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Let’s Talk Lewy Body

Lewy body dementia brings a whole different set of issues as compared to Alzheimer’s. What sort of problems or symptoms do your relatives with Lewy body experience?

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submitted by Siem on Monday, 05/20/2013 - 12:24pm

The medical profession tends to lump all dementia s together as the same. We have experienced it again and again, that upon registration in hospital, emergency rooms and doctors clinics, we tell them my wife has LBD and it gets written down as "dementia". We have suffered through some very trying experiences because of this. One example is the loss of motor control due the use of medication during a scope procedure, the doctor just sloughed it off , ordered gravol and send her home. The medical profession needs to be educated on the difference and the need for different treatment. This is a very common situation, a Geriatric Specialist who lectures doctors on dementia says she opens Her remarks the same way, every time, "You, the medical Profession, treat dementia the same way. See no evil, Hear no evil and Speak no Evil. There is no glory in treating dementia, so you ignore it. Doctors, please wake up, this is going to be the biggest problem you will face in the future.

submitted by JeanneG on Monday, 02/28/2011 - 6:20pm

When a loved one is diagnosed with any form of dementia, the entire family suffers. I am so sorry for your pain.I am sorry that your experience leads you to conclude that doctors don't care about people over 50. I assure you that there are many caring doctors out there. My husband's Primary Care Physician at the time of diagnosis seemed clueless about dementia, and we switched to a geriatrician who is absolutely wonderful and caring. These are specialists who deliberately chose to work with the elderly and their training prepares them for a somewhat different approach. This might be a good time to find a geriatrician for your mother, if you are not comfortable with her present PCP.A neurologist is an appropriate specialist for this disease. Again, if you are not satisfied you can look for a different one. Depending on what your area of concern is, you might want to give this one some time first. My husband's behavioral neurologist is also a researcher and past experience has lead me to expect researchers to be better with data than with people, but he is fabulous. He went into the specialty after seeing his grandfathers decline with dementia and vowed to make a difference. So there are definitely caring doctors out there.If you choose to consult a psychiatrist too, find a geriatric physchiatrist.There is no cure for LBD. Tons of research is being done, but nothing is close on the horizon. There are definitely treatments that can help a lot. It is a matter of treating one symptom at a time. It is a slow, careful process. My husband takes a total of 5 medications that help with his dementia. It took about a year to come up with the right combination and dosages. There are no shortcuts. So our neurologist asked which symptom was bothering him most, and started with that. In your mom's case it sounds like that would be the delusions.LBD is a progressive condition and it gets worse over time, but the course it takes and how long it takes is very different from one person to the next. My husband had hallucinations, delusions, paranoia, belligerence, poor memory, trouble walking, and extreme sleep problems. As each symptom was addressed with medications he got better and better. He started out with later stage symptoms but for the last 7 years he has been in early stage and is quite functional. He is still in our home; he could not live on his own, however. Some other people in my caregivers support group had a much quicker progression, and a few were like my husband, improving then being stable, but for not quite as long. I can't tell you what to expect, but don't give up hope until you've gone through attempts at treating each symptom.At some point your mom will not be able to live on her own. Maybe she is there now. Is it possible for her to live with one of you, at least until the picture becomes clearer? Whether she needs it immediately or not, this might be a good time for your family to explore what long term care options are available to her.Here is a website devoted to Lewy Body, and a page desribing a very useful article about the disease. Near the bottom of the page is a link to the entire article. In the middle of the article is a chart with various drugs used to treat symptoms. You may find it very useful in understanding what is being prescribed for you mother, and in discussions with her prescribing physician. http://www.lbda.org/feature/1347/diagnostic-review-and-medicine-management-of-dementia-with-lewy-bodies.htmMy heart goes out to you. As all this is going on, remember to take care of yourself, too. You are a worthy person deserving of care. Don't overlook that as you take on other challenging duties!Jeanne

