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

80 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
  • 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
  • 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.

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    • 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.

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    • 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.

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        • 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
  • 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

      Reply
  • 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.

    Reply
    • 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.

      Reply
      • 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.

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  • 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.

      Reply

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