If you need to, jump straight down the page to the potential phases/stages section.

Stages and Phases of Lewy Body Dementia -- info-graphicI’m no fan of applying the concept of “stages” or “phases” to predict the trajectory of a person with Lewy Body Dementia . I’ve witnessed far, far too much variation. Precipitous drops. Miraculous recoveries. Dizzying variations. I consider it a continuum. And not a linear one.

So I never apply stages, phases or expectations. The only one I knew for certain, was the very end. The rest was a wild ride indeed.

But there’s a constant desire by people desperate for answers, for a clue to where they’re going, what’s next, how to plan or just get by. And for that reason, I present the best one I’ve found.

I defer to the exceptional work of an exceptionally resourceful and committed duo, Sue Lewis and June Christensen, who exhaustively compiled the document based on input from approximately 300 members of an online group called Lewy Body Caring Spouses in 2006.

In my view, this is the best description of a possible sequence, categorized into five groupings of symptoms, which will always have a great deal of overlap.

Keep in mind these categories and their contents are “potential.” Personally, I shy away from the phrase “stage” and use something like earlier or later in the sequence of symptoms, which can fluctuate shockingly. This is a subtle, but important difference to me.

The following piece is based on the discussions and observations of the LBD caring spouses. It is in no way intended to represent research or science. It is developed as a very broad framework to refer to. But, “to be forewarned is to be forearmed.”

The phases have no specific time frame. Due to the fluctuations of the disease, the phases are not linear. Instead, phases tend to “ebb and flow” or subtly appear. Symptoms noted in an early phase may be present for the course of the disease. These symptoms may increase in frequency or severity over time. Or not.

In addition, patients that are still “high-functioning” may also show symptoms of Phase III or IV. By no means will a person with LBD display all the symptoms listed in any specific phase. Therefore, each phase is described with “possible” symptoms.

Many commonly used acronyms are used here, which you will likely experience elsewhere as a caregiver. In alphabetical order:
  • AD — Alzheimer’s Disease
  • ADL — Activities of Daily Living – dressing/bathing/ feeding oneself
  • BP — Blood Pressure
  • CG — Caregiver
  • DME — Durable Medical Equipment–wheel chair, shower chair
  • DPOA — Durable Power of Attorney
  • LBD — Lewy Body Dementia (or Dementia with Lewy Bodies)
  • LO — Loved One
  • LW — Living Will
  • MPOA — Medical Power of Attorney
  • PCP — Primary Care Physician
  • PD — Parkinson’s Disease
  • POA — Power of Attorney
  • REM — Rapid Eye Movement sleep disorder
  • URI — Upper Respiratory Infection
  • UTI — Urinary Tract Infection

 


 

Approximate Lewy Body Dementia Phases, Symptoms and Considerations

Phase 1 Possibilities

Most caregivers are concerned/worried that something is not right. Symptoms from later stages can also appear this early on the continuum. At the end of this phase, cognitive impairment is difficult to deny.

(Note: Symptoms from later or earlier stages can also appear at this phase.)

Symptoms and subtle changes may include:

  • Increased daytime sleep: two-plus hours
  • Hallucinations
  • REM sleep disorder
  • Restless Leg Syndrome
  • Sense of smell diminished
  • Vision affected (clarity, comprehension and/or peripheral)
  • Hearing affected (clarity and/or comprehension)
  • Speech difficulty (word-finding, pronunciation, etc)
  • Physical coordination diminished
  • Parkinson’s disease diagnosis
  • Shuffling gait
  • Slowness of movement
  • Cog-wheeling (smooth motions now jerky)
  • Posture altered (stooping or leaning)
  • Chronic runny nose
  • Myoclonic jerking
  • Comprehension issues
  • Ability to learn new tasks affected
  • Short term memory impacted
  • Loss of initiative, interests
  • Alertness varies
  • Thinking/learning/ problem solving difficulties suggest dementia
  • Mood: Depressed/Anxiety
  • Fluctuations in mood
  • Able to engage independently in leisure activities
  • Handwriting is affected (often smaller or less legible)
  • Impairments with financial responsibilities
  • May still be able to maintain employment
  • May be able to hide (mask) symptoms
  • Socialization still possible
  • Driving skills affected
  • May accuse spouse of infidelity
Phase 2 Possibilities

By this point, most caregivers are worried that something is seriously wrong and seek medical attention. Frequently given an incorrect diagnosis (Alzheimer’s, Multisystem atrophy, Multi-Infarct Dementia, Depression, Parkinson’s Disease).

Caregivers consult with an elder law attorney by this point: at very least have a Power of Attorney and Medical Power of Attorney document on the patient. Protect assets: family, friends, caregivers may be able to take financial advantage of LO. Caregivers need to familiarize themselves with all finances and assets to possibly consult with a financial advisor.

Symptoms are usually clearer by this point:

  • Balance and stability diminished
  • Ambulates/transfers without assistance
  • Increased risk for falls/requires walker
  • Occasional episodes of incontinence (1 or 2 a month)
  • Some autonomic dysfunction (changes in BP, sweating, fainting, dry mouth)
  • Leaning to one side when standing, walking and seated
  • Parkinson’s symptoms controlled with medication
  • Able to perform most ADLs without assistance

Increased difficulty with:

  • Finding words (aphasia)
  • Organizing thoughts
  • Reading & comprehension
  • Following TV programs
  • Operating home appliances
  • May be able to administer own medications
  • Able to follow core content of most conversations
  • Able to be left unsupervised for two or more hours
  • Delusions more firmly held
  • Capgrass Syndrome (seeing or thinking there are identical duplicates of people, locations, objects, etc)
  • Depressed mood
  • Paranoia
  • Agitation
Phase 3 Possibilities

Correct diagnosis by this point more likely. Caregiver and patient actively grieve. Caregivers may need home health aide assistance to maintain LO in the home. Caregiver needs regular planned respite to maintain their own health. Caregiver health issues often arise and require health care. Patient is at risk for long-term care due to: psychological symptoms, personal safety risk, and caregiver safety and health risks. The needs of the patient significantly affect personal finances.

(Note: Symptoms from later or earlier stages can also appear at this phase.)

  • Ambulation/transfer s are impaired, needs assistance with some portion of movement
  • At risk for falls
  • Increase of Parkinson’s symptoms
  • Increase of autonomic dysfunctions
  • Needs assistance/supervision with most ADLs. May require DME
  • Frequent episodes of incontinence (two+ per week)
  • Speech becomes impaired, projection (volume) may decrease
  • Able to follow content of most simple/brief conversations or simple commands
  • Able to be left unsupervised less than one hour
  • Unable to work
  • Unable to drive
  • Unable to administer medication without supervision
  • Unable to organize or participate in leisure activities
  • Increased confusion
  • Possible delusions & Capgrass Syndrome
  • Inability to tell time or comprehend time passing
  • Increased difficulty with expressive language
  • Mood fluctuations (depressed, paranoid, anxious, angry) requiring medical monitoring
  • Severity of symptoms may increase or decrease
Phase 4 Possibilities

Caregiver at high risk for chronic health/joint problems. Self-care is paramount to providing patient care. The needs of the patient require the assistance of a home-health aide/private-duty aide two-to-seven days per week. Increased patient needs may require potential for long-term care placement. Patient may be declared mentally incapacitated. Caregiver may need to explore Hospice services.

(Note: Symptoms from later or earlier stages can also appear at this phase.)

  • Continuous assistance with ambulation/transfers
  • High risk for falls
  • Needs assistance with all ADLs
  • Incontinent of bladder and bowel
  • Unable to follow content of most simple/brief conversations or commands
  • Speech limited to simple sentences or one-to-three-word responses
  • Requires 24-hour supervision
  • May need electronic lift recliner chair
  • Parkinson’s symptoms need regular medical monitoring
  • Autonomic dysfunctions need regular medical monitoring
  • Choking, difficulty swallowing, aspiration, excessive drooling
  • Increased daytime sleeping
  • Hallucinations prevalent but less troublesome
Phase 5 Possibilities

Caregiver is actively grieving. Potential for increased caregiver stress. Hospice assistance is strongly suggested. Caregiver will need hands-on support from others to maintain LO at home. Caregiver may need to honor decisions made earlier on the Living Will.

(Note: Symptoms from later or earlier stages can also appear at this phase.)

  • Difficulty swallowing
  • Dependent for all ADLs
  • High risk for URI, pneumonia, and UTI
  • High risk for skin breakdown
  • Patient requires hospital bed, Hoyer lift or Mo-lift, suction machine, etc.)
  • Muscle contractions – hands, legs, arms
  • Lean to either side very pronounced (sometimes called Lewy Lean)
  • May carry a fever
  • May need nutritional supplements – Ensure/Boost/ Carnation Instant Breakfast
  • May require decision whether or not to use feeding tube
  • Unable to follow simple commands or assist with repositioning
  • Decreased or no language skills
  • Constant delusions
  • Fluctuations less frequent and more severe

Thanks again for the exceptional work of curators, authors, and caring spouses who compiled the original information — you leave a lasting legacy:

  • Sue Lewis (MSW, RN) of West Virginia, USA
  • June Christensen of Kansas, USA

Strength to all!
Timothy Hudson.

Stages or Phases of Lewy Body Dementia

140 thoughts on “Stages or Phases of Lewy Body Dementia

  • April 6, 2017 at 1:28 am
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    Thank you very much. We’re in Phase 4 … so very sad.

    Reply
    • April 7, 2017 at 12:20 am
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      No matter what stage, I am sorry for you, and know that your diligence searching for answers and options will make your journey the best it possibly can be, Maggie. Strength to you!

      Reply
      • March 22, 2018 at 3:16 pm
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        Thank you for your kind words.

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        • March 23, 2018 at 1:04 am
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          Happy to provide the kind words. They’re authentic and legitimate, and so well deserved to everyone dealing with LBD, Mary. If there’s anything that will make the biggest difference, it’s likely kindness: towards others, and at least equally important — to ourselves. Strength to you! Timothy Hudson

          Reply
  • May 7, 2017 at 5:35 am
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    Thank you so very much for your very informative website. My husband was diagnosed two weeks ago. He probably fits in phase one to two presently. Your site gave me the answers to the questions I had about our future. With thanks, S.

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    • May 7, 2017 at 3:22 pm
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      Happy to help, S. I hope you find other information here helpful as things progress. It is a hard condition, and there is surprisingly limited information that’s reliable, and which covers all the aspects of making the life of a person who has Dementia with Lewy Bodies the best it possibly can be. Your compassion and advocacy for your husband will make his journey exactly that: the best it possibly can be. Strength to you! Timothy Hudson.

      Reply
    • April 24, 2018 at 1:49 am
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      My husband is in the final stage but physically healthy. It’s year 11 since diagnosis. The scary hallucinations are gone but he expresses verbally with the worst curse words. Clueless on that progression. He laughs when he sees me and that makes my daily visits to the nursing home worth it. I can be silly and he responds with silly words. He rolls his eyes when he gets it. He says,”Its good or wonderful” when I hold him and tell him I love him. He is there!

      Reply
      • April 25, 2018 at 12:40 am
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        This will be light on the horizon for many. Definitely won’t happen to all, but what a wonder it must be for you, Veronica. Very happy for you that your husband has done so remarkably well, for so long, and is still in such great condition and so very well able to connect. Long may it last, and here’s hoping for many others to have a similar experience. Rare indeed, but not impossible.
        > Strength to you! Timothy Hudson

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      • April 28, 2018 at 1:10 pm
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        That’s absolutely wonderful, Veronica. Despite the terrible curse words, it sounds like everything else is remarkably good. It doesn’t sound like the end to me at all. But so many things are different for everyone. Your appreciation of him, as he is, is fabulous. Long may the positive moments last.
        > Strength to you! Timothy Hudson

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      • May 17, 2018 at 10:12 pm
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        My mom was just diagnosed with Lewy Body Dementia just few months ago. She is in stage 5 at this point. She is going down hill very fast. I am trying get all the information I can on the condition. Glad you have so much time with your husband.

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      • May 24, 2018 at 1:09 pm
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        A geriatric nurse once told me “Whatever you are in life, you become more so later.” You two must have had a wonderful life together. i’m hoping I will be like your husband!

        Reply
  • May 13, 2017 at 12:58 pm
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    Hi Timothy,
    My husband Joe passed away on April 26, 2016 and suffered with LBD for approximately 7 years. The 5 stages you outlined could be Joe’s medical history and are his exact stages. We both wished for this type of outline for years. I felt like I was always one step behind in trying to decide what he needed next. Thank you for all your hard work and dedication to helping all of us who suffer with terrible Lewy.

