Speech, movement, sleeping with LBD..Ideas?

Posted by teacher502 @teacher502, Aug 19, 2021

I am trying to figure some things out about my sweet husband. He was diagnosed with LBD about 3 years ago at age 63. Our local doctors disagreed and because LBD mimics many other diseases, we thought any diagnosis that was not LBD made more sense. Now we know that access to doctors who are versed in LBD in our area is non-existent….so we have accepted LBD as the diagnosis. My hubby is physically fit, (golf's and runs), plays with the grandchildren, and still drives quite well. (We just completed a 3,000 mile bucket list trip – I drove for a total of three hours. Before that, he drove a large RV for 2,000 miles- I didn't drive it at all…however that was too much on him mentally, and we sold it immediately after the trip.) He cannot go to the grocery store because using the credit card machine is hard, and he does not buy what I write down for him to get. He cannot do any bills, fix things around the house, talk with contractors, fix his meds, shave very well, think of things to do without prompts (stands and stares a lot), he has trouble trying to read or remember familiar words to hymns or songs. However, one of his main problems is speaking – either he can't find the words or he can't get them out. Would speech therapy be beneficial for him? Also, sometimes he just has some strange involuntary muscle movements such as a sudden jerk, or his hands having a slight shake to them that is only noticed when I am holding his hand, and he has great difficulty writing anything- even his signature. Are these symptoms of anything such as Parkinsons? One more thing, he used to have horrible nightmares. Since he is retired military, he was diagnosed with PTSD. However the nightmares are less frequent (depending on stressor of the day or violence on TV) and when he has a CPAP on, they are almost non-existent. He sleeps well – almost too much. Does anyone have any insight or similar experiences? I simply want to be the best I can be for him.

Interested in more discussions like this? Go to the Caregivers: Dementia group.

Hello:
I am a LBD with Parkinsonism patient. Like your husband I was diagnosed when young.
Much of what you are describing can be indicative active of several things – like LBD/Parkinson’s or Parkinsonism.
Some of the issues – writing, voice, loss of ability to do things very familiar, not finding words or being slow to find them are common to both LBD and Parkinsonism (at least from “in here”).
IF there is a cognitive piece – both LBD and Parkinson’s Disease Dementia (PDD) can present very similarly.
Has a neurologist done any testing for Parkinson’s? A I mentioned I have Parkinsonism along with LBD. This is common and the symptoms of Parkinson's are there along with the other fun stuff.
Has any neuro-cognitive testing been done? That would creat a baseline to determine if ther is mild cognitive impairment (MCI) and be there to measure any further declines over time. I have them one once a year.
Finding a good team isn’t easy.
Have you looked at
http://Www.LBDA.org
They have a lot of great info about the disease, involvement with Parkinsonism, caregiver resources, and a lot more!!

I’m glad to help answer questions from a patient’s point of view.
I like to call it “from in here”.

Peace
Larry H.

REPLY

He is in the Mayo Clinic LBD Research Study and they have run every test possible. We do this once a year. However, no one has ever mentioned Parkinsons along with the LBD, so I am wondering about this….we go back to Jacksonville the end of September. I was also wondering if some symptoms (hallucinations/nightmares, etc..) just go away or diminish?

REPLY
@teacher502

He is in the Mayo Clinic LBD Research Study and they have run every test possible. We do this once a year. However, no one has ever mentioned Parkinsons along with the LBD, so I am wondering about this….we go back to Jacksonville the end of September. I was also wondering if some symptoms (hallucinations/nightmares, etc..) just go away or diminish?

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Glad to hear he is part of the study. I joined 2 years back. Definitely pursue the Parkinsonism piece. That is where the movement disorder issues come from and all things Brady (slow).
Lewy body dementia (LBD) is an umbrella term for a form of dementia that has three common presentations.
One of which is “ Others will start out with a movement disorder leading to the diagnosis of Parkinson’s disease and later develop dementia and other symptoms common in DLB.”
To answer your question about hallucinations/ nightmares most likely likel wont go away. For me – the hallucinations are becoming a little more frequent – 3-4 times per month now. I am blessed as I understand it is most likely a hallucination afterward – but man does it seem real. Mine are critters like otters, geckos, spiders, sounds like voices and door bells, squeaking doors. I am blessed one again tht none of them are unpleasant. A little unnerving – espeially the door squeaking in he night from my closet door.

I know this is a rough journey. From “in here” we wonder about our future and worry about yours.

