My 87 year old dad was running around the paddock in the middle of the night. We would be chasing him but by sunrise he would be covered in cuts and grazes. Everry time we fell asleep he would get up and go outside.

Doctors really need to become more aware of this disease, especially neurologists. My dad was diagnosed with Parkinson’s disease and two years later, with dementia. His hallucinations started early on with PD symptoms but his neurologist thought it was the carbidopa/levodopa medication being too high, so he kept adjusting it. My dad had all of the symptoms listed here.

I lost my dad shortly after his diagnosis. He had severe delirium and a UTI which aggravated his condition. Thank you to all who do important work with DLB.

Communication may be a key ingredient, but my father is profoundly deaf and can no longer hear anything I say, plus he is severely visually impaired, so he also doesn't get the visual cues from speech.  If I try talking more loudly so he can hear me, he thinks I'm shouting at him and gets really nasty.  These days all I can do is shake and nod my head, or try and play charades to get him to understand. He absolutely refuses to go to the Dr. and get his ears cleaned, refusing to get out of the car.  Plus he is absolutely sure nothing is wrong, that he doesn't have hallucinations or delusions and it's exhausting. We are a small town, and there are no support groups or day centers, plus as there's "nothing wrong" with him, he would absolutely refuse to go to one. I'm slowly drowning.

Thank you...My dad has dementia...This helps me to understand his condition...I tried it alone and it didn't work well at all,  so I had to put my dad in a nursing home...This condition of dementia is a heart breaker...😪

Every time I get on the phone she rushes into the room and asks why I’m talking about her .

My mother was recently diagnosed, but has been having many of the symptoms for the last 2 years.  She hallucinates, becomes irritable and verbally combative, and even has become an overt racist.  I feel very bad for her caregivers, as many of them are People of Color.

Best presentation I have seen regarding what to expect with LBD, the stages (so helpful!) & strategies for capgras (also known as reduplicative para-amnesia?)  = increase time away from the person (not always easy to do, but better to plan this in yourself , rather than being repeatedly driven from the house due to paranoid ideation). Presenter has a wealth of experience & excellent diagrams for us visual learners. Thank you so much 👏👏👏💗🙏💐

I am Sally's sister, and I have also benefited immensely from Careblazers, both in having a common ground with my sister, but also in caring for my mother-in-law for a number of years. Sally mentions the need for support for the caregiver, and it cannot be emphasized strongly enough how important this is. Loving siblings are wonderful, but the caregiver also needs people who share, and therefore deeply understand, their daily struggles. Sally was fortunate in finding a group of caregivers online.

I'm 63 and am convinced that I have early early Lewy Body symptoms. My Grandmother, Mother, and Aunt all died with dementia (never specifically diagnosed) but I was a caregiver for both my Grandma and Mom... I KNOW it is LBD. My mom told me she thought she was getting it at my age and I denied her reality. I'm still here... but I'm fading.

Thank you so much for this video.  Although I'm still without a professional diagnosis for my mother,  this video went through all her symptoms someone using the exact language i and my step dad have used. Even if there isn't anything to truly be done it's nice to have some clarity on the situation.

never diagnosed til near death, drs are uneducated in LBD

My dad had Lewy bodies.. anti psychotic medications were "counter indicated".  Made things worst more agressive more anxious.  The specialist in dlb stopped the anti psychotic medication has they work opposite on dlb patient.  It became manageable once anti psychotic medicament were forbitten for him.  They adopedd another strategy and he never had another episode of agressivity after that.

My dad was diagnosed with Lewy bodies in November 2019. I am terrified to see how this progresses...

Recently I’ve been following a young couple who are in their late 40’s and the young man has developed LBD. He described an interesting sensation that occurs when he get so fatigued he just “zones out” he feels it start near the frontal cortex and then moved up and over his head. He then withdraws and takes a nap. He doesn’t sleep well at night also. His wife and childhood sweetheart is a nurse and so she has had to quit working to take care of him full time. Neither of them are even 50!

Extremely educational and helpful. Thank you so much for your time to this cause.

When she showed the image with the landscape I saw the face of an old man with his eyes closed. Very informative video.

In the last two weeks of Lewy, my husband was helped alot by Seoquel, to sooth his anxiety and constant need to move about

Thank you for this information.

Studying dementia and prevention, this presentation was really interesting. Thanks for the information.