submitted by blkeen1 on Sunday, 09/09/2012 - 6:23pm

I am new to this site and so thankful for your post.  It wasn't to me, but I can relate.  My mother has been getting slowly worse since Feb. 2012.  The dreams, delusions or whatever you want to call them are getting worse.  She has tried two different meds.  The first one she could not tolerate at all.  This last one I thought was working (she has been on it for 15 days) but not I'm not so sure.  She has had a really bad night and day.  She knows (after we talk it thru for a long while) that this is a dream, yet she goes back to telling me what the people did and why were they here.  It's like fighting a loosing battle.  She lives with my husband and me as she cannot take care of herself.  I feel as I have no life because she cannot be left alone.  I do have a few girlfriends from church that have offered to stay with her if I need to go out.  However, mother has a dog (a very good companion for her) and I also have one.  Both are small dogs but cause a problem when trying to get someone to stay with mother.  Not all people are dog people.  Some days I just want to stay in bed and never get up.  But I do!  I just don't know how long I can do this.  I feel so bad to be thinking this way.  Am I an awful person.  I feel very alone.  If it were not for my husband I don't know what would happen.   Thanks for listening. Bonnie

submitted by PMHodel on Sunday, 02/27/2011 - 1:11am

HiI am so sorry for what you are experiencing.  When I read your letter it brought back terrible memories of about 2 1/2 years ago when my LO was going through some of the same sort of things.  My life was so strange and scary then.  Now he is on Seroquel XR,  but is also on Aricept and Namenda.  In order to get him on the medications we had to start "low and go slow".  Getting on Aricept wasn't too much of a problem.  He started on half a pill for a month and then whole pill.  It didn't seem like he had too many side effects.  Getting him adjusted to Namenda was a different story but each time I thought he was having side effects, like agression, I would back him down to the dose that was working and after a few days try the higher dose.  Eventually he was able to tolerate the normal dose.  It took several months to get him adjusted.  We have been able to have some what of a normal life for the last two years.  We were lucky to find a good neurologist.  The first neurologist specialized in seizures but was able to refer us to on that specialized in adult dementia.  I give my LO the Aricept in the morning and the Seroquel at bedtime.  This has been working well for him.  He sleeps well with the Seroquel at night.  Before that our nights were all nighmares.  Every night about 2AM he would be hallucinating.  I called it the bewitching hour.  There are still days of confusion but I hope to never go back to those first days.  Your mother actions sound so much of the same I was going thourgh.  I know eventually the disease will take over again but until then I want to cherish every good day we have together. Mary

submitted by Vivian on Saturday, 02/26/2011 - 9:09pm

Hi! I am sorry for what you are going through.  Is she having side effects of her meds?  Maybe she might need a change of meds.  As for the neurologist, find another one.  We are on our 3rd neurologist since my husband started having problems; 1st said nothing there; 2nd treated him as PD, was not improving and family physician referred us to the Cleveland Clinic.  There we have gotten better results, dropped one med that was not helping (requip), added Exelon patch.  My husband is 65 and yes, his doctor is concerned for him.