This is where I get the quote about the type of LBD:
https://www.lbda.org/is-it-lbd-or-something-else/
Also a good reference:
https://www.apdaparkinson.org/article/understanding-parkinsons-disease-dementia-lewy-bodies/
Peace
Larry H

REPLY

My heart breaks for the LBD heroes. My hubby only admits to hallucinations when we are at medical offices- says he doesn't want to upset me. There are times where he mentions barking dogs but there are none…or he looks at something suddenly and then shakes his head as if to clear his mind. However, he does not verbalize these things so I, among many on this discussion forum, really appreciate your exceptional writing ability and your clear communication. You would be an excellent counselor for LBD patients and families.
I will add that I am confused about the horrific nightmares becoming almost non-existent…he has run into walls, dived off the bed, shouted military style orders,
bruised my ribs and broken my nose (always with great remorse when he wakes up) and now there is only an occasional groaning or a sad whimpering. The softer voice and speech difficulties are consistently deteriorating….his memory is in decline…..other signs are in line with LBD. I guess I am just wondering if some symptoms go away or decrease as the disease progresses? He does have good days for awhile where I feel like this is all a horrible mistake, then days where he is in "Lewy Land" (borrowing your phrase), and I have the privilege of spending comfort time with him. If all of this is confusing for me, my heart breaks for the patients.

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@teacher502

My heart breaks for the LBD heroes. My hubby only admits to hallucinations when we are at medical offices- says he doesn't want to upset me. There are times where he mentions barking dogs but there are none…or he looks at something suddenly and then shakes his head as if to clear his mind. However, he does not verbalize these things so I, among many on this discussion forum, really appreciate your exceptional writing ability and your clear communication. You would be an excellent counselor for LBD patients and families.
I will add that I am confused about the horrific nightmares becoming almost non-existent…he has run into walls, dived off the bed, shouted military style orders,
bruised my ribs and broken my nose (always with great remorse when he wakes up) and now there is only an occasional groaning or a sad whimpering. The softer voice and speech difficulties are consistently deteriorating….his memory is in decline…..other signs are in line with LBD. I guess I am just wondering if some symptoms go away or decrease as the disease progresses? He does have good days for awhile where I feel like this is all a horrible mistake, then days where he is in "Lewy Land" (borrowing your phrase), and I have the privilege of spending comfort time with him. If all of this is confusing for me, my heart breaks for the patients.

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Has e ever had a sleep study done? RSBD – rem behavior sleep disorder is very commo. We dont fully go to get into rem sleep where our body becomes paralyzed like most so we act our our dreams. My wife and i have decided not to chance sleeping together. We had a couple of close Calls and i didnt want to take any chances. That was 4 years ago. Miss it but know it’s for her best.

I to have good days where i am pretty good then other that are worse than usual. All part of it.

As to your questions about stuff going away – everybody is different. In my case things are slowly but noticibally. deteriorating. But like i said everyone is different. Plus I have muscular dystrophy which throws another layer of fun stuff.

I am blessed to have this way of communication still. Voice isn’t good and sometimes speech is very difficult – especiaally in social situations. To much going on for my mind to process- overload.

But am still slow to type. This has taken 15 minutes to do.

Bear with us. We want to give you our best – whatever that looks like.

Peace
Larry H

REPLY

He has had 3 sleep studies. He does have rapid eye movement behavioral sleep disorder. This fits with his diagnosis of PTSD and LBD. I don't think another sleep study would be in his best interest unless the study would allow me to stay with him. Also, he would probably be greatly distressed if he woke up with all of those wires all over him.
So far we have managed to sleep together- well he sleeps and I stay on guard most of the night to protect him from himself and to protect me from his unknown actions. We do have a row of heavy pillows between us for an added layer of protection. The CPAP has something to do with better sleep quality, but he often takes it off and then he begins his kicking and moaning.
As your last sentence states, you want to give your best…that was heart wrenching…because that is all that most caregivers want to do and personally- it can be quite a joy to be able to take on so many new responsibilities and a weight to try to figure out what is going on in someone's mind…and to try to make the best possible preparations for the twisty, curvy, unpredictable road ahead for both of us. It is amazing how strong love can be ….and at the same time life's circumstances can make it so painful.
Thank you again for all you do for others through this connection….
Together everyone is stronger!
Jan

REPLY
@larryh123

Hello:
I am a LBD with Parkinsonism patient. Like your husband I was diagnosed when young.
Much of what you are describing can be indicative active of several things – like LBD/Parkinson’s or Parkinsonism.
Some of the issues – writing, voice, loss of ability to do things very familiar, not finding words or being slow to find them are common to both LBD and Parkinsonism (at least from “in here”).
IF there is a cognitive piece – both LBD and Parkinson’s Disease Dementia (PDD) can present very similarly.
Has a neurologist done any testing for Parkinson’s? A I mentioned I have Parkinsonism along with LBD. This is common and the symptoms of Parkinson's are there along with the other fun stuff.
Has any neuro-cognitive testing been done? That would creat a baseline to determine if ther is mild cognitive impairment (MCI) and be there to measure any further declines over time. I have them one once a year.
Finding a good team isn’t easy.
Have you looked at
http://Www.LBDA.org
They have a lot of great info about the disease, involvement with Parkinsonism, caregiver resources, and a lot more!!

