For those who care for someone with Parkinson's disease
[Home] [Forum] [Help] [Search] [Register] [Login] [Donate]
You are not logged in

Topic Parkinson's and/or Lewy Body Dementia Go to previous topic Go to next topic Go to higher level

By JulieB On 2014.05.28 08:57
A friend in CA shared with me about a woman she knows whose husband had PD and Lewy Body Dementia. I've done a tiny bit of reading, and most of the articles I've found indicate that PDD (Parkinson's Disease with Dementia) really is Parkinson's with Lewy Body Dementia. Some articles say that many people diagnosed with PD actually have Lewy Body.

I don't know if you've discussed this here before, but I wondered if anyone knows about this from personal experience? My husband Michael was diagnosed with PD in 2004, but has never had tremors. Sinemet has never been spectacularly helpful, in fact I can't see the benefit, but Michael has said a few times that it helps his stiffness a little bit.

He does have some of the symptoms of Lewy Body Dementia (sleep disturbances/acting out his dreams, visual and tactile hallucinations, cognition that changes throughout the day). I'm wondering now if he has LBD. I know we will have to see his neurologist for this.

I wish I knew of a way to deal with his inability to understand basic words. No matter how I say it, what I model, or the simple assistance we try to give, he seems to have lost what the words "stand up" mean. There are other phrases he doesn't comprehend too, but this one has ramifications because in order to pee and be changed he needs to stand up. He's physically able to stand. Anyway, this is just one example.

Things are difficult here because he doesn't understand how to sit in a chair, how to sit down in his wheelchair when needed, how to hold his fork, how to let us change his shirt, how to pee in a urinal we're holding, how to sit up in bed...we have to help him do all these things (which I expect and am happy to do) but he doesn't always grasp why he needs to do them, and has been increasingly resistant. To be honest, it feels like we're both losing our minds for different reasons.

If anyone knows about Parkinson's and Lewy Body Dementia, I hope you'll share. Thank you, friends. xoxo

By LOHENGR1N On 2014.05.28 13:34
Julie, There are discussions about P.D. LBD here but To really get the differences yes you'll have to talk to His Neurologist. Lewy body Dementia Target different parts of our brain than P.D. so a Neurologist would know what signs or signals to look for exhibited by each disease verses the other.

Something that confuses many People is the fact Parkinson's has lewy bodies present upon autopsy. Or P.D. does have lewy bodies also however these are in different areas of the brain than LBD. This probably has confused you more than helped Ask Your Neurologist to explain the difference to you They'll probably do a better job.

By Mari7254 On 2014.05.28 14:07
My husband's PD is similar-not many tremors but rigidity and balance are horrendous. Like your husband, he has lost the ability to understand getting from his wheelchair to potty, wheelchair to his chair and bed. Directions seem to escape him. He is confused but when he starts getting tired, it gets much worse. Paranoia sets in...has some hallucinations and definitely acts out dreams. We just dress him...watching him try to do it himself is heartbreaking and I cannot bear to watch him struggle. Don't know if this is PD Dementia or Lewy Bodies....

By carman96 On 2014.05.28 22:42
My husband has few tremors,but rigidity, dementia, balance problems. However he has always responded to sinemet. So I guess that means not Lewy Body. Not sure.
One neurologist thought he had Multiple System Atrophy, MSA. So I took him to a movement disorder specialist and she was thinking possibly Parkinsonism complex of Guam with dementia. My husband's parents were born on Guam but he was born in California. When I told her I had read studies and never heard of anyone that was born off island with it, she basically said it doesn't matter exactly what kind of Parkinson's Plus it is. The treatment is the same. It seems to be a guessing game, with no right answers.
My husband's dementia is moderate, I think. He stills understands a lot of the time, but sometimes seems to have a hard time processing things, and becomes quite irrational and/or confused, then agitated.

By Marilyn-NJ On 2014.06.06 14:58
Julie - I'm first reading this posting because I just delved into the Casey Kasem information. I ended up reading up on Lewy Body on the Mayo Clinic website which gave me the most indepth information to date. I am just about certain that this is what my husband to every detail. David also has the autonomic dysfunction component, as well. Not that there's anything I should be investigating at this point, but it, at least, brings the whole thing together. :(

By ChiefsWife On 2014.06.13 22:06
Yes, I feel like I'm able to put another name to the symptoms I've been seeing. My husband sometimes sees a gray figure then insists it's me when I've been no where near him. We just have been saying we have a ghost, the gray lady. (Hey, maybe we do! I'm not opposed to that either. ;)) Sinemet doesn't help him and he stopped taking it with his dr.'s blessing. He moves a lot in his sleep. I see all the other symptoms as well. :(