submitted by dfree on Saturday, 02/26/2011 - 12:02am

Hi, this is the first time I have been on here. I need help!! My 87 year old mom who has been healthy, strong, and active all her life, has been told she has LBD, with early Parkenson's. It started about a year and 1/2 ago. She started saying weird stuff about my daughter hurting her baby, after many nights of watching Nancy Grace. My daughter use to be her favorite grandbaby when she was little, she even helped me raise her. Then she started saying other strange stuff about the neighboors. We just told her, oh mom that's not true, and didn't think much of it. Anyway, she now for the last 4 months is hearing voices. She hears her neighboor knock on her door and tell her that she is going to kill her with a gun or knife. She got so scared after awhile, so she moved. The same thing started, she says the lady found out where she lives now, and she gets in the building and trys to open her door, and the list goes on and on, it's like a soap opera. She is so scared, she stays with me and my other 2 sisters once in awhile. She has called the police several times. The Dr. just put her on Seroquel XR. We are all falling apart. We don't know what to do for her. She gets mad at us if we tell her it is not real. I worship my mom and always have, and this just was not suppose to happen to her. We feel her slipping away and it's killing us. I am the baby of the family and she has ALWAYS been there for me and taken care of me if I was sick or anything. Has anyone ever heard of this? If so, please tell me if there is a different kind of Dr. we can take her to. She went to a Neurologist, but it seems like once you hit 50, no Dr REALLY cares. I want to save her. She is scared to death every night, she hides in her closet, and says they are beating her door down. We don't want to put her in a home. She can dress herself, bath herself and even do her own check book. Can someone please help. I love my mom to death, and I don't know how to be strong for her, because it's killing me to see her this way!  Thanks

submitted by Carol B on Saturday, 02/26/2011 - 6:56pm

Sorry for your terrible situation. I think a psychiatrist might be more sympathatic and better able to manage your mom's symptoms. For whatever reason, it sounds like this neurologist really isn't helping at all. We had had luck with a few different psychaitrists over the years -- look for a "geriatric" psychiatrist for starters. Your or your mom's primary care doctor can probably give you a recommendation. I hope your mom's fears and hallicinations subside and that you and your sisters are able to rest easy soon...

submitted by debkwells on Wednesday, 12/15/2010 - 5:15pm

My hubby was diagnosed over eight years ago, but I do recall that his hallucinations stopped as soon as he began taking aricept. Maybe that would also help with the delusions. After this many years, both hallucinations and delusions have been a part of the picture recently. There is a new higher dose aricept which I hope to start today to tomorrow for him. Hoping for the same improvement as when he first took it.

submitted by JeanneG on Wednesday, 12/15/2010 - 1:12am

You are certainly right, AnaMarie, LBD (and all forms of dementia) is hell on those who have it and on those who care for them. I am so sorry that you are going through this experience with your mother, and so glad that she has you. She is very unfortunate in her disease, and very fortunate in her daughter!It is interesting to hear all the different attitudes about drugs in these forums and in the support group I belong to. I'm very grateful that my husband's doctors have been very good about prescribing everything in the book that they think has any chance of helping. He sees a wonderful geriatrician for day-to-day concerns, a prominent sleep disorders specialist and a behavioral neurologist at the Mayo Clinic who is involved in leading edge research. I know that LDB is not curable. The best we can do right now is minimize symptoms. My attitude is, if there is anything that might improve my husband's quality of life even a little, bring it on! The neurologist explained that coming up with the right mix of drugs can be a very lengthy process and he asked which symptom we wanted to address first. I said sleep issues because I knew I could not keep my husband at home unless that improved. It took about a year to address each symptom, trying only one drug at a time, very gradually adjusting the dose. After that year the combination has remained fairly stable and so has my husband's condition -- for more than six years. Not everyone responds as well to drugs as my husband has. I'm very grateful for his response and for the excellent doctors who knew what to try and had the patience to follow up through the lengthy process.Hang in there, AnaMarie! I hope it gives you comfort to know that you are doing the best you can to care for this very special and deserving person.  

submitted by DonnaG on Monday, 12/13/2010 - 5:49pm

Oh AnnaMarie, I'm so sorry. What a frustrating experience to see your Mom change so drastically. I so, so want to avoid any hospitalization of my mother, as the 2 she has had in 2010 caused extreme lessening of functioning in daily life. But I do understand that that call is my Dad's, as primary caregiver.I have read of various meds helping with the sleep problems. Some folks have had success with Seroquel; some curse Seroquel as the beginning of horrid changes for their loved ones. What a hard thing. Each of our loved ones has such individual needs. We are going to a neurologist in Jan. to have Mom seen and perhaps prescribed something to lessen her times of agitation, but man, I am scared of starting down that path.Is your doc open to trying some things to help with sleep, or do you feel the sleep thing is livable as it is now? Dad and I usually get 4-hour windows of sleep, or at least one four-hour window perhaps followed by 2-hour windows. It feels livable, but sometimes I wonder.I'm glad you felt safe here venting. Vent away! Take care. Bless you for caring so much. 

