The Lewy Body Dementia Resource Center helps families, health care professionals, and the general public understand Lewy body dementia (LBD) and to bring much needed AWARENESS of this misunderstood disease which is not rare. People living with LBD, caregivers, and expert physicians share their personal experiences on how LBD distinguishes itself from other dementias. Topics covered in our video series are: EARLY SIGNS & MISDIAGNOSIS COGNITION ISSUES MOVEMENT ISSUES SLEEP ISSUES HALLUCINATIONS & DELUSIONS THE AUTONOMIC SYSTEM FLUCTUATIONS BEHAVIOR ISSUES HOW TO SPEAK TO SOMEONE WHO HAS LBD THE DIFFICULTIES & THE BLESSINGS
Once a fortnight My husband has a companion come and take him out for a couple of hours I made the mistake of telling him before hand. He was so stressed out, he was saying that he was sick and couldn’t go anywhere. That went on and on for a few hours. He said I didn’t care about him being sick. When the man arrived at the door he was fine to go with him. But I was also so stressed by that time that I just sat and cried for the 2 hours instead of going out. Now I don’t tell him before and he is fine When he arrives I just say-“look who has come to take you out for a walk “ We learn by our mistakes- it’s very hard not discussing things with him, but it’s for his peace of mind Thank you for the advice
Thanks so much for your videos. I am caring for my dad who has LBD. I find your videos and the stories of those who share very inspirational and helpful.
Thank you for your videos. My Mom has Lewy Body Dementia and has shared amazing stories with me of things she has been as if they were normal. Such as, a tiger with black and white wings. He is the leader of the rescue team where she had to serve food to and then her late Uncle Dan came by to tell her the flight is being scheduled soon. He will becoming back for her. Just breaks my heart. She isn't afraid of it either. She is very accepting. I embrace this time either way. Love my Momma something fierce. ❤
I’m going through all of this right now. Within the last 8 months I have been tested with multiple MRI, MRA, PET scan, EEG, and the 4 hour neurological test. First I was told I had mild Alzheimer Dementia . Now the Neuropsychologist said he thinks it’s Lewy Body Dementia. To me, dementia is dementia…
My mom had a bad fall 18 months ago. She fell back against a door frame and got a concussion and a small brain bleed, and she also broke two vertebrae in her neck. She had emergency surgery and was partially paralyzed , but gradually she got the use of her hands again and some strength in her legs but not enough to be able to walk without assistance. She's also extremely hard of hearing and has glaucoma and has lost vision in her right eye. She was moved to a rehab center, but, after having therapy for a few months, it became obvious that she would not be able to return to our home. At first, when she would start to talk out of her head, we could pretty much guarantee that she had a uti. But over time, she began to have hallucinations, delusions, and delerium without having a uti. It's now reached the point that she has a period of 3-4 days when she's agitated and can't sleep. During this time, she thinks that she sees all the things that have been mentioned here. She also thinks that she's been on trips with some family members who have been deceased for many years. She remembers these visions in great detail, and she remembers them for days or weeks afterwards. These are quite often something awful like a car accident or somebody being after them. After this period of 3 or 4 days, she'll usually have a day when she just crashes and catches up on sleep, and then she'll have a day or two when she is only mildly confused. Then, the cycle starts over again. I try to go along with these to the extent that I can, but other times she's very insistent and tells me to do certain things that I can't do. She gets upset with me when I tell her that so and so isn't here. I considered Lewy Body Dementia, but I heard that LBD came with Parkinson's. She doesn't have Parkinson's. Is there another type of dementia that acts like LBD but isn't, or can a person have LBD and NOT get Parkinson's?
I think it’s likely dependent on multiple factors such as other health issues coinciding with LBD. My mom died with LBD in 2017. She’d had open heart surgery nine years earlier. Falling and breaking her hip precipitated her rapid deterioration. She died a few months later.
My husband had Lewis Body Dementia and this has been by far the most helpful to me in processing what he had and all his symptoms/behaviors. Thank you so much for all who shared experiences and the Doctors who spoke! 😊
Norman you hit the nail on the head with people dropping the shoulder and saying I'm sorry esp if you are holding your Reborn emotional support doll lol then it's like you poor thing! 🤪
Listening to what the early symptoms are, I’m really afraid I might be in the early stages of. Just turned 65. I fall, I lose my balance, I trip, I’m exhausted after even a simple shopping day. Just interacting with people exhausts me.
