Lewy Body Dementia-- any experience with it?

In My Humble Opinion
1

A close friend of mine-- high school friend, age 78-- has been experiencing strange visual hallucinations for the past few months. As in seeing people who (probably) aren’t there. In her back yard. On her front porch.

Today she thought she saw three people sitting in her car in the driveway with the windows rolled up. We were on the phone (she lives pretty far away), and I said, “Stay on the phone and go to the car and tap on the window.” Amazingly, she did that-- I heard the tapping-- and she still wasn’t sure if they were there. Temps are in the 90s-- no one can sit in a car with the windows rolled up and LIVE.

She didn’t seem all that concerned.

I asked her to take a picture with her phone and text it to me, but I couldn’t manage to talk her through the process. She has always been pretty techie. She was a tech writer for years.

I was reading extensively about additional symptoms of LBD, and some others fit, too. Like having a hard time making decisions. And vocabulary slippage-- speaking vaguely where she used to be articulate.

I’m not going to mention this diagnosis to her, but I did suggest she see her PCP, and she said she would. I hope she doesn’t put that off. She said her doc would probably refer her to a neurologist. That would be a good thing.

Do you know anything about this condition?

2

It’s like a cross between Parkinson’s and Alzheimer’s, and much worse than either. Robin Williams was formally diagnosed with it at autopsy.

3

The father of one of my best friends from college had it, and passed away from it (a year ago today, in fact).

From what my friend described to me, her father would have periods of lucidity/normalcy, interspersed with hallucinations, and bizarre, even frightening statements and pronouncements, including stating that he was the devil, and would kill everyone. His last few years were, from what I’ve been told, extremely stressful for the family.

4

Oh dear, oh dear. Sounds pretty awful. Apparently there is treatment for symptoms but no cure.

Another condition that causes hallucinations is Charles Bonnet Syndrome or Visual Release Hallucinations.

I did send her this link.

5

What’s clear is that she’s having neurological problems. It could be LBD, but she should be examined and diagnosed by a neurologist. Other conditions that can cause hallucinations include Parkinson’s and schizophrenia.

6

One of my colleagues passed away from it after a multi-year long battle. Terrible.

7

The mother of a friend had it for the last few years of her life, and , yeah, numerous episodes of delusions/hallucinations.

8

A friend’s mother died of it a few years ago. They were mercifully financially secure and could afford caregivers. My recollection is that they dealt with the hallucinations fairly successfully after they had developed a response strategy, the details of which I forget now but which involved a combination of humoring her and distracting her. I seem to remember a lot of car rides, too - I guess that calmed her down when she was agitated.

So it was very sad, of course, and exhausting for everyone around her. But my friend is at peace with her mother’s death, knowing that everything possible was done to make her mother comfortable and content.

9

Hallucinations can also be a symptom of Parkinson’s. Whatever it is, I hope she finds some help!

10

My sister wasn’t having visual hallucinations; but she thought people were in the house who weren’t there.

Turned out she had autoimmune encephalitis.

Whatever the cause – your friend should definitely see a doctor. And do it now.

11

Definitely. She needs to do it right away.

12

In my wife’s final months she was diagnosed with advanced Parkinson’s and was having delusions (look up my posts from 2003-2004 if you want details). After she died a heard about Lewy Body Dementia and have wondered if she might have had it.

13

I did a cursory search thru some newspaper archives and Wikipedia, and although Lewy bodies have been known for over 100 years, and dementia that include Lewy bodies has been known for over 60 years, it wasn’t ‘fully described’ until 1976. It doesn’t show up in newspaper archives until the early 1990s so far as I could determine.

14

I have no experience or expertise, but inspired by this thread I read up on the diagnostic criteria for it, and was fascinated to learn that a heart imaging test is used in diagnosis.

It’s a “supportive biomarker”. An early core clinical feature is REM sleep disorder:

15

That is very interesting about the heart thing.

Since she lives alone and doesn’t even have any pets anymore, there would be no way of knowing if she has any disturbances during sleep.

16

Yes, I have had really too much experience with it. My husband had Parkinson’s for a long, long time. His tremors started in 1991. About 2009 or 2010 he started with the visual hallucinations. We lived in an apartment, so he saw women in long dresses looking like angels come through the ceiling and take pictures of us sleeping. That was the beginning. He saw snakes, rats all over our bed, and the “invisible thieves” that came through the walls and stole his money and my jewelry.