submitted by admin_dmc on Friday, 09/30/2016 - 11:24am

I completely understand

submitted by PMHodel on Thursday, 12/09/2010 - 4:33pm

My husband has LBD and at first had a lot of hallucinations and delusions.  He is on Namenda, Aricept, Seroquel XR 50mg.  He was diagnosed almost two years ago now.  At this time he is functioning well (not normal) sleeping well, only mild delusions and no hallucinations (that I know of)  Our life has settled in to a routine and we enjoy each others company.  I believe the Namena helped the delusions.  It was hard to get him on it.  They started him slowly on the Namenda.  At first it went well but when I tried to put him on the full dose, it seems he became a big agitated, so I backed him up to the dose that was working for him and left him on that dose a little longer.  Eventually, he was able to tolerate the full dose.  I am so thankful we didn't give up on it.  He takes one 10mg dose in the AM at the same time of the Aricept and one 10mg dose at 6PM.  I had to work with that time also because if he took it later than 6PM it seemed like he was a bit restless at bedtime.  He takes the Seroquel XR 50mg at bedtime and no longer has the sleep issures.  When he sleeps, I am able to sleep.  Not everyone is able to tolerate Seroquel, but 50mg is a low dose and the XR means extended release.  So he gets a more even dose in the 24 hours.  He still has some mild agitation and does not like any one but him and I in the house.  Even our kids and grandchildren.  We have learned to control the situation without giving more medications and the kids all understand this.  It is the saddest for me. Especially during the holidays as we have always had a busy bustling house during the holidays and that is what I like, however its not all about me.  Its all about him.  I have found out my attitude directly affects his behavior.  Thanks for letting me vent and I hope something that helps me can help someone else.Mary

submitted by JaniesGirl on Thursday, 12/09/2010 - 4:02pm

Hi all ... hope you're all having a good day!  My name is AnaMarie and I'm caregiver to my mother, Jane.  She is 75 and after 53 years dedication as a surgical/geriatric DON she has been stricken with this horrible disease.  We (her physician and myself) forced retirement at the age of 68 and a few years back she was "diagnosed" with vascular dimentia.  This neuro treated her for a couple of years and I thought I was taking her to the right person.  In July, 09, I noticed mini TIA's.  I took her to the hospital when I noticed a significant droop on the right side.  At that time I asked that my FIL's neuro please do a consult.  Pop's, may he rest in peace, suffered from multiple anurisyms of the brain and this dr was god to my husband's family.In doing the consult, he asked about her original diagnosis.  Wanted to know when the MRI was done ... well there never was one.  He found it odd that a person could be diagnosed vascular dimentia wherein no MRI had been performed.  Needless to say, a battery of test were then completed.  Dr. A (as we call him) found that mom has LBD.  Only god knows how long this disease has been attacking her body.In looking back ... she had the fall issues ... which we attributed to her long history of back and leg problems (she suffered paralysis twice when I was 8 years old due to ruptured disc in the low back).  Then there was the "forgetfullness".  Since July, 09 she has went from 140 to 95 lbs.Medication wise, her doctor has been very good about not prescribing everything in the book!  Up until a few months ago, she was only taking Namenda 2 times a day with the occassional xanax (I would give .25 mg 1 time per week so I could catch up on some much needed sleep for the week).Now she is on Risperadone.  I had to have her admitted in Oct for DVTs in the leg.  Ironic, that morning she had a "coughing" spell which now I know is due to LBD causing issues with swallowing.  She had aspirated.  When the EMT's arrived I told them I called because of a vein I noticed snaking across her leg ... I realize that the deep veins can't be seen via naked eye but I knew something was wrong.  They admitted her for "resp infection"???  Where did that come from?While she was in the hospital, they took an as needed order for xanax, which I might add I specifically stated that I did not want given before 6 pm considering the fact I know her and a .25 mg dosage last here at home for 2 days, they managed to give .50 mg four times a day for 5 days!!!!!!  Talk about a zombie!  The kicker ... within 24 hours of admission her doctor had discontinued the xanax and started her on Risperadone but they continued to give the xanax on top of the new meds.  Now what little bit of cognitive memory she had for performing daily tasks is GONE!!!!!  She went from dressing herself, going to the bathroom on her own, feeding herself, etc. to now wearing diapers and taking an hour to eat something simple like oatmeal.The hallucinations have gotten 150x worse and my mother, who never had a mean bone in her body, is very angry now.  She doesn't know who I am most of the time.  She's not sleeping at night ... I usually get 2 hours at a time then she's back up.  I get her back in bed, she drifts off then back up again.  This is pretty much every night.I personally think I don't have much longer with her.  She has frequent conversations with my g'ma, who's been in heaven for almost 20 years now.  She tells her how pretty it is there so I'm thinking she's prepared and wants to be with her.  I can't say that I'm not selfish and want to keep her with me .... she's my best friend, my back bone .... but at the same time I know she's not "there" and would be mortified to know she was in this state.Well know that I've vented about some issues here ... thank you for listening.  I hope everyone has an awesome day!!!!  We will get thru this and I pray that I have done everything humanly possible to give my mommy the care she needs and deserves.