By JulieB On 2014.06.14 08:50
Marilyn and Chiefswife -- the dementia brings so many other issues into the picture, doesn't it? Parkinson's with Lewy Body Dementia explains a lot to me, especially the variations in cognition all throughout the day. Sometimes I think the old Michael is present with me, understanding what's being said and participating normally. Other times I think, "Oh, he's gone now, it's the LBD animating things." :(

Chiefswife, I was so interested in your "gray person", because Michael told me last week that he occasionally sees shadows moving around. Has your PWP had any tactile hallucinations, feeling things in his hands that aren't there?

Last night we were watching the Minnesota Twins on TV (Michael has been a Twins fan since he was a little boy) and he looked over and said to me, "Where's the other dog?" We have two adorable and too-yippy Schnauzers, Edith and Mildred, and one was on the floor at Michael's feet and the other was snoozing in his lap. I pointed out that Edith was on the floor and Millie was in the recliner with him. He looked around the room in a peering, searching manner and said, "Where's the third dog?" These are the times when I'm not sure how to answer. I have learned that it's best to just go with their reality, join them in it there, and I've been doing that and finding it helpful. But last night I decided just to say, "We just have the two Schnauzers. Are you thinking of Myrtle, our old black lab from years ago?" He wasn't sure, and I could tell he was a little jarred to learn that we didn't have a third dog. I wish I had said something like, "She's in the other room."

Today we have accepted an invitation from friends to go out for lunch, and it's at one of Michael's favorite restaurants -- Texas Roadhouse. He loves a good steak. I'm hoping since we're going early, he'll be able to manage the walking all right. I will have the wheelchair just in case. We do this so infrequently now, it seems like a huge event! Yay!

May you all have a peaceful weekend. I'm so glad you're all here. xoxo

By Mary556 On 2014.06.14 11:19
JulieB, I'm happy that you are here, too. Hoping you and your Michael will have a wonderful day!

We've had 3 (or 4) Mary's living with us for a couple of years. My Mom calls them "the girls". One makes supper, one cuts hair, one is far behind with housecleaning. It can get very confusing because they all wear their hair the same way and have the same clothes. It is a challenge sometimes, to know how to converse about my counterparts. And to know how to respond to my mother when she does not recognize me as myself. Usually I just go along without challenging her reality because it seems to be less anxiety for my dear one.

By LOHENGR1N On 2014.06.14 12:28
Another thing that should be considered is that many confuse delirium from the effects of medication with dementia (I'm not saying that this is the case and certainly if the doctor has had them examined to rule out delirium). Because dementia can result from P.D. and because there is not definitive test to say 100% certain early on it is dementia, many come to their own conclusion it is the big D. (and I'm not faulting anyone for doing that it is a normal assumption giver mostly what is out there about P.D. for the public to base opinions on.)

As a rule dementia has a slow onset over time memory and confusion become worse, Delirium can be quick onset just all of a sudden one day it's there out of nowhere.

Generally speaking a diagnosis of Dementia is based on memory loss (short and long term) and one or more of the following;
Aphasia - language problems
Apraxia - organizational problems
Agnosia - Unable to recognize objects or tell their purpose
Disturbed executive function - personality and inhibition

Delirium is a acute disorder of attention and global cognition (memory and perception) and is treatable. The diagnosis is missed about 50% of the time. Risk factors are age, pre-existing brain disease and medications.

Some contributing causes can be; electrolyte disorders, infection, Rx Drugs, injury , pain and stress or unfamiliar environment.

Diagnosis of Delirium is based on clinical observation it's essential features include;
Acute onset (hours/days) and a fluctuating course.
Inattention or distraction.
Disorganized thinking or a altered level or consciousness (hallucinations)

Sometimes adjusting (tweaking) our medication will help or will bring noticeable changes for normalcy. And We don't necessarily have to have just started a new med. it could take a few months to build up in our systems to a level that may cause problems.

This has always been a major concern of mine that a diagnosis of Dementia never goes away, once it is there then the patient is "demented" and can't voice concers or problems because that diagnosis rules out "normal" thought and cognition and if a caregiver voices the concerns well....they're listening to a demented person and it should be discounted and ignored.

I hope this helps some because the more med's we are given over time can in some cases cause problems which can be reversible and not warrant a tag like the big D. Take care, best of luck and hang in there!

