Lewy bodies

I visited with my disability attorney on Thursday, one week out from my hearing. Her mother had PD, so I believe she has a special interest.

She made the statement to me that after viewing all of my records, she feels that I have more than PD, esp. in relatiohship to the cognitive issues. She told me that her mother was diagnosed with Lewy body dementia. I looked it up briefly, can cause cognitive issues, hallucinations, etc. Can be lucid at times and then remember nothing. Which I have experienced along with hallucinations.

Apparently, there is no test for it, is found on autopsy and is associated with Parkinson's disease. Just wondered if anyone had this subject discussed with them. There are some meds that might be affective that are used with alzheimers. I don't like the thought of dementia, guess no one does, but I know my symtomes have increased rapidly over the last year. More fun!

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  • I responded to a previous post in which you mentioned cognitive problems & planned to get back to you to share experiences dealing with cognitive deficiencies.

    A few months after dx, my neurologist referred me for neuropsychological evaluation. Results indicate cognitive deficiencies in executive functioning (planning, organizing, prob.solving, memory,concentration, visual motor perception...) severe enough to indicate PD isn't the only cause. Although my neurologist mentioned dementia in my medical chart, he never discussed details with me & backs away from cognitive questions, defering to a psychologist to address cognitive issues.

    My research on cognitive deficiencies led me to a Speech & Language Therapist trained in cognitive mediation therapy. This treatment is little known now because insurance stopped covering it over ten yrs ago claiming it wasn't effective. Helped me significantly but guess insur. co's don't see value in adapting, coping & doing one's best. Just see that our cognition worsens over time. Medicare is covering my therapy thanks to medically necessary forms submitted by my physician & therapist.

    During my next appt. with my neurologist in Sept., I'll be asking about med's for cognition/memory. I'll let you know what he says. I took aricept for a yr or 2 around 2003. Not sure why I was taken off during a change in doctors in 2005. Don't remember noticing a difference. Know other med's are now available for cognitive deficiency. Would love to hear from parkies & caregivers who have had experience with any of these med's.

  • Thank you Joy,

    They now have a CD available from SS with all of the information they have gathered from doctors and for me, my last two employers. I started seeing a psychologist when going through my divorce years ago and have continued due to all of the other issues. He actually cares enough to see me at no charge since AI have not had insurance over the last few years.

    In his report, he did have a diagnosis of early dementia that went along with what my attorney was saying. The crazy thing is I can remember some things vividly, but then have absolutely no memory of others. A good example is a movie I may have watched in the last year and have no memory of a single scene in it, but can tell you exactly what happened in another.

    My psychologist mentioned several times that I was highly intellligent and if it were a good day, you would see no sign of it but on a bad day it is very apparent.

    From what I read, they now use some of the same meds used for Alzheimers. Some studies show effectiviveness others do not. I know I am too young to be demented!!!

    Currently, I have no insurance, but might be interested to hear more about the therapy you are using. Also, as you have asked, if anyone else out there has dealt with this issue and found anything helpful, please feel free to share. Susie

  • hello

    My understanding is that Lewy bodies are not only found in the brain, but also in the gut (and possibly the heart). So perhaps a gut biopsy would reveal them?

    As mentioned in a recent post, my partner no longer suffers from some of the worst symptoms of Lewy Body disease (terrible agitation and delusions) as a result of homeopathic treatment.

    As for conventional meds, he was prescribed Aricept but it is very hard to say whether it helped - by contrast the relief brought by homeopathic remedies has been enormous and has occurred before my eyes hundreds of times.

    I hope this helps a little

    Partner

  • My husband has PD as well as cognitive issues - first told Aphasia and then Lewey Body - so don't really know which one or maybe both. He's tried Exelon Patch, Aricept and Seraquel with none of those working for him. What Homeophathic treatments are you trying? Would love to get him off of any meds and do things more natural because I feel meds can harm you more than help some of the time. Have tried the coconut oil and COQ10 but they haven't helped either.

  • Can't get the link to Raven to work -- so

    As I understand it aphasia (losing the ability to communicated verbally) can be part of Lewy Body disease as well as other diseases. My partner has it - at one point he couldn't speak at all - now our conversations are very gradually improving,

    We have used many different remedies as things have changed over the last year. If a symptom disappears, a different remedy may well work better for the next stage. Ditto if things take a turn for the worse. There are literally scores of remedies that might help but the trick is to find the right one(s) because everyone has different genes and different life experiences/past illnesses etc.

    You could Google 'homeopathy Lewy Body' to see the possibilities.

    Remedies commonly recommended are Zincum and Causticum - at one stage Zincum helped my partner but not Causticum.

    NB NB Important You should consult an expert to get the best result and one that has the best chance of lasting.

