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PD Or LBD

A MyParkinsonsTeam Member asked a question 💭
Douglasville, GA

Has anyone that was diagnosed with PD had the diagnosis upgraded to LBD (Lewy Body Disease)? If so, what led to the change in the Diagnosis?

December 6, 2017 (edited)
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A MyParkinsonsTeam Member

My husband has had PD for about 14 years, and started having mild short term memory and cognitive issues about 4 years ago. These have developed into very significant issues that keep him from driving and from functioning "normally" on a daily basis. However, it by no means has rendered him incompetent. I also use the CBD oil with him (not to be confused with Marajuana, which contains the THC that CBDs do not). I am not sure how much it helps him, but I can tell you that it helps me. I also use an essential oil in a capsule from Dotera called Copiaia. It has a lot of the same properties as CBDs, and I swear by that.

July 2, 2019
A MyParkinsonsTeam Member

I use THC in the evenings, when my left side is most painful and cramped. It relaxes my body lots and I use a dose which doesn't get me too high. It has helped me to get through a very long Canadian winter. I use edibles - gummies, and then I know exactly how much I am taking.

April 6, 2019
A MyParkinsonsTeam Member

Great question! I'm dealing with this very issue. After seeing my neurologist/movement disorder specialist, she ordered some neuropsychological testing... I have a 3.5 hour series of testing scheduled for next week. My primary care physician said he personally believes PD and LBD are basically the same illness. I had my doubts until a renown Neurologist at Mayo said the same thing. There's an excellent interview on YouTube called Lewy Body Dementia - A Conversation with Robert Bowles. I could absolutely relate, and perhaps you will too. A couple of cautions: If you're being treated with one of the agonist meds, they can cause a medication induced psychosis that looks and feels like LBD, especially if you're about 60 or older. Second, undoubtedly many patients have benefited from a DaTscan. I had one, only to be told I didn't have PD. Ultimately a very senior neurologist and Parkinson's Expert examined the report and said the Radiologist had interpreted the findings incorrectly, and that I have the disease. It has been a long and arduous journey. I wish you all the best!

December 8, 2017 (edited)
A MyParkinsonsTeam Member

Hi @A MyParkinsonsTeam Member no mate, my first visit to the neurologist said I had the symptoms of PD and Lewy Body Demetia. Since then it has been confirmed only by the neurologist and now again was confirmed as getting worse. So as they have said we will monitor you and see how you go. I love their technical terms 😂

December 15, 2017
A MyParkinsonsTeam Member

Started CBD 5 days ago. Pain is completely gone. I take a dropper full each morning. I purchase it at a local SMOKE shop. I was the oldest one in the shop that day. Reminded me of 1970....

April 19, 2019

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