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 introduction 10/12 
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Joined: Wed Oct 03, 2012 3:32 pm
Posts: 3
Post introduction 10/12
hi-
my 70 year old father is newly diagnosed with lbd. in retrospect he has been having memory issues for at least 3 years. he has a long standing sleep disorder. his diagnosis was made when he recently had majoyr surgery and had dellusions and hallucinations for nearly a week after surgery. he is now on geodon and appears to be doing better. i am the oldest child and am a medical professional. i had never heard of lbd. needless to say i am very sad about this diagnosisi. his wife is in complete denial about lbd and what it means. they are calling it "his condition" . our family is complicated and i dont have a good relationship with her to begin with and am finding myself very angry about the way she is dealing or should i say not dealing with this.
i have no idea where he is on the spectrum of early vs late or middle in the process. his buddy who is a fp doctor seems to think he will live for many years . from what i am reading here that is unlikely.
glad i found this forum.


Wed Oct 03, 2012 4:17 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3345
Location: Vermont
Post Re: introduction 10/12
Sorry for your need to be here. There seem to be many anecdotal examples of people having surgery and then suddenly have an onset of dementia symptoms after the surgery.

I'd suggest you do a lot of reading here and in books about LBD. Having info. about the disease, meds, the experiences of others, etc. will help you cope and get vital data you may need to help your LO. Stop back any time. This is a very supportive and helpful environment. Take care and welcome to the forum. Lynn

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Lynn, daughter of 89 year old dad dx with possiblity of LBD, CBD, PSP, FTD, ALS, Vascular Dementia, AD, etc., died Nov. 30, 2010 after living in ALF for 18 months.


Wed Oct 03, 2012 8:30 pm
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Joined: Mon Feb 14, 2011 10:22 pm
Posts: 190
Location: Portland, Or
Post Re: introduction 10/12
Hi and welcome to the forums. My mom was diagnosed with LBD in Feb 2011, after displaying worrisome symptoms during a course of Shingles that started in July 2010. She is still doing remarkably well most of the time. However, illness (UTI's) and medication changes can put her in an incredibly fast downward spiral but once the problem is treated she recovers rapidly and comes back to "baseline" which I think is probably middle stage of this disease. Although we have been knowingly dealing with the disease for the past 2 years, in retrospect I believe she was displaying symptoms as much as 9 years ago when she had heart bypass surgery. She was having incredible hallucinations and delusions while she was in the hospital, so much so that one of my brothers would sit with her every night because we were afraid for her safety. Again in Dec 2006 after she had ankle surgery she had the same symptoms. During both hospitalizations she would call all of her children and beg us to come and get her. At the time we chalked it up to her being a "lightweight" as far as pain medication, but in retrospect I believe that these were symptoms of LBD, she just wasn't displaying any other symptoms, She also has sleep apnea and does a lot of thrashing around in her sleep and has for 20 plus years.
As I'm sure you've heard, this disease is different for every person, but one thing we all have in common is the "roller coaster" effect of it. There are so many ups and downs and twists and turns, so be prepared. Most of the time though, in our case, things run fairly smoothly. Mom was telling me yesterday that her memory about the past is great ( yesterday she was working on a list of the presidents in chronologicall order that have been in office since she was born), her short term memory is terrible.
A book that I've found to be extremely helpful is the Whitworths "A Caregivers Guide to Lewy Body Dementia". It has answered almost all of my questions and I refer back to it often.
Didn't mean to make this so long. I got lots of sleep last night for a change and the thoughts went flying! :lol:
Ellen

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Ellen 59, caregiver for mom Marion 81,dx LBD Feb 2011


Thu Oct 04, 2012 12:48 pm
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Joined: Wed Oct 03, 2012 3:32 pm
Posts: 3
Post Re: introduction 10/12
thanks for the welcome. ellen i also live in portland so its nice to know there are others in the area.

my situation may be more complicated than some. i am the oldest of my dads 5 children ( I am 51). he has 2 teen age kids by his wife #3. she is only a few years older than i am. to say the relationship is complicated will have to do. i don't see my dad that much although he lives not far from me. i have 2 school age kids and work full time . so the reality is that i dont really know what his true baseline is. when i was informed of his situation after surgery, it sounded very dire. now that he is on geodon and in rehab he seems not so bad. i have visited every few days since the diagnosis about a week ago. his wife is not open to having me have some regular time with my dad once he gets home- i had offered a weekly day. i fear that she will block me from spending time with him. i feel that she is in deep denial about the reality of this illness, but on the other hand am i catastrophizing it?

