Thank you for mentioning the use of Colazenpam to help with the muscle jerking. My Mother has dementia. I went home to AZ from TX to discuss medical issues regarding my Mother. My sister went behind my back and used the 'sundowning' way to get Mom to sign a new medical POA (dummy that she is, doesn't know that my Medical POA could be used no matter where I lived...not a good home situation).

I asked my sister if she had talked with Mom's doctor about prescribing medication to help with the muscle jerking. My sister told me that the doctor said that nothing could be done about it.

I told my sister that was a lie and the doctor knows what can be used. I told her that I have to take Colazenpam for restless leg syndrome and that it had been originally developed to help people like Mom. I even wrote the name of the medication and told her to talk with the doctor. That Mom needed something to at least help relax her muscles so that she could get a better night's sleep.

I know that my sister never said anything to the doctor as my Uncle, Mom's brother informed me that the tremors are becoming worse.

It's not a cure as stated, but it helps me for restless leg 99.9% of the time. I know that it can help Mom.

I just want to thank you all for helping me with LBD

Oh, my heart goes out to you. But, you are for sure doing the right thing. It really does help to just write it out. I worked full time and I know my co workers and boss were sick of hearing about it. We now have my dad still living at home and I'm so thankful he's got all his "faculties" and is fully capable of taking care of himself at 84 yrs old. My sister does light cleaning and some laundry for him when she stops over and I take him take out some nights, but I still work full time and don't get home until 7:00 pm. But, that could all change at any time. I feel a little prepared at least. Mello, please take care of yourself - you're doing all you can for him.

mello06, thanks for your input and support. A bit of time has passed since I wrote that and the guilt is slowly fading but still have my moments where I am irrational and want him home. He cannot walk, nor stand now and has lost use of left hand which is bad since he is left handed. His memory has become much worse but still knows who I am and if anyone comes to visit, he does know them. Most of what he says makes no sense. He used to have a loud and booming voice and now it is a whisper. He is losing his ability to feed himself too. As we all have said many times, it is a sad journey. He is well taken care of, you are right and loves his nurses and CENA and most of the staff. He never asks to come home anymore nor asks for any of his family members, he has 4 sibling, a mom and 2 daughters who have deserted us. Thanks again, it helps to write it out, most of my family and friends are sick of hearing it all. Pixie, I am so sorry to hear of the tragic loss of your mom. This makes it even more important that my husband is where he needs to be.

mello06 You are so right. We did everything to keep my mom in her home with my dad and hired caregivers for the days Medicare wouldn't pay for, but sadly, my mom died after rolling out of bed and getting her head/neck wedged between her bed and her nightstand. Dad left her there until daylight came and he "felt comfortable" calling one of us kids to come help. By then, her blood supply to her head was compromised enough that she had a stroke. She became a hospice patient and passed away within days.

Betty G. Please drop the guilt. It is almost impossible to take care of a person with this condition at home especially a woman. It's difficult for CNAs to care and keep clean & dressed and fed in a facility but they have a system and multi care takers and activities people who are trained in body mechanics and have machines to lift and transfer residents who otherwise could not be moved manually. Most women who try to do the care taking at home wind up in nursing homes because they got hurt trying to move a loved one and care for them at home. Not to mention phone calls at 2:30 AM from police saying he's driving on a major highway at 20 miles an hour 100 miles away from home if the afflicted can still walk, How about the combative periods it's almost impossible for a woman to deal with.

Nursing homes provide a structured safe environment. with activities meals and incontinent care. AM care dressing, hygiene help, beauty salon, barber shops 8 AM breakfast in room or dining room, activities or entertainment after lunch and dinner and more activities after super In fact some residents at nursing homes who have cognitive abilities say they didn't have this much company and entertainment in their entire lives. Please be assured that you did the right thing.

Betty G -- you have no reason to feel guilty. You did the best you could for as long as you could. He is where he needs to be now.

Great info here. Hubby has LBD and we do not really know how long he has had it. He had some symptoms, looking back years, but was being treated for depression all those years. His walking rigidity and shuffle was attributed to diabetes. Spent much time going to Dr's and not one single one diagnosed this until earlier this year and it has all been downhill since. He lost all ability to walk, is different mentally every single day, it is hard, it has financially drained us and I do the best I can with this. I take offense to the sticking him in nursing home is cop out post. No, it is not a cop out.. I cannot lift him nor move him,nor handle the outbursts he has every so often where he is violent. I had to "stick" him in nursing home and already feel extreme guilt over it every single day and am super sensitive to any comments about this. I know everyone is totally entitled to their comments and opinions but wanted to point out please, please, do not judge anyone who has loved one in nursing home. I am going through my own h*ll over this decision even though he is doing quite well there, no more falls, no more not knowing what to do with outbursts, etc. He is treated very well, as am I at the facility. I go every day almost and have dinner with him and friends I have made there. I come home to empty home and the guilt starts all over.

Great article and very informative, thanks much, as my wife has LBD also and it is very hard to deal with the emotions.

Kevin: I think I'd answer "about as good as expected" and to the second "I prefer to have her at home with me for as long as possible."

Excellent Article
I have a question please help.
Friends continually ask me How is Wendy expecting me to say Wendy is better
or improving The correct answer as Wendy has Fronto Lobel Dementure every day Wendy is a little worse no day I wake up and Wendy is a little better Wendy unfortunately is falling away rapidly. I dont know how to answer peoples question at times I just wish they didnt ask. How do I treat these questions?
The other question I am asked is why dodnt you put Wendy in a nursing home ?
At the moment Wendy is peacefull at home and although she cant talk or do any homely things Wendy smiles when anyone speaks to her.With carers coming in to our home I am able to look after her at home. I feel the idea people have of Stick Her in a nursing home is a cop out and totally unfair.
Thanks for your answers Kevin.

