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Hello to all dealing with a loved one with this crippling disease.

I have been watching my friend and mentor diagnosed with this disease at 62. Her mother also had this disease in 1991 and they didn't know what it was for a very long time. In my girlfriend's case because her mother had it they were aware of it but couldn't do anything for her. All the medications that she's been on have been terrible. Even knowing that her mother had Lewy bodies dementia her Dr gave her medication for Alzheimer's, which she had a terrible reaction to.

My friend was a huge advocate of health. She is a vegetarian, and grew her own food. She never took medications before this, only herbs. She taught me everything I know about health. To watch her rapidly decline is so hard and so unbelievable. She is now in a nursing home specifically for memory impaired. They have her on the medication Seroquel now, but they have tried many medications that do not work. I stayed overnight with her when they transferred her to a new facility that was closer to her friends so people could visit. It was so sad to watch her, she doesn't sleep at night, she only hallucinates constantly, and that has now become her reality. I think that bothers me the worst, that she is suffering in these hallucinations.

When I first arrived there I took her for a ride in the car, that was the only time she was quiet. I think I actually saw a little glimpse of my friend for just a few minutes. After we went back to the nursing home she slipped back into her hallucinations.

I did have some luck in the very beginning with something that was compounded in a compound pharmacy. It is called Piracetam and Gycerophosphecholine. I saw the most positive changes when she took that. Since then the FDA in America has taken Piracetam off the market. They gave the excuse that it was being sold over the counter and was not a natural substance, but now you can't even get a prescription. So if you are reading this in another country, research this. My friend went from babbling to waking up one morning and saying "I'm back" and having conversations with me again. This worked for several months, but because I don't live where my friend does I'm not sure if she ran out of the medication or if it stopped working, but when anyone is going through this several months can be so beneficial. (This was in the early onset when she was living on her own, with someone checking on her.)

I just wanted to share this information in case anyone wanted to try this who could actually get it.

Blessings KSS

I just heard on the TV that Robin Williams had Lewy body. My husband died with lewy body 2 and a half years ago and tonight it is all there with me again. I have read a number of the letters written from those with loved ones with this terrible disease and I feel how their hearts ache. I can never forget our days and nights of confusion and fear. L was a kind sweet man and I know he would never have wanted the life he was dealt but that is not our choice. I am grateful that I was strong and able to care for him nearly until the end but for those who cannot they must find caregivers to help them. I had the support of friends and family but even then most of the care falls on you. I pray for all of you out there going through this.

B

I lost my precious father to LB this past January. I read your journal many times while my Dad was in the last year plus of his struggle with LB and many tears fell as I also saw the things occur sometimes exactly as you wrote in your sweet Mother's journal. It was a blessing to have the journal confirm and help prepare, even though you are never prepared, as the disease progressed to take my real Dad further and further from me. The first time I read it and questioned how far along he was with the LB, but as I began to recognize many of the same symptoms you shared, I painfully realized my Dad was traveling down that same difficult path of this terrible degenerating disease.

To encourage families as they deal with LB, I now can say that it is so important to get assistance so you, as the spouse or family members, can have breaks so you are showing patience and kindness to your loved one as they worsen. I saw so many times my Mom, the main caregiver, lose her patience with my Dad and at times he was so confused as to why she was not speaking kindly to him, it can bring more confusion to the patient, which is not a good thing. Over and over we discussed that he was not always there and we had to remember that to honor and love him even through the very tough times that were occurring, he would of never wanted to hurt us ... it is something that is very difficult to communicate how difficult it is to see a loving intelligent father slowly drift away into another person which he would of not admired ... I longed for and loved the times when he was all there and we simply shared a smile or one of his great winks, a brief moment of the way it used to be. Now, these moments are so greatly cherished in my memory. Cherish those moments as they will be the memories that keep him alive in your hearts and minds once he is gone into eternity.

My prayer is that family members realize the passing of this precious life so quickly and enjoy their time together — when it is over it is much more difficult than I ever imagined it to be, the grieving is sometimes so intense. My hope in Jesus Christ is my hope in knowing that someday I will again get to love on my Dad once again. I never would have been able to deal with his LB without my faith which led me through it.