    Reply
    • May 15, 2017 at 2:16 am
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      Very sorry for the outcome, Kathy. I believe that a lot of the components listed in this article are ones that many, possibly even most, people with Lewy Body Dementia will experience. And although I am highly hesitant to offer anything akin to a “prediction” of progression, any help with decision making, which has to happen whether there’s a “prediction” or not, is beneficial.
      Thanks for your kind words. I genuinely appreciate them. Strength to you, Kathy!

      Reply
  • May 27, 2017 at 11:46 pm
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    I must say this is the most comprehensive and detailed information I have been able to find on my husband’s condition after doing lots of research. Hubby’s symptoms go back about 5 or 6 years and the phases describe exactly how his condition affects him and how it has changed over the years. I felt myself smiling as I immediately related to the contents of each phase, especially the one about a spouses infidelity which I was accused of more than once and although I knew it was his condition, I still found it very hurtful, especially when he relayed his thoughts to outside care givers. I think he is between phase 4 and 5 at the moment and although predictions and exact “stages” cannot be given it gives an excellent insight into how they can possibly be broken down. Well done to everyone involved for this brilliant article, it has been very gratefully received.

    Reply
  • May 29, 2017 at 11:51 pm
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    Thank you for your insight. My husband has all symptoms to a degree but the most debilitating one is low blood pressure which means he is constantly dizzy as soon as he moves and has to hold onto the wall to walk. Is this going to be with him for the entire time? It has been a year now and what stage would you put this in? He has passed out with it and also has trouble controlling body temp.

    Reply
    • June 5, 2017 at 2:31 am
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      Unfortunately, I can’t say, because I am not a doctor, Linda. From my personal experience, the very low blood pressure was an ongoing issue, for a number of years. The way we managed it best (not perfectly) was to always do things gradually — arising from bed to seated, wait; slowly stand (with support), wait; take a few steps always with “hands on” for safety. Falls of any sort are so difficult, and so frequently catastrophic. One other thing that saved us was counter-intuitive to conventional wisdom: we had a lot of rugs, soft furniture everywhere, and virtually no “open spaces.” This meant that on the occasions that falls happened in the house, they were often “cushioned.” Won’t work for everyone for sure, but saved us on several occasions. I hope you can find something that will help, or a way that you can manage things somehow. Strength to you, Linda!

      Reply
  • July 5, 2017 at 5:47 am
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    Thank you so much for this! My 80 year old, very healthy mom was told on Sunday, by an infectious disease doctor no less, that her husband of 55 years most likely has the “Lewy type of Alzheimers” (I googled Louis Alzheimers and discovered the answer to the mystery of his many debilitating, odd and fluctuating symptoms). After printing information and showing it to her she said “it describes him exactly”. My Dad seems to be in “stage 3”. Although it is taking its toll on the family (fortunately my sister and I live close by), I am grateful we have an accurate diagnosis and that he is still often lucid enough to participate in conversation and we are trying to take it one day (sometimes one hour!) at a time.

    Reply
    • July 10, 2017 at 2:16 am
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      You’re doing everything right, Nancy, by taking each moment as it comes. Adaptability is the key to surviving this, and to providing the best possible journey for your dad. I’m glad you found the information useful — knowledge is power, and that leads to better outcomes. Hoping for the best for your family — supporting your mom and dad will make a profound difference. Strength to you!

      Reply
  • July 9, 2017 at 4:45 am
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    Thank you for this very helpful list of phases and symptoms. Have read your column regularly on Facebook and kept hoping for this very information so I might know, as others here have expressed, what our future might hold.
    My husband is definitely in stage 2 and has some symptoms of later stages. He is not falling but has all the symptoms of autonomic dysregulation that you describe. The difficult fact for me is his going from semi-normal to very debilitated. People will comment that “he looks fine” and he might at the moment but then there’s a downturn. I am comforted to know we are not alone in this. I am so happy and grateful during the good times.
    Thank you again for the support and for this important information.

    Reply
    • July 10, 2017 at 2:19 am
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      You are so wise indeed “to be happy and grateful during the good times.” Bravo! That is an exceptional method of adapting to such a tough situation. So many difficulties and stresses, worries, and losses, but there is joy and hope possible still in almost all cases. And you will find that you are infinitely stronger and more resourceful than you thought, but this will likely only be recognized long afterwards, because there will be so many traumatic moments. So if you can, take additional comfort knowing that you are making an incomparable difference in his life. Strength to you! Timothy.

      Reply
  • July 25, 2017 at 7:23 am
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    My father-in-law has LBD and we live in the UK and I think we are struggling due to the doctors and support teams not really knowing enough information to support us as the family. My husband showed me this and this has described his father exactly and we thing he is in stage 4 but he was only diagnosed a year ago so it seems to have progressed rapidly. It’s so sad and I really worry about my mother in law trying to do this as his main carer. This article we will show to the rest of the family for us to try and understand together. Thank you

    Reply
    • July 28, 2017 at 1:52 am
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      Glad to be of help. The UK has a great association, http://www.LewyBody.org — they do fantastic work, and might be able to get you connected with additional services. In addition, I post very regularly on a searchable, public FaceBook page which is exclusively Lewy-oriented, http://www.Facebook.com/Lewy.ca — it might help you and your mother in law with education, information, insight and hope. It’s a rough ride, as you know, Samantha, and I am very sorry you’re going through this with your family. Whatever you can do to support your in-laws will make a profound difference, and I’m sure you have such goodness in you that it will make an even bigger difference. The research and outreach you’re already doing proves this. I hope things go the best they possibly can.
      Strength to you, and your family, Samantha! Timothy Hudson.

      Reply
    • October 9, 2017 at 10:46 am
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      Hi, My mum also has LBD and lives in the UK. From diagnosis to admittance to care was just over 7 months, and there is not a lot of information to grab hold of. This has been invaluable and i think mum is now pretty much in stage 4 still less than 2 years from diagnosis. Absolutely heartbreaking disease.

      Reply
      • October 11, 2017 at 11:46 pm
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        Hi Jackie. Glad this has been helpful to you, always keeping in mind that every person is different, and yours sounds sadly accelerated, although certainly not the fastest. When we witness it ourselves, it is doubly heartbreaking, since you know the potential of your loved one, their history, their innate goodness. I hope your mum rallies again, she may just do so. Strength to you, Jackie. We all need as much as we can get. Timothy Hudson

        Reply
  • August 2, 2017 at 6:32 pm
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    With great gratitude I thank you for all your dedication and hard work putting all this info together .
    Sincerely
    Cynthia S.

    Reply
    • August 7, 2017 at 6:26 pm
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      Thank you for your note, Cynthia. Glad to help increase understanding and awareness. Credit goes to the original authors, Sue Lewis and June Christensen, who exhaustively assembled what I consider to be the best grouping of symptom-stages, still, after ten-plus years. Strength to you, Cynthia! Timothy Hudson.

      Reply
  • August 10, 2017 at 5:24 am
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    Thank you so much for all the information you have provided on LBD. My husband has had LBD for approx seven years . I would think he is in the 4/5 Phrase . Reading your information has certainly enlightened me Plus everyone’s comments . Thanks heaps again to every one for your wonderful advice & help .

    Sincerely Doreen Mason

    Reply
    • August 11, 2017 at 3:09 am
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      Hi Doreen. You’ve obviously done a great job keeping your husband so well after seven years. I’m delighted the information has been helpful to you — we all need all the enlightenment from each other we can get. When we started the journey with Lewy, I couldn’t find anything beyond books, which were exceptional, but not easy to access, and not with enough breadth of information. The comments of others, and on social media has made a huge difference to me as well. Strength to you, Doreen, you’re doing a great, powerful thing for your husband.
      Timothy Hudson.

      Reply
      • August 30, 2017 at 9:02 pm
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        My husband was diagnosed with PD in 2010 but it was only 2 years ago that I realized that there were other things that were occurring that seemed to be other than just PD and I got on the computer and realized that it could be LBD and it has since been confirmed. I think my husband is in stage 3 & I am so grateful to have found your website today.

        Reply
        • August 31, 2017 at 12:56 am
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          I am glad you found the website, Mary Ann. I am very sorry for your husband’s diagnosis, but the “silver lining” in the dark clouds of LBD is that he will be properly treated by having that diagnosis. It is great you did your homework, without suspecting it yourself, he might’ve not got the diagnosis. You are doing a very good thing for him. Strength to you! Timothy Hudson.

          Reply
      • March 4, 2018 at 11:38 pm
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        I am so grateful for this information that you have compiled and published. Not wanting to sound selfish, (my husband in stage 3 to 4 and I must work 2 part time jobs to survive) ; the mention of the decline and health risks for caregivers is crucial. I don’t know if others have family that feel their caregivers are exaggerating their exhaustion and failing health, but at least I know I’m not a whining whimp. My own health is falling by the wayside and it definitely affects my ability to take care of him and offer him my best.

        Reply
        • March 5, 2018 at 3:42 am
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          You are certainly no “whining wimp,” Terri — you are, instead, the superhero. Caring for a loved one with LBD and working two part time jobs is a profound tribute to the depth of your care. But this type of approach can take a dreadful toll on your own health. The countless, and unrelenting worries leave a mark. One upside to working through the tough journey, though, is that you have a distraction. And that, perhaps counterintuitively, can be significantly beneficial to your health, and to your perspective. I hope it is for you — you’re doing a powerful thing for your husband.
          Strength to you. Timothy Hudson.

          Reply
  • August 17, 2017 at 7:05 am
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    My mum has got a dementia with lewy body. She lives in Russia , not far from Moscow. However an understanding of this medical condition among doctors and society is incredibly limited, if any at all. As a family we are all struggling and suffering the same way as other people who are in this misfortune., but because of above the treatment and support are minimal. Thank you for this information. I wish it could be spread across all the languages.

    Reply
    • August 22, 2017 at 1:00 am
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      Thanks for the note, Irina. Sorry for your mom’s condition. It’s tough enough here in North America, where understanding and awareness is so poor — I can’t imagine what it’s like in many other areas of the world.
      That’s a very interesting thought about having the information in different languages. Have you tried “Google Translate” to translate the page into Russian? I’m sure it wouldn’t be perfect, but I’ve seen drastic improvements in the past year or two, and it might now be viable.
      Strength to you, and to all those in your family who are contributing to your mum’s care. You make a difference. Timothy Hudson.

      Reply
  • August 17, 2017 at 12:43 pm
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    My mother is 88 years old and has never been diagnosed with this disease but the more I read the more I think this is definitely what is wrong. She is in a personal care home now about to be moved to long care. This is very disturbing for us as a family. She goes days and we cannot understand anything she says and all of a sudden everything is totally clear. She cannot move on her own. She needs help getting up. First when she is up she keeps crossing her feeling trying to walk. She leans back and keeps her legs very stiff. When she is leaned forward she can walk with a walker, assisted. Skin is so thin that just helping her up can tear it. She is wearing several bandages at present. She has lost her appetite and has lost about 30+ pounds. She has illuminations from time to time. She talks about my father, who has passed,. She asked questions like, Have you talked to your father today? Or make statements like, “your father has been in been all day.” She is absolutely refusing to be moved to a long term care home. Some family has to be with her constantly and it is taking a toll on all of us. Our health is suffering because we are constantly driving to be with her. Feeling desperate right now.

    Reply
    • August 22, 2017 at 12:55 am
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      Sorry for how things are going, Doreen. I understand how desperate you must feel. It does certainly sound like much of the hallmark symptoms of Lewy Body Dementia, but I understand that in the majority of cases of people over 80 years, it is usually “mixed dementia” where there’s more than one type present, which makes accurate diagnosis very difficult.
      You are doing a great, powerful thing for your mother, and your compassionate ministrations to her are making her life the best it possibly can be. Wishing you renewed strength, clarity and acceptance. Timothy Hudson.

      Reply
  • August 18, 2017 at 1:00 pm
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    Thank you very much for this very helpful information. The illness is so variable in presentation that it’s difficult to find anything but the most general information online. Your schema helps to make sense, in a human and gentle way, for caregivers, family and friends, of this awful condition and its progress. I really am grateful.

    Reply
    • August 22, 2017 at 12:52 am
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      Thank you for the kind words, Marion. You are so right about the variability of the condition. It’s truly a wild ride — and we need all the help we can get, in — as you say — a human and gentle way. Strength to you, Marion!
      Timothy Hudson.

