Dementia is a disease that affects millions of Americans. There are several types of dementia that we know of, including Alzheimer’s Disease and Lewy Body Dementia.
While forms of dementia vary in symptoms and severity, the Global Deterioration Scale aids in identifying the typical progression.
If you or someone you know may be in the early stages of dementia, here’s what you need to know about its seven stages:
Stage One: No Cognitive Decline
Stage one is entirely undetectable to the patient, loved ones, and physicians. At this stage, individuals do not experience or present with any cognitive decline.
Stage Two: Very Mild Cognitive Decline
Stage two may bring subtle changes in the individual, such as mild forgetfulness. These instances may include forgetting names or having trouble locating familiar objects. In the second stage of dementia, it’s difficult or impossible to notice these minor symptoms, and a diagnosis is not yet able to be reached.
Stage Three: Mild Cognitive Decline
Stage three involves mild cognitive decline. The symptoms may become more noticeable to loved ones of the individual in stage three dementia, and a diagnosis may be near. This stage often includes mild memory loss, out of character forgetfulness, and a slightly decreased ability to concentrate.
Stage Four: Moderate Cognitive Decline
Many people living with dementia are officially diagnosed during stage four, which is when physicians are able to pinpoint cognitive decline with an exam. At this point, the patient will likely present symptoms such as life-disrupting forgetfulness and out-of-character difficulty performing daily responsibilities. It may become more challenging for those with stage four dementia to manage finances or navigate to new locations.
Stage Five: Moderately Severe Cognitive Decline
Stage five is marked by moderately severe cognitive decline. Individuals in this stage often have notable memory loss and begin to struggle with daily activities. Significant details such as address or phone number may be difficult to recall, and those with stage five dementia will likely need assistance with tasks such as meal preparation and bathing.
Stage Six: Severe Cognitive Decline
Individuals in stage six need a high level of support to live comfortably. Memory loss tends to be significant, and many in stage six dementia are only able to recall memories of early life. Incontinence is common in this stage, and many patients also begin to lose their ability to speak. A change in personality may occur during this time period, which lasts an average of 2.5 years.
Stage Seven: Very Severe Cognitive Decline
Stage seven typically lasts for 1.5 to 2.5 years and is characterized by very severe cognitive decline. Patients in stage seven lose their ability to communicate, and are often unable to walk. Individuals in late stage dementia require extensive assistance with life’s activities, and often need round the clock support.
Dementia affects approximately 5 million Americans each year. Lewy Body Dementia (LBD) comprises approximately 1.4 million cases within this figure, and is often misdiagnosed. If you’d like to learn more about Lewy Body Dementia or seek support, please visit us online at lewybodyresourcecenter.org or reach out to our helpline at 833-LBDLINE.
I am so happy to see the information that has developed since I began with the LBDA in 2003 with a group of caregivers on a Yahoo site. From our first conference in Sacramento to our first board meeting in LaCross, Wisconson, it has been like watching a child grow and mature. Thank you so much for your dedication to the cause and the information which is so badly needed.
Thanks very much, Betty. We have been involved with LBD for a long time but not as long as you have. We are grateful for all you have done to get us where we are now. We are trying everyday to bring much awareness and support to those in need.
With much appreciation, Norma
I was just diagnosed with Lewy body dementia. I’m only 63 and I’m fine right now. But my doctor said that I only have about 4 years to live. Could he be wrong?
Absolutely! My dad was diagnosed a little over 2 years ago but was showing symptoms at for at least 3 years prior. Find yourself a top notch LBD doctor. My dad’s doctor is the head of the memory & cognitive diseases research center in our NJ hospital. His doctors in Long Island, “specialists”, waved us off saying it was Alzheimers. I knew they were wrong.
Also, a doctor that just tells you that you have 4 years to live is a sh**ty doctor, I’m sorry. Don, you could have 8 years more to live (I don’t know if you have any other medical conditions that are also being factored in). Get yourself a good doctor who specializes in these types of diseases & is involved on the research end too! Don’t take that 4 years life span lying down! Good Luck!
My mother was diagnosed in 2016 at age 68. She has now been in a dementia aged care facility for 12 months. She is mid to late stage 6. 4 years seems on the low side for what I’v read. Our doctor told us four years back in 2016.
Please know we are here at our Helpline 7 days a week from 8am to 8pm EST if you need any assistance at 833-LBDLINE.
How is your mother now,?
Been another 12 months since this post.
My husband was diagnosed in 2015.
He is still able to walk, talk, enjoy food. There are better and worse days but we are still managing. 4 years is too stingy!!!
September of 2018 my mother in law had a urinary tract infection and that was went we first noticed May 2019 diagnosed Nov. 2020 now unable to walk bedridden she is in stage 7 for her it has been extremely fast and aggressive she is 76.
Funda, my husband has been diagnosed less than a year. His dementia is already so bad I have to do almost everything for him. To what extent are you having to care for your husband. I’m shocked at how fast this has happened. He can feed himself and eats well but that’s about all that’s not changed.
Hi Jl,
Is your husband on many medications?
Yes. My father-in-law was diagnosed with LBD about 10 years ago and is now in stage 4 but is showing some signs from stages 5 & 6 out of the 7 stages. He is able to live by himself with us checking on him regularly. He is not able to drive, but he can heat up prepared meals, wash his own clothes, and his house has never been cleaner. He is obsessed with vacuuming! It helps that we live close by and he lives in a neighborhood with great neighbors who are willing to help us out. Staying on a routine, taking his medications, and getting sunshine is key. He will be 75 his next birthday.
Best wishes for you. LBD is very scary. Enjoy something from life every day that you can, and take nothing for granted. Know that someone is praying for you.
Hi Tanya,
Thank you for writing. It’s very unusual for someone with LBD at these later stages to live alone. I am glad you and your neighbors are keeping a very close eye on him. Please know that things can change very quickly and, sometimes, they’re not always easy to see. That being said, I’m glad he is able to do so well on his own.
Same here, my dad lives in his home, I moved in 2017 but still must work so he’s alone most times. I believe hitting stage 7 soon or there, hard to say.
House has notes on every wall, notes on toilet for him remind of things. Family likes walking around reading house.
There’s this book my doctor gave me called 36 hour day, please read it, wonderful read. It’s entertaining because I have did most everything in it, but might be few things haven’t.
Today he got a DUI and can’t drive anymore, but for some reason they let him keep key…. ( So he says)
Another thing helps to keep him in his home, is hidden cameras. Main living areas, I watch him all day, if problem occurs I know before he picks up phone.
He will not see them. Total clueless. Good luck and God bless you.
My mother was diagnosed in 2013 and we are still blessed to have mom with us. No doctor knows. There are too many variables. We trust the Lord, and He has been faithful.
You are NOT alone in this. Our family will uphold you in our prayers.
Yes this could be very wrong . Each person is different . My dad has LBD and is in his 15th year and still trucking . Keep your head up and push yourself to stay strong
Hi, Norma. My dad was diagnosed with LBD last November, just days before his 70th birthday. He had West Nile Virus in 2003, was diagnosed with Mantle Cell Lymphoma in 2013 and had strong chemo and a stem cell transplant, then prostate cancer in February of 2019 with radiation. I’m shocked at how quickly he’s gone from being forgetful a year ago to now probably needing to be in a skilled nursing facility. I’m very curious about whether there is a link between the West Nile Virus and LBD, as he had a fairly severe case requiring hospitalization.
Hi Michelle,
Though I answered you privately before today, I am posting the response here for others to see.
I’m so sorry to hear all that your dad has gone through. I have not personally heard anything about West Nile Virus and LBD. I did find this article online:
https://journals.lww.com/alzheimerjournal/Abstract/9000/West_Nile_Virus_Neuroinvasive_Disease_Accelerating.99280.aspx
A neurologist may be able to answer your question. You always want to be sure that he is not on any medications that can contribute to making him worse. On our website, http://www.lewybodyresourcecenter.org, you will find a Medical Alert Card on the home page if you scroll down on the left. This will list many medications that can affect him adversely.
Please know you can call our Helpline with other questions any time at 516-218-2026 from 8am to 8pm seven days a week EST.
Thank you,
Norma
Absolutely, my dad’s neurologist said west Nile, Zika, etc can cause serious problems later on. Also make sure he is ruled out for Normal Pressure Hydrocephalus (NPH). It is associated with West Nile & other encephalitis type diseases & can develop as a consequence. My father was diagnosed with NPH 4 years after symptoms started, diagnosed by neurosurgery on a fluke, had a VP shunt placed & it saved his life. One year seems very, very, very fast & it could be NPH, which is the only known reversible cause of dementia.
My family is new to LBD and Parkinson’s. We are trying to learn everything we can. He checks the boxes for LBD and Parkinson’s. I can think back about 12 years and see the early signs. He’s 87 and looks like between stage 6 and 7. He has really declined in the past six months. He can feed himself but that’s all. He can’t walk at all and transferring is getting more and more difficult. He’ll eat usually one meal a day and prefers eggs, bacon and toast. Yes, odd since he gets choked on even water.
He has sundowners which is another very difficult thing to deal with.
I am really hoping to keep him home until the end and can’t imagine moving him to a nursing home. Not that there is anything wrong with being in one I just know he would give up on living and call me in the middle of the night to come and get him. That’s if he can remember my number and how to dial it.
What are the best strategies for dealing with this?
He has other issues too, April was a year on his stroke, he has an abdominal aneurysm, high and low BP, and severe diabetic.
Hi Brenda,
Please call our Helpline at 516-218-2026 and we’ll be happy to answer your questions. We are available 7 days a week from 8am to 8pm Eastern time.
Hi Michelle,
I’ve recently had a friend die from LBD but had never heard of this type of dementia before then. I don’t know for definite but I think the radiation treatment may have had something to do with him going downhill so quickly, as after my mum’s radiation treatment for bone cancer in her neck she went much the same way and so quickly I was shocked. I hope this helps and he stays with you for a long time yet.
There does seem to be a link in men getting all 3 of – prostate cancer, then Parkinson’s, then Lewy body dementia just like Billy Connolly, my Dad has all 3 in same order, and we found out it happens a lot.
Ceecee, please know that many people with LBD start off with cognition issues and no Parkinson’s symptoms. And a majority of people don’t have prostate cancer. There are so many variables!
How long does stage 5 usually last?