I’m glad to help answer questions from a patient’s point of view.
I like to call it “from in here”.

Peace
Larry H.

Jump to this post

I wanted to also thank you, Larry, for your time and interest in communicating to this forum. The information and resources you share, as well as your kindness, has been very helpful to my mother and I, as my Father has been diagnosed with LBD with Parkinsonism approximately a year and half ago. God bless you

REPLY
@teacher502

He has had 3 sleep studies. He does have rapid eye movement behavioral sleep disorder. This fits with his diagnosis of PTSD and LBD. I don't think another sleep study would be in his best interest unless the study would allow me to stay with him. Also, he would probably be greatly distressed if he woke up with all of those wires all over him.
So far we have managed to sleep together- well he sleeps and I stay on guard most of the night to protect him from himself and to protect me from his unknown actions. We do have a row of heavy pillows between us for an added layer of protection. The CPAP has something to do with better sleep quality, but he often takes it off and then he begins his kicking and moaning.
As your last sentence states, you want to give your best…that was heart wrenching…because that is all that most caregivers want to do and personally- it can be quite a joy to be able to take on so many new responsibilities and a weight to try to figure out what is going on in someone's mind…and to try to make the best possible preparations for the twisty, curvy, unpredictable road ahead for both of us. It is amazing how strong love can be ….and at the same time life's circumstances can make it so painful.
Thank you again for all you do for others through this connection….
Together everyone is stronger!
Jan

Jump to this post

Glad he has done the sleep studies. Didd they aver try anything like clonopazem? Some folks have good luck with melatonin. I personally utilize CBD products to help me sleep. Thats about all that will let me get a decent 6 hour's sleep.
I think he knows he is blessed to have you.
Thank you for your dedication and wonderful outlook of the rewards of caregiving.

Love = everything

Peace
Larry H

REPLY
@tracyo

I wanted to also thank you, Larry, for your time and interest in communicating to this forum. The information and resources you share, as well as your kindness, has been very helpful to my mother and I, as my Father has been diagnosed with LBD with Parkinsonism approximately a year and half ago. God bless you

Jump to this post

Thanks for your kind words. Im glad that I am able to do this. It is a bit challenging but helps me to help others.

Peace
Larry H

REPLY
@teacher502

He is in the Mayo Clinic LBD Research Study and they have run every test possible. We do this once a year. However, no one has ever mentioned Parkinsons along with the LBD, so I am wondering about this….we go back to Jacksonville the end of September. I was also wondering if some symptoms (hallucinations/nightmares, etc..) just go away or diminish?

Jump to this post

My husband was diagnosed about 4 yrs ago. He has had REM sleep disorder. He has been on Nuplazid since Jana d it has really helped. We now get it from the VA.

REPLY

Thank you for the questions and answers so very helpful.

REPLY
@teacher502

He is in the Mayo Clinic LBD Research Study and they have run every test possible. We do this once a year. However, no one has ever mentioned Parkinsons along with the LBD, so I am wondering about this….we go back to Jacksonville the end of September. I was also wondering if some symptoms (hallucinations/nightmares, etc..) just go away or diminish?

Jump to this post

It’s interesting that they haven’t mentioned Parkinsonism with the LBD diagnosis. These diseases go hand in hand. LBD is caused by Lewy Bodies forming in the cerebral cortex. Parkinson’s happens when Lewy Bodies occur in the motor cortex. Since there are no firewalls in the brain, it seems almost inevitable that these abnormal cells will migrate. My husband (diagnosed in 2018 with LBD) has had increasingly had more Parkinson like symptoms. Movement, bending, balance, bradykinesia and whispery speech are problems. Hallucinations have increased over time, and now he usually can’t differentiate between reality and hallucination. He just started speech therapy and while they may not be able to help him order his thoughts coherently (wishing for miracles here), they will be helping him with enunciation and volume. He also has REM sleep disorder, which is common in LBD and Parkinson’s. He has a similar history with service in Vietnam and PTSD, and sleep apnea controlled via CPAP. He still dreams violently but the CPAP does help him sleep better. All the best!

REPLY
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