      Reply
  • August 29, 2017 at 2:23 am
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    Thank you for this article. Recognizing this terrible affliction has many variables, it has been frustrating trying to find even a basic roadmap for the future. My wife, who is 59, is clearly in phase 5 and as such is totally helpless. Several of the symptoms you list here she has, but I have never seen listed before. She has a strong lean to the left and cannot be centered on her back for more than a minute or two. She has frequent strong muscle contractions . I had noticed that her fluctuations seem to have slowed down, but had not understood why. With the exception of rare flashes, her ability to communicate is extremely limited. She is incapable of performing even the most basic and simple of personal care activities. She fluctuates , as I said less frequently than in earlier times, but overall her base line continues to slowly drop. Although my wife has been accepted into hospice, I have yet to place her in their care. My head and heart are not there yet . I am still capable of caring for her and will do so for a while longer. As she only weighs 95 pounds, moving her is not difficult. I can maintain her in comfort and safety although doing so is a 24/7/365 commitment. One issue not mentioned has affected my wife. Rather than becoming incontinent , my wife simply stopped voiding. This was in part coupled with an E. coli UTI she has been fighting repeatedly for the past several years. We had to address this by use of a full time Foley catheter which ultimately had to be replaced by a Suprapubic catheter. Is this unusual?

    Reply
    • August 30, 2017 at 1:12 am
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      Very sorry for your situation, which you tell with great compassion, clarity and awareness. I rarely see mentions of what I refer to as the “Lewy Lean” despite it being what I consider common, nor much mention of myoclonic seizures (possibly the strong muscle contractions). I had some success with countering the former by repositioning my LO very, very gently to straighten her at least somewhat.
      As for hospice, it is somewhat different in Canada, so I can’t speak on it from personal experience, also because my LO stayed in her home ’til a final crisis, and three days in the ICU before her death. However, the vast majority of people I know in the US have spoken of how Hospice was an incredible benefit to them, and how they wish so much they had accepted the service much sooner, basing their hesitation on the same reasons you state. I totally get why you would want to delay. But keep in mind two things — firstly, that it does not mean that you’re accepting the end, it means you’re accepting help. I know of people who were on Hospice for a couple of years, others that were on hospice for over a year, and then their LO rallied, and went off it, with the improved state lasting for a couple of years. Secondly, accepting Hospice earlier allows you to choose the right one: they are not created equal. There is risk to postponing, because often there will be an acute crisis that will force you to take whatever’s available, rather than what’s best for you and your wife. If I were you, I would investigate providers now, and accept the help, which may help you get a bit better rest periodically, and provide the utmost in care for your wife.
      You write a moving tale of deep and profound love, Thomas. I am sure that nobody who reads it will be able to do anything other than feel for your situation, and think of what a wonderful husband you are. And I wish you find continued strength and insight, and confidence from knowing what a good thing you’re doing for her.
      Peace, Timothy Hudson

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  • September 9, 2017 at 3:58 am
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    We checked my mom into Houston Memorial Hospital last week for testing due to dramatic health changes in her physical, emotional and mental capacity. She had a team of 5 integrative doctors testing her and they came up with a diagnosis of LBD and left ventricle heart failure reduced function by 80%. When she was in the hospital she was at level 4 at least. At the hospital to get a base line they took her off her meds and gave her a diuretic to reduce the water she was holding. She lost about 20 + lbs of water weight.
    With out any treatment they sent her home and we contacted Hospice for an evaluation. The team of doctors would call us back to review the findings. Here we are two weeks later moms condition has totally reversed. She is healthier in every way than she was 6 mos ago. The cardiologist came back to say she was a good candidate for a pacemaker which would help her heart . She was at phase 4 and now barely at phase 1 of LBD.
    My question is: Is this common to move between phases this dramatically or should we get her rechecked for LBD?
    Reality is she is not wanting to have the pacemaker if she finds herself back at phase 4. However if she can stay at this level or if it was a misdiagnosis she feels that gives her the quality of life she would want to have.
    Is this a crystal ball question or does something sound odd enough where we should inquiry a bit more.
    Thanks for any insight you can share with me.

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    • September 20, 2017 at 1:39 am
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      That’s a wild reversal! I hope it lasts and lasts.
      > In my lay-person’s experience, dramatic moves between some phases is not unheard of, and can be common in some people. Although that’s a significant difference. However, heart function affects many, many aspects of the rest of the body, including the brain, energy levels, strength, etc. So it is not at all impossible that she will rally greatly by the reduced heart strain, and may, or may not, have LBD, that’s a totally separate issue that specialists would have to assess.
      > One caution I would have, though, is to consider the potential benefit of pacemaker implanting, and the surgery and anaesthetic it might require, and think long and hard about potential complications, and the risk for delirium after the procedure, etc. That’s DEFINITELY something to discuss with specialists, and remind them that hospitals and surgery for anyone with dementia has significantly higher risks. Often, a specialist will only look at their area of specialty, and the acute issue they’re attending to, not fully considering the whole situation.
      > It could be that keeping her in this new state as long as possible, without having the operation might be prudent. But it is, as you say, a bit of a “crystal ball question.”
      > Here’s hoping everything works out well for you and your mom, Irene!
      Strength to you both, Timothy Hudson.

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      • December 1, 2017 at 6:05 pm
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        Pacemaker insertion is minor surgery nowadays. It’s a very quick procedure and local anaesthesia is the preferred anaesthesia. I used to work on an open heart surgery team.

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        • December 2, 2017 at 1:41 pm
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          Thank you for that clarification, Hitch. Certainly a local anaesthetic or nerve-blocker would be infinitely more desirable, to me, than any general anaesthetic. Would also prefer a sedative over a general anaesthetic. Part of the issue is not the procedure and methods/drugs, but also the entire hospital experience being so traumatic for the person living with dementia. This is no small consideration, but obviously, if the need is there for a pacemaker, and the prognosis is good for the individual, all those elements need to be weighed. My own loved one had many necessary procedures for acute injuries, and although I, personally, believe they increased the severity and progression of the condition, they were absolutely needed, and proceeding with them was the correct choice. Thanks again for your comment. Strength to you! Timothy Hudson.

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  • October 1, 2017 at 5:56 pm
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    Thank you so much for this very definitive article. I have watched my husband go through what I now know are the early phases of Lewy Body. I will read your other articles for additional material.

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    • October 5, 2017 at 3:41 pm
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      Glad you found the article, Maribeth. I hope you find the other information useful — the more we can learn, the better the journey will be for our loved ones, and for ourselves.
      Strength to you!
      Timothy Hudson

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  • October 14, 2017 at 11:16 pm
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    By far this has been the most clearly stated information I have found. My dad is 62 and diagnosed with this. He is hovering around the first two phases with some of the third phase. It’s complicated to deal with this since there is literally no real timeline or actual “stage” to determine where he is at. I know the biggest physical symptom is the restless leg syndrome and shaking. It frustrates him when his legs won’t stop. Along with his memory being off- he can’t remember what we told him about it being common for what he has.

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    • October 15, 2017 at 12:44 am
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      Very sorry that it’s struck your family with your dad still so young, Nancy. It’s definitely hard to manage with the fluctuations, and lack of “timeline.” I’m glad this document has been useful to you, and hope that you’ll be able to get some improvement with proper treatment and medication. It is possible. At least a proper diagnosis is in place so that you’ll be able to avoid potential catastrophic drug reactions that people who are not diagnosed are more susceptible to. You’re doing a great thing for your dad by researching and learning as much as you can. It will make his journey, and yours, the best it can be under the difficult circumstances.
      Strength to you! Timothy Hudson.

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  • October 15, 2017 at 8:05 pm
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    I’m so thankful for the information I’m finding on-line about this disease. My mother (97 years old) was diagnosed with this disease about two and a half years ago, but looking back, I think she was displaying symptoms long before that. She has lived with my husband and me for over six years. Just recently, a new development has surfaced that seemed to come out of nowhere…pain in her hip and leg. At first I thought it was from a slight fall, but the pain didn’t appear until three or four days later (no broken bones). It’s always MUCH worse at night but the severity varies. After dealing with that for two weeks, it now seems to have diminished almost completely over the past two days. Is it possibly the Parkinson’s side of LBD and the pain might return, or could it be something else?

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    • October 16, 2017 at 2:10 am
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      Hi Kathryn: Glad you found the information useful. I can’t comment on the pain, since I’m not a medical doctor. Speaking from experience with a loved one with LBD, pain for no obvious or apparent reason came and went many times — sometimes would last a long while, and spontaneously disappear, sometimes very short and acute then gone. I always had the more significant instances checked out by a doctor, but unless there was trauma from a fall, for example, it turned out to likely be elements of the rigidity and muscle stiffness of the Parkinsonism aspects of LBD. We never had to resort to anything stronger than Tylenol extra strength, which is a huge blessing since all other pain meds have more significant downsides.
      You’re doing a great thing researching the condition and having your mother live with you. You’re making her journey the best it possibly can be. Strength to you! Timothy Hudson.

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  • October 17, 2017 at 4:51 am
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    I want to thank you for this information. Unfortunately my husband wasn’t given the diagnosis of LBD until about July of this year when the problems escalated enough for him to be hospitalized. He has now gone into long term care because I am no longer able to care for him at home due to his needs which I am no longer physically able to do. He is in the fourth and partway into the fifth stage as far as I can judge. I can see hindsight a lot of the stages over the past two or more years. Your article has pieced so many puzzling parts together for me.

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    • October 28, 2017 at 12:39 pm
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      Very sorry for the trajectory, Sharon. Caring for a person with LBD at home is a monumental task, and for so many, utterly impossible for so many reasons. Keeping him with you as long as possible, and ensuring that he’s well cared for in LTC is absolutely best for him, and allows you to retain as much of your own health as possible. You are doing a great thing for your husband, and should feel proud, despite the great sadness brought on by the long dark of Lewy. Strength to you, in the continuing journey. Timothy Hudson

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  • October 20, 2017 at 12:11 pm
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    Id like to reiterate some of the comments above. My father has just died at close to 89 years following a few years that started with unexplained falls about 4 years ago then loss of balance then rigidity, some psychotic episodes and increasing immobility…well you know the rest. When finally diagnosed (he has lived his life and was born in Portugal) the hospital was very clear this was his prognosis and it clarified what all the unexplained falls were all about. His progress through these stages is almost exactly as you have set out here and as we quite obviously neared the end it was helpful for me to read up how you saw it. Thanks again for a very informative article about a very debilitating disease which my dad fought but lost to in the end. In some ways it was a huge relief for him and for me at the end as he had become incapable of even communicating with whispered conversations the only thing I got out of him much of the last month of his life. Having said that his lucidity was there all the time in between the more random thoughts. I wish anyone else going through this courage and all the best and would be happy to help in any way. Well done for your valuable work.

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    • October 28, 2017 at 12:47 pm
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      That is a generous offer of assistance, Douglas — particularly since you’ve gone through the full journey with your father. Your experience is not uncommon, but it is more uncommon in one respect in that you are a male, a rather invisible group of carers. As one myself, I have found it an ongoing shock to know how few men do this visibly — it is not that no men are care partners, they’re just “silent partners” in many cases. For whatever reason, I hope more and more come forward and shine proudly. To me, real courage and strength is being able to handle the difficulties and strains of advocating and bringing a loved one along the hardest road one can travel. Doing that is heroic, even though it never feels like that.
      > I also agree that many, if not most, of our loved ones can perceive much of what we say and do right to the end, but may just be unable to respond. As you noted, moments of lucidity were there ’til the last, and it shows that it’s important to keep connected, and to be present.
      > If you wish to help others, I think the best is to join an online support group to provide context and compassionate advice to others in the midst of the condition. I put most of my energies to that and feel that it makes the biggest impact, which is my #1 goal, and is a living tribute to my loved one, killed by Lewy.
      Strength to you, Douglas. Timothy Hudson.