It took a long time to get a definitive Parkinson’s diagnosis. I know it is difficult to diagnose. But I stick with the start date of around the tremors.
He was not formally diagnosed until the visuals started. The Lewy Body diagnosis was made by a geriatric psychiatrist. She started him on a very low dose of Haldol (I believe it was .5 mg twice daily) It was a miracle…he was so happy and not frightened anymore. He died of a stroke in 2014.

My sister was diagnosed with Parkinson’s in 2015. Hers progressed rapidly. Her hallucinations were much, much worse and started about a year or so after her diagnosis. I would be talking to her on the phone, and she would say hold on a minute. I would then here her say, get out, get out, you don’t belong in here. When I asked who she was talking to, she said those homeless guys got in here again and they are sleeping on the dining room floor.

She would call the police because her Asian neighbors were stealing pet dogs and cooking them. Called again because another neighbor was keeping a horse on the upstairs balcony in the bitter cold.
She refused to take any medication except the Sinemet for her tremors.
Homeless people were always (in her hallucinations) invading her home, her car, her backyard.

I can go on and on. I took care of my husband until he went to rehab and then transitioned to custodial care. while he was at home I was working and had private pay help during the day, but I could not stay up most of the night and work the next day. So the timing was right.

I, and my nephew, tried our best to care for my sister. She fought us every step of the way. No meds, we were always wrong and she was always right, even as to what time of day or night it was.

I will write Part 2 of this tomorrow. It’s too long to write now.

I did learn that Lewy Body has Parkinson-like symptoms also.
And 50% of Parkinson’s Patients also get Lewy Body.
The real diagnosis is which came first (I learned that from the Geri-psych.) In my opinion, My husband had Parkinson’s then LBD.
My sister was the opposite.

More tomorrow. please ask any questions that I may be able to answer.

17

Oh, honey…your story has me in tears… :cry: :hugs: If you were here, I would give you the biggest hug. What an ordeal, and then to have it repeated with your sister. Dear God.

What you said about your husband’s comments and your sister’s sounds EXACTLY like the way my friend talks. Yikes.

Surely when she goes to her PCP, the doc will see that something is up. Even though it took y’all a while to get a diagnosis, it was clear to the doctors in question that something was going on, right?

You said your sis was resistant the whole time-- how was your husband attitude when he first got the diagnosis? What symptoms did your sister have before the hallucinations started? Was it tremors?

I’m very interested in the rest of your story, and I’m sure others here are, too. I really appreciate the effort it must be to write it all out.

18

Oh jeez. My fellow tenant Steve might have this. He sees hallucinations all the time. I thought it was just medication side effects.

19

help please - I wrote out a big long response as a reply, in email.
then got the following:

Reason:

Sorry, you can’t embed media items in a post.

If you can correct the problem, please try again.

20

trying again. I don’t know what “media Items” are. I only replied to the email.

Part 2…more later…ask questions.

Thank you ThelmaLou, yes, it was difficult as well as emotionally and physically draining.

I hope so. I took my husband to several neurologists (in Manhattan!!) and none of them were of any help to us. Around 2009 cognitive issues were beginning to surface and tremors worsening. Response was:
“Well, I don’t find anything wrong, and I have no idea why he is confused.”

His PCP then referred us to the Geriatric Psychiatrist. She was absolutely wonderful and we finally got the help we needed. She ended up calling the last neuro and, while I was sitting there, had a screaming match with him on the phone.

It might be helpful for someone, family member? to tip off the PCP re: about the hallucinations before the visit. Either a call to the office staff so the doctor know what is going on in advance. Both my husband and sister were “prim and proper” during doctor visits. They both had moments (hours?) of lucidity during the day. Even though one was medicated and the other was not, it was not always clear to the doctors what was going on. The tremors, yes. Hallucinations, no.

My husband and my sister were two totally different personalities. My husband LOVED going to doctors. He had a lot of health issues from the time he was in his 50s. Diabetes, High Blood Pressure, heart disease, stroke. He realized that the docs kept him alive and relatively well. He worked until he was 64. He was aware that he had cognitive deficits and we had some pretty dangerous situations before the geri-psych medicated him. After the new med started he was reasonable accepted it and apologized to me. He told the psych that he knew I would take care of him and the “invisible thieves” and the “picture takers” were afraid of me, since when they saw me they would leave.