submitted by JeanneG on Wednesday, 11/24/2010 - 2:19am

We are in our eighth year of living with Lewy. Hubby is still at home, and highly functional, all things considered.Initially he fell down frequently -- often more than once a day. He takes a blood thinner and even slight bumps cause bruises -- he was one massive black-and-blue mark. I sometimes needed help getting him up off the floor. He had a walker but in his case it was utterly useless. When he fell it would go tumbling out from under him. After about 6 months his primary care provider authorized a wheel chair. I expected resistance because hubby resisted using the walker (who could blame him) but it turned out he liked the wheelchair. Finally he could scoot around the house without fear of falling. This was good for his spirits.I began to observe closely the nature of his falls. It did not appear that he lost his balance or that his unsteady gait was to blame. Instead his legs and arms very suddenly refused to work. He couldn't stay upright and he couldn't grasp the walker. I described this to his behavioral neurologist who said it sounded like narcoleptic-type episodes, where his body suddenly fell asleep even though his mind was still awake. He prescribed a drug used for narcolepsy, Provigil.Oh my goodness! This is our miracle drug! Instead of falling several times a day hubby now goes months without falling. The wheelchair is handy for outings that would require a lot of walking (museums, the fair, etc.), but because of stamina issues, not problems falling. He not only is back to walking, but he bowls with a senior league once a week! I have had to appeal insurance decisions to deny coverage for this drug more than once, but have been successful, with the doctor's support.I don't mean to suggest that this is the most common cause of falling among LBD patients, but it is definitely one possible cause, and it is a problem that can be addressed with medication. I'm not sure how widely known it is among doctors who don't specialize in treating LBD, so I think it worthwhile for caregivers to be aware of it. 

submitted by nandel8 on Sunday, 11/21/2010 - 12:40am

Lewy Body brings with it a lot of sleep disturbances for the person with the illness and also the caregiver.  Long before the disease becomes overt, there may be issues of REM Sleep Disturbances...ie, acting out dreams..talking in your sleep.  With Lewy comes nighttime wandering and all the related issues of safety.  The caregiver (me) often experiences burnout ue to lack of sleep.  It's a tough row to hoe!

submitted by Judy Lisak on Wednesday, 11/24/2010 - 1:35am

My husband has been taking 1 mg Clonazepam for over 20 years for REM Sleep Disturbances. It keeps him pretty quiet, although once in awhile he will cry out. But for the most part he sleeps well - and so do I.