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  • October 28, 2017 at 1:05 am
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    Thank you so much for your very informative postings. As others have commented the phases you’ve discribed have assisted in giving us some kind of an idea of where we are and what the present and future challenges of this nasty horrible disease that is lewy body dementia. My 71yr old father fell and hit is head while shopping with my mother about two yrs ago. He was brought to A+E and they put it down to low blood pressure and he was possibly dehaydrated, they treated him and left us feeling that the episode was a one off. Fast forward a few months and he fell at home and made a huge dent in one of the doors with his head. This time docors done a whole battery of tests and found he has stage 3 cirrhoiss of the liver and heptitas B. Doctors also found out that he has an anersyem in his stomach and on his brain and all of his arteries around his heart and body are thickened and as if all of this wasn’t enough to kill him we know he has lewy body dementia with parkinsonism. He went on to having two more falls while in hospital. I personally believe that the first fall he had two yrs ago quite possibly was the first inclination of the lewy body dementia, although my mother has since said she had noticed his memory was steadly getting worse and so was his driving it was terrible at the time and it was a battle to try to stop him from driving. I feel that in his way he was in some way trying to maintain some contol over his own life and who would blame him!..He has been in hospital since april( had two more falls while there) I have to say around this time i began to notice his personality was changing ,he was always a very knarky and impatient man with a quick temper now he was becoming a very laid back, tearful and childlike, he was going with the flow. The hospital have done every exam possibile and we got the news a couple of months ago about the lewy body and the parkinisum, he has deterioated at frightening speed. He has lost about three stone in weight ,he has the lewy lean and the shuffling gait, phsically he looks like a husk of a man with these big terrified eyes looking at you .His voice is almost a whisper and he now needs to wear pads as he is double incontinent. He actually cried in my arms for the first time the other day, i never in my wildest dreams would have forsaw this ever happening. My brother committed suicide 25yrs ago and my father never showed any emotion at the time ,dont get me wrong i know he felt it he just couldn’t show it. But he sees john all the time and keeps saying ‘ i have to get me and john out of here.’ He thinks they are both in prison. He also sees animals and spends his time packing up all of his belongings and sits by the door with his hat and overcoat on waiting for us to take him home. We got a phone call twice from the nursing home to say the found him the basement trying to climb over a gate in the middle of the night, keep in mind he can barely walk. Last week we got a phone call to say he fell and split his head open and was rushed to hospital in the middle of the night. He had to he held down while getting stiches in his head and did become agressive which is happening all the time now. I can only imagine how terrified and distressed he is ,it is so heartbreaking. My mother spent nine hours in the hospital trying to keep him in the bed while he’s shouting at her to ‘ leave him alone’ .We have really noticed a change in attitude from the nursing home staff towards the family and my da, i don’t think they are able for him he just doesn’t sleep has delusions and hallucenations is constantly trying to escape all of the time. I did read in a couple of articles that some nursing homes dont like taking lewy body patients because they are understaffed and overworked and ill equiped . I know this myself because i’m a healthcare professional and ive worked in nursing homes. I think some of the problem is lewy body is very hard to diagnose and very few professionals know much about it, i certainly was uneducated but im very grateful that the neurologists in the hospital were able to make the diagnosis. Had we known how bad this disease is we should have pushed to have him go into a hospice instead of a nursing home. My father needs 24hr care holistic care patience and understanding. The nursing home are doing they’re best with what they have. We don’t know how long he has left and to be a hundred % honest we hope that he doesn’t have too much longer left and that he will be reunited with my brother soon and he finds some peace. We love him and we miss the man he was even if he was knarky, impatient and bad tempered!! Sorry for the long long post but i really needed to get this stuff off my chest and to speak to others who are going through this hell… thank you so much, and God Bless…. linda ( Ireland )

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    • November 11, 2017 at 3:06 pm
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      That is a very sad tale, Linda. Very sad indeed. There is just not enough care available for a person with behaviours like your dad’s. There’d have to be two-plus people there with him 24/7, which no facility nor family is capable of in almost any circumstance. I hope that his frequent visions of your late brother somehow provides companionship, albeit so many unsettling visions seem to assault him. May his worries and frightening visions diminish quickly and completely, and may you all find whatever peace you can. It is a punishing disease, and punishes so many around the person afflicted. Strength to you, and may the luck of the Irish return and find you and your father soon. Timothy Hudson

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  • October 30, 2017 at 1:37 am
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    Thank you for this information. So very helpful. My husband is three years diagnosed and fits between phase 3 and 4. Greatest loss for me is the changes in his personality. I treasure the days I see glimpses of him at his best and have learned to embrace and muddle through the days he struggles. So sad to watch them slip slowly away. Again, thank you for sharing this with us.

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    • November 11, 2017 at 3:08 pm
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      Very sorry, Susan, for the changes in his personality. You are so very wise to cherish and treasure the moments of him at his best in the current situation, and I bet you do infinitely better than merely “muddle” through the days he struggles. You are his angel, and are making his journey the best it possibly can be. That is a powerful gift. Strength to you! Timothy Hudson.

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  • November 11, 2017 at 10:37 am
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    This is the best information I have found on LBD. It is amazing how my husband has gone through and had most of the symtoms of each phase. I reckon he is between phase 4 and 5 at the moment. He was diagnosed about 3 years ago but I feel he has had LBD for over 8 years and your information has confirmed this. It is amazing how little is known about LBD even by medical people and I will be pointing anyone interested to you website. Thank you

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    • November 11, 2017 at 3:12 pm
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      I’m glad you found it, and glad you found it useful, Jane. But I’m sorry your husband has gone through so many of the symptoms. Eight years of LBD is a very long time, and will have taken its toll both on him, and, I’m sure, on you as well. It profoundly affects all those close to the person afflicted with the condition, and the closer you are, the more its impacts are felt.
      > It is indeed sad how little is known about Dementia with Lewy Bodies, but hopefully that will continue to improve — I feel there has been incremental improvements, but I am very close to it, and perhaps I am mistaking my own awareness with that of the medical community, in particular, of which I am not a part.
      > Thanks for your continued advocacy, and for suggesting others visit the site. I try to keep it as current as possible, with very frequent summaries and news via Facebook — I just can’t keep up with new articles as frequently as I’d like.
      > Strength to you, Jane — may your journey be the best it possibly can be. Timothy Hudson

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  • November 11, 2017 at 8:53 pm
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    My husband is only 74 and he was diagnosed 10 years ago with LBD. He has been in a nursing home for 3 years and I believe he is in stage 5. Most worrysome is he now sleeps all day until 4 pm then sleeps through the night. He’ll do that several days in a row then is relatively alert for a few days then starts over again. It’s like he is recharging his brain. Your article helped to figure out what stage he is in. He is on a drug which slows down the progression of the disease. It has been a long tough road. I still go daily to help with his care because there is not enough staff to care for him properly.

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    • November 12, 2017 at 2:31 pm
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      Sorry for the long dark of Lewy that you’ve experienced with your husband’s condition, Joan. Ten years is a very long time, and I’m sure the last three while he’s been in the NH have had countless challenges, even if different than having him at home, I know that doesn’t necessarily make it any less challenging.
      As for his long sleeping periods, I experienced that with my loved one as well. And your analogy of it seeming like he is “recharging his brain” is very apt to me. I don’t think the exact reasons for the almost narcolepsy-like periods is known, medically, but certainly for us as well, during the latter years, extended sleeping seemed to be absolutely necessary for her to be able to function as well as possible.
      It is a long, tough road indeed. You are truly his angel by going daily to help him. It is making his journey the best it possibly can be, and that is no small thing. You are making a difference, a real difference that inspires others, as well.
      Strength to you, Joan. Timothy Hudson

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    • December 10, 2017 at 12:20 am
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      Could you please tell me what drug he is on and the dosage?

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      • December 10, 2017 at 12:24 am
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        Hi Lenore — I’m not exactly sure what your question refers to. Medications and dosages differ vastly, and this’d not be an appropriate place to discuss it. I hope you can find some information elsewhere. I would suggest you join on of the big Facebook carer groups to see what others might experience. The two I am affiliated with are “Levy Body Dementia Carers” and “Levy Body Dementia Support Group.” I highly recommend both. Hope you get some answers. Strength to you! Timothy Hudson.

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  • November 14, 2017 at 9:40 am
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    Thank you for all of the information on this site. I was diagnosed with Lewy Body Dementia just three weeks ago and it seems to be progressing quickly….I am having very intense balance issues. I am only 59 years old. The neurologist seems surprised that I am having such intense balance issues so quickly. Looking back I have had some of the symptoms for a couple of years. Anyone else experience this? Thank you.

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    • November 19, 2017 at 1:09 am
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      Hi Dean: Very sorry for your diagnosis. Early onset has its own special challenges.
      I’m not a doctor so I can’t comment on any diagnostic elements, but certainly there are people who have balance issues very early. I’d suggest you connect with an online FaceBook group for persons with the condition — they’d be best placed to comment on this further. Perhaps the best group for persons with living with Lewy Body Dementia is Forget Me Not-Lewy Body Dementia (https://www.facebook.com/groups/1466664356939288/) which is run by people in a similar situation. There are other groups as well, which are much bigger, but have a higher percentage of carers, rather than those diagnosed. May your journey be the best possible, you find the best solutions, and that you find blessings and insight along the way.
      Strength to you, Timothy Hudson.

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    • December 27, 2017 at 8:07 pm
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      Hello Dean
      My husband was diagnosed at the age of 59 as well. He had been falling ,hands shaking and he noticed his writing skills and word choices were declining. He retired from his Law practice immediately and just this month retired from the university where he was a professor. He is 62. My husband has had severe sleep apnea since his 30’s that went untreated . Also he had a double knee replacement at 55 ,after surgery he had to much oxygen loss for to long. I would like to add he has had a familiar tremor in his hand since a little kid. I feel the oxygen issue brought LBD on at a much younger age . His brain has significantly shrank in size for someone is age as well. Lewy sucks. Please find joy in everyday and everyday will be different. September 2016 my husband asked his neurologist what she thought his life expectancy was she told him 2- 5 years. So we had changed our life plans and trying to live our dream as we can .

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  • November 16, 2017 at 2:00 pm
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    Thanks so much for this information. My husband was diagnosed with Parkinson’s in 2005 which seems to be the easy diagnosis. He had bee suffering from depression and night terrors for about seven years before the diagnosis of Parkinson’s. As the disease progressed, it took on all the characteristics of Lewy body dementia. He experienced visual hallucinations that he could rationalize as not real as the disease progressed to steal away other abilities. The real tough battle began in 2014 when he was involved in an accident that crushed his sternum and he had to have surgery. The dementia just exploded. The hallucinations went wild! He was in the hospital in restraints for six weeks. Sometimes those restraints were on his hands and feet. That was the beginning of the nightmare that included two visits to the Phyc ward and I won’t even describe that Horror. For a short five months I was able to manage him at home before his behavior became aggressive.
    We have been in Memory care for three years now and it has definitely been a challenge because of the behavioral issues. I am so thankful to find this information on the stages of this disease. We appear to be in stage five. I agree with the fact of the fluctuating of the disease. I would call it an emotional roller coaster. It is also helpful and encouraging to read of others experiences with this disease. You can only understand it if you live it!

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    • November 19, 2017 at 1:14 am
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      Hi Liz. What a rough ride you and your husband have had. To me, I think that hospital stays accompany the worst, and most precipitous declines. I can’t count the number of peers who’ve experienced terrible outcomes while in the hospital. It’s a necessity for sure, in many cases, but the interaction of LBD with trauma, and/or the hospital environment (and anaesthetics, changes of meds, etc) is often punishing beyond belief.
      I hope that things settle somewhat for you. And that on the “emotional roller coaster” as you call it, that you find some times when that particular roller coaster slows down and becomes less frightening.
      Strength to you! Timothy Hudson.

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  • November 18, 2017 at 6:56 pm
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    Hi I am just wondering how Long stage 5 can last. My dad was just put into a nursing home about 6 weeks ago. He is def a stage 5 except he can swallow. His talking is very soft and when we can hear him it’s because we are up very close but what he says just doesn’t make any sense. I know my Dad must hate being like he is. There are days he will eat most of what is given to him, of course he has to be fed. But there are days he has zero interest in food as well. He will have 3-5 days where he doesn’t eat much at all then a day or two where he eats a lot. I am just so confused with this current stage he is in. I dont think he is ready for hospice but he has lost about 12 pounds the last 6 weeks.

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    • November 19, 2017 at 1:21 am
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      Hi Michelle. That’s a tough situation — but I would never be confident of what stage a person is at — it’s just too variable. The article is carefully written to ensure that the potential for shifting between stages, forwards and backwards, jumping or skipping phases, etc., is very, very common. Despite that, it’s human nature to want to put a finite horizon on things. I don’t think it’s possible to be that certain, unfortunately. I hope that despite the challenges you are experiencing, and the unhappiness this must bring your Dad, that there are periods of grace, and that he and you are lifted by the love you share. You will make an incomparable difference for him by your presence.
      May your confusion be replaced with whatever acceptance you can muster — that doesn’t mean giving up, just recognizing things cannot all be changed, and working the best possible with things as they are. It is critical to sustain yourself.
      Strength and acceptance to you, Timothy Hudson.

