1. < Caregivers: Dementia

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.

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ava2brian | @ava2brian | Aug 24, 2021

Thank you for the questions and answers so very helpful.

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frankandkaren | @frankandkaren | Aug 24, 2021
In reply to @teacher502 "He is in the Mayo Clinic LBD Research Study and they have run every test possible...." + (show)
@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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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!

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teacher502 | @teacher502 | Aug 24, 2021

Wow...thank you for all of this information. My husband is in great physical shape. He is running another 5k this Saturday, golf's 2 times a week, plays with our grandchildren, swims with them, cuts our grass, cleans the pool, rides his bike, drives, etc...
In other words he is still very active. Perhaps this is holding off the most noticeable symptoms of Parkinsons...(.I am not a doctor but somedays I know I understand more than many local doctors about LBD.... yet there is so much more to learn). He does have the soft speech and he cannot raise his voice like he used to. His hands tremble slightly; it is not noticeable except when we hold hands, and hallucinations are just shadows (according to him), and he has a difficult time speaking. We go back to Mayo end of September, and I will ask more questions. Thank you again for this feedback.

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Larry | @larryh123 | Aug 24, 2021
In reply to @frankandkaren "It’s interesting that they haven’t mentioned Parkinsonism with the LBD diagnosis. These diseases go hand in..." + (show)
@frankandkaren

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!

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Thanks for sharing all of that and bringing light to the inter workings of LBD and Parkinsonism. In my case the Parkinsonism was first outward sign of a problem so I was diagnosed with Parkinson’s. We dug deeper and found that I was having some cognitive problems before that. So after all of the neuro-cognitive testing, scans and imaging and blood tests and eliminating other things here I am LBD with Parkinsonism.

Thank you for your devotion to your husband.
You taking the time to become so familiar with the disease is a big help. You can be a great advocate and ask some of the questions the docs might overlook.

Peace
Larry H

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jenniferemery | @jenniferemery | Jul 6, 2022
In reply to @larryh123 "Hello: I am a LBD with Parkinsonism patient. Like your husband I was diagnosed when young...." + (show)
@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.

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I have been diagnosed with Parkinsonism. What is the difference between parkinsonism and Parkinson’s disease?

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Julie Chitwood | @billchitwood | Jul 7, 2022
In reply to @larryh123 "Glad he has done the sleep studies. Didd they aver try anything like clonopazem? Some folks..." + (show)
@larryh123

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

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Bill has used clonopazem for years - mainly against doctor's wishes - but it has helped him sleep a little. Latest doctor is taking him off of it - slowly - and trying something new that could addess the anger as well, as I understand it. At least the 'I'm being murdered, must protect myself' nightmares seem to have stopped! Thank heavens. He wanted to keep a knife in the drawer! Or get a gun! I vetoed those ideas quickly and removed the baseball bat.

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