Thank you for this article. It doesn't solve anything, but it helps to know there are others out there with the same problem. My husband was diagnosed last June after two years of testing by his neurologist. Prior to that, our internist ignored my remarks that something was wrong because he was sleeping 12 hours a day. They recently took away his driving priviledges and he still thinks he will convince the neurologist to get them reinstated. Since I don't drive either, this is a big hardship on both of us. But it is better than getting into an accident someday.

thanks for sharing. my dad was diagnosed with LBD this year. it explains what we are dealing with a bit more.

My dad died with LBD/Parkinson's at 70. A most horrible disease; the sleep deprivation and hallucinatory symptoms are far worse than the movement issues. This disease robbed my dad of much of his individuality, his intelligence, everything and it was awful because he would have moments where there was more clarity and know something awful was happening to his brain and body and that there was nothing any of us could do but watch him decline; getting worse and worse until the inevitable. When that last stage happened, it happened so fast. Horrible, horrible disease. Worse than Alzheimers, in my opinion. The article does a very good job describing the differences and identifying its hallmarks. My heart goes out to anyone with this condition.

So Glad the UK dont have all the ads for drugs. However the drug companies had a say in the EU to control the herbs that we take. In the UK the government stats show the very high numbers of people who have died because of prescribed drugs. Doctors research is ignored and drug companies have got control. But I have lived long enough to know that change happens Peace & Love

This was the condition that plagued Robbin Williams. He was taking a number of different drugs...Parkinsons drugs along with antidepressants...all these drug interactions along with the disease, drove him to his death. If you noticed, these facts were never released when the controlled media released the info. They don't want to shed the light of truth that pharmaceutical drugs most likely contributed to his death, especially when there are so many drug commercials supporting the news broadcasts. It is truly sobering to know that our food is deliberately made toxic to give us the diseases that the drug companies provide the "remedy" which cures nothing. but generates lots of money as long as people continue to believe the lie. EVERY disease has a cause and is curable!

This is a really good summary of LBD. My 87 year old father passed away last week, after years of living with LBD. He was diagnosed in 2009, however, we believe he had many of the classic symptoms including REM sleep disorder, for several years prior to his diagnosis. It was a surprise to us at that time to discover how little was known about Lewy Body Dementia, even among some of the health care workers we met, and as this article points out, certain medications such as Haldol can have serious negative affects upon individuals with LBD. We were fortunate that my dad was able to participate in a research study at a leading academic hospital and we set about learning all we could about this disease. My father also had long-term care insurance and we were able to keep him at home with good home health care and, at the end of his life, with hospice. This disease is emotionally heartbreaking and financially devastating for the families of people with LBD. Please refer to the LBDA website, www.lbda.org to learn more about lewy body dementia and thank you again for this article.

You are very right, pixiejacq. LBD CAN come on suddenly, though usually it is more gradual. My husband had the sudden melt-down kind of onset, and so did one other loved one in my support group. My husband had had a neurological exam in May and was pronounced "normal for a man his age" and in June he was definitely not normal but deep into LBD symptoms.

I'm sure my mom had LBD. Anne-Marie didn't mention that LBD can come on rather suddenly. My mom had an upper respiratory infection and then one night couldn't put her pajama bottoms on correctly and was hallucinating. Prior to this, she did have some trouble walking, but she blamed in on an old ankle injury and was fine otherwise. She was a retired nurse, so we thought she knew what she was talking about. Anyway, on the night "it all began", she was taken to the hospital. In the hospital she had horrible dreams that she relived and was sure happened in real life the whole time in the hospital. She was never the same, but these symptoms waxed and waned. She ended up having to have back surgery that same year and that was a nightmare. She had to go to a rehab center and the dreams were the worst - with her living them day in and day out. BUT, she never lost her ability to recognize everyone. She had a fall and we questioned whether she may have had a small stroke. She never really spoke or could function afterward and passed within days with the help of hospice.

My wife has LBD and this article is very informative, thank you very much for the information, She has /had a lot of the systems that were in the article.

This is very informative. Thanks.

I hate labelling people I dont think it is helpful. Most health problems are caused by stress, anger and bad nutrition. Parkisons can be caused by too much meat and not enought fruit and vegetable. Low Magnsium causes so many health problems.
Love & Peace

excellent
I have a friend who has LBD and this has been most helpful and educational.
it is a horrible disease..one that is robbing this brilliant man of his mental and physical being.

My husband had LBD. It was truly a nightmare for both of us. Until he was properly diagnosed, it was far worse because the meds he was being given made his symptoms even more pronounced. He died over a year ago, and I am at peace with it. However, I feel great empathy for those who are dealing with it...both the patient and the caregivers. God bless you all.

Thank you for this good summary.

Thanks Anne-Marie, that was very informative. I think there's lots of room for error when diagnosing dementia. I have been told my 78 yr old mother has mixed dementia. When i pushed for a more definite diagnosis, and after MRI scanning, it was reported she has small vessel disease and Alzheimers. Why would these two serious conditions just happen to appear simultaneously? Im not really convinced her diagnosis and did think about lewy body , but after your explanation i think i can rule that out. Her problems are predominantly memory loss and confusion doing familiar activities. She's been stable for three years. I wish the diagnosis, treatment and knowledge would move forward.