Your journal helped me and I thank you for spending the time to write it and hopefully through the writing your grieving brought more of the past lovely memories than the hard difficulties of the disease.

VKZ

Our mother died well over two years ago after battling Lewy Body Dementia (LBD) for about 5 years or so. (The onset is never clear, until it hits you in the face.) I started reading two of the entries in the journal and then had to stop because I was crying uncontrollably — every word brought me back to the pain and suffering that she went through and we, likewise, with her. By the time she had worsened, we (my 3 sisters and I) were all taking anti-depressants to help us deal with what can only be described as HELL on earth. By far one of the worst illnesses to end your years with.

You may ask why I was looking at LBD on the Internet since it's already over two years since my Mom passed. Well, I was looking, out of sheer panic and fear, to see just how hereditary this illness was, since every time I forget something or do something "senior moment like" I found myself thinking and hoping my mind was OK. To my relief, it stated that LBD was seldom hereditary.

As you all say, there is only one way to do things with LBD: get them on the right medications, understand the symptoms, and give as much love and understanding as is humanly possible. One has to be unbelievably strong to spare them the immense pain and heartbreak you are going through trying to deal with their illness.

So to all of you that have been through and mostly those of you who are still going through LBD with a loved one, be strong. It's not easy but what choice do we have? Make your loved one as comfortable as possible — good care givers are vital (expensive, but vital).

My thoughts and prayers are with you.

I have been very touched this evening reading many of the journals from caretakers of LBD patients. I am writing this to let people know that I feel early detection of my husband's dementia was important. I took him to our family doctor the morning after he had his first hallucination (a violent one) and he started him on Aricept and when we saw a neurologist, he was also put on Namenda. Three months after the first hallucination and weeks of being very confused, getting lost easily at home and outside, his mental state improved dramatically. His memory is not too good at times, but in most other respects, he is 'normal'. He is taking PT now to improve his gait. In other words, I have not 'lost him'. He is still my 'J'.

I feel the early intervention with the drugs Aricept and Namenda have made the difference. He has had no side effects except probably constipation, which we seem to be handling with lots of fiber and Metamucil. I hope this will give others hope who are just starting down this road. My husband is 84 and this started a year and a half ago. He is still a joy to be with and tho slowing down physically (rests alot), we do pretty much what we want to ... eat out, go to the mall, shop, watch TV (sports and movies mainly). How long this will continue, I don't know, but I feel very blessed that the drugs available now have been so effective for my husband. Again, don't delay starting the available medicine and I hope they will work for more people.

My daughter, SC, has passed on to me your link and I read, both with interest and compassion, your experience with Lewy Body Disease. I know that S has also passed on to you her comments in relation to her personal experience that we are currently living with her nan/my mum. I wrote a short while ago a poem which I wrote with how I was feeling about this illness and I thought I would share this with you.

MF

Why do people have to suffer?
In this cruel thing we call life
To endure suffering and misery
That cuts you like a knife

My poor mum is slowly dying
I watch her fade each day
Her body grows so weary
And what's in her mind? Who can say?

Her memories are fading
She has but just a few
I try to make her happy
What else is there to do?

She married my dad when they were young
They loved each other so
But now she cannot recall him
Why did this memory have to go?

I know people have to die
Some young and others old
But seeing her with dementia
Not knowing what she's told

I just pray for her each day
To have this illness end
Some might think I'm wicked
I just want this torture to end!

