What is Lewy body dementia and how is it treated?

Presented by William Mantyh, MD, a neurologist at the UCSF Memory and Aging Center as part of the Lewy Body Dementia Caregiver Webinar Series supported by the UCSF Memory and Aging Center and the Administration for Community Living.

[@annekristineosoffsky3222]

In December, 2017, my oldest brother was diagnosed with Parkinson's disease. I was diagnosed with Parkinson's in 2004. He was placed on C/L ( generic Sinemet). I have been on this medication since 2007, & told him that as long as I take my medication regularly, my symptoms are well controlled. Unfortunately, we knew it relatively quickly, that Greg's symptoms were more "severe". Hallucinations, sometimes violent, & physical deterioration was swift. It was not until his autopsy that we were given the diagnosis of Lewy Body disease. Greg was the strongest, brightest person I have ever known. It has been 6 years since his death, I am still in shock how swiftly this disease brought down the "Goliath" in our family. God bless every family that this disease traumatizes.

[@staceylowe258]

Thank you for this video. I work with a pt w/ LBD and have a parent with Parkinson's so learning more about dementia and disease progression as layed out in this series has helped me in my practice and advocacy.

[@darlinspaces]

My Uncle has this since only 69. I asked my Dr if it can be hereditary and she said no. Then she says” if you have Dementia, that’s it”. As if to say there is no help? Sometimes Doctors can be so off putting I don’t understand them.

[@allonaread3037]

So so wonderful Ann. Thank u so much . I have this. I am several years now. Lots t take in !!. It is nice to talk to someone or listen about that thank you so much

[@apostolicvegan6774]

This was an excellent talk. Thank you!

[@margaretbaldauf302]

Very informative!

[@barbarahuttmann8055]

Seroquel helped my husband greatly, in the last of the 7 years he had Lewy body dementia. it calmed him and decreased the hallucinations and anger.

[@pippy2157]

Thank you for this info

[@cindylee7855]

It's helping my dad at night right now.

[@jaymuse9353]

It's helping me right now, too. EOAD for me.

[@tracysmith245]

@@jaymuse9353 i have to care for husband's mother soon enough just found out she has mixed type this has helped me loads i work with people with dementia and never understood the difference though i know some hurt us more than other ones do that is all i just hope i can work around it with 2 kids one is at the last year of high school the other is starting uni for sport which is good she is studying health fitness might help me as i do not talk to his mother really anymore think it was a mother and son thing staring at us ignoring me all the time spending time with my children i feel like an outsider in my own house.

[@elsiekaminski8588]

Finland has a very high incidence of dementia.Could that be caused by mold issues in their homes

[@odontomatix]

Loss of smell is one of the earliest signs of LBD, perhaps even a pre-clinical sign that precedes the other more apparent signs and symptoms. Autopsies of patients with LBD show degeneration of the olfactory bulb of the brain, which lies above the nasal chamber and at the bottom of the frontal cortex of the brain. The degeneration can be found in some people who haven't yet shown signs of LBD. This makes me wonder whether LBD, in some cases, originates in the olfactory bulb and could be acquired as an airborne disease. The basic molecular defect is clumping of mis-folded alpha-synuclein proteins in the brain, which spread the mis-folding to adjacent alpha-synuclein molecules by coercing them to mis-fold and eventually to clump into Lewy bodies. A similar effect is found in Mad Cow Disease, where misfolded proteins called prions are acquired from the environment or by ingesting prion-infected food. Researchers were able to track the spread of alpha-synuclein from the gut to the brain by way of the vagus nerve in mice. LBD may be an acquired disease, either through the air or from the gut, I speculate. www.nih.gov/news-events/nih-research-matters/tracking-spread-parkinsons-proteins-gut-brain and www.ncbi.nlm.nih.gov/pmc/articles/PMC4835172/ . Also see: www.ncbi.nlm.nih.gov/pmc/articles/PMC5498170/ which found Lewy-type synucleinopathy (LTS) in the peripheral nervous system, including in the salivary glands and esophagus, but which concluded: "It would therefore appear that α-synucleinopathy likely begins in the CNS and spreads both rostrally and caudally. Given the frequency of isolated LTS in the olfactory bulb of ILBD cases, the initial onset may well be in the olfactory bulb."

[@duaneshumaker3788]

Have you read about Dr. Dale Bredesen Recode protocol and Dr. Ritchie Shoemaker's protocol? I think combining both protocols may be an avenue to better treat LBD.

[@pomegranate5072]

Is there a good reference list for treatment protocols and the rationale behind the drugs used? In particular I'd like to understand the role of AchE inhibitors vs Antipsychotics in the management of delusions and visual hallucinations as our doctor (I believe wrongly) is insisting on antipsychotics as first line.

[@odontomatix]

www.lbda.org/treatment-options/

[@alissagonzales735]

My husband was just diagnosed with mild dementia. Yet his mother and father never had it. His father and mother were healthy and mentally sharp til they passed away at 90. As we're his grandparents and uncles and aunts. Who also were in their 90's when they passed on. All of them would go to Vegas to play poker or 21 etc. In fact two weeks before she passed we all went to Vegas. I went shopping she went poker playing. They all loved poker.. What the heck happened to my old man. He's in his late 70's.

[@paulohlsson27]

Hi Alissa, how's your day going with you?

[@darlinspaces]

I believe it can have something to do with mould. Most problems today come from mould and glycophosphate. I quit gluten because of the glycophosphate. Honest to God Drs don’t want to say how bad it is

[@michaelfannon4190]

Do Medications used to treat anxiety and depression cause Dementia like my parents say?

[@zazasworld8377]

How does one get this illness

[@boe1956]

Is Memantine appropriate for Lewy body dementia?

[@havanadaurcy1321]

Question: My great grandmother had this but also Parkinson's. Can one cause the other?

[@leoross5777]

no one knows what brings on SPS

[@shelly-7236]

This sounds a lit like my fellas mum, only she says she never sleeps as she has night terrors as she was pgysicly and, sexualy abused badly as a child. She's falling not eating. Cutting up payment card.constantly repeating the same sentence.

[@jodistiles8811]

How do I find a doctor who understands this disease?

[@odontomatix]

www.lbda.org/research/research-centers-of-excellence/

[@leoross5777]

most drs dont. and will misdiagnose it as alzheimers

[@lifewithjimmy4389]

Oh come on man!! Don’t even……. This disorder sounds really BAD!! I’m sorry!! Wtf???both my parents had it……I don’t want this!! This sounds like a nightmare!! It’s hereditary?????? 😳😵‍💫😟😳🥺😟😵‍💫what a mind bender!!! 🥺