholine is also depleted, causing disruption of perception, thinking and behavior. (Davis Phinney Foundation, 2023).
Lewy body dementia is an umbrella term for two related clinical diagnoses: “dementia with Lewy bodies” and “Parkinson’s disease dementia.” These disorders share the same underlying changes in the brain and very similar symptoms, but the symptoms appear in a different order depending on where the Lewy bodies first form (Davis Phinney Foundation, 2023).
What is your passion and how did you get involved in Lewy body dementia awareness and hope for a cure?
I started my FB Group in 2018. Lewy body dementia caregivers support group I never wanted another person to not be informed. To gain as much knowledge and support as possible
What type of goals do individuals with Lewy body dementia have when seeing your advocacy?
I’m not really goal oriented for Parkinson’s; mother’s Parkinson’s didn’t show up until later by then she was in a wheelchair.
What would you like to see as a future goal for your advocacy?
I’m just a group where caregivers can come. Gain knowledge of this evil disease They can vent, pray, give advice take advice, share their journey with no finger pointing or judgement, LBD is lonely for the caregiver.
Ask those questions no matter how small they may seem.
What events do you participate in?
I have done the walk against Alzheimer’s.
How does your advocacy also assist caregivers?
We are geared toward the caregiver, we give them a space that is available for them to ask questions, give them support, knowledge, a way to vent, and share their journey We offer prayer and friendship.
How can someone get in touch? What is your website?
https://www.facebook.com/groups/LewyBodyDementiaCaregiversSupportGroup/
How can others also become advocates for awareness?
Join groups, walk for a cause. Talk to doctors and start your own group.
If you had one final statement or quote you could leave for the Parkinson’s community, what would it be?
My statement would be more for the caregivers. You’re doing an amazing job! You are not alone! You just have to look and never stop advocating for your Loved one
Reference
Davis Phinney Foundation For Parkinson’s (2023). The difference between Lewy Body Dementia, Parkinson’s disease and Alzheimer’s disease. Retrieved from https://davisphinneyfoundation.org/difference-lewy-body-dementia-parkinsons-disease-alzheimers-disease/