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  • November 22, 2017 at 12:06 am
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    My wife began showing signs about eight months ago. She was hearing things at night in our attic and actually believed someone was living there. She also thought she was seeing snakes in our yard. I placed a lock on the attic door and the one bedroom door so now she thinks she is hearing someone downstairs at night and almost every night she thinks someone is trying to break into the house.
    And worst of all she has developed a friendship with someone on Instagram who has gotten her to send money on several occasions to a location in Nigeria. He tells her he is dying and needs money for medical attention.
    About two weeks ago she saw a Neurologist/Dementia researcher at our state medical university. After a general discussion of her symptoms he did several cognitive tests. He said that exact diagnosis is difficult but the test did not fit the profile of Alzheimer’s but did fit LBD. We are scheduled to see him again in February. My wife is 65. Has anyone experienced anything like this?

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    • December 2, 2017 at 1:09 pm
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      That would be extremely upsetting, Fred, and I’m sorry she is having so much difficulty, and that you are as well. This does not sound uncommon, unfortunately. I’m sure you’ve secured the computer and finances already, but that is risky on one level indeed. As far as the diagnosis, many people are misdiagnosed, and no wonder: it is devilishly hard to know which symptoms are from which condition, because there are many other variables including vascular issues, drug interactions, mental health, and a large number of possible dementias. I hope you can get clarity on her condition, so that you can get the best treatment for whatever it is, and so that your quality of life can be the best it possibly can be. It is a hard road. But you make a difference in your wife’s life, Fred. That is a powerful gift.
      Strength to you! Timothy Hudson

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  • November 26, 2017 at 3:56 pm
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    My husband, now age 67, had emergency open heart surgery in August of 2016–his heart stopped, he lost a lot of blood and almost died. In November, 2016, he had his gall bladder removed. Another month later he was back to work and driving but was losing a lot of weight in spite of eating more than ever. He never seemed to fully regain his strength and we noticed some cognitive decline. He then had a hernia repair surgery on September 15 this year. We had taken a long car trip in June–he drove on narrow mountain roads, we went on our annual vacation in late August–I drove that time. In late September following the hernia repair and noticing worsening cognitive issues, a neurologist incorrectly diagnosed him with vascular dementia. We turned to holistic medicine to treat it and were considering hyperbaric oxygen therapy, but his decline accelerated. On November 3 this year–less than one month ago, he was still being cared for by me at home, but it was becoming too difficult, and suddenly he became incontinent. We took him to the hospital where he was diagnosed with Lewy body dementia. He was still able to walk with a walker a short distance. We sadly decided he could not come home again as I could no longer provide the care he needed, and I am still working every morning and could not leave him alone. He was transferred to a nursing facility on November 8. The very next day, the staff could no longer transfer him into any kind of chair and he is now bedridden. We hope to obtain a wheelchair that reclines. He totally fits the Stage 4 category now, and has entered Stage 5. So, from the first clear symptoms we noticed during the spring of 2017 when he was working and driving, until today when he is in Stage 4/5, is a shockingly fast decline in about 7 months. He is still eating, but having difficulty chewing and has to be spoon fed. We are concerned about bed sores given his weight of 125 pounds. Skin on bone. We are starting funeral plans. I cry all day long. Visiting family and friends leave his room in tears. Such a kind, wonderful man. Such a horrible disease. Thank you for this article.

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    • December 2, 2017 at 1:22 pm
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      What a punishing, relentlessly rapid transition you and your husband have experienced, Jean. I am so sorry for you and your whole family. This is unusual, indeed, but the element of vascular dementia being a contributor certainly sounds possible to me, a non-doctor, since he’s had so many surgeries. I’ve also noticed there appears to be a correlation with anaesthesia and subsequent cognitive declines. It could be so many things, and may be that the trauma and/or underlying health condition that required the surgery brings on an otherwise compensated-for cognitive issues, as well as the stay in hospital which can be such an overwhelming, confusing and difficult experience.
      > You’re doing your very best, and are making an incomparable difference for your husband — making things the best they can be in a very bad situation. It is wonderful that people are coming to visit, despite how upsetting it is. That is incredible, and I hope it will continue.
      > Strength to you, Jean — and peace to your husband. Timothy Hudson.

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  • November 27, 2017 at 6:44 pm
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    My father is a cross between 3 and 4 very sad and very stressful. Thank you for putting this out there.

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    • December 2, 2017 at 1:25 pm
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      Sadness and stress seem to be a constant companion of the carer of someone with Lewy Body Dementia, unfortunately, Michael. I hope you will also feel that there are some small “wins” as well. Throughout the years I was a carer for my loved one, every day when I awoke, I would say to myself “Today, I will make a difference.” Sometimes I’d say it several times during the day, almost like a mantra. I came to know that I couldn’t solve or cure, but I certainly could bring things up from their worst outcomes. And that was a powerful realization, and helped sustain me for years. I still say it. You could as well — because everything you do for your father does, indeed, make a difference. An incomparable difference.
      > Glad you found the article helpful. There are many more here that may help you as a carer. Strength to you! Timothy Hudson.

      Reply
  • November 28, 2017 at 3:06 pm
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    Yesterday my friend told me he has a degenerative brain disease. He did not want to talk about it much, though I do know his symptoms. He has tremors, problems with focusing, hallucinations, trouble sleeping, and depression. He also has had a lot of weight gain and loss over the years I’ve known him and problems with speaking at times (mumbling, looking for words, etc.). However, my friend is 23 years old and I know LBD is typically in a much older population. Is it possible for him to have this? If not, do you know what he could have?

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    • December 2, 2017 at 1:28 pm
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      At 23 years old, Dementia with Lewy Bodies is highly, highly unlikely. But it is not absolutely impossible from what I know, a non-doctor. If you can continue to encourage your friend to seek the best medical help possible, that would be what I consider the best thing to do for him. There are an almost infinite number of possibilities about the cause, and potential diagnosis, since so many elements can interact. I always wanted a nice, clean name to put on whatever I was dealing with, but that often will be elusive. It must be hard for you to witness. Strength! Timothy Hudson.

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  • November 28, 2017 at 4:54 pm
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    I was diagnosed with LBD on Oct 20 of this year, just over a month ago. It seems to be progressing very quickly. When told of symptoms, my wife has said that I have had some of the symptoms 2 years ago. Has anyone else experienced it happening so quickly? I have strong faith and have had a good life and have wonderful family and friends supporting me. I am 59 years old. I am just amazed that my balance and cognitive issues have deteriorated so quickly.

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    • December 2, 2017 at 1:35 pm
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      Very sorry for how things are quickly progressing for you, Dean. I’m happy to hear you have so many wonderful friends and supportive family, and that your faith is strong. Those things will make an enormous difference. Unfortunately, many people (certainly not the majority) experience the condition early on, as you are. I hope you’re getting good care and medical support, if not perhaps a friend or family member can accelerate and amplify the advocacy needed. Doctors are often very busy, and we need to be assertive to get things rolling effectively. This is not easy if your cognition is affected. Please accept the help of others, it will help you, but it will also help them by knowing you’re getting the best outcome possible.
      > I would recommend you search out a few Facebook groups — Living Beyond Diagnosis, Lewy Body Dementia is a page by a friend in the US who is living with LBD, but his case, and the very slow progression is highly unusual in my experience, but he and the group are very caring. I’d also suggest that the people helping you join two online Facebook support groups (the posts may be too upsetting to you, and tend to be acute issues, not the normal day-to-day). The groups are “Lewy Body Dementia Carers” and “Levy Body Dementia Support Group.”
      > May your journey be the best possible, Dean. Strength to you! Timothy Hudson.

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  • November 28, 2017 at 8:52 pm
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    God bless you for putting all this together. Thank you! It’s most helpful. Best wishes from Ireland, Anne-Marie

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    • December 2, 2017 at 1:37 pm
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      Thank you, Anne-Marie! I’m delighted you found this, and that it’s been so helpful for your. And thank you for the best wishes from the Emerald Isle. Right back at you, Best Wishes to you from the best place in the world (to me, certainly), Canada. Strength to you! Timothy Hudson.

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  • December 7, 2017 at 1:00 am
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    This article defines my husband. I’m so grateful for information that addresses his situation. He was diagnosed with Alzheimer’s Disease a year and a half ago. I have learned as much as I could about that disease, but didn’t see many of the symptoms my husband presented. For example, I asked other caregivers about the accusations of infidelity, but none had experienced that. We have a long and faithful marriage and I was devastated by his accusations. You can only imagine the sense of relief I felt just reading Phase 1. My husband is well into Phase 3. Today at an Alzheimer’s seminar a very attentive nurse took me aside and suggested the possibility of Lewy Body Disease. She has directed me to a doctor in my area who specializes in Lewy Body. I will be making an appointment tomorrow and I feel better-informed from your article. It is exactly the information I needed to read. Thank you!

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    • December 7, 2017 at 3:29 am
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      I’m glad you found the article, Victoria. But I’m terribly sorry for your husband’s condition. No matter what the specific diagnosis, dementia is such a hard road. It’s good that the nurse suggested LBD, and that you’ve been so proactive to follow up immediately to see if he can be treated. Finding the best possible doctor, with the most experience can be transformational. And even if not that profound, it can make the difference between the worst, and the best it can be (which is not always easy to differentiate, but is, regardless). You will make an incomparable difference in his life, Victoria. That is very inspirational. May this go the best possible! Strength to you. Timothy Hudson

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  • January 11, 2018 at 11:14 pm
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    Right on, so informative – wish I had found your site and this list earlier – husband was hospitalized for falls, stayed two nights and sent to Hospice – Had noticed aggression beginning, but not really on your list although, it is one of the things people usually notice and say, he is probably Lewy Bodies – It was Hospice that used the LB name – and I began researching. Too late, tho, husband passed two weeks later. Your list would have been more helpful and so now I will share it so others can find you sooner than I did. Grateful for your work, one day, I pray and will help fight for a cure for this tragic disease.

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    • January 13, 2018 at 4:45 pm
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      Sorry for the loss of your husband, Marian. What a difficult trajectory. Your hope for a cure is positive, and by sharing the information you’re going to contribute greatly to the journey your fellow carers who are “still in the trenches” now face. I hope you can find renewal now your husband is at peace, and you’re free from the constant worries that come with caring for a loved one with Lewy Body Dementia.
      > Strength to you! Timothy Hudson.

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  • January 12, 2018 at 10:07 am
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    Thanks for this. My dad died in Oct. He was 86. He was diagnosed with parkinson’s at 82. I suspected he may have LBD at the start when researching but PD was the diagnosis.
    He was also (I believe incorrectly) diagnosed with PSP at one point.
    The stages correspond with his progression but I never saw the lean. Can that be absent?
    He was at home until 82 and now I look back and can see there were issues (before we knew) with speech, anxiety, paranoia, sleepiness, apathy. If we’d known, we’d never have had his hip replaced which seemed to send him into a rapid decline. Although it was a local not general anaesthetic, and he was in pain before.
    So much is obvious with hindsight. I’m glad he’s at peace and send love to anyone dealing with this, especially if your loved one is young.

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    • January 13, 2018 at 4:42 pm
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      Hi Bernie: Sorry for the loss of your Dad. I’m sure the last period was particularly difficult, but I’m sure your compassion and care made an incomparable difference.
      > Yes, you can definitely have the condition without experiencing the “Lewy Lean.” It’s common, but not universal.
      > I would not feel in any way guilty about your choice for the operation on his hip, and its effect on his decline. That choice was made with best intentions, and best knowledge available at the time, so was the right choice. We experienced the same scenario, but at the time of the operations, they were deemed necessary, and despite the apparent acceleration of the decline, they also allowed her to be more mobile for the subsequent years, which I think balanced well with any detriments the operations contributed to.
      > Glad that you’re positive in knowing he’s at peace now, and your sentiment to those caring for others right now is shared.
      > Strength to you and all who loved your dad, Bernie. Timothy Hudson.

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  • January 18, 2018 at 4:02 pm
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    Hi thank you so much for your list it looks like she is in the last stage. She has lost all weight bearing ability, drools, Leans to one side, Seem to have constant hallucinations.

    She had not been diagnosed for a long time and we suffered badly as care givers with the paranoia. Visiting siblings did not believe that there mum was ill and constantly thought my wife and I were abusing her.

    She was wrongly later diagnosed with vascular dementia; I was only after her hallucinations became more pronounced that she was diagnosed with Lewys.

