Has anyone on here been given an opinion based on MRI and DaT scan results that it might be Lewy Body Dementia even with no signs of dementia and even though they tick all the boxes for PSP?
Also do we have to have the patient's consent for brain donation or can the family decide?
Hi my father has PSP and Lewy bodies too, doctors say that maybe both at the same time hi its in 6 stage of 7 ( in Sapain there are 7 phases in others countries 4 but its the same )
my father was diagnosed by Datscan too and doctors says that lewy and psp was there
its horrible cause they are very similar and drugs are diferent but no one works
his eyes are iced, no blinking
no walk
dont eat normaly
falls all time
is rigid all time
has hallucinations etc etc could you tell me your history i don meet people here wiht lewy and psp....hugs from spain
Hi Marusela, My mum started the falls about 6 years ago and her eye troubles began about 3 years ago, staring, double vision. She started to slur her speech about then too. She becaime too dangerous to be in her house so I moved her to sheltered housing 2 years ago. Her falls became too often and more dangerous and she went into a care home 8 months ago but I go every day. She had a Urine infection in August and it left her very weak so she had to go to the nursing floor.Then she got Shingles in her eye so poorly again. She has just had another urine infection and it looks like she is in end stage but she has come back before so we have to wait. Her swallowing and speech are terrible now so this might be it. She had no dementia or hallucinations so far. She is 77. Very healthy until this. she has all the symptoms of PSP but the scans say it could be either. She has only seen the neurologist once as she has been poorly for each appointment.It's so sad to see them like this. She is sleeping or yawning all the time. Her voice is a whisper and she says about 2 or 3 sentences a day when she is at her brightest. Sometimes she can't even move her head or say yes/no. we have to use blinks.
Hugs to you from England. Do you live near Coin? we have friends there,
Dianne x
Hi thaks a lot for your answers...well now my tears want go out of my eyes, because i feel that im not the only one, we have the same situation, only that my father (83) lives here in my home , you know, doctors in other time used to say, that he was perfectly only bad in balance, was a medical error, when i went for my father to live wiht me , we were to a neurollogist that diagnosed PSP and LB ,what a terrible life for them....all you say its all i live too....there is nothing to do but accep it
Coin its too far where i live its beautifull ( MALAGA) nice place
I hope in Spain one day be a Fundation for PSP patiences we feel so lonely
keep in touch here, every day try to read this website its the only way i have to feel better
HUGSSS AND THANKS ) 
We must have been chosen so that we could look after them. I feel sad for mum when she looks at me as if she wants to say so much. It makes me cry too. It will be such a relief when this ends but I don't want her to go. She burst out laughing at something I said today, she loves to laugh and have fun. Even though PSP association and help are getting better here in England there is no understanding in the area where we live (Medway) and no groups for me to go to. We are hoping for some training but I think it will come too late for people to understand mum. I was going to have her here at home but I can't give up work as I have to pay the mortgage and we would need someone to help at night. I would like to talk to you more because you understand the pain.
Hugs back and thank you too x
Dianne
PS I think mum is stage 5 or 6 at your level but not sure yet until she is better.
no problem, here we can keep in touch and tell us what happen with them, the stage of my father maybe its penultimate, doctors says me that he will stop walking in netx future, now his legs are likes spaguettis, get no balance, talk very very bad sometimes and cant read, i put him audiobooks for he listen them and dont be tire...the worts is hallucinations close to night, and its when he wakes up alone imagining something and hears an horrible noise and find him at floor because he fall over backwards...ufff i have got two childs ( 9 and 6 years ) i dont work because i have to care of him and its very dificult for me share everybody at home, my husband try to help me but he works a lot and its tired. one year spend to now and i feel so sad because my father has no his personality its other person and when he suffers this changes and get aggressive its horrible because he used to be so sweet....what a pity of situation only have to accept it be patience and let them go without pain and dignify.... be strong you are no te only one...here wen can find and talk about it... a hug for your mum NEVER GIVE UP although be painfull she and he would do the same for us 
yes you are right they would do the same for us. I think my mum is same stage as your dad. She has stopped walking since the intfection and they are hoisting her in and out of bed. Her left hip is sezing up and she has pain if she stays n bed. She has a recliner chair that lets her lay back or sit up so it is a change from being in bed. My children are grown up- one is 28 and the other is 30. I have a 3 year old granddaughter from my eldest daughter and they are in America until Feb 2014 because of her husbands work. My sister works in London and is not home until very late. So I gave up my teaching job to look after mum and do teaching at lots of schools for an agency so I can be home by 4pm or have days to be with mum longer.