My memories are tucked away
Along with those of my lovely dad
And when they are back together
My heart will be so glad

My husband had Lewy Bodies Disease. He passed away 10 years ago, I was his caregiver for seven years before his death. I have written a book, a memoir entitled "Have The Last Dance With Me". A synopsis of the book: "How did those little moments of forgetfulness in her husband, those lapses in decision-making over the most normal of things in life, turn into a full-blown, debilitating neurological disease? Everything seemed so perfect for Herman Fichtner; highly educated, a successful career. Navy fighter pilot with a loving wife and family. He was living what seemed to be an ideal life in a picturesque New England town. Then something changed. No one knows exactly when it happened, but his wife began having nagging thoughts in the back of her mind that something just wasn't right with Herm. Thoughts of him "not being right" turned out to be true. What followed was a downward spiral of mental acuity that the medical community could not diagnose, much less offer any real help or hope. This is a story of a wife's struggle to make sense of how this perfect life could unravel before her eyes, and how she tried to piece it back together with humor, love, compassion and fierce determination to find out what happened to the man she loved."

Book is available through stores throughout the US (Barnes and Noble, Borders, Amazon, etc) by:

My name is KH and my father has Lewy Body Dementia. He is progressing rapidly and I am in a state of shock and grief. Now I know why there have been personality changes going on for several years, but it took this long to get an accurate diagnosis. There has also been a rift in our family which has added to the pain. Here is what I wrote the other night about my dad. I thought others could identify with how I feel too.

With warm regards,

KH

By a daughter lost

Today is finished and my work is through
And then I remember there is no "you"
All day I toil with sweat at my brow
To help me forget how you are now

And as I lay me down to sleep
My heart aches with a pain so deep
When I think of you sitting on the chair
Hardly caring that I was there

I tried to hug you — it was a mistake
You said "Don't crowd me get away!"
I am realizing now there's things I can't do
I am learning how to treat this "new you"

You picked up invisible paper off the floor
And spoke with no one at your door
I held your hand — it was cold and dry
You didn't hold me back — I didn't know why

I spoke to you about everyday affairs
But your thoughts floated, lost, through the room's stale air
You asked to go home, I wish I could
Carry you away where it is warm and good

A place where you are not scared or afraid
Where you can dream on a bed freshly made
And wake with no pain or fear in your heart
A place where we wouldn't be so far apart

My heart is breaking for you tonite
As I lay my head down in the white starlight
I pray you sleep deep and well
I pray for your release from this terrible hell

And someday you will wake in a bright loving place
And you will gaze up at God's loving face
A warmth will surround you and then you will go
And heaven is a place you will know

My precious mother passed away from LBD on January 29, 2008. I am so lucky to have had a long lucid period with her only a week before she passed. I cherish the memory of that afternoon so much.

I am writing to tell you and your readers about a search engine called goodsearch.com. It is just like any of the other, better-known search engines and provides the same search results. However, it is advertiser-driven and every time you do a search, it will donate a penny to a charity of your choice (as long as it is on their approved charity list.) The Lewy Body Dementia Association is on their list, as is the Michael J. Fox Foundation for Parkinson's Research.

These are my two designated charities. I encourage all your readers to switch to this search engine. All of our pennies can add up to better treatments or, I desperately hope, a cure!

Thanks for this wonderful web site and my sincere condolences with regard to your mother and father.

My father was prescribed Celexa, a mild antidepressant, even though he wasn't depressed. The doctor had read a trial study that claimed Celexa worked in some Alzheimer's/Dementia patients. In the study, Celexa worked well along with Aricept to improve memory, cognitive functioning, and the areas of the brain that control speech/language understanding and output. He thought it was worth a try.

My father has taken it now for a year and a half. After starting the Celexa, with no other "new" drugs, I did notice a marked difference in my father. He was able to read the paper and remember much of what he read. Listening to the news, he'd comment on something (pet peeves... you know how it goes!!) and still remember it several days later. He was also able to speak clearer than he had for some time. The clear speech continued until about 2 weeks ago when he became ill with pneumonia. Hopefully, he will return to what he was before he got sick. He spoke well today and I'm optimistic but guarded.

Dad did not have depression, nor did he exhibit any depressive symptoms. He did experience a bout of depression back in the late 70's, early 80's after my mom passed on and his brother died. No other history of depression. I mention that fact because if a person has a history of depression, Celexa may not be the best drug. Drugs like Prozac are much stronger but my father's primary care doctor does not think they are good drugs for elderly people and/or people with signs of dementia from any source. I asked him about the Prozac when he ordered Celexa because I know much about the side effects of Prozac and was afraid that would happen with the Celexa. He reassured me, spoke to me about the differences and gave me contacts so I could get more technical information.