Dear Cheryl,
Thank you for writing. There is no particular time frame for any of the seven stages as each individual with Lewy Body Dementia is different. Stages and symptoms vary dramatically from person to person. Much can depend on the individual’s other medical issues which are distinct from others. My suggestion is to be proactive but to also take one day at a time and not to project too much into the future. Please know that we have a helpline 7 days a week from 8am to 8pm at 516-218-2026 which you can call with any questions, concerns or just to run things by us. Please don’t hesitate to do so as that’s what we are here for.
Thank you, Norma
Thank You. My brother is turning 91 in two months. He has been diagnosed with this disease. I have noticed his hallucinations when we talk on the phone.
Depends on a laundry list of issues there is no “how ling” one size fits all. My Mother in Law is a LBD patient and solidly in Stage 6 now in a 24 hour care facility but still mobile on most days, but she also sleeps alot. In her case she blew right through Stage 4 and Stage 5. The change in personality has been fascinating and terrifying. She was a lifelong church goer, piano player, choir, 4H mom, the most sweet and active lovable person I ever met. Now she says the most hurtful things specific to each of her daughters. Things that really dig at insecurities except my wife who she loves to attack. My wife has been the victim of 95% of the violence.
The change in personality to the violent woman she is now is almost animalistic. She plays possum like she is asleep or disinterested then stalks you, has to let down your guard and then attacks. She has attacked people in the home and severely injured them and quickly forgets what happened and cries. She’s been in 24 hour care for 15 months now and the warm loving woman that I called mom is long gone. Replaced by a suit of flesh that looks like mom but isn’t
My husband was diagnosed with Parkinson’s with mild cognitive impairment in August 2018. He had his first round of documented TIA’s in 2015. Then another round in July 2018 resulting in the Parkinson’s with mild cognitive impairment in August 2018. July & August 2020 he had what they labeled as 3 brain bleeds/strokes. His mobility and cognitive functioning levels have been greatly impaired. He can no longer walk unassisted, sometimes speech is unintelligible, cannot dress or bath himself, difficulty feeding himself and needs 24/7 care. Finally this past summer they said it was Parkinson’s with LBD and vascular dementia. We’re considering a personal care home as he’s in Hospice Care and we have a caregiver 8 hours per day but I am the sole caregiver the rest of the time. I am 75 with congestive heart failure. Is there anything else I can do??
Dear Paulette,
It sounds like you have been doing all you could have done up to this point. Since your own health is a big concern–and if more than 8 hours of care is not doable at home–it may be best to consider a personal care home or a hospice care home. I’m assuming hospice may be able to help you with this? A geriatric care manager or a social worker could help you as well. Please let me know if you need any help with these resources. And please be sure to take care of yourself in the same way you are giving care to your husband.
Hi Irma and thank you for all you and your support groups do for us caretakers. My husband is 64 and was diagnosed at 62 with possible LBD and I’m having a hard time finding handicap accessible apts or housing to downsize to save money by selling our Long Island NY home. Our family is here and he wants to stay near family. Yes, it’s expensive but I can’t even find any realtors online with accessible living arrangements. Do you have any suggestions? Thank you in advance.
Hi Patty,
I will email you directly so that you can tell me which part of Long Island you prefer and I’ll try to help.
Thank you, Norma
I am a 24 year RN doing research into the differences between Lewy Body disease and Alzheimer’s disease. I understand many people interchange the diagnosis.
I would love to hear your opinion on the topic.
I can be reached at 717-446-1337. I work crazy hrs so please just leave a message and a time that works for you to communicate.
Thank you
Barbara Rothman RN BS MHA
Hi Barbara,
We would be happy to speak to you about this. Why don’t you let us know the best day and time for you and we’ll try to accommodate your schedule the best we can.
Thank you, Norma
Are there any specific testing that needs to be done in order to confirm someone has Lewy Body? Or to rule it out?
Thank you
Hi Sarah,
Thank you for writing with your inquiry. Currently, there are no specific tests for Lewy Body Dementia, unfortunately. However, different types of tests can help rule it out or hone in on the definite possibilities. This link from the Mayo Clinic lists the types of testing that can be done in this regard. I hope this will help.
Thank you, Norma
I would very much like to talk to you about my experience. My darling very young 69 year old sister died of LBD this past February.
Dear Cynthia,
I am very sorry about the passing of your sister. Please let us know how we can help you.
My mom is 74 and was diagnosed with LBD a little over a year ago. She lives with me, and I was wondering if you could tell me what stage she’s in according to her symptoms which are: Struggling to walk(legs buckle and are very weak), trouble speaking, can only remember early years, aggravated, hands are very weak and don’t want to work correctly, can’t taste food very well, and wants to sleep constantly.
Sounds exactly like my Mom last August, same time you posted actually. Unfortunately, my 69-year-old Mom passed away early September 2020. Your mother, it sounds like, was in the later stages of the disease. I can get into it in more depth if you’d like, but I fear your Mom may not be with us. My thoughts are with you.
If you are still doing research, I would be happy to speak with you about the subject. My husband is in the last stage of Levy body dementia. I can be reached at 904-395-3960 most late afternoons after 4:30pm
Thank you, Barbara. We would be happy to speak with you and will give you a call.
+hello Jim, I am Deb. I was diagnosed with LBD the day before the big Covid shut down. I too tried to find some one to communicate with. A “support group.” I am stage 1, and will be 70 in October. Please give a shout out if you are looking for a chat.
My husband is 75 and diagnosed with Parkinson’s 7 yrs ago. Clearly started having cognitive issues 4 yrs ago. As of August 2021 he no longer walks and has had a serious decline in all areas of daily living, verbal expression..incontinence ..he can do nothing by himself. I noticed no mention of Parkinson’s in previous post…yet thought LBD was quite common in Parkin. Just wondered.
Hi Patty,
Thank you for writing. It’s actually the opposite. Parkinson’s symptoms are quite common in Lewy Body Dementia. There are many similarities. Please see our website at http://www.lewybodyresourcecenter.org. On the home page, there is a link describing the differences between Lewy Body, Parkinson’s and Alzheimer’s.
I was diagnosed LBD March 5th on my 72nd birthday and am guessing I am in stage two to three … I’m curious if anyone has any information on LBD & Agent Orange? I served 37 consecutive months in the war in SEA, and dealing with the VA is not easy. I want to try while my mind works enough to prove a connection. Thanks.
Dear Jim,
Please know that we are here to help you. In addition to our website (www.lbdny.org), we have a Helpline available 7 days a week from 8 am to 8 pm at 516-218-2026.
In answer to your question, there hasn’t as yet been enough research done on LBD and many facets. Agent Orange is one of them. However, Parkinson’s Disease with dementia is the same disease as Lewy Body Dementia (though most people do not know this). The Veteran’s Administration has a booklet out about Agent Orange and which diseases are associated with it. Parkinson’s is one of them so you would certainly qualify as LBD consists of both cognition issues and Parkinson’s. I am posting the link here for you: https://www.parkinsons.va.gov/resources/PtEdTri_AO.pdf
Thank you very much for your service. Please don’t hesitate to contact us at any time.
Hi Jim and Norma,
Unfortunately, LBD with Parkinsonism is different from Parkinson’s Disease according to the VA at this time. My husband served in Vietnam in 66-67 and was exposed to Agent Orange and also suffered a TBI. Any information or resources that can help me in my claim for compensation with the VA for his LBD with Parkinsonism due to Agent Orange and TBI would be greatly appreciated.
Hi Mary,
I’m sorry to hear the difficulty you are having with this. First, I want to suggest that it may help if the diagnosis is worded as “Parkinson’s disease with dementia.” If he started out with Parkinson’s disease and then had dementia issues, that is how the disease is usually termed–even though it is the same disease as Lewy Body Dementia. I think the rest of this information may be able to help:
As for Agent Orange, please see this legal brief which looks like it can help you. It’s from 2014: https://www.va.gov/vetapp14/Files4/1429488.txt Within this document you will see “CONCLUSION OF LAW:
Lewy body disease was incurred as a result of active service. 38 U.S.C.A. §§ 1110, 1116, 5107 (West 2002); 38 C.F.R. §§ 3.102, 3.303, 3.307, 3.309 (2013).”
Here is a reference to Vietnam and dementia in general. Since LBD is a combination of both dementia and Parkinson’s, all of this should help. https://www.medpagetoday.com/meetingcoverage/aaic/52698
This one refers to Parkinson’s: https://parkinsonsdisease.net/clinical/link-agent-orange-parkinsons/
Please let me know if you need more information. And if you can keep us posted in case others need the help, that would be great.
Thank you, Norma
Thank you for these links. My husband has been diagnosed with lewy body dementia w/so Parkinson’s. He is 53. And retired from the military. It is believed to be from the chemicals he has been exposed to. Just starting our petition to the VA for a rating on this.
Mary, please see the links that I sent you. One is specifically for Lewy Body Dementia and was approved by the V.A.
My father-in-law was just given this diagnosis last week and has a very similar story with years of military experience. May I get this information, too?
Hi Bryan,
Was your father-in-law in Vietnam and exposed to Agent Orange?
Mary…my husband too was exposed to agent Orange in Vietnam the same time frame as yours. He has been 100 per cent disabled thru VA for 7 years. (Parkinson’s) It takes perserverance…and by all means find out who his assigned social worker is to help you through the process.
My name is Ed Levene and I served in Vietnam from 66-67 and then I served with the 2nd ID up near the DMZ from 68-69. I was exposed to Agent Orange in both theaters and my claim with the Department of Veteran Affairs is like dealing with a bouncing betty and half the time they have no clue what I’m talking about. Now last year I was diagnosed with LBD from the Mayo Clinic in Rochester, Minnesota in which they did about 15 test on me and they came up with a conclusion that I have Parkinson disease with a correlation to LBD. I will be 75 in May and my cognitive issues are mild to worse on a given day or vise or versa. I see a Nurse Practitioner once a year, but she cannot give a conclusion linking AO to LBD. So I’m doing the research my self. I have this other ailment called Monoclonal Gammopathy of Undetermined Specifics which is a precursor to Multiple Myeloma and that is linked to exposure to Agent Orange.
Hi Jim,
First, thank you for your service. I’m so sorry to hear the difficulty you are having now. I believe I wrote to your wife Mary yesterday and I will post the information I sent to her here for you.