Yes, my dad had children sights at first and now he is scared to death by something he can't tell me beacause he's speech is gone. Sad that that this is so common disease.
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 😊
All disease is all demonic. I am an enemy of this delibrrate attack on God's benevolence. I stroll thru the Garden of Eden by choice, & enjoy the foods He has freely given us for our healing & enjoyment. Dr William Li is a blessed messenger of alternative health, wished I had found him earlier
WHAT A NIGHT MARE SEVER PARKENSONS DEMENTIA AND SEVER LEWEY BODY. WISH IDA KNOWN WHAT I DO NOW WHEN MY PARTNER WAS GOING THRUIT. HALUTIONATIONS. ECT. 5 years of 24x7 caretaker. When he got on hospice it was a good send
What I’ve been gauging through all of these videos is that where nothing can be done in dictating how this progresses, longevity seems linked to managing anxiety/depression, diet and exercise, and a good support system/social involvement.
Excelllent infomation BUT really poor production.. Each small section is either really loud or really quiet. I have to continually adjust the volume. I think that presenting one person's whole shpiel instead of breaking it up. I beleive that you MUST reproduce this in order to improve our experience with it.
My mom has Alzheimer dementia but I see so many Lewy Body traits in her, now that I watch your videos. My question is how do I get her into a facility with 24/7 care if she doesn’t make enough to pay for it and makes too much for Medicaid. FYI… her (2nd) husband was in the military and fought in the Vietnam war and passed away 3 yrs ago. So could there possibly be benefits there ? She can’t live alone anymore. She poured cat litter in their food bowl yesterday and cooked herself a steak on the stove today but cant clean herself up after a diarrhea episode.
My mom has dementia. Sometimes she wakes and falls a sleep on a dime. For example, she woke up suddenly with a jolt and started looking for the cat that was in her dream. Her halucinations are mostly in her sleep/awake cycle. Sometimes she hears things even though she's very hard of hearing. She walks around looking for something, but doesn't know what. Now, she is losing her ability to communicate. There are so many symptoms I think she has it all.
My sister was a journalist for NBC, in NYC, for over 30 yrs. She retired at 64, to Ridgefield, CT. She started to forget things, and ,would lose her balance.She was diagnosed with Lewy Body Dementia, and had round the clock care ,diapers, etc. , for z4 yrs. She had to be helped with everything. She couldn't talk in sentences , and would barely whisper . In the beginning, she had hallucinations,and saw little green furry creatures. , The last 3, were at an assisted living facility, The Residence, in Darien, CT. She couldn't walk or talk, at the end, and went blind.
I was a live-in caregiver for a family friend that meant the world to me. He was my family. He suffered from this as well as combat ptsd, mild Parkinson's and a tbi. It was a battle. I wish I had seen this and had those crises hotline#'s back then. We were alone. I developed secondary ptsd, severe major depression and anxiety after he was put in the nursing home by his family. I was also experiencing anticipatory grief. I took care of him for 4 years. It was my weakness and my strength. Now I am taking care of my physical and mental health. I injured myself taking care of him. I am on the road to recovery...one day at a time. I thank God first of all for seeing me through and giving me the strength to keep going when it was going on and after he wasn't here anymore. He passed away on September 12 this year. He would have been 90 on October 31st. He was my hero.
I was wondering if there are auditory hallucinations? Hearing people say things when no one is there. Wait…. Just heard interviewed say her spouse started with auditory ones.
First check ALLWAYS>>> Your medications you take Mold exposure Vitamin/mineral deficiencies, healthy fats, vitamin D status. Methylation problems Gluten sensetivity Dental work, mercury fillings rootcanals, other dental work and used materials. Anestaesia Uric acid Chemicals in the house, work environment, cleaning products, make up, dro, perfume, creams lotions and so on. Addictions. Psychic meds. Alcohol Bad fats Sugar and sweeteners Tapwater/wellwater And so on...
