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I was recently diagnosed with LBD with Parkinsonism: Any advice?

Parkinson's Disease | Last Active: Jun 5 8:34am | Replies (83)
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@psvantx

What is LBD? I’ve just been told that I have frontal lobar deterioration…not Parkinson’s!!! I had never heard of it, but apparently it’s worse than P! Anyone familiar with it???

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Replies to "What is LBD? I’ve just been told that I have frontal lobar deterioration…not Parkinson’s!!! I had..."
Colleen Young, Connect Director | @colleenyoung | Dec 27, 2021

Hi Psvantx, LBD stands for Lewy Body Dementia.

It sounds like you have been diagnosed with Frontotemporal dementia (FTD). Is that right?

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Larry | @larryh123 | Dec 27, 2021

Hello_ I am an LBD patient with atypical Parkinson’s. I as well started off with a diagnosis of PD. As time went on other things started cropping up. after neuropsychology testing and meeting with a few non movement neurologists I was changed to LBD. I still have Parkinson’s like symptoms. So they call it atypical Parkinsonism. “Normal” Parkinson’s is idiopathic.

All of this can b.e very confusing _ especially if your doc just leaves you’d with a diagnosis without anything else to go on.

Yes _ LDB can have an effects on the frontal lobe. This has been noted in my tests.
LBD can be confused with FTD by docs that aren’t real experienced.

https://pubmed.ncbi.nlm.nih.gov/18797258/

Other good reading.
https://pubmed.ncbi.nlm.nih.gov/18797258/

One of the best places to start learning more is the Lewy Body Dementia Association.

https://www.lbda.org/

My advice Take a deep breath. Take time to learn what you can
From REPUTABLE sources.
Write down your questions. Take those questions to your appointments and make sure you get them answered before the appointment is over.
Also keep a journal to document weird Things. Like getting lost “one that got my attention”. forgetting, mood swings, stiffness, muscle cramps / spasms, grooming / hygiene , etc. You get the idea. All of these things are a great way to let the doc know what you are seeing as well as to help you track things.

My neurology at Mayo has been great. Always take the time to answer my questions _ and there have been many over years _ even outside of appointmenTs via the portal.

Peace
Larry H.

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