I want to suggest that it may help if the diagnosis is worded as “Parkinson’s disease with dementia.” If he started out with Parkinson’s disease and then had dementia issues, that is how the disease is usually termed–even though it is the same disease as Lewy Body Dementia. I think the rest of this information may be able to help:
As for Agent Orange, please see this legal brief which looks like it can help you. It’s from 2014: https://www.va.gov/vetapp14/Files4/1429488.txt Within this document you will see “CONCLUSION OF LAW:
Lewy body disease was incurred as a result of active service. 38 U.S.C.A. §§ 1110, 1116, 5107 (West 2002); 38 C.F.R. §§ 3.102, 3.303, 3.307, 3.309 (2013).”
Here is a reference to Vietnam and dementia in general. Since LBD is a combination of both dementia and Parkinson’s, all of this should help. https://www.medpagetoday.com/meetingcoverage/aaic/52698
This one refers to Parkinson’s: https://parkinsonsdisease.net/clinical/link-agent-orange-parkinsons/
Please let me know if you need more information. And if you can keep us posted in case others need the help, that would be great.
Thank you, Norma
Jim,
My husband was diagnosed with LBD w/Parkinson’s at age 65. He was in SEA and exposed to Agent Orange. The VA doesn’t recognize the obvious connection. The neurologist at Emory Brain Health Center made the diagnosis and very clearly connected it to Agent Orange exposure. The Parkinson’s is recognized by the VA and there’s a specific VA form which should be filled out on both sides to support the connection between diagnosis and exposure. Get help from a state VA rep to complete a fully developed claim before you submit it. It increases your chances of approval when you make the service connections for the reviewers.
Thank you for your help with this, Rosemary.
I feel blessed that I read this today. My 37 year USMC, repeated Agent Orange exposure in Vietnam 67-68, has been diagnosed mid stage LBD in the last year. We have talked to VA rep and begun a referral but I have dropped the ball due to dealing with the dementia issues and recovering from Hurricane Sally. You have given me hope and focus. We were referred to the center at Emory but they were not doing in person visits and exams due to COVID. I also heard if the application is not completed in a stellar fashion, it will be rejected. Please let me know how I could possibly contact you for your insight before completing the application. I would be so appreciative.
We realized how important this is. I hope you will hear back on here from Rosemary.
I am seemingly in the non military group . My husband of 45 years began struggling with his mental health around 2000. I prayed and tried every day to help him hold it together to retirement and the boys getting grown.I took him to every specialist I could think of and we were told it was bi polar disease.
The years have gone by and my husband has continued to digress.
Last May,2020 I checked him into a nursing home after which he was diagnosed with Parkinson’s and Lewy Bodies dementia.
We are 8 months in the nursing home and he appears to be in the end stages . He receives excellent care but is very difficult, angry and delusional. I am still praying . The boys have all spent time with him ( before he got to this stage) and our family is closely involved. We are just tired but it’s nothing compared to his struggles. I so hope that we may see him pass through this stage quickly( although it’s too late for that) no one knows how long this goes on and we’re generally to prepare for the long haul , maybe a few more years . I can tell you I have learned a lot about love ‘the kind of till death do we part ‘ love.
He doesn’t mean it but if there is a lucid moment ( rarely and I say lucid in the most broad terms) he directs his anger and hatred at those closest to him . It’s like he is simply reacting to this terrible confusing and miserable place he is passing through. I am a believer in Jesus, I do believe the things I have read in the Bible. I know he will be healed in Heaven . Past that , I am just tired. I don’t know how to advise concerning this disease . I do know if I hadn’t turned to God for help I would have turned selfishly and run , abandoning him . I just thank God I didn’t do it . I was tempted, God forgive me.
Hi Vickie,
I’m sorry to hear all you are going through at this stage. I will write to you personally to see if you would like to speak by phone via our Helpline at 833-LBD-LINE.
While reading the many comments I just wonder what stage my husband is in and how long it can last for one month he never slept day or night he had lost 30 lbs or more barely eating and not able to do anything for himself! He is now on Ativan which has finally calmed him down
Hi Zee,
Figuring out what stage someone is in can be very difficult because everyone with LBD progresses differently. It depends on their current condition, what their other physical ailments are, and many other factors. It’s best to try to take one day at a time. I’m glad to hear he is feeling better at this point.
Dear Lee,
Please know that it’s very difficult to name a particular stage for each person as everyone with LBD is different. For instance, many people with LBD may not be able to tolerate Ativan well at all. I’m glad to hear it has helped him. Many times other medications or environmental issues can affect the sleep issues. I hope he continues to feel more peaceful.
My grandfather died at an older age from motor neuron disease. Now my mother has Lewy body dementia. I am wondering if there is a link and is it hereditary.?
Generally speaking, LBD is said not to be inherited. I’m sorry we don’t know anything about motor neuron disease and it’s correlation to LBD. I will email you directly so see if you would like suggestions of names of neurologists who may be better able to help you with this.
I would like to add Hallucinations and Psychotic episodes……Sleep disturbances and sometimes aggression….My husband suffered from these severely toward the final stages……He also had Parkinsonian symptoms – shaking hands and legs….
Thank you, Marcia.
Marcia , that sounds like my Dad, he had this terrible disease too…
We kept him home as long as we could.
But then he got too violent w my Mom. Had to go to nursing home.
My Dads was pretty severe lbd…. he suffered greatly and so did my mom as his caregiver many years before nursing home ,I took him to all his Drs, tests, took care of
meds etc…
He passed 8/18/18…
May he rest in peace…
Like Robin Williams my Dad was a funny guy and musically talented… He entertained people in the nursing home…
Im sorry about your loved one…
I try to remember the good times…
God bless you all and I hope we find a cure soon and people get diagnosed asap that have this ….
Hi Marcia,
My husband is in stage 5 of LBD. He has the Parkinson’s symptoms as well as night terrors, loss of language, hallucinations, loss of appetite and trouble swallowing. His LBD has been directly related to the significant amount of radiation he had when he had cancer 4 years ago.
It’s at the point now he can not be left alone. I’m glad I found this sight because I have no one to talk to about this disease.
This sounds just like the situation with my husband . I am sorry for your loss and your husbands difficult struggle.
My Dad was formally diagnosed this past July with Lewy Body Dementia, but before then was declining. I live 2.5 hours away from him, and just saw him right before Christmas. There is quite a difference between talking to him on the phone, and seeing him in person. He has usually been better on the phone, I am lucky because his wife sets him up on speaker phone, so that I can hear his voice. My Dad’s wife said that he his agitation has increased in the past two weeks to where his med has to be doubled. He is also having difficulty with food. He told me that they have a foot of snow in Vermont, not sure if this is true, and that the Christmas lights are still up in the courtyard, so when the lights reflected off the snow, it looked like they were floating, I thought that whether or not this was real, that it was a beautiful thought. I think I need to see him again soon, as I do not know what stage of dementia he is in, but he is very interested in my drawing, and wants me to draw him pictures of horses, he helped take care of my horses over 40 years ago, when I lived at home. I am hoping that he can still stay at home for the remainder of his life. He is 88, and has 2 caretakers, one is a nurse who has worked a lot with dementia patients.
Thank you for your email, Gail. We would be happy to talk to you if you would find it helpful. Please call our helpline at 516-218-2026 any time from 8am to 8pm EST.
Thank you for sharing your father’s situation. We believe my father also has LBD. I also find it easier to speak with my father on the phone and he’s very conversational and usually let’s me lead. He is probably stage 4… going onto 5. I can relate to the old memories coming back to them and them getting great enjoyment from it. My father loved his International Harvester tractor that has been many years gone. When we talk about it, he remembers everything…and it’s amazing. Got him a model tractor of it for Christmas and he loved it… My dad also sees things…fortunately his wife tells him they are not there most of the time. A few weeks ago he saw all kinds of birds in the yard doing crazy things and was so amused. It was a hallucination. Many times his hallucinations involve scary, gloomy individuals standing in the room. Happens more at night and in low light. My grandmother, his mom, had Parkinson’s with dementia and also saw things..so i do wonder if I have this to look forward to as well. I’m 47 and i find I am having pretty major memory issues from time to time. Yesterday, i got the mail, got back to the garage and decided to go back and get the mail. When there was nothing there, i looked in my arm and i already had the mail.
Hi Indiana Girl,
We have some helpful suggestions for when your father is having hallucinations. Please call our helpline at 516-218-2026. We are available from 8am to 8pm EST seven days per week.
Thank you, Norma
My mother was just diagnosed with this at age 71. This information was helpful to me on this journey.
Dear Melissa,
Thank you for your note. Please note that there is much more information on our website at http://www.lewybodyresourcecenter.org and through our Helpline at 516-218-2026. Please don’t hesitate to call with any questions. We are available from 8am to 8pm EST seven days per week.
My wife of 42 years was diagnosed with Levy Body Dementia almost two years ago. She has since progressed to Stage 6. I am retired Navy so I get a retirement check and a Social Security check each month, but that’s all we get so getting her advanced care doesn’t seem possible. Any info on resources will be greatly appreciated.
Wade
Hi Wade,
I’d be glad to speak via email but am wondering if you would like to call and speak to our representative on our helpline. It is available from 8 am to 8 pm seven days a week (EST). The number is: 516-218-2026.
Thank you, Norma
My husband’s older brother was diagnosed with LBD in 2011 he past in 2015. At that time I noticed my husband was having problems with doing some of the things he had always done in the past like writing checks, putting oil in the car and just figuring things out in general. I took him to his doctor, and was told LBD was not hereditary and that my husband might have the beginning stages of Alzheimer’s. In the early months of 2017 he began to have tremors, and we made an appointment with a neurologist who said he has Alzheimer’s with Parkinson. He is 76 now he has progressed to not having much quality of his life he can’t tell you what he wants because he will start to talk and is unable to say more than a few words before he is unable to speak any more. LBD has never been mentioned. Are they the same thing? Thank you for listening, Terri
Hi Terri,
Thank you for writing. I would want to ask you quite a few questions about his condition first. Does he have more LBD-like symptoms like a REM sleep disorder (thrashing in his sleep, talking in his sleep), hallucinations, FLUCTUATIONS in his cognition–meaning that he may be sharp at one moment or one day and then not on another day? Has he been sensitive to medications? People who have Lewy Body Dementia (a combination of dementia and Parkinson’s generally within 5 years or less) may also have Alzheimer’s. People with LBD will have the other symptoms I mentioned as well, in addition to some others. It’s important to distinguish because people with LBD are extremely sensitive to medications and many can make them much worse. You can find more information also on our website at: http://www.lewybodyresourcecenter.org I’m happy to communicate via email but please know you can also call our helpline to answer questions in more detail. The number is 516-218-2026 and it is available from 8am to 8pm EST seven days a week. What state are you located in?