    The medication she has been diagnosed with has meant it has been a rollercoaster as each time the lewy has fought back.

    She is now refusing food due to the hallucinations and has gone from a size 16 to a size 8 UK size and weighs just over 6 stone.

    Until I read this post no one has explained to me about the Lewy lean, but it describes my mum exactly.

    All I can advise anyone reading this post is get the right mental health support early. I wish we had both my wife and both separately were nearly driven to suicide due depression. The doctors we had all seem to say the same thing its dementia what do you want us to do? The general hospital was always in a rush to get rid of her in the UK. We had to fight to get into a dementia assessment unit.

    Thanks again

    Raj

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    • February 4, 2018 at 6:43 pm
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      Very sorry for how things have gone, Raj. It’s such a hard road, and all your points are true, and well taken. I echo your last point the most, perhaps — getting mental health support for the CARER is highly important. Caring for a person with Lewy Body Dementia can take more than one can imagine from your reserve of energy and hope. Keeping the best network possible, and seeking support for yourself with a mental-health professional before a crisis happens to you will be honouring and helping your loved one as well. And keeping a network of friends and co-carers is impossible in many cases, in those situations, as it was for me — I found immense solace and support in online groups. I co-administer two on Facebook (Lewy Body Dementia Carers, and Lewy Body Dementia Support Group), and these groups were saviours to me, and to countless others.
      > I hope things can go the best possible, that the paranoia that she heaps on to you and your wife, although caused by the disease, diminishes rapidly. Usually that does not last forever.
      > Be proud, Raj — you’re doing an incredible thing. Truly.
      Strength to you, Timothy.

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  • February 3, 2018 at 12:53 am
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    Sadly today my mom was just diagnosed with this disease or disorder. Is truly the saddest day of my life. My mom is 72 and had surgery on her spine: and we just thought the symptoms were a complication from the surgery. As of today she is on a feeding tube could hardly swallow or talk. Finally we got the answers we want and can’t blame it on the surgeon anymore, it’s LBD. Yet it is much easier to blame it on someone else to blame a disease, one that is going to take my mom‘s life. To come home and research this and hear all the exciting news, or different theories, thoughts, and speculations was hard to read. But to find this website with people that are actually dealing with it, with their loved ones…. thank you for the support in a site to go to.

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    • February 4, 2018 at 6:51 pm
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      Hi Suzi — you’re at a particularly difficult point in the progression, where your mom is newly diagnosed. It is utterly overwhelming. Take it as slow as you can — you will not be able to take in everything in a short time, especially with her in the hospital right now. My top priority, while in hospital, would be to keep her in the most calm and un-chaotic environment as you can in a hospital, and to check with the doctors to ensure that no traditional anti-psychotic drugs are used, since they can be catastrophic for a person with LBD.
      > I hope you will be able to gain information from here, and the many other reliable sources online. And I highly suggest that you join an online support group, and one in-person, if you can. These can be truly life saving, because you’ll find that you are not alone at all, and that there are countless others in the same situation, but they’re “invisible” since caring for a loved one with LBD typically means constant vigilance, and varying degrees of isolation. It’s important not to become completely isolated. You deserve support. You mom would want the best for you — honour that wish.
      > Strength to you, Suzi. Timothy Hudson.

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  • February 3, 2018 at 12:57 am
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    Personally, thank you Timothy Hudson for being an advocate in a voice to us all, on my thoughts or concerns questions for our loved ones. I thank you for this.

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    • February 4, 2018 at 6:58 pm
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      You are very welcome, Suzi. I am happy to provide whatever help I can. It is such punishing condition, and how it affects our loved ones and all us carers: we need all the help, tips, techniques and information we can get. I am happy you found this site — there’s a lot of information on Dementia with Lewy Bodies online, but much of it is irrelevant. If you’re interested in knowing reliable, useful information on a semi-regular basis, I publish at http://www.Facebook.com/Lewy.ca, and the two support groups I recommend most are on Facebook, Lewy Body Dementia Carers, and Lewy Body Dementia Support Group. You may find those to be incredibly helpful.
      > Strength to you! Timothy Hudson

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  • February 6, 2018 at 8:03 pm
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    Hi, my Mum i think is in stage 4 of LBD she was diagnosis about four years and it has been a gradual decline.
    She is now unable to walk or communicate well and needs 24hr care. My father is the main carer, I help couple of days a week and we have two carers who come in nearly every day. I’ve got to say it’s a struggle and extremely heart wrenching — not sure what comes next, and I understand this may go on for a long time.
    But for the few moments of her laughing and communicating and with her wicked sense of humour it seems all worth it.
    Good to read about other people’s experiences.

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    • February 17, 2018 at 2:20 pm
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      Hi Fiona — thanks for your comments. I’m sorry for your situation, but glad that the four-year decline has been gradual, at least. To some, a gradual decline would be a blessing they would do anything to have experienced. It is so fabulous that you’re able to make the most of it, and can still enjoy the few moments laughing with her, communicating and even the remaining ability to convey her wicked sense of humour. It is “all worth it” as you say. Long may the times last that are the best they can be, under the circumstances. You’re making her life incomparably better by your presence.
      > Strength to you! Timothy Hudson.

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  • February 11, 2018 at 1:52 pm
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    My father passed away from Lewy Body Disease on February 2, 2018. I wish I would’ve found this site during his 8 year battle with this. He was officially diagnosed with LBD on December 5, 2017. It was like a switch flipped off and he started developing more and more of the symptoms in the end stage of LBD. Difficult to diagnose, we thought we were dealing with Alzheimer’s. Everyone with LBD has their own journey I suppose. Dad had a fall on December 12th and the stay in the hospital put him in a downward spiral. He never got back to his baseline or even close to it and continued to get worse until he took his last breath 9 days ago. I was convinced he was having TIA’s (mini strokes), but it is just the nature of the last phase of the disease. Thank you for this informative site as it is a godsend for family and caregivers taking care of loved ones afflicted with this horrific disease. There is no right or wrong way in dealing with this because each day can bring a whole slew of new issues. Sometimes, just holding your loved ones hand and telling them everything is ok is the best thing you can do.
    Thank you for your hard work and research in putting together this informative article.

    Sincerely,
    Julie

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    • February 17, 2018 at 2:16 pm
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      I am sorry for your loss, Julie, but thank you for the great insights you present. You have been able to convey a difficult journey very soon after its end, which must be so very hard for you to reflect upon so soon. You’re absolutely right that sometimes “just holding your loved ones hand and telling them everything is ok is the best thing you can do.” I am convinced that our loved ones can hear and perceive what we say, and are comforted by our voices long after they are able to communicate it in traditional ways. You did a good, powerful thing for your father.
      > Thank you for your kind words, and may they reflect back upon you, with lighter horizons ahead.
      > Strength to you, Timothy Hudson.

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  • February 13, 2018 at 7:01 am
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    First: Thank you Timothy for the wonderfully helpful information and service you provide to those of us in need.
    Second: A suggestion for Jean’s posting of 26 November 2017. My wife has a Barton Chair that reclines to be horizontally flat. This permits two people to transfer her by sliding her horizontally from her hospital bed to the Barton Chair (and vice versa). This transfer can be accomplished either with a slip sheet or, in my wife’s case, on two large smooth bottomed pads that are already there because of her incontinence. Then the chair back can be raised to an elevation that is comfortable for the individual. As the back is raised, the leg support moves downward at the same time. The leg support can be raised, as is needed in my wife’s case, separately up to horizontal. The chair can then be pushed around and, if adequate transportation is available to transport large wheelchairs, to another location such as a physician’s office, church, etc. (The Barton Chair can be obtained with a mechanism that permits one person to do the transfers. We have the mechanism but do not use it.) With VERY careful wording accompanying a physician’s notes, the Barton Chair can be obtained through Medicare.
    If needed, I have a set of photos of the Barton Chair on one page that show the Chair in the various positions referred to above.
    Third: My wife has very delicate skin at 87. If anyone concerned with bed/pressure sores does not already have an air mattress, we obtained a high quality one with an air pump that operates full time. With the air mattress, no more bed/pressure sores. As with the Barton Chair, in the US an air mattress can be obtained through Medicare.

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    • February 17, 2018 at 2:11 pm
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      Thank you for these excellent suggestions, Edward. Your other post is helpful context about your long road with your wife’s Lewy Body Dementia, osteoarthritis, fibromyalgia, and more. The specifics you include here will be very useful for people to understand and know — and your suggestion to people that the CAREFULLY word the request to get medicare to pay for the Barton chair is excellent advice. Often these requests are made at a time of crisis, so not much attention can be paid to those types of details at those times, so may be denied when otherwise they might be approved. And that can mean a significant amount of money.
      > Thank you for your compassion, your tips and suggestions, and your inspiring goodness. Strength to you! Timothy Hudson

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  • February 16, 2018 at 6:49 pm
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    Mr. Hudson

    My wife of 54 years at 87 has more than one form of dementia. But the most obvious is LBD. Your article above and the references are by far the most informative on LBD that I have found. Your article is most appreciated.

    I cared for my wife at home as long as I could. She is now in an excellent Adult Family Home where she is receiving wonderful care. The owner and staff call her Grandma that she enjoys. I visit every day and help feed her.

    My wife also has very advanced severe osteoarthritis and fibromyalgia that have been progressing since about the late 1970s/very early 1980s. The osteoarthritis has finally reached the stage where she can no longer sit in her regular wheelchair and now uses a Barton Chair. With her skin becoming quote fragile, she now has an air mattress on a hospital bed. The Barton Chair, hospital bed and air mattress were all obtained through Medicare.

    A Barton Chair and/or air mattress might be of use for some of the earlier posts by others. (See my earlier post re the Barton Chair and air mattress.)

    Thank you again.

    Edward

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    • February 17, 2018 at 2:07 pm
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      You are indeed your wife’s angel, Edward: so tenacious, steadfast and caring. You’ve had such a long hard road, starting in the ’70’s, it makes it even more inspiring. Your suggestions about the Barton chair and air mattress will help others for sure. I think these are often not understood. They are not always prohibitively expensive, either. I have even seen a versatile chair of this type, complete with a Roho, air-pocket cushion, in a Salvation Army store for an incredibly low price (might even have been free if presented with a legitimate request).
      > I think those two items can make a huge difference, and hope that both the air-powered mattress that distributes pressure constantly and the barton-type chair will, indeed, help others. Thank you for your excellent suggestion, and for your inspirational care for your wife. It makes an incomparable difference.
      > Strength to you, Edward. Timothy Hudson

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  • February 20, 2018 at 10:09 pm
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    My husband was diagnosed with early onset Alzheimer’s five years ago. The past 4 years have been difficult. He started having REM sleep problems and problems walking and performing task he knows how to perform. He retired 10 months ago and it’s been a down hill ride every since. Last week he was diagnosed with Levy Body Dementia and we where told he has progress quite rapidly since he retired. This has helped me to understand where he really is. I was a trained CNA who took care of only Alzheimer’s patient in home health. It’s a whole different world for me to go into someone’s home and train them how to care for there loved one and walk away. Now I’m the caregiver, and I’m amazed at how little I taught my client’s families about how to care for there loved ones.
    Thank you so much for this break-down. It has helped me so much just reading it today.
    Margo

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    • February 25, 2018 at 7:36 pm
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      Hi Margo: Thanks for your note. Very sorry for what’s happening with your husband, and how fast the decline has been. That’s a particularly profound insight about how caring for a loved one with dementia is so vastly different than providing training or assisting someone who is caring for someone you don’t know personally, and how much more difficult it is to provide direct care to a loved one, and to witness and experience the decline first hand, 24/7.
      I’m glad the article has been helpful, and I hope the journey you share with your husband is the best it can possibly be, under the circumstances. All you do will make an incomparable difference.
      Strength to you! Timothy Hudson

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  • March 2, 2018 at 8:32 pm
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    Thanks, Timothy. My husband is in stage 5 now and on hospice. I don’t really understand but feel very fortunate that he has never had delusions. hallucinations, or significant. Mostly he just sleeps. Have you heard of others having all the physical symptoms but not the mental ones? He was diagnosed 3 years ago.

