Hi there, you and your Mom will be in my prayers. When hubby was diagnosed w/Parkinson in 2012, I never heard nor was it mentioned about Lewy Body dementia. we are in the last stages and Lewy Body is compromising much of the care I’m able to give him. Check out the sites online for Lewy Body information, and also Alzheimer’s Assoc. they have much needed support groups where you can find out you aren’t alone. ChrisD is correct in mentioning its not like Alzheimer’s, and each person’s experiences are different, but it is NOT easy. Good Luck. Keep asking questions and demanding answers. Get a knowledgeable healthcare team and nurses that are sympathetic. Join a support group so that you can get suggestions and ideas that work for others that just might help with what is going on with the here and now. I found a lot of help from others in similar situations, much more than from nurses & MD’s, even the neurologist team. Seems like they help only during their office hrs. and writing a script for another pill. 🤞 Good Luck. PS make sure others in the family will be ready to help give you the support you and your Mom will need in the future.

I never heard that phrase before! I just Googled it and there is a lot of info. I feel overwhelmed (I am caregiver), but will read as soon as energy returns. Will also be curious if people on here have experience with this phrase and diagnosis! Hang in there, JeanHaznor. PS: I don't know if My Parkinson's Team will allow a hotlink but I found the first article on WebMD -- I searched under Parkinson's Plus....there appear to be 4 sub-types. Yipes...

I have heard of Lewy Body dementia, associated with Parkinsons but it is mild and certainly nothing like Alzheimers. Carer here too.

I have an upcoming appointment at Mayo regarding Parkinson’s Plus. My neurologist suspects MSA-C, one of those + conditions. I’ve been diagnosed with cerebellar ataxia for 6 years (lack of balance, ataxic gait, nystagmus, double vision, vertigo) but now after my DatScan I head to Mayo. I don’t have any traditional Parkinson’s symptoms except a very slow gait…no tremors. It will be good to have it thoroughly evaluated.

I was told I have Parkinsonism with Lewey body dementia