Dad Diagnosed with Lewys Bodies

Discussion in 'ARCHIVE FORUM: Support discussions' started by thhome, Oct 6, 2006.

  1. thhome

    thhome Registered User

    Oct 6, 2006
    Today my dad was diagnosed with Lewys Bodies. I have been scrambling on the internet to better understand what all this means. The doctor has prescribed Exorin (?sp?). Everything I read doesn't sound like my dad. He has been getting more mixed up lately but not to the extent of not knowing where he is or who people are. I am not sure if i am in denial on this or maybe things are alot worse than I think. He has not halucinated as far as I know. He does have tremors. I am just not sure if we should get a second opinion or not. What have others experiences been?
  2. zak

    zak Registered User

    Sep 29, 2006

    my friends dad has been diagnosed the same and she is at the same point as ypu. my dad had been given medication for dementia ,arcipet then remynol and like your dad, he has not got all the symptons, my dads scan came back as clear the other day so we still are not sure what he has, like you i have felt in denial and went through the emotions as im sure many on TPhave,, i cant really advice you but im sure others on tp can but just to let you know we are here for you. try and keep yourself together, its hard i know but finding this site will help you i promise. i only found it the other day and im so glad.. i have a lot to ask but have not had the chance yet.\ hope to speak soon
  3. linda a

    linda a Registered User

    Jun 13, 2006
    Lewy body

    Hi my husband has this he was dignosed early this year i found he forgot things saw things that wernt there, lots of papers all mixed up, driving very badly but his moods like a roller coster,and his walking was very bad,
    He had a brain scan and thats it ,Lewy body im told his moods can change very quickly, and they do
    he will be 70 in a few days time,
    I find it hard because we have a big age gap and a teanage daughter,
    I find somtimes im talking to him and i think he understands then it can be like talking to an akward child,
    I hope you find all the help you need i was told i have a very hard time ahead of me at the hospital, im very frightend at times i cry i shout then i get on with it but i have found there is s lot of help Alzhiemers coffee mornings are great people who live with this and know what its like not just tea and simpathy all the best with dad Linda a
  4. TinaT

    TinaT Registered User

    Sep 27, 2006
    Lewy Body disease?

    Hello there,

    I am also a new member of TP and have found it to be most helpful. It is so good to have a place to go to when you have had a good/bad day, or you have queries etc. and to read about others who are in a similar position to yourself.
    After a year of my husband being diagnosed as an Alzheimer sufferer he has 3 weeks ago been given the diagnosis of Lewy Body disease. Like you I searched the internet (and found this wonderful forum). Also like your observations, he does not have hallucinations and does not have marked mood swings, nor noticable 'good and bad days'. He has some leg tremour, some rigidity, and problems walking and has severe memory problems and needs 24 hour care for his daily needs.
    Like yourself I was concerned that he did not have all of the considered important symptoms and asked his specialist about this. She assured me that Lewy Body does affect differing areas of the brain. Different people are affected in different ways but all have Parkinson type symptoms to varying degrees. As I understand it my husband is suffering from disease in at least two areas: his 'deep' brain which affects his movement and his 'higher' brain which affects his memory and ability to function.
    Hope this helps you but it is only my own observations from the point of being my husband's full time carer.
  5. KenC

    KenC Registered User

    Mar 24, 2006
    Co Durham
    Hi thhome,

    I was diagnosed with this in 2003 and was later put on Exelon the same as your father.
    Lewy Bodies is one of the rarer diseases and there is very little information about it any where. The Alzheimers Society does have some information which is quite good and there is some on a seperate website which is dedicated purely to this one particular disease and that is the Lewy Body Society which is based in London.
    I only know this because I get involved with these people as well as working as a volunteer for the Alzheimers Society.
    I think you have to remember that each form of Dementia is different, and yet each form has many different symtoms which may or may not be obvious. I know quite a few people with Lewy Bodies and we all seem to have different symtoms, which is odd but this is why it is so hard to pick up in a diagnosis proceedure. I think Exelon does remove the hallucinations which is good, because I have not had any for a long time, just horrendous nightmares and dreams. That is something that I will have to put up with as it is better than hallucinations any day.
    I hope that this has helped you.

    Best Wishes

  6. mollie1

    mollie1 Registered User

    Nov 20, 2007

    When my mum was diagnosed the changed were very subtle we thought she was putting it on and I have heard others say the same, it is a very variable condition and treatment options are out there I personally think 2nd opinions or specialist opionions are valuable Good luck
  7. Jimcy

    Jimcy Registered User

    Feb 21, 2008
    Lewy Bodies

    Hello, my husband has Lewy Bodies but only agreed last year before it was thought to be Alz. Good days /bad days..recently big dterioration in mobility..Parkinsonianism kicking in yes language all over the place sometimes with me sometimes not. Our consultant warned against medication for the Parkinson bit as it would increase hallucinations ( he has what I like to call imaginative moments at present but if awakened suddenly may be very confused as to what is happening and have fainting episodes = vasavagal or even a bit aggressive ) also has violent shaking moments at night. Aricept was impressive to start with (began in 2005 when Alz diagnosed)consultant said it was found to have good effect and still holds things together I think.I now have to have helpfrom an agency (known to SocServ) and sitter for shopping spells via Alz Support local group during the week as I can no longer wash him on my own safely or count on him coming out in the car with me so feel a bit less trapped and pressured.Paying for it via the Att All. Will have to use his savings if I need more help help seems to be a minefield. I picked up a good American site on Lewy Bodies on Google which gave very helpful pointers. Thank goodness I found this forum..great to share the problems Jimcy
  8. TinaT

    TinaT Registered User

    Sep 27, 2006
    #8 TinaT, Feb 21, 2008
    Last edited: Feb 21, 2008
    Ken, my husband, also has LBD and is treated with Exalon (Rivasigmine). Like others who have posted, he was first diagnosed with AZ and then 2 years later, after a visit to a specialist neurology unit, he was diagnosed as LBD. He does not have hallucinations but does imagine he sees small things, fluff etc., on the floor or table and tries to pick them up. He has mobility problems and often walks with a pronounced 'lean' to one side. He also does not 'see' stairs or steps, and becomes very fearful when walking from one area with one coloured floor to another area with a differing colour. We have problems when we are waiting at a zebra crossing for instance, where the pavement changes from one colour to another.