Thank you, Norma
My other half is 74 yrs old he has been fighting in his sleep for years. I ask his 2 x wife’s if he did that before they said never.
I have noticed some changes in him over the last yr and didn’t think nothing of it. Like he would forget where he was going when driving. Or stop in a middle of a round about on the road.
He is usually sharp as a whip. He played all kinds of card games. But presently he couldn’t remember what suits were lead. Heck I forget things at times I didn’t think anything about it.
Anyways Thursday Aug 27we went out and celebrated my 29 yr soberity. He was so proud of me . Friday he took a nap woke up and didn’t know what was going on . He is in the hospital and he has to go into nursing home.
Thursday he was my sweet loving partner. Never yelled at me. He was my rock .
Friday he became a different man so confused he was angery mean to everyone halsnating .. Saturday he called me and told me that they have a electric fence around him ( meaning alarm aon on bed. Demanding me to pick him up. ( A few months earlier he wanted to make sure I was debt free in case something happens to him) well he throws that in my face and accuses me of leaving him. The hospital kidnapped him he said why are letting them do this to me. He even called the police on the hospital.
The nurse said he has swelling on the brain which pushed this to happen. Breaks my heart he won’t be able to come home. I can’t believe this happened so fast. Also with in the past couple months he would walk to kitchen and back to couch10 feet away and be out of breath. Falling several times and has drop foot. Is this the last stages. I don’t know how to deal with the outburst. I had to say I love you and I am hanging up now. I miss the old him.
My other half is 74 yrs old he has been fighting in his sleep for years. I ask his 2 x wife’s if he did that before they said never.
I have noticed some changes in him over the last yr and didn’t think nothing of it. Like he would forget where he was going when driving. Or stop in a middle of a round about on the road.
He is usually sharp as a whip. He played all kinds of card games. But presently he couldn’t remember what suits were lead. Heck I forget things at times I didn’t think anything about it.
Anyways Thursday Aug 27we went out and celebrated my 29 yr soberity. He was so proud of me . Friday he took a nap woke up and didn’t know what was going on . He is in the hospital and he has to go into nursing home.
Thursday he was my sweet loving partner. Never yelled at me. He was my rock .
Friday he became a different man so confused he was angery mean to everyone halsnating .. Saturday he called me and told me that they have a electric fence around him ( meaning alarm aon on bed. Demanding me to pick him up. ( A few months earlier he wanted to make sure I was debt free in case something happens to him) well he throws that in my face and accuses me of leaving him. The hospital kidnapped him he said why are letting them do this to me. He even called the police on the hospital.
The nurse said he has swelling on the brain which pushed this to happen. Breaks my heart he won’t be able to come home. I can’t believe this happened so fast. Also with in the past couple months he would walk to kitchen and back to couch 10 feet away and be out of breath. Falling several times and has drop foot. Is this the last stages. I don’t know how to deal with the outburst. I had to say I love you and I am hanging up now. I miss the old him.
My husband was just diognosed, we are not sure what to expect, any advise? Any websites I can go to?
Hi Darleen,
Please know that we are here to help you in any way we can. Our website is: https://lewybodyresourcecenter.org/
We have the only live helpline in the country which is available from 8am to 8pm seven days a week EST. The number is 516-218-2026. In New York, we have 5 different support groups which, at this particular time, are taking place either via zoom or conference calls. We can help you with possible other support groups in different parts of the country.
If you have any other questions via email, please don’t hesitate.
Thank you, Norma
My husband was diagnosed with LBD last year, but showed symptoms for two years before that. Each of the neurosurgeons we went to kept diagnosing him with early onset Alzheimer’s. It’s hard to think we may have been able to prevent some of the worst of his symptoms sooner if the medical field knew more than they do about elder care. Nevertheless, we have a superb doctor now who specializes in dementia care and we are now able to enjoy some wonderful time together. I am cherishing every moment.
I have done extensive research, and you should know that your website has been the most helpful so far. It is comforting to see what I’ve seen being discussed. You are doing wonderful work. Thank you.
Dear Karen,
It’s always nice to hear good news. I’m so glad you and your husband are enjoying your time together. Thank you for taking the time to write your kind words about our website. It’s means a lot to hear this.
Please know that you can call our helpline seven days a week from 8am to 8pm EST at 516-218-2026.
Thank you, Norma
My husband was just diagnosed on May 9th with Lewy Body Dementia after three years of symptoms and medical professional telling us it was depression and put him on Zoloft which made every symptom worse plus he start having terrible nighttime issues where he would be hitting me, yelling at me and holding me down in his sleep. Would not remember doing it the next day. He was so much more confused that he couldn’t find his way out of the bedroom, We saw a Neurologist in March who thought maybe he should stop the Zoloft, which we did. She ruled out Parkinsons and Lewy Body but referred us to another Neurologist who specializes in mobility issues, dementia and geriatrics. The 2nd Neurologist is who diagnosed him and started him on the Exelon Patch. My husband has changed so much in the last 2 years….memory issues, confusion, processing, walks very slow, shuffles, bent over, tremors, drooling from time to time, leg pains, has had hallucinations. Sometimes he seems ok but everyday something happens that tells me he is not ok.
I am having a hard time understanding how one Neurologist 2 months ago basically dismissed everything we were telling her and the second one was able to diagnose Lewy Body. I feel for over 3 years nobody has taken his symptoms seriously. It has been so frustrating.
Dear Sylvia,
Thank you for writing. I’m so sorry that it took three years for diagnosis of LBD. Unfortunately, this is not rare. As you said, it is extremely frustrating and upsetting which is why the Lewy Body Dementia Resource Center was founded. We strive to bring awareness of LBD to as many health care professionals and the general public as possible.
Please know that we are here to help you in any way we can. Our website is: https://lewybodyresourcecenter.org/
We have the only live helpline in the country which is available from 8am to 8pm seven days a week EST. The number is 516-218-2026. In New York, we have 5 different support groups which, at this particular time, are taking place either via zoom or conference calls. We can help you with possible other support groups in different parts of the country.
If you have any other questions via email, please don’t hesitate.
Thank you, Norma
It has taken doctors about two years to finally diagnose my husband, age 81, with Lewy Bodies. He has had repeated episodes that require emergency transport to the hospital. He is now on a large dose of a medication patch and another medication to help him sleep. Right now we are seeing good results but are warned of daily variables. Oddly, he has not lost his memory but has difficulty completing a thought, finding the right words, and his handwriting has greatly diminished. He needs help with dressing, bathing and is a fall risk. I assume he is considered in early stages of the disease.
hello : my wife at 67 years old was this week said to have LBD , this is after 4- 5 years of alzheimers diagnosis.
i believe she may be in stage 6 going to 7, her agitation is bad and now is on seraquil and in the hospital
( in alberta, there is a lockdown on visitors which is causing more stress than taking care of her at home .)
her appetite is poor as is her walking. i’m told she’ll most certain end up in a long term facility from the hospital.
i read some bad things about seraquil in relation to rivastangmine ( which she is on for the Alzheimers )
how ,if it does, go from alzheimers to LBD ??
Do you advise AGAINST seraquil for the agitation ?
thanks
Dear Paul,
I’m very sorry to hear of all that is going on with your wife. And the lockdown is adding to the stress and strain to all people with dementia as well as their caregivers. You say her agitation is bad. My first question is: Is she on any other medications, other than rivastigmine? Many other meds are known to cause agitation in people with LBD. Why is she in the hospital Is that when did the agitation began? Neurologists feel that seroquel can work well for many people with LBD if they are having agitations or frightening hallucations, but everyone is different. It’s always important to start at a low does and always one medication at a time so you can monitor any negative effects. To answer your other good question, one doesn’t go from Alzheimer’s to LBD. Many people are misdiagnosed with either Alzheimer’s or Parkinson’s disease before being correctly diagnosed with LBD. Please know that we have a live helpline 7 days a week from 8am to 8pm EST (based in New York). The number is 516-218-2026. We are there to answer any questions or talk about your concerns. Please don’t hesitate to call. We also have much information on our website at http://www.lewybodyresourcecenter.org
Thank you, Norma
Hello,
I’m 62 yo and was diagnosed with LBD on May 5th and am still reeling from this. I’ve had symptoms for a couple years, the nightmares, hitting, fighting, hallucinations and some cognitive decline as well as depression and chronic pain. In all the sites I go on I’m reading about people ten plus years older than I am being where I’m at. Is it unusual to be diagnosed just days before ones 62nd birthday?
My Father had Parkinson’s with dementia and served in Vietnam like the men above. We lived on base in Cherry Point N.C. and were exposed to DDT sprayed everywhere every night while we were out playing. I wonder if that is a link?
So it seems I’m in Stage Four does that mean I will soon not know my kids and my husband or be able to care for myself? Does getting it younger mean you die quicker? We had planned on moving to Maui in two years, my husband is six years younger than I am and would work over there. I’m thinking that’s not going to happen. I’m all over the place, sorry! Please help me,
Susan
Dear Susan,
I’m so sorry to hear of all the difficulties you have had and the length of time to get a diagnosis. Unfortunately, that’s not rare for people who have LBD. As you aptly said, it is not the normal age to be diagnosed with this disease but many people do get it earlier.
I don’t know a lot about DDT spray but, as you mentioned, studies have shown that it may contribute to dementia and to Parkinson’s disease. I’m sorry to hear about your father’s illness after having served in Vietnam.
Susan, it is hard to say how quickly the disease will progress as it is different with everyone who has LBD. It also depends on what, if any, other health issues you may have. Having discussions about Maui now may be important. It is good to be pro-active. My suggestion though is not to think too far ahead in the future as that brings on anxiety and it’s best to take one day at a time.
What state are you located in currently. We would be happy to try to find you resources there. Please know that we have a helpline available from 8am to 8pm EST seven days a week at 516-218-2026. We are here to help you via email and phone. Also, we have a lot of information on our website at http://www.lewybodyresourcecenter.org
Thank you,
Norma
Hi Norma,
Thank you so much for your response. I am in Washington State. I’ve put calls into my neurologist and he’s having family crisis and has been gone so it’s hard to get a diagnosis like this and then no follow up for almost two months. I don’t know if I should be taking medication and have so many questions!