If it works for one other person...

Our sincerest condolences on your mother's passing. Our mother left us the same way you described one year ago. The road was long and painful but the lessons and last year were treasured forever. We have been keeping track of your family and just wanted to say how sorry my husband and I are, and that we wish you the best in the years ahead. Thank you for the journal. Some days, it was the only lifeline we had.

Keep strong.

Thank you for your web site. I just wanted to pass on some information that may be helpful to someone else.

My mother has Lewy body disease. I moved her from another state to be near me 3 years ago. When I took her to the doctor, she had a fungus in her mouth. The doctor put her on Diflucan (an anti-fungal drug). The fungus cleared up. But we noticed a marked improvement in her other symptoms. Instead of a blank stare, she made eye contact and seemed much more connected cognitively. She quit drooling. She was walking better.

I asked the dr. if she could go back on it for a week. We went back and forth 5 times and finally the dr. agreed to leave her on it indefinitely. It can cause liver problems so we have liver function tests done every 6 months and the results continue to be excellent. ...

... I noted that your mother slides out of a wheelchair because of body rigidity. My wife would get body rigidity on occasion and we eventually corrected that problem by stopping the Aricept and another medication called Risperdal which was prescribed to reduce hallucinations (worked well in her case). We decided to stop both and while she is still stiff through her trunk, she is able to sit comfortably in a wheelchair all day. She developed a problem of leaning forward in her chair creating the danger of overturning the chair. It was solved by getting a harness which fastens to the chair and holds her shoulder back without binding them.

One other device that you may not be familiar with is the Merry Walker Shower Seat. It's much better than the conventional shower chair because it provides protection against falling. ...

My husband has Lewy body disease too. We have solved the constipation problem by giving senna with each meal and a suppository after lunch. The suppository is The Magic Bullet. We order it online at Allegro Medical. We rarely have an accident and it works in 15 to 20 min. My husband still walks with help. He started about 6 years ago with LBD and he is 66 now.

I understand what you are going through. I lost my 30-year-old son 9 years ago and this is far worse to live through.

Keep your chin up.

I read your last entries to your journal and see you have gotten some information on hospice. I hope the information I have is helpful and if you have any questions, please let me know.

Thanks to your website, I learned a great deal to help my grandfather's doctors to see what was really going on and to properly diagnose him. He died a little over a year ago and his death is still very hard for me. My husband and I had the pleasure and privilege to care for him the last year and a half of his life and to be there when he died. He died at home in hospice. I learned that the family doctor calls in the orders for hospice if they think the life of the patient is less than six months to live. Also, some patients go into hospice and then come out if things improve. A nurse will come to evaluate the situation and set up all the necessary things such as people to bathe and dress the patient and all other needs. Unfortunately my grandfather broke his arm and was in severe pain, but being at home in hospice I was able to give him oral liquid pain medication more often than if he were in a nursing home.

Thank you for all the information you provide. It helped us to know what was going on and how to deal with it (especially the hallucinations which lasted sometimes for three days straight). I know how hard things are for you and others dealing with this. I wish I lived close so I could help you out and give you some respite care. Thank you again.

Hello. My name is MG and I am writing because my great-grandmother was diagnosed with this disease. She is 87 and what gets me is that she lived a very healthy life. But when my grandmother died (her daughter) she just lost it. She went downhill. She has 9 kids and she was always good with names and everything. Now she can sometimes remember them and their kids and so on. She lost her husband many years ago and now she is saying she married someone else and had twins. It's so sad what my great-grandmother is going through. I read your journal and I cried and cried. I just want to know what to expect to happen to her? I also read some other stories. I just don't want her to suffer so much. I just wish that I can take her place. I am 23 and I am a college student. I am going to become a Medical Researcher so that I can figure out a cure for this horrible disease.

Thank you so much for your time and I am looking forward to reading more.

