Hi Reva, it's a roller coaster. I'm so sorry. And it doesn't seem as though any of these diagnoses are clear cut, even to experts. @A MyParkinsonsTeam Member is right that they differentiate PD vs LBD sometimes based on which came first, motor problems or cognitive/memory ones.

My mother has Lewy Body and Parkinson's, and after the shock of hearing the diagnosis we just had to go back to dealing with whatever symptoms and the never-ending medication adjustments. Life kept going.

I remember hearing the terrifying prognosis that Lewy Body moves very quickly. The experience of others and knowing what MIGHT happen in the future can be helpful, especially with planning for the worst, but ultimately it's an individual fight and situation. Someone with LBD and PD who exercises their body, social skills and brain - along with the right medications - might enjoy fuller capabilities for longer than someone without LBD who stop socializing and sits in front of the TV all day eating badly.

Sorry for the long note. I guess, I just mean to say, don't panic, or give yourself permission to panic for awhile if you like. Information can be scary, but the point of knowing more is so we can improve our lives, not stall them.

Mentioned Users

A MyParki...

I think they are very similar dementia’s with similar symptoms. Parkinson’s Disease dementia is usually diagnosed after you’ve been experiencing symptoms of PD for at least a year while LBD occurs earlier in the disease.

Thankyou so very much! All of you. I will get this figured out. I don't have any movement symptoms yet. I have hallucinations which makes doc think it's LBD. And too much protein in the blood cells. So...you guys.....thank you again. You all say the nicest things. You warm my heart and calm my soul. God bless all of you, @MyParkinsonsTeam users... Ullman, @MyParkinsonsTeam users... . and @Theodoradeste.
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A MyParki...

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Reva, Iam praying for you and hope the tests go well.
I really dont have more to add. Testing once done you will know where you stand
And you will be able to make plans. Please stay with us. We care about you!!
Kathi

Hi Reva. My understanding is that Dementia with Lewy Bodies is on its own. One can have Parkinson dementia which isn’t an absolute but the dementia is without Lewy bodies which are a specific protein involved. If I may ask how certain is the doctor and has he done any testing?
Teresa