My husband is very patient and he cooks for me so that I can eat when I get home at 6.30.
I am also tired from everything and it makes it harder to be strong as you find too.
I just say it wont be forever and that keeps me going knowing I am doing my best for her.
Mum has not had hallucinations. Do you have a service that will come and sit with your dad to give youa rest? Over here we have various organisations. If you have PSP association out there ask if they can help to find someone. You need to rest. A hug for your Dad too. x
Hi again let me tell you that in spain social services are also being cut significantly and they cant help me now, maybe futher will come to home a person for one hr at day, but no more at the moment.....its to sad.....i will want to donate his brain but i dont know how, i will comment to his neurologist :).......... good week for you
Hi My husband was first told it was lewy body then PSP and last one was C B D he passed away 4 weeks ago ad he wanted his brain to go to the brain bank wou have to have all the paperwork in place or they cant take it i live in Ireland not sure if it is different in other countrys .Ihope in the future it will help soneone not to have to suffer this cruel illness keep strong .
mary could you tell me please when was the final phase you live with him and how it is, i so alone and i want to be ready, i dont want you remember whats hurt you only what you can tell me and you think help me thanks a lot. from spain.
Thank you , my sister and I are in the process of finding out who best to contact as there is a choice-PSP association/Parkinsons and we had heard that you have to pre plan it. Have you been given any idea of how long it takes to find out which he actually had?
Although knowing will make no difference to the course the illness takes it would at least help us know what we are dealing with if people could give a definite diagnosis. .Although we can't be sure until post mortem as you say it may help others in the future.
Hi Marusela My husband had been in a nursing home for the last two years where he died i could no longer give him the care he needed at home we were very lucky the care he received was amazing it was like his other home since June he was getting chest infections and recovering without meds he would have been very fit before he got cbd each person is different my husband had a very strong heart he was 63 years old and he was able to do in the last few months was smile wish you could get some help where you are take care Mary
wow, thank for sharing this...i hope you feel in calm , my future shows dificult but somebody have to do it, thak u for your history, lewy bodies plus psp its too much for a person, in one year my father stoped being himself and its too sad when remember how he was yesterday....send you hugs THANK
Hi daughterno 1 I was told it can take up to three months for results to come back it was not something i wanted but when my husband was still able to make choices for himself he made it known to his doctors i did not want anyone to touch him after all he had suffered . I am now glad i did what he wanted if you live in the uk you can get in touch with the brain bank . i am in Ireland and we now have a brain bank here they were very helpfull and i could have changed my mind at any time hope this helps take care Mary
Thank you, it was very helpful as I didn't know we could change our mind, although I am sure we won't. But it must make you feel less worried that you have made a bad decision . I had a reply from the Parkinson's people today and they are sending the relevant paperwork. My sister and I are the opposite-we want to know as we are adamant mum has no dementia but Lewy Body is predominantly dementia from what I have read. It just makes me want to know as I feel they are guessing really and that is not fair. It is bad enough never knowing what is round the corner or how long they have got without the diagnosis being guessed! I realise they are still trying to find a cause and so on. but we just want to know that we were right with our own observations!
update-the PSP association rep said that there is a form of PSP that presents with Lewy Body in the frontal lobe and shows all the symptoms of PSP without the dementia associated with Lewy Body. We are arranging to donate mum's brain for research when the time comes. It can surely only help in the future.
PSP and LBD
PSP and mini strokes
PEG tube dementia/PSP - end of life
Reflux and PSP
