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.