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

Hello:
I can chime in from a patients point of view. I am a LBD with Parkinsonism patient - diagnosed at 56.
Everything you noted is - well part of it.

Finding a doc that actually understands LBD can be a challenge. I have been a Mayo patient for 12 years. I was blessed to have a team of neurologists / neuro psych folks and an osteopath.

I do have other friends that have gone through many docs.
If you haven’t looked here - the Lewy Body Disease Association - (LBDA) has some good resources.
Lbda.org - look under the resources tab.

Also - this is a good post from someone caring for her mum with LBD.
Some good insight that we have learned from.
https://www.lbda.org/lbda_story/10-things-i-wish-i-had-known-sooner/
If you dont mind - how was the diagnosis made?
What type of testing was done?

Your work and taking care of a loved one is a challenge. My wife was hesitant to continue working when I stopped driving a couple years back.
My kids check in on me a couple times a day. Mostly phone calls and a couple of visits during the week.

Our church has a group of folks that check in on folks like myself and your husband.
Would that be an option for you?

My wife has now stopped working - mainly age related aches and pains. I try and make sure she goes ot and has some alone time to enjoy some of the things she likes. I cant take much heat and cant walk too far. She likes to walk on the beach and pick up sharks teeth.

It is important that - you - his wife and caregiver - take care of yourself - both mentally and physically. Please dont feel guilty for working. It sounds like you enjoy it and get some gratification from it. That is an outlet for you.

Jus like my wife’s walk on the beach - of Goodwill shopping - that is healthy for you.

We need you to be healthy and to find some joy. If that is through your work - so be it.
When you can smile - we smile - even if on the inside.

And the socialization problem. As things progress I have more problems with communication and being overwhelmed in some social settings.
I am very conscious of the problems I have getting the words from brain to mouth (that is when I can come up with the words). This causes a sometimes awkward situation where I want to be part of the conversation but it flies by me because I cant speak up in time.
My wife and I are working on her being my communication liaison. When we are in a small group and having a conversation - she can tell when I want to chime in. She will jump in and say - Larry - did you have something to say?

That can open up another can of worms as I sometimes will mistake that for saying I cant speak for myself - when in actuality that is the case.

When I am in a larger crowd - sometimes all of the noise and activity is overwhelming to the point that we have to leave.

I had experience being an instructor and bi-vocational Pastor - so I was adept in being in a lot of social settings.

People will think it is odd. They wont understand.
We have gotten to the point that we have accepted this as a reality and tell people that I have a traumatic brain injury and leave it that. My neurologist said it can be described as that - except it is degenerative.
That will normally make them be a bit more understanding. If they want to know more - we just say - we are dealing with it and leave it at that.

Sometimes mood swings are a big issue when around other people as well. I think that one is harder for me. Being somewhat normal then boom - I am acting like a 3 year old. That is embarrassing for both of us.

I can say from someone that sees this disease “from in here” we appreciate our caregivers. We realize the sacrifices you make for us- even if we dont or cant convey it. The comfort that I get from her cannot be described.
We never want to hurt you. We arent in control many times. It is the disease talking. It is not personal. Our hearts know our true feelings. Please always remember that.

Peace
Larry H.

Before diagnosis of LBD he had several falls, and several hallucination episodes. His mobility gradually became more difficult. We attributed some if these symptoms as a vision related issue. So, bottomline, we were not thinking Parkinson's.

You are an amazing communicator. My husband tried getting things down on paper, but even signing his name on important documents is extremely difficult because his hands don't seem to work very well with anything needing fine motor control.. Do you "type" on a computer yourself?
,,,,and I do hope you are working on a book about "from the inside" because you are blessed with an amazing gift of expression through writing. I do wish I could see all of your posts from the very first one. Personally, I have gained more from the few I have read than from any support group, web site, or article.

You are an amazing communicator. My husband tried getting things down on paper, but even signing his name on important documents is extremely difficult because his hands don't seem to work very well with anything needing fine motor control.. Do you "type" on a computer yourself?
,,,,and I do hope you are working on a book about "from the inside" because you are blessed with an amazing gift of expression through writing. I do wish I could see all of your posts from the very first one. Personally, I have gained more from the few I have read than from any support group, web site, or article.

