Lewy Body Dementia at age 51: Anyone else with early onset LBD?

If you dont mind – how was the diagnosis made?
What type of testing was done?

We moved into a one story house Feb 2020 because my husband was falling so much. He’s had 12 spinal surgeries, so our family just assumed it (and all the other odd behaviors the past few years) were because of the pressure on his spinal cord. The move seemed to push him over the edge, and he was doing things like looking for the upstairs to get to the bedroom and insisting my daughters parties (which didn’t exist) were getting too loud.
One morning in September 2020, he woke me up in a panic about the people in the back yard, and he was hallucinating pretty badly and was becoming combative. I called the police and they very kindly convinced him to go the ER where they admitted him with cellulitis in his leg. They explained that bad infections can cause hallucinations and once the infection cleared so would the behavior.
When that did not happen, they insisted it was a psych issue. The psych team said it was not and contacted the neurologist, who did an mri and eeg. These came back “abnormal,” but he said he’d need further testing that our small hospital couldn’t do.
He was transported by ambulance to a bigger hospital in Pittsburgh to have these tests done. The evening he was admitted, their neuro team called and woke me up in the middle of the night asking, “Can you tell us why he’s here? We don’t see anything wrong with him.” Even though he could not figure out how to eat his breakfast and believed the hospital was trying to frame him for murder, they discharged him that morning! I drove the 2 hours back with him screaming that I was running over people with the car.
The next week at home was a nightmare. He was confused, had bursts of anger, was wondering around in the middle of the night, and was having bad tremors in his hands. I had to feed and dress him, and our grown children helped me take shifts to provide him 24 hour care while I tried to go to work.
To make a long story short (although I think it’s too late for that….sorry for rambling), I convinced him to get in the car so I could take him to Cleveland. So in the middle of the night I made the 3 hour trip just praying he didn’t try and get out of the car and run from me. I pulled up to the ER, burst into tears, and asked the receptionist to please help me.
They immediately knew something was wrong and admitted him into their behavioral psych unit where the neurologists and psychiatrists worked together. They explained that their lead diagnosis was Lewy body dementia but they wanted to do everything they could to make sure it wasn’t something else. They repeated an mri, eeg, did a pet scan, and ran a boat load of lab work.
After 2 weeks in the hospital his mental and physical condition deteriorated, and he was hitting nurses and called security to report a kidnapping by his wife. After trying several meds, they asked me if they could give him a very small dose of haldol. They were honest about the risk, but they wanted to try it while he was in the hospital under their care rather than in a facility that he was going to have to go to. I agreed, and it helped him immediately without any bad reactions.
He was able to come home with the help of home health services and continued to improve. I found a good neurologist an hour and a half away who has been seeing him regularly. This doctor says he isn’t completely convinced it is lbd since he is able to take haldol and almost 50% cannot take that type of med. I know that is the text book reaction, but if there is anything I’ve researched about this disease is that you can’t put it in a box. Besides, I told him if 50% are unable to take it, that means that 50% are able. He said what happens over the stretch of time will tell him more.
In the meantime, he has some good days where he’s cognizant of what’s going on and some bad days where he can have any combination of the following symptoms: hand tremors, drooling, choking on food, tripping, inability to have conversations when there are several people in the room, staring spells, slurred words, quiet and withdrawn, night sweats, a significant loss of executive function, sleeps a lot in the day, wonders at night, yells out in his sleep, falls out of bed, and has developed restless leg syndrome.
And that’s basically where we are now.

Sounds like you are having quite the time. What you say really is so true "but if there is anything I’ve researched about this disease is that you can’t put it in a box".
Some docs try to do that.

I wan to give you some good info on the testing. I have to look at the notes. I will get back to you in a separate post.

What you are seeing with the behavior is unfortunately something that isn't uncommon.
Right now I am at the semi paranoid stage where I feel like everything is argumentative putting me on the defensive and acting like a 2year old sometimes with my reactions.
My hallucinations aren't nearly that bad, but it can definitely happen.
I thought the same thing as you di on the doc saying 50% don't. I immediately thought 50% can. That is saying it helps someone not some Duh.
The good days and bad days are part of it. Somedays - even a week I will be doing pretty well. Then back to Lewy land.
Wow - the inability to have conversations with several people. Sometimes too much to process, too much to follow and frustrating the you want to chime in but don't know when to jump in like most people. Then I get frustrated because when a break comes the conversation sway beyond what I was thinking or I forget all together.
Many of the bad day stuff you mention is true with me.
drooling, choking on food (not too prominent), staring spells, slurred words, quiet and withdrawn, night sweats, a significant loss of executive function.

Home health services are a real help. We found that the occupational therapist helped a lot to "Larry proof" some parts of the house. And customize some ADL's to help me with things such as taking the right meds at the right time, showering ( I forget to wash hair, maybe use soap or miss parts of my body).

Has he been tested for REM sleep disorders? It isa common thing that might be a contributing factor to the falling out of bed and yelling out in his sleep. I have RSBD (REM Sleep Behavioral Disorder) - again common with this.
This causes me to roll around in bed and it looks like hurricane hit the bed in the morning because I have thrash around a lot and the cover and sheets are anywhere but where they should be.
They can give him something to help with sleep and get into REM sleep.

You will definitely benefit from a multi pronged arroach with a psych and neurological team who work together.

I am off the bloodstream thinner Xarelto and the thyroid is. I am getting back to normal. doing things like I was before the medication. I think the packing plants is mixing the drugs, way to get rid of overstock of powder. Last prescription the MD specialist for thyroid increase dosage, that increased side effects. Blood test yesterday and will keep you posted. On natural vitamins for thyroid and blood thinner.

Glad there is some progress being made. Have you looked at the manufacturer of the prescription? IT should be on the bottle. I have found that the same script - just demo different manufacturers dont act the same. Some give me more jitters, some make me more tired than the other manufacturers.
Maybe keep track of th meds you are thinking there are issues with to see if there is a manufacturer that works better than others for you.
Psalm 46

Peace
Larry H

Oh, don't worry about the delay! I was just wondering if you had some "magical " test done that my husband didn't have. It seems like all those scans, etc just rule out other diagnosis. His clinical symptoms are almost exactly the same as yours, and he had reduced dopamine also. Thanks!
Jen