By ChiefsWife On 2014.06.14 16:33
Thanks for that info on Dementia vs. Delirium. I'm taking it all in. In my husband's case the hallucination, memory impairment, etc. are relatively recent, maybe the last 6 months or so. I was assuming that it was being on the meds for so long since reading about that possibility. And no there haven't been any other instances, tactile or otherwise, that I've been aware of. (He also might not be telling me.) Although my husband has had Parkinson's for at least 14 years he only retired 3 years ago and is still quite able to take care of himself and could live alone if needed. He absolutely should not drive and although any person would notice his physical problems with movement and speech his intellectual difficulties for the most part are something only I would notice at this point. I think. I'll have to ask my daughter what she's been noticing. She lives nearby and we see her throughout the week. She'd have a more objective viewpoint.

By carman96 On 2014.06.14 21:00
My husband definitely has moderate to severe cognitive disorder. He was diagnosed by the VA in 2010. He had been taking a variety of drugs, but not that high a dosage. Actually at that time his movement wasn't that bad. Maybe the drugs are contributing but most of his symptoms point to a Parkinson's plus disease with dementia.
Whatever, he doesn't really hallucinate, but he has illusions. Like he thought some rocks outside were a dead animal. And delusions, he thinks we are moving or going somewhere or that we are somewhere other than home.
It is what it is.

By Marilyn-NJ On 2014.06.17 14:14
It's definitely a hard diagnosis between PD and Lewy Body Dementia. We have the "somebodies" living in our house. They're a dark spirited bunch who desecrate our furniture, eat our food, sell our stuff, etc. They are large in number and have children. I am patient most of the time and just go with the flow to keep things calm. Sometimes I just say that I can't discuss it...and the topic stays in David's mind. He's only (?) on Sinemet (14 pills daily). He can't stand more than 40 seconds with my support. He has autonomic dysfunction which has compromise his blood pressure, bowel, bladder, etc. (No tremors) Hallucinations are probably PD related but the dementia component is tremendous, as well. He's lost his sense of logistics and much of the keen mind he once had. It's selective in nature. Parkinsons Plus or Lewy Body Dementia.....they overlap.

July 4th is our 40th Anniversary. How sad that we reach that milestone while losing so much of what we normally cherished.

By daisy On 2014.06.17 16:33
May I ask Carmen, how you came to get a formal diagnosis for your DH. I find that Dr's are reluctant to diagnose this. If you feel able to share, I would be interested in knowing how he was and what prompted the diagnosis?

Mine has all of these symptoms, after having PD for 7 yrs. His hallucinations and general cognition fluctuates throughout the day, but his executive function is bad all the time. His Dr thought he had dopamine disregulation syndrome because he needed lots of medication to stay on, although he showed no symptoms of DDS and while we have reduced his meds. his mental abilities continue to deteriorate.

I found that while his motor function is well maintained they insist that he is doing "really well". He is only in his mid 50's. They seem to compare him to the much more advanced cases they attend, while I naturally compare him to the man he was only a few years ago.

Of course, I would rather that my darling not have a PDD diagnosis. But if he is heading in that direction there are wonderful supports that we could utilise, which are not open to us at the moment. Right now it is just me fearing the worst and worrying about the future.

Marilyn, your post shows me just how much devotion and love you have for your PDer. I feel I have it easy by comparison. Sending you a BIG cyber hug. Keep strong.

By Mary556 On 2014.06.17 18:00

By parkinit On 2014.06.17 18:41
Interestingly,I found this on LBDA.ORG.

LBD is an umbrella term for two related diagnoses. LBD refers to both Parkinsonís disease dementia and dementia with Lewy bodies. The earliest symptoms of these two diseases differ, but reflect the same underlying biological changes in the brain. Over time, people with both diagnoses will develop very similar cognitive, physical, sleep, and behavioral symptoms. - See more at:

By Mary556 On 2014.06.17 19:15
from the Lewy Body Dementia Assoc. website given above:

"Some medications, like anticholinergics, amantadine and dopamine agonists, which help relieve parkinsonian symptoms, might increase confusion, delusions or hallucinations."

- See more at:

thank you, parkinit.
continuing prayers for you and your DH.

By JulieB On 2014.06.18 12:50
My heart goes out to you, Marilyn. Your situation sounds so similar to ours. I think I will use your answer -- "I can't discuss it" when it's next called for. Thank you. You are cared for.... xoxo

By parkinit On 2014.06.18 14:07
Thanks, Mary!

© · Published by jAess Media · Privacy Policy & Terms of Use
Sponsorship Assistance for this website and Forum has been provided by
by people like you