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    • March 5, 2018 at 3:38 am
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      Hi Anita — Usually that’s pure Parkinson’s Disease, if there are no cognitive issues.
      Certainly the vast majority of people I know with Dementia with Lewy Bodies have at least some delusions and hallucinations. But for some, the hallucinations are mild and innocuous, so may not be worth remarking on to you. If you believed there was a cat in the room, and you liked cats, you might say nothing about it and find it unremarkable. And for many people, small animals and children are the things they have hallucinations of, and so don’t report them. I know if I saw a cat or rabbit in my yard, I’d think it was normal.
      I am sorry things have progressed so far, and that your husband is now on hospice. But I have heard great things about their service, and I know that you have been his unwavering advocate, and have been so steadfast throughout that you have made his difficult journey the best it possibly can be. Truly you are his angel.
      Strength to you always, Anita. Timothy.

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  • March 18, 2018 at 9:10 am
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    Wow! I feel as though I have entered the twilight zone in less than a month. My husband has changed so rapidly. He is having hallucinations all the time. He sees snakes, rats and now bats. He thinks there are rats in our bed and jumps up screaming and chasing them down the hall. He sees them even in the day time. Snakes are mostly on the roads as we travel to town and home. He will not enter his bathroom now because he can hear their wings fluttering from the hall. If the door is open, he sees them and is afraid to enter. He has always been extremely afraid of all three of these animals since he was a small boy.
    He now gets up and roams the house in the middle of the night and is afraid to go to sleep. I have to sit up in bed and read tell he goes to sleep. He will wake up to see if I’m still there. Once I go to sleep he’s up roaming. I’m so afraid he will fall due to his poor balance and posture now. His eating habits are also on a decline, and I fuss at him to try and eat more.
    I never had a patient who progressed this fast. I promised him I would always take care of him at home. Our days are not as rough and we enjoy our talks and watching westerns together, to pass the time away. On good days I take him for long rides in the country or in the mountains.
    Four of our five children live out of state. The daughter who does live here is a hospice RN and patient coordinator for our local hospitals and keeps a check on him all the time, and is also concerned about his fast decline. He retired after 52 years in the auto parts store business with his brother. He was having too much trouble keeping up with his responsibilities there. So the store was sold and they both went home. We talk a lot and have agreed to take it one day at a time. After all who knows what God has planned for tomorrow.

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    • March 18, 2018 at 5:04 pm
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      It sounds like you’re doing wonders for your husband, Margo. Truly.
      I don’t think there’s anything further you could be doing — keeping him as calm as possible, and at home as long as possible will make a incomparable difference. And your encouraging him to eat properly, taking him for drives, and keeping him active with discussions will also contribute greatly to his continued good condition, under the circumstances.
      I just hope that you’ll be able to recognize if you are unable to continue: caring for someone with LBD takes a great toll on our health — physically and mentally, and I’m glad you have one daughter close by, at least. The two of you should keep an eye on each other to make sure things are manageable. Sometimes things progress so quickly a big change has to be made suddenly. Looking for options now, even if you never use them, is prudent.
      Here’s to your continued health, to things being the best they possibly can be for your husband, and for a reduction of his hallucinations of the snakes, rats and bats. That must be very upsetting for him, and difficult for you to calm him as well.
      Strength to you, Margo. You’re doing a wonderful thing. Timothy Hudson

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  • March 24, 2018 at 4:16 am
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    My father is 77 and until about two months ago seems to be pretty healthy aside from some mild-moderate memory loss and stiffness of his joints first thing in the morning. It seemed almost sudden that he began complaining of confusion. At first we thought he was just being anxious of worried about getting older??? But soon it became apparent that something was really off. He’s not having significant trouble walking, he is studdering when he speaks at times, sleeping more, inhibitions are gone and he’s very emotional. He s also has delusions. Used to love reading but he can’t follow a story line anymore. This all happened literally in the past 2-3 months.
    He still doesn’t have a diagnosis, but it’s looking more and more like LBD. Is it possible that the disease can progress that fast?
    I am still in denial. I am still hanging onto some hope that this will go away and my old dad will come back. Our hearts are breaking . He’s still got so much life to live.

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    • March 27, 2018 at 12:06 am
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      Hi Cristin — super sorry to hear how fast things are going. First, though, he needs to see a well-informed specialist, neurologist, psychologist or psychiatrist (or a combination). This may be difficult, but is critical. There are some conditions that are reversible, but regardless, he needs a proper diagnosis to get proper treatment. Keep in mind that there are at least 100 dementias, and that the last bit of research I saw concluded that 78% of people with one dementia have at least one more simultaneously, so the exact condition can be very hard to accurately diagnose, as you can imagine. It is possible for things to go that fast, although in most cases like this that I have known of personally, they’ve been for early-onset. But with proper treatment, you may be able to significantly slow this, or buy back some of his old self. With your hearts breaking, I know it’s hard, but you will need to gather your resolve, ingenuity and resourcefulness to get him in to see a specialist ASAP. This way, he will have as much life to live as possible, with the best quality of life throughout.
      Strength to you. Timothy Hudson.

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  • March 24, 2018 at 6:35 am
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    According to this wonderful informative comprehensive article, my brother who was diagnosed ten years ago with Parkinson’s, then eight years ago with Lewy bodies is at stage five. His wife is totally devoted to him and his care.
    A few years ago we persuaded her to have a short break, put him in respite care for seven days, it was not a happy experience. The respite care home did not seem to comprehend that he could not feed himself. Food was left in front of him, cold. He was left in soiled clothing. On her second visit she found him wedged behind the toilet door in his room.
    After three days his wife took him home, has not left his side since.
    She does have agencies involved now, but in the early stages it was a struggle, she had to pay for the appropriate bed out of her own money.
    Anyway, my reason for leaving this post is to thank the original author of this article and say how accurate the staging process has been. I wish I had found it earlier.

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    • March 26, 2018 at 11:59 pm
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      Thanks for your note, Alan. Sorry for how things have gone with your brother, and for how hard it’s been on his wife, and you — doubtless. Your tale of poor care is not uncommon. A great deal of preparation, orientation and coaching is required (as well as preliminary assessment, getting reports from others with loved ones at the facility, and vigilance during the stay). Certainly, many are not this bad — but it must’ve made it very difficult for your family, and all involved, to have had no respite of any significance for so long.
      I hope things go the best they can, under the circumstances. Strength to you, and your sister in law, and peace to your brother.
      Timothy Hudson

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  • March 27, 2018 at 7:01 am
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    God bless you for your article. My dad is 83 and was diagnosed 4 Year’s ago, with Lewy Body Dementia. I feel that he is experiencing Stage 5 symptoms. He now is unable to walk, feed himself, and he has a permanent catheter. His voice is a whisper and unable to say just a few words. He has hallucinations frequently and is sleeping a lot. His body is fragile and his skin is easily tearing and bruised. He has the Lewy body lean and drools somewhat. His eating has become limited. We have kept him at home until 2 weeks ago where we had to place him in a memory care living facility. We still have his morning caregiver whom still goes and gets him up into his lift care. Makes sure he tries to eat along with my mother, sister and I alternate times to be with him throughout the day every day. My dad was a very intelligent man who took complete care of himself and his family and to see him go from a functioning individual too a weak non functioning man breaks my heart. Placing him because of the inability to provide all the care he needs has been gut wrenching. I have struggled with “are we doing all we can?” And trying to assure myself that they providing good enough care for him. These are the hardest times of my life to feel so helpless but yet knowing that God will never leave or forsake us. Sincere thanks for your wonderful article along with reading other’s experiences has brought much comfort as I hold onto those days where I see rays of love in the eyes of my father.

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    • April 14, 2018 at 5:54 pm
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      It is heartbreaking, indeed, Spring. It sounds to me like you’re doing absolutely everything right, in a situation that’s all wrong. By the daily care of your dad by you, your sister and your mom, his life will be the best it possibly can be. It will also ensure that the staff is attentive, since they’ll know there’s “eyes on them” regularly.
      > Long may you have comfort from those days where you see the rays of love in the eyes of your father. I’m sure you’ll remember and cherish those forever. You are doing a good, powerful thing for him.
      Strength to you! Timothy Hudson

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  • March 28, 2018 at 2:26 pm
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    My mother hasn’t officially diagnosed yet, I am taking her to the doctor next week. I have been in denial I think. She has a majority of the symptoms though (Delusions being the absolute worst!!). I think we are in stage three. It is freaky that it says that caregivers are likely to have health issues in stage three as I was just diagnosed with two autoimmune diseases! (and I have an issue with my ankle joint!)
    I have no help whatsoever, so I hope that I can sort something out when she is diagnosed. (I am still holding out hope that maybe it’s her thyroid and low vitamin b12. I feel I can be in denial for another week, it won’t hurt).
    Thank you for this information – I have been searching the internet for something to help me understand it a bit better and this was perfect.

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    • April 14, 2018 at 5:50 pm
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      Sorry for your autoimmune disease diagnosis, Emily. That’s super rough. It makes caring even more difficult, and I am sure that the stresses of caregiving contribute to the development of many ailments in the carer.
      > I’m glad the information was useful, and like you, I hope that the changes in your mother are due to something more easily treatable than LBD, like B12 deficiency or normal pressure hydrocephaly. These are surprisingly common, and often go undiagnosed.
      > Strength to you, and health! Timothy Hudson

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  • April 8, 2018 at 1:11 pm
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    Because my husband’s father had Dementia with Lewy Bodies, we are schooled in the slow onset and see changes in my husband, age 63. We are trying to get the DAT scan test approved by insurance to verify DLB. I am wondering how the long term disability works when you can’t get on medicare until age 65. He is still working but making mistakes. It’s a time of worry.

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    • April 12, 2018 at 11:00 pm
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      That’s a tough situation, Peggy. Very sorry for what happened to your father in law, and what appears to now be happening with your husband. There is evidence for some genetic connections, which is worrisome for anyone with a parent who had LBD (I’m in this situation as well). But keep in mind that there are countless other things that can have similar outcomes, so I hope you can get a definitive diagnosis, and that it’s not LBD, but if it is, you’re well prepared to make things the best they possibly can be. As you say, “a time of worry,” indeed. Strength and healing to you and your husband. Timothy Hudson.

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  • April 12, 2018 at 10:13 pm
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    Here is what this disease does to you….I stumbled across this site and see that I have posted on here twice and don’t remember doing it…..wow! Blessings to all of you….

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    • April 12, 2018 at 10:56 pm
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      Well, Dean — it’s no surprise, and don’t beat yourself up too much. There’s countless websites with information on Dementia with Lewy Bodies, and the comments on this particular article are now over 100, so it’s easy to miss. And stress, of which there is far too much when dealing with LBD, also affects memory, temporarily at least. Likewise, blessings to you — and strength, of course! Timothy Hudson

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  • April 13, 2018 at 10:42 pm
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    Hi!
    Thank you for your “Phase” descriptions. It gives me an idea of what to look for as my Dad’s LBD progresses. Chester is 92 years old and was diagnosed with Alzheimer’s Disease 3 years ago. He’s not on any medications and until recently, he seemed to be doing okay for his age. I kept reading everything on Alzheimer’s Disease and a lot of it just didn’t fit in with my Dad’s condition. I was getting a lot of information on woman but next to nothing on men. I started to look around at different dementia’s and when I found LBD, I realized that’s what he has.
    He fell and hit his head about 2 months ago and since that time, I think he’s not doing as well. He never seemed to think clearly after the fall. He has good days and bad days, but there have been more bad days lately. I believe he’s entering stage four of Lewy Body Dementia. My question is, at 92 is there a greater likelihood of LBD progressing more rapidly? He is in an Independent Living senior apartment at the moment. I’m wondering if I may have to place him in assisted living by the fall. His walking is getting worse and he refuses to use a cane or walker. He’s very defiant. He has the “masked, blank” look all the time and he plays with his tongue a lot.
    Thanks to everyone who has posted on this site. All the experiences of other people are helpful.