I’m having some memory loss, agitation, my Dr. called it the “restlessness “, very anxious, easily overwhelmed and very depressed. I will try to remember to call the helpline.
Thank you,
Susan
My husband has been diagnosed with LBD dementia and Parkinson’s disease. He has been in the hospital for three weeks. The social worker is having a difficult time finding a Skilled Nursing Home that will admit him. What are my options?
My husband is 85 and January 1 ,2021 started to have bad hallucination and became very combative. We went to the Er and he gave everyone a bad time and refused to take meds, yelling and cursing. They kept him for 11 nights and then did psych study and every possible physical test and MRI, spinal tap and found nothing. They sent him to Psychiatric hospital for 3 weeks, adding more meds. Then to hospital with covid positive asymptomatic and UTI. They treated him there and after 9 days moved to post rehab. Four facilities in 2 months. He came out a vegetable and is now bedridden and still hallusinating and confused. All this time no physical rehab. In their words, he is to weak, wont cooperate. Each time they said take him home. All the facilities could not handle him with 2 persons. Such is the medical system.We moved him to a group home and he is getting good care. On January 1 he could get around with a rolling walker and go to bathroom. Now he is bedridden. Many of the good nursing homes refused him saying he was to hard to handle and I would not put him in one that had all bad reviews.This is very hard to watch the decline and I feel helpless.
.
Dear Regina,
I am so very sorry to hear all that you and your husband have been through. I am wondering if any medications contributed to his behavior or if he wasn’t/isn’t on any that may help him. Please know that we have Lewy Body Dementia support groups available where you can speak about all that is going on. It always help to hear others who are experiencing the same. Where are you located?
Dear Susan , when my husband was becoming so much advanced in his forgetfulness and abilities to function I took him and began to RV full time between our three boys home locations . I had to be the chief operator and driver but for a year we had precious memories to store away. He was having fun But I knew it wouldn’t last long . I would not do it any other way being given a choice. My Dr. who said he was bi polar with some dementia told me ‘ yes , yes take him and have fun while you have time.’
I am the one with the precious memories for now..
Hi Susan,
Wondering what meds you are currently on as certain drugs can affect people with LBD in different ways.
Hello David,
I am taking:
Duoloxetene 60 mg once per day
Trazedone 150 mg 2 pills at bedtime
Melatonin tapering down currently at 10 mg at bedtime goal is zero
Methocarbamol 150 mg prn
Bupenorphine 2 mg sublingual twice daily for chronic pain. ( broke neck in a fall down stairs) should I get off this?
Zonisamide 50 mg twice per day for anxiety/ restlessness
Hi Susan,
This is Norma. Would you be able to speak by phone? It may be easier to go over a few things that way. If you send me your phone number, I’d be happy to call you whenever is best for you. You can email me directly at [email protected]
I look forward to hearing from you.
Hi my husband is 81 years old and the Doctor said he has parkinson, also LBD i’m having very bad days, it’s like living in hell the doctor told me to doble his madication, after 100 days today I had a good day, some days all I can do is cry it is so hard to control him when he is aggressive he punched my son twice, what to do in cases like this?
Dear Norma:
I’ve just found your website and am so thankful. My 95 yr old mother was diagnosed with LBD about two years ago at which time her neurologist indicated that she thought mother was at Stage 4. I’ve been mom’s sole caregiver (left my job to care for her) and just try to deal with what comes day to day. Something happened tonight that really frightened me (I guess I shouldn’t be frightened by any symptoms that appear out of the blue). Her arms, shoulders and head are experiencing involuntary movements. She has been able to get around by using a walker, so I pray I’ll be able to keep her with me at home for the long haul. My concern is that she’ll likely be losing her ability to walk soon at which time I’ll be forced to seek care for her elsewhere (exactly what I want to avoid). I haven’t been a part of a support group but feel I definitely need to seek one out. We reside in Tennessee. Thank you in advance for getting in touch with me. I feel very much alone in this.
My husband has been treated for bipolar, manic depression, anxiety as well as other health problems. He was diagnosed with dementia, first as Alzheimer’s but has developed the symptoms in line with Lewy body. Is there any research indicating if these other health conditions hasten the stages of this dementia? I so appreciate any information available. Thank you.
I have recently come in contact with three people who were told for a long period of time, 8 to 12 years, that their parent suffered from Parkinsons. All three were women with little or no shaking. In one case, when the patient passed away in a Hospital, the Hospital Physician told the daughter that he was certain that his mother passed away from LEWY Body Disease Not Parkinsons. He said she had been misdiagnosed and treated incorrectly for the duration of her illness. How are LEWY Body Disease, Alzheimers, Dementia and Parkins Diagnosed ???
Marilyn Tracey
After my Parkinson diagnosis, I was introduced to HERBAL HEALTH POINT and their effective PD treatment protocol. I immediately started on the herbal treatment, it relieved my symptoms significantly. Go to ww w. herbalhealthpoint. c om. First month on the treatment, my tremors mysterious stopped. I have been symptom free since treatment
My issues started with grand maul seizures after being discharged from the army in 1993. It ultimately cost me my wife, two children, our marine electronics business, our life, EVERYTHING. Now I am living alone, dealing with a convoluted V.A. medical system that I do not want to talk about other than to say, when I give my neurologist a detailed technical explanation of my symptoms, he looks at me and says, and what else? Like it is a game or I am joking. I want to grab him by his shirt and slam his head to the wall until his eye balls go round and round to ask him, and what else? The Mayo Clinic had me under control from 2000-2016 with zero seizures, I finished college and was working two jobs. The VA changed the medication and now I do not know what I had for dinner last night and don’t ring my door bell because I will rip off your head, jump down your throat, tap dance on your kidneys and dare your heart to beat! I need to go back to the Mayo to let them fix me but I do not have insurance because I spent my 61st birthday seizing for 12 hours on my floor. I now have my DNR on my refrigerator door to make sure that does not happen again.
I have all of the symptoms I see mentioned above, but no real medical care or support to get a real diagnosis or treatment. I can do better with a video call and a dog to a veterinarian to get liver flavor diazepam chews than I can get from the VA. I have night sweats that smell like vinegar. I wake up with bruises all over my body and no idea how they got there. I am extremely disappointed and frustrated with the Veterans Administration! I know they do not care. I care!
Dear Henry,
Please know that we care. You can reach us on our helpline or through here any time.
I am so glad I found this site. My husband was (finally) diagnosed with LBD a year ago at age 59. Looking at the stages, I see where he has been. I will be doing more research on this site. My husband has retired and I am working as long as I can (because I like my job!). We are working on the long range plan.
Thanks!
Elise, thank you for writing. Please know we are here to answer any questions seven days a week on our Helpline from 8am to 8pm EST at 516-218-2026.
My husband is 85 years young and was diagnosed two years ago with LBD It has left him with trouble walking. His legs are very swollen and he is having incontinence problems. Most of all is the dizziness which has progressed from being dizzy from time to time to being dizzy almost every waking hour. Because of the dizziness, he falls, is very frustrated and angry. There is nota day that goes by that he is not dizzy. We have tried several medications and patches but to no avail. We have seen about eight neurologists in the past two years and no one can help I have been reading your blogs and haven’t seen any mention of dizziness. Please help us. So hard to live like this.
As mentioned in an off-line email, my suggestion is for your husband to see a Geriatrician. Geriatricians are the only physicians who know the elder body well. I surely hope one can help. If you need help in finding one, please let us know.
My issues started with grand maul seizures after being discharged from the army in 1993. It ultimately cost me my wife, two children, our marine electronics business, our life, EVERYTHING. Now I am living alone, dealing with a convoluted V.A. medical system that I do not want to talk about other than to say, when I give my neurologist a detailed technical explanation of my symptoms, he looks at me and says, and what else? Like it is a game or I am joking. I want to grab him by his shirt and slam his head to the wall until his eye balls go round and round to ask him, and what else? The Mayo Clinic had me under control from 2000-2016 with zero seizures, I finished college and was working two jobs. The VA changed the medication and now I do not know what I had for dinner last night and don’t ring my door bell because I will rip off your head, jump down your throat, tap dance on your kidneys and dare your heart to beat! I need to go back to the Mayo to let them fix me but I do not have insurance because I spent my 61st birthday seizing for 12 hours on my floor. I now have my DNR on my refrigerator door to make sure that does not happen again.
I have all of the symptoms I see mentioned above, but no real medical care or support to get a real diagnosis or treatment. I can do better with a video call and a dog to a veterinarian to get liver flavor diazepam chews than I can get from the VA. I have night sweats that smell like vinegar. I wake up with bruises all over my body and no idea how they got there. I am extremely disappointed and frustrated with the Veterans Administration! I know they do not care. I care!
Stage 5 possibly stage 6
My mother lives alone. Is this a good idea or am I making too much out of it.
I do not have decision making control I was the odd man out in the discussion
Hi Theresa,
As advised in a private email, I agree with you that, if your mother has Lewy Body Dementia and is not in an early stage, she should not be living alone. We would be happy to help you with any questions and concerns going forward.
I am caring for loved one in my home (non family member)
He suffered TBI (traumatic brain injury) from mva at 53.
He has been with me for almost a year. His family placed him in nursing facility and he was there 8 months on 6 sedatives, 2 antipsychotics and Halodal every day.
He was diagnosed with lbd in 2016/2017 by observation.
I feel my journey with this man that I love is totally alone. I don’t believe any physician we have encountered in Tallahassee even understands the disease; especially since this was apparently brought on by brain trauma.
My question is how do I help myself help this man maintain quality of life when there is no one/group to turn to for advice or support. I am still trying to maintain my elder care/cleaning business which he goes with me to every day, but just feeling overwhelmed when there is no one to understand.
He is a very physically healthy man; However, believe he is between stages 5 & 6.
Dear Dorothy,
Per our off-line conversation, I am glad he now has the correct diagnosis (which is not LBD).
My mother has been diagnosed with lewy body dementia. She has severe delusions, has hallucinations, she thinks people turn into shadows and come into the house. She says they are damaging the wood frame on the doors, food has been poisoned, theyre taking the food etc she isnt seeing right colours. My mum hears voices constantly and says they wont let her sleep. With all this happening my mum can still cook, bathe herself and takes medications. Memory is sharp, however she does get confused with conversations. What stage would my mum be?
