1. JuneH

    JuneH Registered User

    May 22, 2015
    After four plus years of chasing around doctors and specialists my handsome intelligent husband has been diagnosed with Lewy Body Dementia. The decline in the last year has been horrendous. He was physically compromised anyway due to a RTA many years ago. He knows what is going on and is trying to fight it. I suppose I'm lucky in that he is not in any way aggressive but the full time care/watching is exhausting. As far as I understand Lewy Body is slightly different to other dementia in that you have the Parkingson symptoms to cope with. Having always avoided prescription drugs he is now on Rivastigmine, he has also started taking Ginkgo biloba, probably all too late. Is there any way back from this?
  2. Kevinl

    Kevinl Registered User

    Aug 24, 2013
    Hi June, welcome to TP
    I've put a link in below to the AZ society fact sheet on DLB which I'm sure you'll have found anyway, but just in case..
    I suspect although it was never diagnosed this was what my mother had although it was never fully investigated due to her age and infirmities and I never pushed as them, the most important thing to me is dealing with the reality not necessarily knowing the "name of the beast". (other people feel differently).
    She had the Parkinson's like symptoms and the visual hallucinations (big time) so I guess that's what it was but even the AZ fact sheet says "A diagnosis of DLB is largely based on the symptoms" so it's only an opinion, best guess or whatever.
    The second link is to NHS Choices where they review Gingko, in their conclusions they say "there is no evidence suggesting that Ginkgo biloba can prevent or slow dementia". I'm not knocking it but if you want to try using "alternative" or yet unproven medication then there is a lot of "evidence" and opinion that Turmeric and coconut oil (oil not milk) can help. I'm willing to try and incorporate a bit of anything that might help in our diet and so I've gone with them as they're easy to incorporate into many meals and neither seem to have any adverse reports. if someone wants to sell you something that you can't get in a shop walk away, there is so far no magical solution.
    Now you've made your first post come back and talk, we do bite but we take our teeth our first:eek:


  3. allwayshopefull

    allwayshopefull Registered User

    May 22, 2015
    Hi June,
    Sorry to here of your situation. But always be hopeful there is a way back. There is always research going on and things being tested, with any luck it will be in time to help our loved ones. I know it's hard being a full time carer, I see my mum doing this everyday and not wanting to accept any help, but there is help available if you need it but you must speak to your doctor and if you need a weekend of respite then take it. You need to take care of yourself first in order to be able to take car of him. Big hugs take care x
  4. JuneH

    JuneH Registered User

    May 22, 2015
    Thanks for bothering to reply. Let's hope more research and understanding will happen in the future. Getting respite care is not so very easy, many hoops etc. believe me I'm onto everything. Hope your Mum and you are well whilst dealing with this and taking care of yourselves! X
  5. patsy56

    patsy56 Registered User

    Jan 14, 2015
    Fife Scotland
    Welcome June, my husband had Parkinson's and I am sure it is going the dementia way,

    Welcome o TP and you take care.
  6. henfenywfach

    henfenywfach Registered User

    May 23, 2013
    Hi june

    Firstly i must apologise. I replied when you posted and checked my phone ages after and it was still sending. (im due new phone couple of weeks)...hence it didnt send.
    I care for my dad who has dlb. Hes had for few years. Like many took ages to get diagnosed.

    The general gist that things can change from minute to minute..is absolutely spot on. Hes constantly in a different place or mood. Even people who know about dementia know very little about dlb. The factsheet from the alz society is fab and factual.
    Services find helping someone with dlb hard. Someone in ss when i tried to explain dlb to her..said we cant possible run a service that changes from minute to minute. I replied well how come i have to be able to manage it?..i also read the info on the dedicated association or society.

    The support from the alz society has been great...
    I only wish all of our family understood it or even helped with it more..

    Dlb is definetly underdiagnosed and even not the most common its surely keep us on our toes. 24hrs a day.
    Best wishes

    Sent from my GT-I9505 using Talking Point mobile app
  7. JuneH

    JuneH Registered User

    May 22, 2015
  8. JuneH

    JuneH Registered User

    May 22, 2015
    Thanks for replying.
    It seems bizarre that lbd is not recognised sooner. How long before your dad was diagnosed after initial symptoms? I've read that it is the 2nd most common form of dementia.
    Families are strange, even the closest daughter (37) is hiding from the reality.
    All the best
  9. allwayshopefull

    allwayshopefull Registered User

    May 22, 2015
    Families can surprise you . Unfortunately everyone deals with things in a different way. Your daughter may be in denial and this can take a long time to change and will be tough. I remember when my dad was first diagnosed with vascular dementia , I would talk like there was nothing wrong and was quite dismissive of how my mum was feeling. She would keep 'moaning ' as I would call it at the time ,I would try to defend him and she would end up getting angry with me and crying, saying I don't understand as only see him a couple if hours every day and she was with him all the the time, she had no life and I felt was trying to give me a guilt trip. Then one day she was really ill and I had to look after him, then the reality hit me of what was happening and what she was going through . I hope you don't have to get ill for her to realise this. It might be a idea to get her to join these forums so she gets a bit of a reality check

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