LBD Video Series: After the Diagnosis

Jun 29 8:00am | Nick Rethemeier | @nrethemeier | Comments (7)

Over the course of several weeks, The Hub will launch a series of videos focused on Lewy body dementia (LBD). Mayo Clinic experts and collaborating partners will walk you through different topics related to LBD. Videos include management of symptoms and improving the quality of life of the person with dementia and their caregivers.  

This week's video features Kimiko Domoto-Reilly, MD of the University of Washington. Dr. Domoto-Reilly was a panelist at the Lewy Body Dementia Knowledge and Support Summit on May 3. She shares how to live well with LBD, including next steps, empowerment through curiosity, and strategies to find and sustain hope.  

To find more videos on Lewy body dementia, visit the LBD Video Library and stay tuned to the Hub for a new video each week. 

Getting others to accept the diagnosis when at times they seem so normal is very difficult.

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This is true. I wanted others to understand and they accused me of exaggerating, embellishing, giving too many meds, making things up for attention, etc. Now that LBD is very visible…no one apologizes or seems to remember their crude comments…..and try to tell (not suggest or volunteer to help)me how to handle things…so frustrating..but try to love them anyway. Initially getting doctors to help or listen was difficult because LBD can be misdiagnosed and was for us. Mayo Clinic offered the greatest help and support….so thankful.

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To my understanding hallucinations make LBD very similar to Parkinson’s and hard to diagnose the difference. Would you say this is correct or what is the difference? My LO is showing more signs of Parkinson’s as this advances and wondering if medications for hallucinations are the same? We have another appointment with his neurologist very soon. Is there anything I should ask the doctor that would help me with medications?

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This was very helpful with some good suggestions. Thank you.

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@rudie

To my understanding hallucinations make LBD very similar to Parkinson’s and hard to diagnose the difference. Would you say this is correct or what is the difference? My LO is showing more signs of Parkinson’s as this advances and wondering if medications for hallucinations are the same? We have another appointment with his neurologist very soon. Is there anything I should ask the doctor that would help me with medications?

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Hello @rudie – you are correct in that LBD and Parkinson's have a similar pathway. My understanding is if the symptoms start with movement disorders and last a year or longer and then dementia follows, Parkinson's with dementia is the diagnosis. If it starts with the cognitive issues then LBD/DLB is the diagnosis and can also have movement issues later. You may want to confirm this explanation with your Neurologist. I think what you've posted here, is a great way to start the conversation with your Neurologist about medications and your loved one's journey. You could write down the symptoms that you are seeing and then address the medications question related to that. It is a complex situation, I hope my reply is somewhat helpful!

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@judyschroeder

This was very helpful with some good suggestions. Thank you.

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Hello @judyschroeder and welcome to Mayo Clinic Connect. Are you impacted by Lewy Body Dementia or are you a caregiver?

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@rudie

To my understanding hallucinations make LBD very similar to Parkinson’s and hard to diagnose the difference. Would you say this is correct or what is the difference? My LO is showing more signs of Parkinson’s as this advances and wondering if medications for hallucinations are the same? We have another appointment with his neurologist very soon. Is there anything I should ask the doctor that would help me with medications?

Jump to this post

Hello:
I am a LBD patient along with atypical Parkinsonism.
There are 2 types of dementia that share Parkinson's like symptoms:
Lewy body Dementia (LBD) and Parkinson's Disease Dementia (PDD).

I have been a patient with Mayo since my Parkinsons diagnosis in 2009 and trust them with my care.

There as some similarities between the two.

Here is a good link that lays out info on both LBD and PDD. I have found this to be a good primer to help understand each. You might find the differences in the PD symptoms as you mentioned the Parkinsons symptoms are more pronounced.
https://www.merckmanuals.com/professional/neurologic-disorders/delirium-and-dementia/dementia-with-lewy-bodies-and-parkinson-disease-dementia
Answers can be a bit hard to come by as many neurologists concentrate daily on movement disorders and not non-movement disorders.

I was first diagnosed with typical Parkinsons disease. As time went on we started noticing the cognitive changes. Many neuropsych tests later, psych doc visits and lots of clinical evals – here I am.

Hallucinations for me are not too bad at this point. Mainly auditory with a few visual thrown in for good measure.
They are present in both LBD and PDD with LBD being more pronounced.

for upcoming doc appointments I suggest making a journal of things that the both of you are noting – especially since your last visit. Little things and bigger things.
Even if you don't think something is important – log it.

For example – voice getting lower and harder to hear, Vision Changes. Very important to log things -even if you don't think they might be related. Let the docs tell you it isn't related.

It is also good for your reference to track things and declines. My wife and I have been doing this for a few years. When I go to the docs – they really appreciate the detail. I print out a copy for myself and one for the doc. Then we go over the list line by line.

You might be surprised at how this might help the doc to prescribe meds, Also if meds are prescribed – keep agood log of effects – positive or not so positive. the can help in adjusting doses or changing meds.

For me meds have been a challenge. With Parsonsins. and Parkinsonism there are classes of drugs that you need to be aware of. All if there is any LBD or PDD involved there are drugs that aren't good.

I run into problems when seeing a specialist like my GI doc. He will prescribe a med. I will research it before filling it and also ask my neurologist to make sure it is ok to try.

Is your LO taking anything for the Parkinsons symptoms like Carbidopa / Levodopa?

Peace
Larry H

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