Dear Oliver,
Thank you for your email. It’s very hard to say what stage many people with LBD are in. Everyone progresses differently depending on many factors. As you mention many hallucinations and other issues, please be sure that she is not on any medications that can make her worse. On our website, http://www.lewybodyresourcecenter.org, if you scroll down on the home page and look on the left, you will see a Medical Alert Card that lists many medications to avoid. Please also know that we have a Helpline available 7 days at week from 8am to 8pm EST at 516-218-2026 if we can help in any other way.
My dad is 85. He was diagnosed with LBD in 2017. He and my mom live with me and my husband. My husband has Parkinson’s. So my house is a fun place.
Lately my dad will not communicate. He tries to speak but nothing makes sense. We may be able to understand a word or two every now and then. But it seems like when he wants to communicate, he does. We have PT, a nurse and an aide to help him shower coming to the house. He will communicate with them. He will even do everything they tell him to do. But when I or my mom try to get him to do the same things, he fights us, he acts like we are talking a foreign language or he just point blank refuses.
He wets the bed every night.
He sees things and people that are not there.
He is in a wheel chair for the most part. I was using a walker to get him through the bathroom door and to the toilet. Now that is just a struggle because he will not take any step bigger than a baby shuffle and his balance is so bad. So I have put the potty chair beside his chair in the living room. This morning he peed all over the living room carpet.
When I go to get him up out of his chair and put him into the wheel chair he cannot figure out how to do that. He will stand there and hold the wheelchair and try to move it like a walker. When it doesn’t move, he will sit back down in his chair. And we have to start all over again. If I try to move his hand or nudge him in the right direction, he says I am “being mean” to him. I am so tired of fighting with him.
For the most part, he does eat; however he has days wear he won’t. He has days when he is unable to get the spoon or fork into his mouth. So I have to spoon feed him. I cannot give him a cup … even with a straw … unless I stand there while he drinks. If left unattended he will take the straw out and take the lid off and spill it. Or he will lay the cup on it’s side between his legs instead of using the cup holders that are in the arms of the chair.
At mealtime, he tries to fit the biggest spoon or fork of food into his mouth. When we tell him it’s too much, he does not pay any attention to us and continues until he drops food all over himself and the floor. Every napkin is a Kleenex for him. He constantly blows his nose then wipes his mouth with the same napkin.
No matter what we say as far as trying to instruct him to stand, sit or eat, he argues and is extremely uncooperative.
He is unable to wipe his own bottom or dress himself.
He is not a small man. He’s 5’7” maybe 225. So when he falls it is a struggle to get him back up. It’s a struggle for me to even pick his legs up and put them in bed. Something else he is unable to do on his own.
This is by far the hardest thing to watch someone go through. He is sick and he doesn’t even realize it. He will claim that he needs to go help someone fix a car or he has to go move the camper trailer that is in people’s way because it is parked illegally or he has to go pick up my brother who passed away 11 years ago. He has not driven a vehicle since he pulled out of a parking lot and went the wrong way down a four lane highway. Luckily it was not a busy intersection and my mom was able to get his attention and get him back on the right side.
He should be in a nursing home but those are not what they are cracked up to be. Especially now with Covid. In September this year he had a UTI. Then they discovered he had a blocked bladder so he had a procedure for that and they sent him home ..with my objections .. with a catheter. He ended up disconnecting the catheter and ended up with an injection. So he was in a rehab nursing facility for 20 days. It was a much needed rest for me and my mom. However, due to the health restrictions, visiting him in the home was a joke. Sitting 6’ away wearing a mask in a cafeteria with 6 tables of other people trying to visit their loved ones was torture. Dad could not hear us, we could not hear him. It was awful. So putting him in a nursing home is not an option.
I tell everyone that this is not my dad. He was an easy going guy. Never raised his voice. Worked hard all his life. I pray every night for God to end his suffering and torment. This is by far the hardest thing any family has to go through. To watch a loved one deteriorate right in front of you, is truly heartbreaking.
Dear Karen,
Thank you for sharing your difficulty story. People tend to listen to others who are not family. It can be very frustrating when you are doing your very best to help. Re the urinating issue, there is something called a condom catheter that we’ve heard works very well for many. Here is a comment from a fellow caregiver: “All ordered through Amazon Prime. The urinary drainage bag is
Medlyne ref #DYNC1674. I found this one the easiest to hang on the bedside. The condom brand is Freedom. I only know the size my husband needed because it is what was used when he was in rehab last year, and will need to use it at night always. Easy to put on. You may need advice/visit from a nurse or physician.” I hope this helps with that particular issue. Re the eating and drinking, try your best not to force him to do anything. Let it be his idea. We also want to be sure he’s not on any medications that could be contributing to any of this. On our website, on the homepage, scroll down a bit and look on the left. You will see a Medical Alert Card that can be printed out and lists many medications that do NOT work well for people with LBD. Also, is it a possibility to have more help from aides to alleviate the stress to you and your mother? Please know you can always call our helpline at 833-LBDLINE too.
My husband is in his late 30s. We have two young children. He has higher education, is an engineer and handy. A few months ago, at the beginning of Covid-19 spread, he was diagnosed with synucleinopathy. Differential is: PAF, MSA, Parkinson’s or LBD. Neurologist believes this is very early stage so cannot diagnose. Recently, he had a mental breakdown, completely dissociated, even quit his job of 10 yrs (i was able to convince him to rethink that), delusions, thinking he has power to heal the world, foggy brain, pressure in head, forgetfulness. I’m not sure if this is just an anxiety induced mental breakdown, or beginning stages of LBD symptoms, or a mix. Any input would be appreciated. He is better now, and even sits on some long distance work meetings and helps with kids, but he gets the pressure headaches common and very forgetful. No importance as that seems to be one of the first symptoms. Thank you.
Hi Sasha,
I’m so sorry to hear all that is going on with your husband. My first suggestion is to get another neurologist’s opinion as he seems to have many different things going on and a neurologist would be able to do the appropriate tests and ask the pertinent questions. I think it would be helpful for you to see the list of symptoms associated with Lewy Body Dementia. Please see them here: https://lewybodyresourcecenter.org/what-is-lbd/symptoms/ Please also know that we have a Helpline seven days a week from 8am to 8pm EST for caregivers of people with LBD. The number is: 833-LBDLINE.
My father is waiting for a diagnosis by a neurologist and we’re running tests but reading about the topic makes me think he might have LBD. He started with what was seemingly an anxiety disorder and depression. Then he progressed to have hallucinations and delusions. He’s 84 years old and his symptoms are the following:
Hypersomnia during the day (he can sleep all day and he’s usually drowsy)
Insomnia at night
Hallucinations (at night)
Delusions (he’s actually had two psychotic episodes, all involving people that were either trying to break in or already inside the home)
Illusions (mistaking an object for something else)
Poor coordination (he has lots of trouble putting his shoes on, or closing a bottle of water, to give an example)
During sleep, he had very violent movements. This has disappeared when psychiatric medication was introduced
Apathy and depression
Loss of apetite
He can barely walk
He has suddenly developed urinary incontinence. Usually he can’t get to the bathroom on time because getting up and putting his shoes on takes so much time that when he finally gets to the bathroom it’s too late.
He has no memory problems. He recognizes everyone, is capable of lucid thinking (when he’s not asleep or extremely drowsy), he recalls his address, phone number, everything.
I’d be really grateful if you could give me your input. Taking him to the doctor and to get tests done is extremely difficult but we’re managing and I talk to him in a very calm manner and with lots of love to convince him to do it. He knows there’s something very wrong with him but I’m sure he’s scared and he is really depressed and frail. I’m at a loss and I feel hopeless and alone.
Hi Rita,
Your father certainly has a lot going on and I’m very glad to hear he is seeing a neurologist for a correct diagnosis.
A person with LBD would generally have cognition issues. Even if they are able to remember things, they will have trouble with judgment, multitasking, or planning (known as executive function). Is he having trouble with those things? Issues with time and numbers? If the answer is yes to the executive function question, key to LBD are fluctuations with cognition, where he may be able to talk about things clearly at one point and not to do at another. It’s as if a light switch is on at times and off at others.
Separately, what medications is he taking? M any medications can have side effects for some of the issues you mentioned.
I hope this helps. Please feel free to write again.
Thank you,
Norma
Hi Norma! Thank you so, so much for your reply! Yes, he has issues with cognition. Actually, the neurologist made him do the clock test and he failed it. He was convinced he did very good and genuinely thought he impressed the doctor. It was heartbreaking to see.
Hi Rita,
OK, that makes sense then. Please be sure that no medications are given that can make him worse. People with LBD are very sensitive to medications. Information about this can be read at the Mayo Clinic site, National Institutes of Health, as well as on our website. If you go to our website at http://www.lewybodyresourcecenter.org and scroll down a bit, look to your left and you’ll see Medical Alert Card. That can be printed out so that no wrong medications are given.
I hope they diagnose him soon so you can know how to go from here. Please know that we also have support groups in case of need.
Best,
Norma
Is it possible to have LBD without hallucinations? My husband had cognitive decline occur at the same time as typical Parkinson symptoms (tremor, gait change, blood pressure drop) but no hallucinations, so his doctor calls it Parkinsons even though no one else we have met through support groups have notable cognitive issues at the time of diagnosis.
Hi Allison,
Yes, it is possible to have LBD without hallucinations. Although it’s more common for people with LBD to have them, there are some who don’t. FYI, there are also some people with LBD who don’t have Parkinson’s symptoms, though the majority of people do. Every person with LBD can present differently.
When should you see a doctor? My husband’s father and uncle both died of LBD. Both began showing symptom their mid 60’s and died in their early 70’s. LBD was confirmed by autopsy. My husband’s grandfather also had similar symptoms of dementia and died in his early 80’s, but that was before LBD was known of and no firm diagnosis was available.
Now my husband, at 60, is showing some memory decline, problems with attention deficit, problems with cognitive processing, and some fidgeting and anxiety. He retired early, in part, because of these challenges. We’re not sure if it is the beginnings LBD or just aging. Is it beneficial to see a neurologist at this stage? His primary care physician has recommended that we do. We are willing to do that and even have an appointment, but just aren’t sure if it will tell us anything.