    I 'trawled' the websites and found that my husband was not 'putting it on'. It is a symptom that sufferers cannot follow instructions, and are unable to do simple things such as cutting up their meal for themselves (depending on the severity and areas affected of course). My husband now has 24/7 care for all his basic needs and can do nothing for himself. He often has 'restless leg' syndrome and unless asleep is unable to sit without moving one of his limbs - not exactly treamours but fidgeting type movements.

    One tip to carers of LBD., fight and fight like mad to get the higher rate mobility allowance. You are entitled to the higher rate of mobility allowanace if under the age of 65. It took me 6 months, letters to my MP, and a lot of heartache but I did finally get the higher rate component. I had to get physiotherapists reports and a letter from my Social Worker to back me up. I also asked for, and got, a physiotherapist to visit and give Ken some simple muscle toning excercises and also got a wheelchair so that we could go on walks. He has no problems moving around a supermarket or a couple of shops in the town centre where he can rest, but is unable to walk much without having a sit down rest.

    As has been mentioned, LBD affects the 'deep brain' concerned with mobility and movement, and also the higher functioning brain concerned with memory and speech. My husband's speech is now very limited as he cannot remember the words he needs and is then so busy trying to find the words that he forgets what he was talking about.

    Ken remembers all his family, by name. This worried me for a long time and I too, thought he must have been misdiagnosed because of this. He has deteriorated greatly over the last two yerars but even now, knows his immediate family and always asks me the same stock questions about them. It is almost as if he has this same list of questions in his brain about his immediate family. He does not know the names of the nurses on his ward, or any of the other patients and doesn't recognise them at all, despite being on the same ward and with the same people for the last 7 months.
  9. lesmisralbles

    lesmisralbles Account Closed

    Nov 23, 2007
    Lewy Bodies/ Parkinson's

    Hi everyone
    My Husband, Ron, was told he had Parkinson's about 12 years ago.
    He was told he was lucky, as his age then was 72. And for several years all we had was mild shakes of one hand. Then. about 5 years ago th sh-t hit the fan. Fall's, memory getting bad, then about 2 years ago, driving got bad, had to stop.
    It is a very perculiar illness this Parkinson's.
    Last year, 07, just before christmas, Ron was told he had LEWY bodies - Some day's good, some day's bloo-y aweful. Some day's can walk a little, shop's etc. Some day's I cannot move him out of his chair. Some day's I can shower him, some day's not. BUT, he does know all his relatives, but cannot form a sentance, because he forget's what he was going to say. Yes Tina, I agree with all you said. Ron is on NO medication for the Lewy bodies. He was having terrible night terror's, people in the bed, thing's in the wardrobe, children playing in the bedroom. I do not know why, but for the past few weeks these have now decreased. I am waiting the result's of some tests and will post with any info I can.
    Luv Barb X
  10. KenC

    KenC Registered User

    Mar 24, 2006
    Co Durham
    #10 KenC, Apr 19, 2008
    Last edited: Apr 19, 2008

    When I was 56 I was diagnosed with Early Onset Lewy Bodies in 2003, I confess that I really did not know what it was, and the first consultant was not very helpful, but the second consultant explained it well.
    But through being a volunteer with the Society, I have found that there are many variations of each Dementia, and Lewy Bodies is no different to the rest. I actually work with another person who has this, and we both have very different symptoms, so it must be a nightmare for the Doctors to work out. I was given Exelon by the second consultant and although I really did not expect it to work, it gave me my life back, for how long I do not know, but anything is better than what I had before. This medication does not work for everyone as there are many side effects which have to be considered. I still have rough days like everyone else, but I think we just have to try to take each day as it comes. What does not work one day may well be a doddle the next, but there is nothing that we can do about it. I have found that many jobs are difficult some days, while they are easy the next, even jobs which I have done for may years can be hard to work out at times. Exelon does remove the hallucinations, but I am still left with the graphic nightmares, which can go on for some time. But I get around those most nights by staying up till around midnight or later as they only seem to happen between 11pm and 2am which is odd. My hearing has also become very accute, but not everyone gets that thank god. The Society is producing a booklet about Lewy Bodies and that is brilliant. I can say that because I actually read it before it went into the Publishers. There is also another website which is solely dedicated to Lewy Bodies in the UK and that is the Lewy Body Society and they are very helpful.

    I hope this has been of some help.

    Very Best Wishes

  11. lesmisralbles

    lesmisralbles Account Closed

    Nov 23, 2007
    Hello Ken

    Thanks for the info
    Ron cannot take a lot of the medication on offer because of his heart.
    I have reduced his modopar, for his Parkinson's, the doctor last year told us this was causing the hallucination's.
    Now, he has none.
    What to do next?
    Barb & Ron

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