  • From what I have read, speech and cognitive issues are part of Lewy body disease (or dementia), the word we do not want to hear. I did not read about them being anywhere except the brain and that no imaging showed them. I will have to do more research. I don't know if this is my problem, has not been diagnosed by an MD, just my disability attorney's mother had this along with PD, said she thinks I have more than PD and suggested I take a look at it. Much seems to fit.

    Thanks for the input, Susie

  • My husband was diagnosed with Lewy Bodies Dementia about 6 years ago ( he has had Parkinsons for about 13 years) His earliest symptoms were hard to pin down; but for example he took several cheques we needed paying into our bank account. But instead of going to our own bank he went to each of the payees banks (as displayed on the cheques) and became upset because they wouldn't cash them for him. He also forgot how to tie his neck tie (something he had done every work morning for many years). He took to making tea in the milk bottle !

    There were a number of other things which happened over a period of time. He also became paranoid and would become distressed because of things he believed I had done which I hadn't. Even for a brief period believing that I had 'stolen' a room from our house.

    I couldn't decide if the symptoms were a result of stress or perhaps a reaction to one of his medications. Eventually we were referred to a mental health clinic and worked with an Occupational Therapist and a Psychologist who eventually suggested that he was presenting symptoms of Lewy Bodies. By this time his symptoms had become much more obvious especially the confused behaviour.

    I must stress that throughout all of this he was still very clearly the very intelligent person he had always been. All these 'events' were isolated and he would continue as usual around them. But he had also begun to have quite prolonged periods of what can only be described as 'absences' (I will say more about this later).

    He continued to be a very avid reader; went with friends to the pub quiz each week and could thrash the best of them! He was always a very thoughtful conversationalist, and would still come up with the profound statements he was famous for!

    But the paranoia and also hallucinations were becoming worse. We tried changes of medication (taking Mirapexin out of the mix did help quite a bit) .Eventually it was decided to try Rivastigmine. he now has 6mg twice daily and the paranoia and hallucinations have gone completely.

    It is really hard now to say which symptoms are a result of PD and which are not. He can do very little for himself now; but he still enjoys reading. He always passed all the usual tests for dementia ( a series of questions such as what year is it etc etc) though not quite as well now.He is still a profound conversationalist much of the time. He listens to the radio a lot and is far ahead of me on what is going on in politics.

    But he also has quite long 'absences'. At these times there is no way of getting through to him. But he can talk about them afterwards which I find very interesting and also reassuring. When asked about them he explains it as "going to another place" (more recently as going to the other place) It is clearly familiar to him. When asked he says he is still aware of everything and everyone around him; but he cannot voluntarily 'join us'. He has to come back gradually in his own time. He can 'go there' voluntarily if he is feeling stressed or just fed up. He says it is a restful place usually. However he says it is stressful if he has taken himself there if we have had a row (not that often honest) because he can't get back and sometimes wants to get back to say sorry and sometimes because he has a better argument!!!!

    I obviously have no idea if B's. experience is similar to anyone else's. I sometimes used to wonder if he was telling me about 'the other place' just to make me feel better. But I honestly do not think that now. Sometimes when he 'comes back' he can recall things that have been said whilst he was 'away' and will mention them several days later. Other times he cannot recall anything. But more often than not we are on our own in the house so there is no conversation going on. But sometimes he amazes be because I think he has been gone ages and he will suddenly say 'have you been listening to that? and repeat blow by blow what has been on the radio.

    B. definitely responds to plenty of mental stimulation and we have lots of friends who visit and we talk together about what he is reading or whatever.

    All I can really say is that if this is dementia, I am no where near as scared of it as I used to be.

    Oh and one thing I must add is that keeping a sense of humour has been absolutely vital for both of us. B. loves to hear about some of the things he has got up to when confused. i was never scared to tell him because teasing each other is part of the way we are together. our friends get in on this too and I can tell you that for B. loving teasing is the bees knees; he just adores any opportunity to be centre of attention and laps it up.

    I do hope this might help someone in our situation. Our life is VERY good.

  • Wow, thank you for sharing, even though tragic, it is a wonderful story. B is so fortunate to have you there with him and to see the humor in even a horrible situation! There are times that at the moment, I could not remember anything, but later, when the stress was off could remember every detail. Other things that I cannot remember a single detail of....When hallucinating, it seemed very real, but no paranoia. I have only had one hallucination (that I know of) since beginning medication.

    It sounds like B has had good results with medication. Once I have insurance, I do plan to have a more thorough work-up. My psychologist told me that when I first met him during my divorce and before the PD diagnosis, I was one of the sharpest minds he had met, he has watched me go down rapidly. It is a hard pill for me to swallow.

    Laughter and humor are soooooooooooooooooooooooooooooo important. I have jokingly said that in our household, we laugh so hard that sit-ups are not required. I like that.

    Again, thank you for sharing your experience. Susie

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