submitted by Vivian on Sunday, 11/21/2010 - 1:48am

My husband has a lot of sleep disturbances, he is up a lot to go to the bathroom.  It is hard to distinguish if it is LBD or his prostrate. ( He just had surgery to help shrink his protrate.) When he comes back to bed, he can't cover himself with the blankets, so I have to wake up enough to cover him back up.  Also, he has a hard time getting comfortable in bed.  He is adjusting his pillows all the time.  The weekends I get to sleep in a little; to me sleeping in is sleeping past 6AM!!

submitted by normal on Wednesday, 11/17/2010 - 6:45pm

People with LBD do not only experience memory loss.  They also have symptoms of Parkinson's disease--rigidity in the arms and/or legs, shuffling when walking, chin jutting forward or a slight tremor.  So instead of dealing only with mental faculty, LBD affects the person physically at the same time.  In addition, hallucinations or some type of sleep disorder is present most of the time.  The most important reason for correct diagnosis is this:  People with LBD are extremely sensitive to medications.  Many are given anti-psychotic drugs for hallucinations.  However, certain type of these drugs (such as Haldol, Risperdol) affects them very adversely and makes them worse--sometimes being fatal.

submitted by Carol B on Wednesday, 11/17/2010 - 1:54pm

My husband just started having some delusions. They are still pretty mild and don't last too long but he gets frightened and I am fearful of what's to come. What is the treatment for delusions? Is there a good medication that anyone has tried? 

submitted by JeanneG on Friday, 11/19/2010 - 4:46am

My husband hasn't had hallucinations for several years, and when he did they never seemed to be frightening. I remember one 3 am exchange when he informed me there were bats in the room. Baseball bats? No, flying bats. Where are they? On the floor next to the bed. Do they bother you? No. Would it be OK if we just leave them there until morning? Fortunately he was OK with leaving them there because I wasn't getting much sleep those days and chasing even imaginary bats was more than I cared to take on in the middle of the night! :)I had some success explaining to my husband that he was dreaming -- that his disease allowed dreams to invade his waking moments. But we weren't dealing with anything severe or frightening.I hope that you are seeing a specialist very familiar with this dementia. Do discuss the hallucinations or delusions with the doctor. Especially if they distress your husband, it may be worth considering some medication on a well-monitored trial basis.I understand being fearful of what's to come. (Aren't we all?) But I don't know that it is a certainty that the delusions will get worse. Deal with what you are facing now and try not to use a lot of energy worrying about what might happen next. (Easier advice to give out than to follow, I'm afriad.)

submitted by Carol B on Monday, 11/22/2010 - 3:29pm

Thanks for your comments - everyone.He thinks there are cows in the back yard - I think its from years of us raising cattle? But it's been years since we have done that. Luckily he doesn't seem too distressed if I tell him that Robbie (our son) is outside and will herd them back to the barn. But he does get quite worked up when he first "sees" them. The other sights that really do frighten him more is the delusion that someone is in our living room - but it's just the shadows. I started leaving all the lights on so he doesn't get as upset.This disease sure keeps you on your toes!   

submitted by normal on Wednesday, 11/17/2010 - 6:41pm

I'm glad to hear the delusions are mild and not often.  I hope they stay that way.  Prior to getting medication, always try to divert to a different topic.  If that doesn't work, do whatever you can to alleviate the fear.  For example, if he is seeing scary animals, tell him that you are going to get rid of them right now.  Open the door or shoo them out.  What he is seeing is real to him and if you say there's nothing there, he will become more frustrated.  Many times, telling a person with LBD that you will take care of the situation (in a caring, calm voice), they will feel better.  They need to know that someone is in control of the situation.  If delusions or hallucinations get very bad, the drug that seems to work for most (though not all) people with LBD is Seroquel.  It's a very strong drug and should be used at a very low dose at first and with caution.

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