Hi Nancy,
Yes, please be sure to keep the appointment with the neurologist. The issues you mentioned are not a normal part of aging, particularly for a 60 year old. LBD is, generally, not considered to be genetic. But it certainly sounds like it could possibly be the case with two siblings having been diagnosed. Please know we are here to help if needed.
My father was a WWII veteran. I found help for him with assisted living through a VA program called SAIL. It has been several years since he was alive but this is a program that many retirement/care places know about and have all the paperwork and will file it for you. I made calls and visited the offices of the US Senators asking for help with the VA. There is also a program to help with the cost of medicines. This is also through the VA and I was able to get it for my mother as well as my dad. They paid $2.00/ prescription. For those who are posting here, it might be worth the time to look into the prescription assistance program and the SAIL program. The way it worked for my father was that his social security check was used for his care and this SAIL program picked up the rest. Good luck to those of you who served the country – getting medical help should not be so difficult.
Thank you again, Barb. Yes, the VA can help in many ways. If anyone needs help with information regarding LBD and the VA, please let me know.
The Mayo Clinic along with the University of Washington are doing extensive research on LBD. UW Medicine Memory and Brain Wellness Center may be able to give you the information to access a recent webinar. They might also be able to let you know if there are any clinical trials underway for possible treatment etc. As far as testing for LBD. Our retiree medical allows my husband to go to the AZ Mayo Clinic for treatment. He had a psychological assessment test and every 6 months he sees his Neurologist who puts him through a series of basic “test” to assess how he has declined since his last visit. It is revealing to watch the things he struggles with from assessment to assessment. There are medical options that make a huge difference with hallucinations, anger and all of the behavior issues LBD patients experience. I have found that the best way to find help is to live on the phone and asking questions. Places like the Mayo Clinic do have financial assistance funds that allow people to get care there without being able to pay for all of it. I find that sitting down at my computer at the end of each day and just writing about how the day went, what was good , what was terrible, what worked and what did not. I have padlocks on our gates, locks on front and back doors that need a key inside to unlock the deadbolt, have removed everything from the table and keep the kitchen counters as empty as possible. I have put knives and scissors where my husband cannot find them. I also try to find the humor in some of the crazy things he does especially at night. Like the bathtub drain plug being in, the water running and he was in the kitchen eating a tub of butter – I just thought the bathroom floor was ready to be washed anyway. His doctor has him on Quetiapine which has been a life saver for the midnight hallucinations and aggressive behavior. It also helps him sleep through the night as well as myself. Communicating with him has become the way I talked to my 2 year old daughter. Just simple words. I also learned not to ask for him to make a decision. Just make his breakfast and give it to him. Or put out his clothes and let him get dressed. He was a jazz musician in retirement and we have a cheap record player that plays all of his old records and he can still name the musician and song. This is one thing I have found that will keep him focused and settle him down. I have learned that this no one diagnosis or one way to deal with things. As a retired engineer, I wanted that data to analyze everything and I just does not exist. I have a brother who I can call and just ump on and he is one of those people who find a way to make me laugh. Hopefully each caretaker can find someone like that. This website is an excellent resource so thank you for being so available. I wish all of you more good days then bad.
Thanks so much for posting all of this helpful information, Barb.
I’m curious about your husband being an engineer and I hope not to offend so I hope my question will not offend you. My husband, who is a doctor, was recently diagnosed with high-functioning autism (Asperger’s.) I believe now that my father, who was a mathematician, had it as well. Both were able to navigate the social world very well, without anyone suspecting autism. In hindsight, I now see so much. Neither had pedantic speech. My spouse definitely has many autism signs as did my father.There are many articles that talk about a high percentage of Engineers who have Asperger’s. There are also articles regarding autism wiring having some similarities to dementia. I wonder if there might be a real link and if there is a higher risk for dementia in autism.
Does any of this ring true in your case? Or anyone else on the board who might be interested? I wish you the best. I love the bathtub butter story, ha ha! My father once told me to be careful eating at the care center because they poison you and then the knives, forks and spoons start dancing and then they just melt. He also gave another male patient the evil eye big time when I asked the man a question. I guess he didn’t trust his intentions with me lol. We need a laugh amidst all of it and he would have been the first to laugh if it were him.
Hi,
My husband was actually very social, very involved in organizations helping people with substance abuse, was a great jazz musician in retirement. He had the same nightmare almost nightly since we were first married 53 years ago – which I now know is an early indicator of LBD. I also was a high tech engineer and I am an introvert with a bit of OCD – which was great for what I did as an engineer. I did work with several Phd’s who were definetly showing signs of Asbergers. My older brother is a former Middle School Special Ed teacher. He said that some of my husband’s behaviors are similar to what he saw in his students with Asbergers- which I find interesting.He said if I did some reading about Asbergers, I would see the similarities. So you may have something in what you are thinking. It would be interesting to find out if the same regions of the brain are affected by LBD and Asbergers.My husband is progressing quite rapidly as he suffered a major stroke on both sides of his brain in 2018, fell and hit his head on the tile floor in 2019 and still has a small subdural hemotoma from that. When he has an MRI done, I can see how his brain continues to atrophy.The more I learn about how the brain is affected by LBD, the more I realize how much there is to learn about the brain. Being an engineer helps me to look at the symptoms, decline and prognosis in a fairly black and white perspective so I move forward with not a lot of tears etc. I have caretakers 3 days a week but it is not cheap and I cannot imagine what people do who have no financial resources for help. I have visited several care centers and I know where he will go when that time comes. I have a visit with an estate attorney planned in the next weeks as well. I am trying to know what I can and cannot do and be prepared for that day I know is coming when he will be safer and better cared for in a Memory Care facility. It is very frustrating that families in this country have little options for the financial costs of this and related neurological diseases. I also need to get my own health back on track – I was a hiker and worked out 4 days a week. I have done none of that for over a year. I now have plans to start getting back to making sure my health does not suffer. I think that is fairly common for those of us who are full time caregivers.I live by the belief that you have to walk through whatever life throws at you. Enjoy the happy times and persevere through the bad times as you knw the good times do come back. Good luck.
My father died at 70 from Lewy body, first diagnosed as Alzheimer’s. His severe sleep disorder started in his 30s. He acted out many dreams, a lot were violent. He was diagnosed at 65 with Lewy. The thing that made me question his Alzheimer’s diagnosis was the cyclical aspect of his remembering and forgetting. He was walking and talking up to three days before he died, though the last 2 months his mental decline was much more rapid. I could usually figure out what he meant to say when he inserted the wrong words. Carbidopa Levodopa was a miracle drug bringing him out of near catatonia. Too bad they tolerate it quickly. It gave him back the last few years. We were able to form some great memories doing things together until it no longer worked. I’m not sure if it was toleration or just disease progression that inhibited the usefulness of Carb-Dopa at the end. My father had a sweet child-like dementia, so he was lucky to have that versus the angrier types. He did get fearful and anxious at times but nothing terrible. He had a terrible temper when I was growing up so I got to see his softer side. He died at 7 years from the time we can think back to his first obvious forgetful moments. Too bad they didn’t understand back then that REM sleep disorders are often part of Lewy body. It might have helped his moods to have proper treatment back when he was in his 30s. It is a sad disease, but in my case his last few years came with a blessing of seeing him without the temper and I’ll cherish those memories.
Kris, thank you for sharing your experience.
My mother was diagnosed with LBD last August 2020 after taking her often to the ER with UTI issues. They found she also had an abcess near her bladder and put a drain in. I have noticed a great change in her as time goes by. She used to be a kind and caring and expressive soul. Now she is getting more verbally agressive and showing not much emotion about anything. Halluscinations are a part of her illness and she sees things here and there but some times will go 2 nights of not sleeping at all just talking to her dead relatives and other people she sees. She gest scared of some men she sees in her bed or sees kids, birds, bugs, men working all kinds of things and will not believe the are not there. After 2 nights of not sleeping the 3rd day she finally falls asleep out of exhustion and sleeps all day and night. She is on Seraquil and sleep med but when these nights happen nothing works! I have been staying up all night with her to help her to washroom and just keeping an eye on her when she sees things. Sometimes she hears a baby crying and wants to search around the house for it. But she is not very stable walking. When walking at this time she is so bent over its like she is going to touch the ground. She will try to step over invisible things so we have to hold tight onto her. She recalls the past often, gets confused and numbers seem to be a big thing for her she will sit and just either pretend to write them in her lap or say them out loud. I am getting very frustarted and thinking of what is best since all the Drs keep telling me that it will only get worse. I have been thinking of putting her in a home since i find home care costs are way too high. IT seems nursing homes are not as costly. I am in a very frustarted state feeling that I might not be able to go much longer with the way things are with her. Any advise?
Hi Desanka,
I am sorry to hear all that is going on with your mother. Is she on many other medications that may be contributing to some of this? Please know that you can call our Helpline any day from 8am to 8pm EST at 833-LBD-LINE.
Every LBD journey is unique except the common thread is that it is difficult. My mother is in stage 6. It is heartbreaking. She tends to get very agitated. Something that seems to be helping is called Depakote. It is a drug typically used to treat bipolar/manic depressive but it is used off-label for dementia patients. She was being very disruptive (pulling the tablecloth out from dinner, throwing food, grabbing a can of aerosol to smash a window because she thought the house was being bombed, hitting her walker against the wall) and so, obviously, she was in distress. It was also distressing to the other residents. She lives in a home solely dedicated to dementia (Alcouer Gardens in Toms River). She is on a very low dose of Depakote. The first dose made her very sleepy and so the doctor changed it. Now it seems to help and she hasn’t had any more episodes. She also has been dealing with many UTIs, which were contributing to the agitation and discomfort. She is now on a low prophylactic dose of UTI-related antibiotics.I hope this information helps someone. We have to help and comfort each other because, while we may not know each other, we share this difficult bond.
My mom was diagnosed with LBD about 6 months ago. She is 85. We think she is heading into stage 6, but not sure. She is now having trouble getting herself up and moving. She is in a dream state alot. She is falling more. My sister and I are trying our best to take care of her because she is terrified of going into a nursing home. When do most LBD patients go to a nursing home.
Hello Carol,
Since you said your mom is falling more, please let us know what medications she is on and check with her physicians. Many medications may contribute to this. It is a family choice on keeping someone at home or going to a nursing home. Affordability is a large factor. Please know that, with the right caring aides at home, she can be cared for depending on cost. The time for a nursing home, otherwise, is when you find it too difficult to care for her at home. Please don’t hesitate to call our Helpline at 516-218-2026 seven days a week from 8am to 8pm Eastern time if you would like to talk more about this.
