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Lewy Body Dementia - What are your questions?

Apr 13, 2021 | Jodi Melius | @jodimelius | Comments (45)

During our upcoming Lewy Body Dementia Knowledge & Support Summit we will be hearing from leading experts on LBD!

What are your questions? Do you want to learn more about sleep, medications, movement? Or do you have general questions about Lewy Body Dementia?

What does it mean to live well with LBD, and how do caregivers and families find support and joy in this journey?

Please comment with questions!  We hope to see you at our upcoming LBD Summit on May 3rd!

 

3 Reactions

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Jodi Melius | @jodimelius | May 6, 2021
In reply to @dlhays "Could you share a list of the drugs / drug classes that one should be at..." + (show)
@dlhays

Could you share a list of the drugs / drug classes that one should be at best cautious of for people with LBD? (eg I noted Haldol and Seroquel, but missed the names of some of the other ones).

My mother's LBD is advancing. She has never been assessed for sleep apnea that I know of. However, she sleeps on her back, snores loudly, and seems to snort at times at night. She experiences hallucinations and is increasingly having nightmares and yelling out at night. Is it too late to assess her for sleep apnea? It would be a challenge to get her to wear an oxygen mask or sleep on her side, so I am not sure that it is worth it to try to assess her.

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I would encourage you to have her seen/assessed for sleep apnea by your local provider/sleep medicine specialists. The expert panel discussed this at length- the importance of addressing sleep apnea, stating that even tolerating the mask or treatment for part of the night, is better than not at all. Also, I did link the medications PDF to your question under my most recent post in the Dementia Hub newsfeed. Thanks for reaching out.

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Jodi Melius | @jodimelius | May 6, 2021
In reply to @jkostyn "Is there a link between Posterior Cortical Atrophy and LBD? My parnter's first symptoms were all..." + (show)
@jkostyn

Is there a link between Posterior Cortical Atrophy and LBD? My parnter's first symptoms were all visual and he was diagnosed with PCA before other symptoms began to become obvious.

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This is a great question, I will add this to the list we will be presenting to our experts, and addressing in the coming week(s) in our newsfeed. Thank you for reaching out.

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Jodi Melius | @jodimelius | May 6, 2021
In reply to @mikeshilts "Thank you for the session this morning. Did I hear correctly one of the doctors say..." + (show)
@mikeshilts

Thank you for the session this morning. Did I hear correctly one of the doctors say that olanzapine should not be prescribed because it is a dopamine blocker?

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Because medications are so individualized for each patient, I will share this PDF document on medication guidance for people with LBD. It is located on the LBDA.org website. Here is the link to the document: https://www.lbda.org/wp-content/uploads/2020/09/medication_glossary_2015-1.pdf

Thanks for reaching out.

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1 reply
everplank | @everplank | May 6, 2021
In reply to @jodimelius "Because medications are so individualized for each patient, I will share this PDF document on medication..." + (show)
@jodimelius

Because medications are so individualized for each patient, I will share this PDF document on medication guidance for people with LBD. It is located on the LBDA.org website. Here is the link to the document: https://www.lbda.org/wp-content/uploads/2020/09/medication_glossary_2015-1.pdf

Thanks for reaching out.

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This list is very helpful. Thanks

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pilling | @pilling | May 8, 2021

Does anyone have experience with the GI effects of the Exelon (Rivastigmine) patch? DO the symptoms settle down and if so in what time period. Do they reoccur when advancing from 4.6 to 9.5 mgms? Does it have ANY effect on Parkinson's gait and balance? Thanks!

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1 reply
Jodi Melius | @jodimelius | May 10, 2021
In reply to @pilling "Does anyone have experience with the GI effects of the Exelon (Rivastigmine) patch? DO the symptoms..." + (show)
@pilling

Does anyone have experience with the GI effects of the Exelon (Rivastigmine) patch? DO the symptoms settle down and if so in what time period. Do they reoccur when advancing from 4.6 to 9.5 mgms? Does it have ANY effect on Parkinson's gait and balance? Thanks!

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Thank you for this question. I will add this to our list we are compiling for our experts to address in an upcoming newsfeed post.

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1 reply
pilling | @pilling | May 10, 2021
In reply to @jodimelius "Thank you for this question. I will add this to our list we are compiling for..." + (show)
@jodimelius

Thank you for this question. I will add this to our list we are compiling for our experts to address in an upcoming newsfeed post.

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Thanks so much! BTW...that medication list from LBDA is FABULOUS!

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caregiverlbd2021 | @caregiverlbd2021 | Jun 23, 2022
In reply to @hopeful33250 "How difficult is it for practitioners to differentiate between a diagnosis of LBD and other cognitive..." + (show)
@hopeful33250

How difficult is it for practitioners to differentiate between a diagnosis of LBD and other cognitive disorders like Alzheimer's, etc.?

Are there meds currently to treat LBD in the same way there are meds to treat Alzheimer's?

Generally speaking, how long does it take for a person to be diagnosed with LBD? Is there a particular pattern to the symptoms of LBD?

Are therapies, other than meds, available to treat LBD?

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I know this is an old post but I hope this helps, all of these questions have been answered for me by listening to the new podcast called Lewy Body Rollercoaster. Its hosted by a man who has Lewy Body and Linda, who’s husband has LBD. They speak of their experiences, interviews with other families, they have online support groups, and medical professionals and authors have also appeared on episodes. Its a fantastic podcast, I’ve learned SO much.

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2 replies
tracyo | @tracyo | Jun 24, 2022
In reply to @caregiverlbd2021 "I know this is an old post but I hope this helps, all of these questions..." + (show)
@caregiverlbd2021

I know this is an old post but I hope this helps, all of these questions have been answered for me by listening to the new podcast called Lewy Body Rollercoaster. Its hosted by a man who has Lewy Body and Linda, who’s husband has LBD. They speak of their experiences, interviews with other families, they have online support groups, and medical professionals and authors have also appeared on episodes. Its a fantastic podcast, I’ve learned SO much.

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I tried searching for this podcast and cannot find it. Does it still exist?

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1 reply
carolee888 | @carolee888 | Jun 24, 2022

I have questions about Vascular Dementia, is there a place where I can ask about that?

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