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    • April 14, 2018 at 6:04 pm
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      Sorry for the decline in your father, Mary. In my experience, a fall is so often catastrophic. And they’re close to unavaidable with the postural instability that is a hallmark symptom of dementia with Lewy Bodies. Still, if he’s 92, and living in an independent living apartment, he’s done incredibly well under the circumstances.
      > As to your question about a speedier decline at an advanced age, I can only speak from my experience, not as a medical professional: I have observed that, in most of the cases I’ve known directly, the earlier onset cases seem to progress more quickly. But that’s purely anectdotal. One thing that may increase the perceived rate of decline for a frail, elderly person with LBD (or any dementia) is that other medical conditions may contribute to the decline, including reduced physical activity and socialization, cardio-pulmonary impairment, dehydration, poor diet, vitamin B12 deficiency, and the combination of other dementias, etc.
      > I would certainly see if he’d be willing to move into a situation with more care, but you are wise to be respectful of his need for independence. That is critical to many people’s sense of self. And whatever you, and any other family and friends, can do to spend time with him will make a difference. We all greatly benefit from compassionate advocacy and companionship.
      > Strength to you! Timothy Hudson

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      • April 15, 2018 at 12:35 am
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        Thank you so much for your response. Any input is helpful. I know that there isn’t one clear cut answer to any of these situations. But just having an idea of what other caregivers and researchers have observed is so helpful. One day at a time… Thanks Again! Mary

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        • April 15, 2018 at 6:20 pm
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          You’re doing a very good thing for your father, Mary. One day at a time, indeed! May as many of those days be ones where you are able to recognize the difference you are making.
          > Strength! Timothy Hudson

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  • April 15, 2018 at 5:54 pm
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    It’s been almost a month now and things have changed. My husband wanted to go see our daughter’s new house in Fort Myers, Florida. I asked his doctor and he said I could take him — just stop a lot, so he could walk around.
    Well I took him all by myself we spent a week in Florida. The trip down there was rough on us both. But the trip back was awful on him. He could not walk at all after riding for two hours. He hallucinated and thought drones where chasing us to kill us. Needless to say the trip was extremely hard on him.
    After being home one week our kids built a ramp to help me get him out of the house, and the doctor ordered a wheelchair for him. His doctor and daughter decided to bring in Heartlight hospices for palliative care for him. It hard for me to get him in my SUV now, and to take him places as often as I was before. I’m planing to do only one trip a week now, that’s all. It’s weird — his memory seems the same but his body is so weak. They ordered oxygen as well because his oxygen level is lower than normal. He is also a heart patient after a heart attack in 2008 after an Atrial-Fibrillation episode, not to mention a prostate cancer serviver. He thinks he will bounce back from this as well. His sense of humor gets me through each day.
    My new motto is “If I don’t laugh I’ll cry”

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    • April 15, 2018 at 6:19 pm
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      I bet that trip to Florida was not only difficult on him, Margo, but probably even more difficult on you! I hope you recovered from it quickly — that’s a lot of stress. I do not recommend really any travel with a person with LBD because the change in routine, even when positive, often causes behavioural changes which are often more than a carer can manage with, as the hallucinations about the drones indicates, his physical decline, inability to walk etc.
      > I think having palliative care consulting and providing assistance is a good idea. It can be transformative.
      > And it truly is a wonder that he, AND you have retained your sense of humour. In our own case, that was probably the most important positive element of the LBD journey, which is otherwise quite unrelentingly hard.
      > Hope you can keep up the laughter! Strength to you. Timothy Hudson

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  • April 26, 2018 at 4:37 am
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    My husband has been diagnosed with LBD based on a mini-mental test and hallucinations. He has no physical symptoms and functions well with ADL’s etc. We are trying to decide whether to have an EEG to make the diagnosis more definitive. Do you find that the patient of this terrible disease usually want to know what the diagnosis and prognosis is? I would like to keep him at home as long as possible. There are facilities in the area that have a waiting list for independent living that we could both move to when available allowing him to have assess to memory care when needed at the same location. My concern is that the stages will come quickly and the assistance with care will not be available. I am surprised that caregivers on this forum did not speak to the tremendous cost of services in the home and facilities. The unpredictability of the disease makes it hard to make plans for his welfare. Do you find that there are medications to slow the disease or at least symptoms? I salute the many caregivers on this site for the tremendous service they have given. I hope I can do as well for the one that I love. Thanks for sharing.

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    • April 28, 2018 at 1:23 pm
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      Glad that his symptoms have not also included the physical aspects, Frances. Hopefully they won’t, ever. They typically present in varying amounts, and the variability is right across an extremely broad spectrum from none, to profound Parkinsonism physicality. As to your questions:
      1. My understanding is that an EEG will not confirm LBD, just rule out things like vascular issues, tumour, etc. And keeping in mind the most recent study I’ve seen shows 78% of people with any dementia actually has a combination of more than one.
      2. I would gauge whether you disclose the diagnosis and prognosis based on your measured, compassionate assessment of whether it would do the individual any good to know. There are too many variables to suggest any hard-and-fast “rule.” For some, full disclosure is imperative, for others, it’s best not to say anything, since the realities of the condition can be extremely depressing and may seem hopeless, and that may make things worse.
      3. The costs of care are staggering. Paid care, whether in the home or in a facility, for additional care is wildly expensive. To have someone in-home in Toronto, for example, to have people to provide 24-7 care is well over $100,000Cdn. Far beyond the reach of most. Keep in mind, though, that in-home care can often be procured through various means, many of which may be significantly less-expensive, per-hour, than the rates typically charged by a facility. I believe that for us, it was less expensive to modify and equip the home, to do all we could personally, and hire additional help in the home, keeping her there ’til the end, than any facility could’ve provided. And in our case, there was zero doubt to me that she benefited greatly by being home.
      4. The unpredictability is, indeed, hard — if not impossible — to deal with. But you’re doing an incredible thing, and I know you will continue to, no matter what your choices are in future. Your compassion will guide your choices.
      > Like you, I salute the tremendous service so many give, selflessly, to their loved ones, Frances. But I would also caution you, and all, to make sure that you are, in fact, able to provide the care needed, without catastrophic harm to your own health — it may be heartbreaking to place your loved one out of the home, but it may be heart-saving to do so, which will allow you to continue to care in the best, and most effective and impactful ways possible.
      > Strength to you! Timothy Hudson

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  • April 29, 2018 at 7:25 pm
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    I have known that I have Lewy Body since Dec 2014 when I forced my HR to get me into a neurologist ASAP after the GP said he didn’t have a diagnosis (big ten school with huge hospital). The very next day I saw the neurologist who confirmed Lewy Body. I think that early diagnosis and Meds and alternative eastern Meds and organic food have slowed the progress. In fact, my cognition has improved. I can check everything in stage 1 and about 1/2 if stage 2. The Parkinson symptoms are taking hold. I suspect I will get to 6 years instead of 7 because I don’t want allow nature to take its course as much as legally possible.

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    • April 29, 2018 at 11:14 pm
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      Sounds like you’re doing all the right things, Vicki. I’d add that whatever exercise you can do will make a big difference. I am convinced that the extended period of good condition that my LO experienced had a great deal to do with daily activity. That, and extra hydration, calm, consistent environment, and appropriate socialization. Those things and what you’re doing already.
      > Here’s to you breaking some records for duration with quality of life! Strength to you. Timothy Hudson

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  • May 2, 2018 at 6:30 am
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    Hi my Dad is 75, he was diagnosed with Parkinsonisms in January 2018 after a fall, and then in March with Vascular and Parkinson’s. Now, last Friday he was diagnosed with Lewy Body Dementia, and I have looked at many pages in the last 5 days since diagnosis and believe Dad is in Stage 4, starting or declining into Stage 5. It is so hard! In last 4 months he has deteriorated and is now incapable doing what he could do 6 months ago. I’m so shocked and saddened by this all. I have moved him into nursing home as his care needs are greater then what I am capable of providing — but it breaks my heart, as at diagnosis they said there’s nothing they can do, and I’m not sure if Dad understands this. I’ve had to tell his brothers and sisters, my brothers and sisters, cousins etc. It’s heartbreaking! I feel sick constantly and just helpless as theres nothing I can do 🙁 I just cannot believe his decline in last 12 months, and the last 4 have happened so rapid its like its not even him 🙁

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    • May 9, 2018 at 1:26 am
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      That is tragic indeed. However, I would not just accept the doctors saying “there’s nothing they can do.” There may be nothing THOSE doctors can do, but I believe that in almost all cases, something can, indeed, be done to improve the quality of life of a person with LBD. It might be small, and almost imperceptible, but I hope you’ll be able to find that improvement, somehow. And even if medicine won’t do it, your presence and advocacy and companionship will make more difference than anything to your Dad.
      > Strength to you, Donna. Timothy Hudson

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    • May 9, 2018 at 7:49 pm
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      Hi Donna,
      I’m so sorry to hear about your Dad. I sounds like your father is declining quickly which must be very hard on you, but the alternative is to see him not be able to function as the years go by. My Dad is 92 and is still in an Independent Living apartment. He is unwilling to move into assisted living and at the moment, is on the down side of the rollercoaster. Unable to eat and is very agitated. By next week I suspect he’ll be better- This has been going on for years, three good weeks, one bad. I’m on my own as far as his care goes. I hope you know that you’re giving your father the gift of time and care. My dad lives in a really nice facility and I’m shocked that so many residents never get a visit from a relative or friend. I wish you and your father all the best in this journey and just know you’ll get through this. Take Care-

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  • May 7, 2018 at 3:10 pm
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    My mother has recently been diagnosed with LB following at least two years of memory loss, hallucinations and delusions etc. Sadly, my brother, who lives 150 miles away, had kept telling her there was nothing wrong and she should ignore my attempts to take her to appointments. She has been absolutely vile to me with unbelievably vitriolic comments, and some attempts at physical harm towards me. She has delusions about me breaking into the house every night, stealing her keys and locking her in, stealing her money etc. It reached the point that I haven’t been able to visit for the last three weeks (I was her carer up until this point). I have now found she has blocked me from speaking to any of the professionals involved (with my brothers knowledge and support) and although I wanted a ‘way back in,’ two of the professionals have told me to back off completely as the delusions will not improve, as they are now firmly implanted. I’ve not seen this sort of advice anywhere on this thread and wondered if it was common?

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    • May 9, 2018 at 1:23 am
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      Very sorry, Jilly, what a horrible situation made worse by what appears to be ignorance on the part of other family members. Sadly, that’s not uncommon, for various reasons.
      > As for the delusions “now firmly implanted,” that sounds like nonsense to me. In my personal experience, as a carer, not a medical professional, no delusion is forever, or certainly none I remember in all my dealings. However, if the delusion fed and fuelled, I would expect its flames to last much longer.
      > Hopefully, in time, things will progress and this will no longer be an issue. And if you were her carer before, it is likely you will be again. It takes a rare, and extremely special person to care for a loved one with LBD for a long time, and it seems quite plausible that a distant family member will not “step up” to this challenge, or not for long. Especially, one who is a denier.
      > Here’s to a change for the better. Strength to you! Timothy Hudson

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      • May 15, 2018 at 7:12 pm
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        Thank you for a positive statement. X

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  • May 27, 2018 at 2:28 am
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    My husband’s father recently died of complications related to LBD. As I think back on his life, I remember symptoms from years ago that we didn’t understand. I realize now that they were early signs of LBD.

    My husband has some health challenges and I can’t help but wonder if they’re also early indicators of LBD; specifically, insomnia, occasional tremors, fatigue, lightheadedness, lack of focus, and ED. I’m wondering if it’s helpful to say anything/consult a neurologist at this point or if I should keep watching and let him enjoy life. He’s 53 and our youngest is 9. If you were in my shoes, what else would you do now to prepare? Long-term care insurance? Financial preparation? It’s possible that I’m worried over nothing but I see many similarities between my husband’s health and his Dad’s.

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    • May 28, 2018 at 1:23 am
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      Hi Julie: At this point, I wouldn’t worry about LBD from the things you mention — they could be from so very many things, especially insufficient B12, vascular or pulmonary issues, etc. I would still raise these issues with his GP, but without attributing it to Lewy Body Dementia. One of the risks is that when one has dealt with a very difficult, traumatic condition like this, it is natural to begin attributing individual symptoms to be a sign of the development of the condition in others. But letting a well-informed professional investigate what it may be is worthwhile, without “leading” them in a particular direction, unless you feel the issues are not being dealt with appropriately.
      > I hope it never turns into dementia with Lewy Bodies — for everyone’s sake.
      > Strength and clarity to you! Timothy Hudson

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    • June 2, 2018 at 11:32 am
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      Hi Julie,
      I read your email and I know how scary this must be for you. My father has LBD- but it’s my father, not any link to my husband. However my husband’s father and his 2 uncles (his fathers brothers) suffered from Parkinson’s Disease. Just the fact that you’ve observed a loved one with LBD, I’m sure you are much more aware of any “different” behaviors from your husband. My husband is 61 and I’ve asked him to tell his doctor about his memory issues, confusion, apathy, and changes in his speech fluidity. He refuses to address any of it and says I’m making something out of nothing. Since you and I are aware of how terrible dementia can be having observed someone with it, I think we’re more aware of the signs to look for. It sounds like your husband is listening to your concerns. I hope these issues turn out to be something other than dementia that can be corrected quickly . Take Care!

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