Thank you for being so kind and helping people figure out their dementias. I feel sure I have Alzheimer’s with mom,grandma, aunt. In April this year MRI showed moderate dementia. My brother has Parkinson’s and mom’s great uncle had Parkinson’s. That was like 5 months ago. I woke up with overwhelming anxiety, depression and hands shaking. Now my hands have shook when I had MRI scan. All I know I felt like I was in a deep dark hole with all these symptoms and I knew I was not going to crawl out of this thing. I decided I had to accept this, learn as much as I can so I could deal with it better. I am thankful that my husband and I found a reputable family business that sells Lions Mane. I have to take it 3 times a day. If I forget I will start crying. It gives you energy and helps me do basic things. My house is a messs. I try to do breakfast for my husband and do something light at supper. I am 67 years old. I do take other supplements for depression and other for anxiety. If I go in the vehicle for a few hours I am extremely tired and exhausted the next day. I have the bodily movements and shaking hands as with Parkinson’s and what is so bad is as with Alzheimer’s depression is bad as well as high anxiety. I was exercising before but when these Parkinson’s symptoms came I try to walk but it brings with it so much fatigue. If you get on google I typed in how to get dopamine when you have Parkinson’s. Seven things are mentioned. One I got that is for dementias and it is Oil of Oregano (I got the micro ingredients brand). You will love it . I take magnesium glycinate Healing with Vemergy. This is GREAT for depression! Best to pair it with magnesium citrate to work better. It says take 2. That helped a couple of days but I take 3 and 4 at one time. I go by my symptoms and they let me know when they have calmed down. Take ashwaganda and magnolia bark for anxiety too. I take other stuff. I don’t want to overwhelm you! I felt like I adapted when I had Alzheimer’s only but when all these other symptoms hit me I felt hopeless. This was too much. I got on google, You Tube. Found out what not to eat, what supplements to stop. Let me tell you if I take something or eat something that my dementias don’t like it will give me shakes the next morning or anxiety or the depression. I don’t buy supplements that have been packed with harmful ingredients. I get excited when I have a good day. I count it as a blessing! I know there are going to be bad days following it. I have read and heard that so when you have a good day enjoy it.
Thank you ! It’s hard for the loved ones to deal with a family member who has LBD.. it’s up and down .. some really good days some really bad ones.. heart breaking 😢this surely helps and provides perspective… Excellent tips! Thank you! ❤
Can anyone tell us what kind of tests doctors can do when we have been told they cannot do an MRI due to the type of pacemaker our mom has. She's 85 and we believe she has dementia, but have no idea of what kind. Thanks for any help. PS. I am shocked to see all these folks talking about their own diagnosis of Lewy Body Dementia. Is their dementia different than other kinds of dementia as in these people seem so alert and know they are sick and what they have.
@@nancyparrott5865 Lewy Body Dementia is similar to a roller coaster, up and down, progressively getting worse over time. Over time is a general diagnosis of dementia that ten years later has very clearly become a clear diagnosis of Lewy Body. They still have better days and more worse days that progress. You will know, visual disturbances are common. Listen to what the partners, caretakers talk about. Alzheimer’s is very different. One thing to avoid all the way around is anesthesia. This is well known that it causes huge noticeable deterioration in cognition, in all dementia types. The medical community, not treating the brain, seem oblivious to sedating the elderly, trying to extend life at any price. A hospitalization usually precipitates noticeable deterioration.
I was shocked to see people acknowledging that they have it. My dad had LBD and was in complete denial that there was anything wrong with him. Now my husband has been diagnosed with LBD and he is in complete denial that there is anything wrong with his brain. He can’t deny the shaking and tremors and believes that the doctor will fix it. If you sat down and chatted with my husband you wouldn’t think there was anything wrong with him. It was the same with my dad. Once “the audience” is gone though, the show is definitely over. As a care giver one of the toughest things to deal with are the people that don’t believe there is anything wrong with your loved one. Even other medical professionals. I took my dad to an oral surgeon and the guy said he didn’t think my dad had LBD. This after my dad had introduced me to the nurse as his wife, gave his wife’s name. His wife, my stepmom, had been dead for over 12 years. This video has helped me not be quite so angry about having to go through this again
@@nancyparrott5865 self awareness. My mother is nearing her end with dementia and early on, she had sort of holes in things she did or how she acted but decided to deny them instead of acknowledging them. They came and went at that point - and I think these folks just knew to figure things out based on how variable they are and admission of loss of some function. I agree on their communication - almost all of them talk and converse better than i ever have. But the admission of things like not being able to read a clock or falling or feeling unsafe and having delusions, definitely not like a lot of us get just with increasing age.
