LEWY BODY SYMPTOMS SERIES (ALL)
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- Опубликовано: 25 авг 2024
- This is the full compilation 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 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.
The 10 topics covered, in order, 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
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.
Wishing you continued strength, healing, comfort. ❤
Thanks to everyone for sharing. Everyone's comments help us to know we are not the only ones going through this.
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.
What an eye opening documentary. Thank you to all who participated. You have helped me beyond measure in my caregiving journey with my husband. I wish you all the best in your own journey & much happiness now & 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! 😊
God bless these people.
I loved this series. I laughed and cried, but I think I understand it better.
Thank you so much to each and everyone of you involved in the making of this video. I have learned so much.
Ann's beautiful mother Betsy passed away peacefully on January 1, 2023.
May she rest in peace 🙏🏻
Thank you. My mother is being evaluated right now but she has hearing loss so that makes the process more challenging. They have stopped the evaluation until they find a better way to communicate with her. A lot of her symptoms seem to be lBD.
Now I understand the disease. Progressed in 6 months after back surgery. Went from not being able to stand to wheelchair. Operation a success and was needed. Delirium after surgery, then LBD with Parkinsons's symptoms. He talks in a whisper and cannot walk. Has trouble feeding himself. We went from thriving retirees to patient and caregiver. Difficult to get housing in Memory Care facility. Cost is going to put us both in government facilities. Golden Years?
Thank you so much for this series!
i am SO GRATEFUL!!
It's interesting about the small animal hallucinations in several cases.
Blessings to all who travel this difficult road.
Incredible depth and reality. Much needed. Thank you
Thank you
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.
So sad. I am so sorry
Thank you. I think my husband may have this along with his vascular dementia
Thank you. This was awesome and so timely.
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.
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.
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 husband had FTD, we think but he also couldn't manage money or an escalator. Very frustrating for both of us.
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.
I agree. No one seems to have any memory or reasoning problems. Why please? How?
@@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.
Thanks for the information. Could dementia run in families particularly ones offsprings .
Why would speech be a tool to assist for a whole body functional and cognitive situation ?
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