I am from Malaysia. Sharing my experience in caring for LBD. My husband has been diagnosed LBD for the past 4 years. His health deteriorated so fast . Now he is at late stage of LBD.I’ve never knew about this disease, though I worked in hospital as a nurse.
Care for him is tough esp even with good family support. 24hrs care to keep him well physically. He cant move his limbs completely. Need frequent suctioning and turning to prevent pressure sores.No communiction at all.He groans often, may be uncomfortable . To keep him pain free ,i administer syrup morphine low dose.. It is sad to see some one u love suffering. As a carer, i have to be strong.
Dear Jamilah – Please know we are here for you to offer support at this very difficult time. If he is groaning, please try to figure out if there’s something he is unable to tell you. Gently touch different parts of his body to see where the pain may be coming from.
Thanks for pointing out that it’s at the stage four of dementia when life gets significantly disrupted due to memory lapses. I’d like to look for a memory care community for my grandfather soon because he has been forgetting to lock his doors at night recently, leaving me to think that he is starting to have memory problems. Perhaps it would be nice if I can ensure that someone is always watching over him from now on.
Alice, we agree that it is extremely helpful to have someone there if possible to help in many ways.
Hi, my Mom is 84 and lives with me for the past 5 years. She was diagnosed with Parkinson’s years ago. She has had really bad REM sleep disorder for about 4 years now. Seroquel at night has helped that. She would move her arms and act out and talk her dreams day or night while napping. They are always violent dreams.
The delusions started about 3 years ago, starting small, like seeing a squirrel on her curtain rod in her room… and they were sporadic. Now it’s daily, seeing people in our house, thinking I’m keeping people upstairs from her, telling me they are speaking French to her. Staring out the window at the “man” that’s supposably in our rv that’s parked in the yard… heats things, etc… smells things that are not there.
About a year ago she was put in the geriatric psych hospital for a week to work out her meds because she was seeing people supposably pointing guns at our house, she was scared and wanted to leave. She got a little better where she was calmer and “ok” with the “people”living here after they put her on clonazopam and seroquel at night and lowered her carbadopa med. she has a hard time dressing herself, can’t make a simple decision about what she wants for breakfast when I give her the same three options every day. She also can’t describe to me that she wants an egg sandwich.
I’d like to know what stage that puts her in and what her possible lifespan is at this point.
Thank you!
Janice
Hi Janice,
I’m sorry to hear all that your mom and you have been through. Please know that for many people with LBD, Sinemet (or Carbidopa Levidopa) can add confusion and actually add to or give hallucinations. You say she is on a lower dose. Please check with her neurologist or geriatrician on whether this medication is needed at all. Many people with LBD cannot take it. Others do well on it. Re asking what stage she is in, please know that everyone progresses differently and it’s very hard to say. Check about the meds first. My best suggestion is to make decisions for her that she cannot make and be as grateful as possible for the things she can still do at this time. Cherish your moments together. She will always feel the love–and I have no doubt you will too.
My wife was at a stage where she spent each day on the davenport spaced out in kind of a stupor. She was not sleeping much at all at night. She also had tremors going through her jaw and arm. I began treating her with 50 mg of THC inside a candy each night at bedtime. This allowed her to sleep all night (12 hours) and then be able to enjoy simple playtime stuff like doing puzzles and coloring. She loves doing this.
I began treating her tremors with 40hz light and sound. This stopped her tremors. However, this was not just a little bit of light and sound. I am an electrical engineer and designed lighting for the house that was at 40 hz. She is constantly exposed. I have a generator design for sound that floods the house with this low frequency sound. It takes very large woofers to reproduce 40hz.
I just wanted people here to know that the symptoms are treatable. She is in a happy place. She has almost zero short term memory and cannot do the simplest math. She has severe cognitive decline. This has not caused her to be depressed or unhappy. She is carefree about her life and I am so happy that I can make things easier for her.
Thank you for this site. I recognize my wife of 45 years in many of these posts. She is 71 years old and was officially diagnosed with LBD 5 years ago, even though I know now symptoms were there a couple of years before that. She has progressed to a stage 6 borderline 7 and appears to be going down rapidly. I have been her sole caregiver for 6 years (started a year before diagnosis). I was finally able to get a little help a couple of times per week for 4 hours each time. I feel lucky for that because resources in our area are very limited. Her neurologist is an hour and a half drive and those trips with my wife are not easy. I have to constantly watch that she is going to open the car door and cope with her outbursts. Even getting he into the car initially is a struggle and she only weighs 98 pounds. Anyway, Lewy is a terrible disease that took a smart, talented lady and turned her into someone that nobody recognizes. I have also looked for alternative facilities for her but as soon as they hear Lewy Body, they say we cannot accept her. I have found 2 places about 60 miles away that have said they might accept her . One does accept Medicaid and the other is private pay. Obviously the Medicaid would be first because of finances. While care giving is extremely hard and you have to watch every second finding a suitable place for my wife is extremely frustrating. Hopefully this site and others will raise the awareness of Lewy in the future. Thanks for letting me rant. Larry
Larry, we hope you find the right place for her at this point. All of it is so difficult and finding the right place is far from easy as you pointed out. Please let us know if we can help in any way through our Helpline at 516-218-2026.
Thank you. I know that with God’s help we will get through it. I just hope her struggle shines the light on Lewy for future improvements in dealing with the disease. I also hope that my little tirade lets those others dealing with this that they are not alone even though it may seem like it at times. Larry
85 years old.
Not quite stage 7. Rapidly getting there. Diagnosed a year ago. Moves around like a sloth. Constantly wants to sort and dig through everything. Weight loss. Appetite decreased. Aggravated often. Aggressive more than use to be. Sleeps more in the bed in spurts. Aches all over. Stomach issues. Peptic ulcer. Teeth grinding. Every now and then words come out right. Most is gibberish. Confusion comes more often. This is my aunts mama. She is home. There are about 6 people in rotation as caregivers. Around the clock care. This is the most undignified disease I have ever seen. The brain is a beautiful, wonderful, mysterious pool of NOT FAIR. I can’t imagine having to go through this without knowing God! I can’t imagine what this disease is like for people who don’t believe in God! It’s difficult to watch and I pray I never have to be a caregiver for any one else with this. God Be with you.
My husband was 1st diagnosed with schizophrenia in 2007. He had drug abused problems and went on suboxone. In 2012 he started having hallucinations. Went on Respiradal for 2 years then stopped. He started acting weird on the drug so we stopped it. In 2016 he started forgetting where he put things then the twitching started. 2017 he’s personality changed. I could only work 12 hours a week. I prepared his meals and he could only use the microwave. 2018 he got lost driving and didn’t know where he lived. He stopped driving. He had a cellphone. 2019 he forgot how to use a cellphone. End of 2019 he started hallucinations and said that all the specs and things that looked like dirt was bugs. I had to clean alot. He was having problems writing and telling time and forgot how to use the phone. In 2020 he’s doctor put him back on Respiradal. He had a bad reaction with 1 pill. He went to the hospital. We went home the same day. Next he went on antipsychotic and he was in bad shape had a reaction. Next he went on another antipsychotic. He went in the hospital had a bad reaction. Went into heart liver kidney failure. Came out of it they had him in a coma. He was a ativan. They took him out of the coma. But they keeped giving him antipsychotic and ativan to control him. I told and demanded them to stop. They wouldn’t listen. I went above them and they finally stopped. He lost 100 pounds and weighted 100 lbs. They couldn’t put a feeding tube in him. He couldn’t eat. They finally said will try and feed him. Slowly they didn’t want to. They wanted to put him in hospice. I didn’t listen. I force feed him in the hospital behind their backs. I was excercising his legs and arms in bed. They wanted him sedated so they wouldn’t take care of him. They wouldn’t give him therapy. They sedated him when the therpist came so they did nothing. They said they needed to tie him to the bed. He couldn’t talk walk or use the bathroom. They refused to help. He wasn’t able to go to a rehabilitation center because they tied him to the bed. They gave me one choice and said this one nursing home can take him but one one condition you give your powder of attorney to them and you can’t visit because of covid. I said NO! They said I have to. I want him to go to another hospital they said no. I said I’ll take him home with therapy. Ok they said. I went home he came in a ambulance with body fluids all over him. He couldn’t walk talk or use the bathroom. Was in a full brief. I stopped all the medicine. He started rolling on the floor for 2 days. He got up and walked on the 3rd. Was walking by day 4. Started using the bathroom by day 5 and talking by day 7. Was using the steps by day 7. Day 8 was eating more gained 10 lbs. He was digonosed with LBD after all this happened in September 2021. All the medicine could have did him in. They never did therapy. The hospital was the worst place. I talked with people and this is what’s happening in hospitals and nursing homes. He’s very advanced with LBD he’s walking is bad and has problems swolling and can’t remember much and repeats and forgets my name and shakes. He’s sleeping is twitching and moving and talking. He’s only 54 now. He gained 70 pounds. He’s still thin for he’s height. I’d say he’s had LBD for almost 20 years. I believe that he doesn’t have much time left. I don’t trust anyone now. “Something or someone needs to stop the medicated abuse of persons with LBD.” He was at the best hospital in Cleveland if that gives you a glue. One thing the only persons that helped where the cleaning ladies. They told me what was going on at night. That’s how I know. A lawyer told me this how things are done I don’t have a lawsuit because he’s fine. So what is the problem people turn their heads. Back in the day the nursing home had bad things happen and they still are their it’s just medicated abused instead of physical no you can’t see bruises… Now I have to take care of my man. I’ll right a book when I can.
My sister was diagnosed with atypical Parkinson’s and Lewy body 4 yrs ago. She is 70 now. I saw changes In Her 18 yrs ago. She had awful dreams were she would yell out loud and thrash in bed. She became more and more anxious, depressed and was diagnosed with cyclic vomiting about 8 to 10 years ago. She lost a lot of weight as she thought everything she ate made her vomit. She stopped doing things she liked to do. I would notice her staring off in space. Then her memory started going. One night she couldn’t find my house that’s when I made her go to a neurologist. I reported her symptoms for quite a few years but they just thought it was anxiety. She is declining quickly. She is in a memory unit now. It is just awful to see her this way. God bless all if you if you have a love one with this terrible disease.