Registered User
Jan 3, 2006
Hi everyone, this is my second thread. I just wanted to find out if others had much experience of Lewy Bodies Disease?. I have just had a diagnosis on Monday from the Doctor and it was difficult for him to say excatly what type of illness my mom has.
Looking at the symptoms and the rapid decline in her and similarities to alzheimer's, I was expecting it to be Vascular or straightforward Alzheimer's.
Lewys seems to be associated with Parkinson's and I wasn't expecting this.

Also, because mom is hallucinating, stumbling and other things, it seems that she is more than likely displaying the symptoms of Lewy Bodies disease.

I have been told that she will be allowed some medication as I know this is a lottery at the moment, but this may only slow things down.

Can anyone tell me if the medication helps and anyother experiences?

Thanks, I am feeling a little shell shocked at the moment.


Registered User
Jun 3, 2005
Hi Olly, and I'm sorry life has dealt you and your Mum this cruel blow, whatever label is eventually put on it.

I can't help with the information you want, but just wished to offer a hand of friendship & sympathy.
I'm sure someone with experience of a similar situation will come back to you soon with some useful answers.


Registered User
Feb 24, 2006
Hi Olly

My mum has both Parkinson's and dementia. We have been told at various times that she has multi infarct (which I think is now called vascular) dementia, Lewy bodies and Alzheimers. I personally think that Lewy Bodies is most likely to be the correct diagnosis, not just because she has Parkinson's but because of what I've read about the symptoms of all three types of dementia. I do find it quite confusing though because I don't think Parkinson's and Lewy Bodies always go together - you can have one or the other or both - and I believe some people are diagnosed with Parkinson's when in fact they 'only' have Lewy Bodies.

I believe there is a factsheet on this site about Lewy Bodies which may help. I can't really comment on the medication as my mum has never had any specifically for the dementia. She was diagnosed quite some time ago and I don't think there was as much available then. However, I am sure you will get other replies which will be of more help than mine!


Registered User
Feb 22, 2006
sort of north east ish
Hi Olly

Sorry to hear that you're struggling with this too. My dad was diagnosed with Lewy Body dementia about a month ago ...... similar reasons, hallucinating, rapid decline, unsteady on his feet .... also initially huge variation in how confused he was.

There's a yahoo discussion group specialising in Lewy Body at


If you go there, check out the links section where there's stacks of links and info.

Also check out


The big thing with Lewy Body and medication is to make sure they don't get any of the anti-psychotics and tranquilisers cos it makes them worse ..... My dad was prescribed Exelon, but was soon taken off it because the care home were questioning whether it was making him more agitated. The Alzheimers Society have a leaflet about these medications ...... I was sent one in the post when dad was diagnosed but I think they're also available online through the main website.

best wishes



Registered User
Mar 7, 2004
Well done Aine, on your reply. I am sure Olly will find some help there.

Such confusion with the Lewy Body diagnosis. Hope you find some help Olly.

Regards, Connie