I wanted to write you and tell you that I have been visiting your site since 2002. My father has Lewy Body Dementia. Because my father and I (and the rest of my siblings) did not speak for many years, this disease hit a little harder than it otherwise might, if that is even imaginable. I love my father very much but we had many differences. My heart has ached in a way that I cannot find words for and so I have been unable to share my story with anyone, but I wanted you to know that I come to your site regularly for updates and basically to look in on your family. Your site has given me a wealth of knowledge and information that it seemed I could not get anywhere else. It gave me strength when I need it so badly as I, alone, visit and watch the progress of this evil disease. I have found myself educating family (as they want updates but do not want to see him), nurses, doctors and care providers from what I have learned over the years and it still surprises me that even today a lot of medical professionals do not know nearly enough about this horrid disease. I thank you for your updates and, as I send you my thoughts and prayers, I just wanted to say, "Thank you for your strength and your generosity."

My mother entered a nursing home in September 1999 after having been diagnosed with Lewy Body by the Sanders-Brown Center on Aging in Lexington, KY. They are supposed to be the world authority on Alzheimer's disease and other dementias. They knew the name of the disease, but gave me very little information about it. I had to check the Internet and Mayo Clinic for my immediate information.

It seems that we have been at this for about the same time span. My Mother was 92 years old in Dec. 2004. Your mother is much younger. We have experienced almost all the same problems as the disease progresses.

About a year ago, the nursing home replaced all its old mattresses with Tempurpedic mattresses. It is the memory foam mattress which forms to the body. It has done wonders for Mother's skin tears and bed sores. It is quite expensive as mattresses go, however, there are several out there that are much cheaper and that work on the same concept. Have you investigated such a mattress? Also, I bought a reconditioned wheelchair for about $250. I'm sure you probably have put more than that into the one you rent, because we rented before and still had to pay a small amount in addition to Medicare's help.

Mother's doctor has agreed that the medicines originally tried to combat Lewy Body Disease were no longer necessary since they were having very little effect. Mother now takes only laxatives and Tylenol for pain. Her body is rigid and sounds quite like your Mother.

My admiration goes out to you for caring for your Mother in your home. I am the only care giver and just couldn't handle it myself.

May God Bless you and your family ... and especially your Mother.

I am so glad you printed your story. It so much matches my story. I would like to suggest a "Geri chair." My husband is in a nursing home and they use the lift to place him in and out of the Geri chair and he spends a couple hours in it each day. If you are not familiar with it, it is like a recliner on wheels. He can be set upright for meals, however he reclines most of the time he is in it. With it he can be taken out of his room and even outside on a nice day.

Thanks again for putting into words what I have I lived. My husband has not been able to speak or walk for about 5 years now. He eventually had to have all his teeth pulled because they could not care for them properly (he would close his mouth and not let them clean them). I too feel like I am in limbo thinking this can't go on much longer but somehow it does.

I haven't finished reading the journal, but I wanted to let you know that your Aricept experience mirrors my experience with my husband. It was catastrophic, the two times we tried it. It may be great for some, but I consider it a nightmare drug.

Hospice can help with terminal symptom control, assist with bathing and personal care, nurses on call 24 hours per day, and also provide equipment necessary to care for a terminal patient at home. Find Hospice in your local yellow pages or ask your Dr. about hospice. Contrary to public belief, hospice is for anyone with a life threatening disease.

Thank you for putting the lewybodyjournal online. My grandmother is 102 years old and has been in a convalescent hospital for the past year. I am her primary responsible party and visit her daily, so I have seen her progression in what is obviously Lewy Body Disease. I also realize that she has been presenting symptoms for the past three or four years. Believe it or not, she was able to continue living at home alone until just after she turned 101, started falling frequently and broke a wrist.

I have been researching LBD after reading a brief bit about it in a book about Alzheimer's Disease. Most of the articles I have found have been very technical, which will be great to share with Grandma's doctor, but your web site has been invaluable. I have printed several pages to share with my uncle, Grandma's only living child. At the age of 83, he sometimes has a hard time understanding medical things.

