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teacher502 (@teacher502)

Speech, movement, sleeping with LBD..Ideas?

Caregivers: Dementia | Last Active: Aug 24, 2021 | Replies (14)

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@teacher502

He is in the Mayo Clinic LBD Research Study and they have run every test possible. We do this once a year. However, no one has ever mentioned Parkinsons along with the LBD, so I am wondering about this….we go back to Jacksonville the end of September. I was also wondering if some symptoms (hallucinations/nightmares, etc..) just go away or diminish?

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Replies to "He is in the Mayo Clinic LBD Research Study and they have run every test possible...."

Glad to hear he is part of the study. I joined 2 years back. Definitely pursue the Parkinsonism piece. That is where the movement disorder issues come from and all things Brady (slow).
Lewy body dementia (LBD) is an umbrella term for a form of dementia that has three common presentations.
One of which is “ Others will start out with a movement disorder leading to the diagnosis of Parkinson’s disease and later develop dementia and other symptoms common in DLB.”
To answer your question about hallucinations/ nightmares most likely likel wont go away. For me – the hallucinations are becoming a little more frequent – 3-4 times per month now. I am blessed as I understand it is most likely a hallucination afterward – but man does it seem real. Mine are critters like otters, geckos, spiders, sounds like voices and door bells, squeaking doors. I am blessed one again tht none of them are unpleasant. A little unnerving – espeially the door squeaking in he night from my closet door.

I know this is a rough journey. From “in here” we wonder about our future and worry about yours.

This is where I get the quote about the type of LBD:
https://www.lbda.org/is-it-lbd-or-something-else/
Also a good reference:
https://www.apdaparkinson.org/article/understanding-parkinsons-disease-dementia-lewy-bodies/
Peace
Larry H

My husband was diagnosed about 4 yrs ago. He has had REM sleep disorder. He has been on Nuplazid since Jana d it has really helped. We now get it from the VA.

It’s interesting that they haven’t mentioned Parkinsonism with the LBD diagnosis. These diseases go hand in hand. LBD is caused by Lewy Bodies forming in the cerebral cortex. Parkinson’s happens when Lewy Bodies occur in the motor cortex. Since there are no firewalls in the brain, it seems almost inevitable that these abnormal cells will migrate. My husband (diagnosed in 2018 with LBD) has had increasingly had more Parkinson like symptoms. Movement, bending, balance, bradykinesia and whispery speech are problems. Hallucinations have increased over time, and now he usually can’t differentiate between reality and hallucination. He just started speech therapy and while they may not be able to help him order his thoughts coherently (wishing for miracles here), they will be helping him with enunciation and volume. He also has REM sleep disorder, which is common in LBD and Parkinson’s. He has a similar history with service in Vietnam and PTSD, and sleep apnea controlled via CPAP. He still dreams violently but the CPAP does help him sleep better. All the best!

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