You are an amazing communicator. My husband tried getting things down on paper, but even signing his name on important documents is extremely difficult because his hands don't seem to work very well with anything needing fine motor control.. Do you "type" on a computer yourself?
,,,,and I do hope you are working on a book about "from the inside" because you are blessed with an amazing gift of expression through writing. I do wish I could see all of your posts from the very first one. Personally, I have gained more from the few I have read than from any support group, web site, or article.

Hello:
I can chime in from a patients point of view. I am a LBD with Parkinsonism patient - diagnosed at 56.
Everything you noted is - well part of it.

Finding a doc that actually understands LBD can be a challenge. I have been a Mayo patient for 12 years. I was blessed to have a team of neurologists / neuro psych folks and an osteopath.

I do have other friends that have gone through many docs.
If you haven’t looked here - the Lewy Body Disease Association - (LBDA) has some good resources.
Lbda.org - look under the resources tab.

Also - this is a good post from someone caring for her mum with LBD.
Some good insight that we have learned from.
https://www.lbda.org/lbda_story/10-things-i-wish-i-had-known-sooner/
If you dont mind - how was the diagnosis made?
What type of testing was done?

Your work and taking care of a loved one is a challenge. My wife was hesitant to continue working when I stopped driving a couple years back.
My kids check in on me a couple times a day. Mostly phone calls and a couple of visits during the week.

Our church has a group of folks that check in on folks like myself and your husband.
Would that be an option for you?

My wife has now stopped working - mainly age related aches and pains. I try and make sure she goes ot and has some alone time to enjoy some of the things she likes. I cant take much heat and cant walk too far. She likes to walk on the beach and pick up sharks teeth.

It is important that - you - his wife and caregiver - take care of yourself - both mentally and physically. Please dont feel guilty for working. It sounds like you enjoy it and get some gratification from it. That is an outlet for you.

Jus like my wife’s walk on the beach - of Goodwill shopping - that is healthy for you.

We need you to be healthy and to find some joy. If that is through your work - so be it.
When you can smile - we smile - even if on the inside.

And the socialization problem. As things progress I have more problems with communication and being overwhelmed in some social settings.
I am very conscious of the problems I have getting the words from brain to mouth (that is when I can come up with the words). This causes a sometimes awkward situation where I want to be part of the conversation but it flies by me because I cant speak up in time.
My wife and I are working on her being my communication liaison. When we are in a small group and having a conversation - she can tell when I want to chime in. She will jump in and say - Larry - did you have something to say?

That can open up another can of worms as I sometimes will mistake that for saying I cant speak for myself - when in actuality that is the case.

When I am in a larger crowd - sometimes all of the noise and activity is overwhelming to the point that we have to leave.

I had experience being an instructor and bi-vocational Pastor - so I was adept in being in a lot of social settings.

People will think it is odd. They wont understand.
We have gotten to the point that we have accepted this as a reality and tell people that I have a traumatic brain injury and leave it that. My neurologist said it can be described as that - except it is degenerative.
That will normally make them be a bit more understanding. If they want to know more - we just say - we are dealing with it and leave it at that.

Sometimes mood swings are a big issue when around other people as well. I think that one is harder for me. Being somewhat normal then boom - I am acting like a 3 year old. That is embarrassing for both of us.

I can say from someone that sees this disease “from in here” we appreciate our caregivers. We realize the sacrifices you make for us- even if we dont or cant convey it. The comfort that I get from her cannot be described.
We never want to hurt you. We arent in control many times. It is the disease talking. It is not personal. Our hearts know our true feelings. Please always remember that.

Peace
Larry H.

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.

I second the suggestion of Larry writing a book! Everything caregivers read seems to be “from the outside.” I believe it would be extremely helpful to doctors as well!

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.

I second the suggestion of Larry writing a book! Everything caregivers read seems to be “from the outside.” I believe it would be extremely helpful to doctors as well!