One thing I would like to share with you regarding the difficulty in swallowing. Grandma just recently started having that problem. A speech therapist was recommended to make an evaluation and suggestions of how to alleviate the situation. For thin liquids, a thickener was recommended to make it easier to swallow. Her food is now pureed instead of chopped finely because the small bits can get stuck in the esophagus. I found the thickener (Thicken-Up) at our local Walgreen's drugstore. It is a tasteless white powder that looks like powdered laundry detergent. It is amazing in how much it has helped Grandma to drink liquids and she does not notice the thickness of the liquids at all. She only chokes when we don't get the liquid thick enough now. The pureed foods are much easier to swallow, too.

If you think it worthwhile, please consider asking for a speech therapist evaluation. It might be very helpful.

Thank you again for your fascinating journal and web site. I wish the best for your mother.

It's amazing how similar your Mother's progression is to my mother's progression.

This spring we started her on 5mg of Namenda, a drug to help with advanced dementia. We wait a month before increasing the dose, watch for side effects & are eventually moving to the recommended amount. She is also on Aricept.

Her ability to swallow & eat has greatly improved. I've even had them reduce her Sinemet. (too many side effects) The side effects of Namenda are nausea & vomiting, but I see no sign of those. I, too, have worried about the feeding tube. Her living will says no feeding tube, but that will be very hard. For now, the Namenda solves our problem.

Take care,

My mother has been bedridden for 5+ years with Lewy Body disease. Your story sounds very similar to ours. If I might suggest, my mother is on an air mattress with chambers and a pump. The pump moves air throughout the chambers and prevents pressure from being on any particular area for any long periods of time. Aside from aides that come Mon-Sat to help bathe my mother, and private duty aides my father employs 3 days per week, he has been the sole care giver of my mother at home. He does also get 5 hours per week from the Area Agency for the Aging.

...My father was awarded with a "Care Giver of the Year Award" recently. He humbly accepted the award telling the group that my mother deserved the award more than he for putting up with him for 55 years :-). ...he has been Mom's caregiver for 38 years. Mom has had poor health since my birth 38 years ago, and that is the reason they stated that time frame. We haveonly known of the Lewy Body disease since 1999, but suspect it has been at the root of many of her health issues long before the diagnosis. Like with "Jan" who wrote to you, my mother started with Parkinson like symptoms. ...

My best to you and your family.

My husband has been diagnosed with Lewy Body Disease as of last Friday. We have lived with the diagnosis of Parkinson's Disease for 9 years, but about 3 years ago my husband started hallucinating and having problems with dementia and it has progressively gotten worse. It is so hard on me, because I have no family support. I recently had to resign from my job, because I can not handle both work and home duties anymore. I had a full time care-giver while I was at work and would relieve him when I returned home. It is too expensive now for me to have the care-giver here full time, since I am not working anymore, so now he comes twice a week for 4 hours on each day. I am so worn down, but no one can understand, since they don't see my husband 24 hours a day and usually when they see him, he appears to be cognitive and okay. It is hard to explain to anyone what is going on. I am happy to finally know that I am not the crazy one, as everyone else seems to think, since my husband appears to be okay to them, with the exception of his Parkinson's-like behaviors. On the other hand I am very sad to see what is on down the line because it is already getting hard for me to manage without help and I don't know how we can afford the help here to live-in or to change shifts. I am talking to a social worker this week. If you can help me with any information on where to turn for assistance also, I would much appreciate it. I live in California, so it may be different than where you live, but any advice would sure be helpful.

I want to thank you for this journal, it has helped somewhat to know what to expect, since I have never heard of this disease. My husband surely fits all the symptoms. I have been able to identify with much of what you have written. My husband was also a teacher and very active. He taught 7th and 8th grade history.

This is awesome. I read every word and this should be required reading for anyone dealing with this monster. My fight ended on July 24 with the death of my beloved husband. Your story was mine, ours, put in print. Thank you so much for sharing and thinking of others. My thoughts and prayers are with you as you walk the rest of the way.