Themiya’s story: living with dementia with Lewy bodies

Thank you! It's comforting to know that it's not just us going through this...

Closed caption not needed. The lady has an accent and is perfectly understandable.

My mother suffered from Lewy Bodies dementia and she had very similar hallucinations. Her cognitive functions got worse over time but she never forgot who we were, even at the end, so there is comfort in that.

My mother has been diagnosed with LEWY body dementia. It’s a tough time but we are taking it day by day. Much thanks for this video and shining a light on this horrible disease.

Nicely explained

My grandma has Parkinson’s, and lately has been having hallucinations she sees people sitting on her sofa, and goes to hit them and they are not there. She did have a water infection, could it be that or dementia?

This is (in USA) exactly what Joe Biden is suffering.

Been there with my Dad,...exactly EXACTLY the same story

So Estelle Getty died 85 from this is that the age it starts?

What he saying?

Praying for those who are effected by this awful disease.

Thank you for sharing, Themiya … ♥

Dementia is a nightmare. Find a cure !

Thank you Themiya.

Scottish ?

What a life, I hope we all have to courage to laugh,and love each other despite all this bullshit we have to deal with

My dad was diagnosed with Parkinson’s-Dementia complex but I think he had Lewy Body dementia. He always had hallucinations and falls during the early stages. He recently died after 5 years of battling this disease. He became nonverbal so quickly. Everything happened so fast, we were not ready to let him go. Once swallowing problems begin, that’s it.

Do you sing in Sinhalese, your Father has a lovely voice reminds me of my Grandfather singing.

God Bless You & Your Beautiful Family❤🙏🏻

Much love to you all.♥️

Hopefully they find a cure

I lost both parents four weeks apart, my Father had Alzheimer's, and my Mother was diagnosed with Vascular Dementia, but I strongly believe she had Lewy Body Dementia as she had hallucinations, trembling and many falls in which she broke her wrist in one and fractured her back in another. A few days after my dad was cremated, my Mother took an overdose which lead to her death. I am now undergoing tests as I have had symptoms for a while now and I'm 56.

My grandad died if this dementia/Alzheimer’s disease I wish I had known this to save him

So its aniloid black on tbe brai. Not rly the holes from footbell

What's frustrating to me is that there is a medicine that very well may be a game changer for DLB: Neflamapimod. After Stage 2 trials, the findings were that it actually modifies the patients physiology in a helpful way; it works! It was granted FDA fast track status in 2019, but progress seems to have stalled. Maybe b/c of the COVID lockdowns? It's especially frustrating b/c we see how quick they rolled out the COVID vaccines. Something which can help my mom, who has not yet progressed to any Parkinson's symptoms, is out there, but it may never be approved in time.

To the people in this video thank you for taking the time out of your personal life to share with us what it's like for your family going through this journey with your father god bless you and your family
It's stories like this that help other families I wish you were not on here with this story but your story helps people like me who's father is going through this what is ahead and what we need to know to make life easier for everyone being part of this journey with a loved one who has any kind of dementia alzimers

Get him on a all fruit diet and watch the protein/mucus clear up on the brain. If he have proteins on the brain than that should tell you to stop feeding him meat.

I believe that my dad had Lewy Body dementia. He was diagnosed with dementia with Parkinson. He ended up taking his life earlier this year in Janaury.

I have just started to have dementia. It is most likely Lewy body. It's an odd place to be, mentally. I just want supporters to know that I am not uncomfortable. I am forgetful, confused, and such... but I am not uncomfortable. We all go out someway. All-in-all, this is not a bad way to do it.
Do remember that as a brain dies, pieces of us go with it. If we act out, you are not the reason. If we loved you before, we love you now.

My mum was the same it took 10 years looking back for her to be diagnosed

So sad

I am a Caregiver and my client is 85, she suffers from Hallucinations. Sees little people, sometimes is only audio hearing people in the house. She walks good but is slumped over to a degree.. Does most everything for herself. She can be easily agitated and can go from being on her game as much as possible to confused within the hour. In fact it is always that fast, then she can get smarter. Never heard of dementia being this way so I think she has Lewy Body Dementia. Family doesn't seem to want to know... so I'll keep it to myself. Been ensuring we walk daily to keep her limbs from getting stiff, they say she has arthritis and maybe so but...

Same thing happened to my dad. Hallucinating, seeing people in the house, that led on to him stopping eating and drinking altogether. Spent the last 6 months in hospital. Would act out dreams in a vivid lucid manner, haing psychotic episodes. Was having falls due to postural hypotension, was initially diagnosed with parkinsons, however the trail of symptoms and the order of them occuring, they are basically 80 % sure its now LB dementia. He responded great to Rivastigmine, on levadopa. Overall, is doing alot better now, no more hallucinations, on drug trials when he gets worse, but generally he is massively improved than from christmas time. So will see what the prognosis is, it could be significant amount of time he is good still, or just for a few months. Just have to bless each day.

Ditch the drama music. Way to present in the audio mix. Hope that helps.