Ep. 4 - SLEEP ISSUES in Lewy Body Dementia

Lewy body dementia (LBD) distinguishes itself from other dementias in many ways. SLEEP ISSUES are a large component. People living with LBD, caregivers, and expert physicians share their personal experiences.
This is Episode 4 of a special 10-episode series filmed by the Lewy Body Dementia Resource Center to help families, health care professionals, and the general public understand LBD and to bring much needed AWARENESS of this misunderstood disease which is not rare.

[@toryberch]

My sleep problems started about a decade before my lewy body symptoms really kicked in. Insomnia was what started then it progressed to restless legs which went from bad to worse.It was off the charts!! Then the horrible dreams started of my grandaughter being attacked somewhere in the dark 🌑 she was crying for me and i couldn't find her 😢😢 thankfully only a couple intense dreams so far. Sometimes I act out knitting or talking.
Runny nose started several years ago when Parkinson's symptoms started.
Nobody ever tells you the small symptoms are connected to this disease. I am on 59 and hope to live through my 60's 😊

[@julesonthebeach777]

I was a sign language interpreter too and wake myself up signing. My mom had LBD and she died in late 2017. I’m recognizing the symptoms in myself.

[@thecrafteaneighbor5177]

My mother lives in an independent facility in a small town in Northeast Indiana. She recently been acting out in her sleep. One night, about 3 weeks ago, when she was still sleeping, she thought she heard someone calling her for help and so, she got up and went to go find the person calling her to try and help them. She walked and walked looking for this person, who was still calling her, oblivious to anything around her. And then, she woke up. She was outside her apartment facility, down the street, next to a stop sign for the main road. It was about a 10 minute or more walk from her home building. It was around 12:45 a.m. and 29 degrees outside. She was dressed only in a thin, polyster, short-sleeved, mid-knee nightgown. She instinctively had taken her walker as she is disabled and has difficulty walking for a very long time. She then walked back to her building, which was locked for security. She had to bang on a window of another resident she knew to let her in. The resident let her in and reported it to the facility manager the next day. It was then that I got a call. I live in another State. I spoke to the manager who verified their surveillance camera showed my mother coming in. It only heard her going out. They think the time span she was out was almost 2 hours.
Me, my siblings, her family, care providers, neighbors and others have heard and seen other things for a few years now, progressively getting worse. Last August, she was hospitalized for an illness. I was visiting at the time and went in to see her. She started talking about how the staff had taken her home in the middle of the night to find something. She really believed this happened, though she had never left the hospital, according to the staff.
She's also been saying she's been seeing children in her bed, her dead parents talking to her, a woman running out her apartment she thought was my granddaughter. She ran after her and thought she went into her new neighbor's apartment. She frantically knocked on the neighbor's door and when she answered, demanded if her granddaughter was there. It frightened the neighbor who didn't know my mother very well, as the other residents do. My mother has lived in her apartment for 20 years and doesn't want to leave. I know she has hidden quite a lot.
These are only a few examples of what has been going on with my mother. Due to the episode of going outside in her sleep, I made a doctor's appointment & attended with her. She had said the doctor didn't think she had dementia. But then I told him what happened and that her mother had died of Lewy Body Dementia, that a sister only about a year older than her had also died of Alzheimer's. He immediately put her on Dementia meds and put a referral in to see a neuropsychologist. That appointment is upcoming. Though, I believe she is a good candidate for LBD. The one thing I really found surprising watching these videos was the runny nose part. My mother has been complaining of her nose running and not stopping for months. She's getting tired of it. That added fact has only made me think she has LBD even more. I am hoping for answers at her upcoming appointment.

[@lewybodyresourcecenter]

Ann's beautiful mother Betsy passed away peacefully on January 1, 2023.