do people live for years in a relatively stable state once they get the diagnosis? i am sure it is different for each person, but is there a general trend? how do you decide which stage a person is in?

as a medical profession i would rather hear the info straight from the medical folks and i hope i will be included in the discharge planning session before he goes home from rehab, but i am not confident i will be invited.

i am learning a lot here.
chris


Thu Oct 04, 2012 10:02 pm
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Joined: Wed Feb 15, 2012 11:39 am
Posts: 98
Location: Victorville, CA
Post Re: introduction 10/12
Chris,
I'm sorry you have to experience this. Due to fluctuating cognition, which is common in LBD, you may have trouble convincing anyone that being involved in his life is important. My only suggestion, if he hasn't been released from the hospital yet, is to talk with him about your being involved. He can sign something giving you permission to be involved in his medical treatment and decisions. It's best to get something as soon as possible. Lewy is unpredictable. I've read a lot so far, not as much as many I know, but in everything the prognosis goes from 20 years to 7 and all along that range. I'm not sure if the 20 years means from first possible symptom, like REM Sleep Behavior Disorder, or what. My husband exhibited symptoms of diminished reasoning and cognition, problems with vision, around 2006/2007 though he's had sleep apnea and REM for years. He's not a doctor person, took no meds at that time, didn't even have a physician. I mentioned some of my concerns to him and he'd get mad. I finally convinced him to see a doctor for a check-up. He was fine in the doctor's office, blood work showed high cholesterol, and he was given Crestor. That's it. Not until 2010 was I able to convince him to see a neurologist. Then the fun began. He now sees a specialist at UCLA and has a neurologist and family care physician where I live that know about LBD, but aren't all that familiar with it. I'm trying to change that, one article at a time. My husband has two sons and I have three. He is 13 years older than I. I am blessed that we have all gotten on well from the beginning. They try to be more involved but all have jobs and a couple live far away. Being here and more engaged is difficult for them. I do wish they were closer. Anyway, John's decline has been gradual but existant -- not related to "consistent." This disease is indeed fluctuating in everyway. I pray you can get your father to do whatever is necessary to ensure your involvement. Believe me, his current wife will welcome it as times goes on.

All the best to you and please keep in touch,
Terri

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Terri, spouse of John, officially DX dementia with Lewy Bodies, June, 2012, cognitive symptoms since 2007, active dreams for years before that.


Sun Oct 07, 2012 9:47 am
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Joined: Wed May 02, 2012 8:26 pm
Posts: 55
Post Re: introduction 10/12
I can certainly relate to how difficult it is for the caregiver when family lives so far away. At one point I thought about moving closer to family but I truly believe the trip, move, and changes would be devastating for my husband. I don't think he could survive such a change in his life. We have 7 children, 4 on my husband's side and 3 on mine. Only one lives in Texas and he is about 150 miles away. He has become one of my husband's caregivers too and since he is self employed, he is able to assist me in this capacity. My husband was diagnosed in April of 2012 but certainly showed signs 2, 3 or more years before then. Right now he is doing well on his meds and in a more stable period, but I know with the way this disease fluctuates that could change any day or even any hour. I am fortunate that he is in a good humor 99.9% of the time and still displays the sense of humor he has always had. Perhaps not as quick on the uptake as in the past, but it is still there. I try my best to be patient and loving and for the most part succeed...it's hardest when I have not slept well and/or wake up way earlier than I need to. My prayers are with all of this. By the way I have found some very informative Utube's on Lewy Body. Probably you all have done the same but just in case I wanted to share that...I wish you all a blessed day.

Susieg

Susieg


Sun Oct 07, 2012 12:13 pm
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Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1978
Post Re: introduction 10/12
Hi Cb,
Welcome to the LBDA forums and I am sorry for your need but you will find it a welcome, helpful place to be !

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Irene Selak


Mon Oct 08, 2012 2:16 pm
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Joined: Sun Jun 24, 2007 5:35 pm
Posts: 344
Post Re: introduction 10/12
Chris, it sounds like your whole family is hurting. I hope you can find the help you need for your dad, yourself, and the rest of your family.
Take care,
Pat

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Pat Snyder, husband John, dx LBD 2007
Author of [i]Treasures in the Darkness: Extending Early Stage of LBD...[i][/i] [url]http://www.amazon.com/Treasures-Darkness-Extending-Alzheimers-Parkinsons/dp/1466428228/ref=sr_1_1?ie=UTF8&qid=1334092686&sr=8-1[/url]


Wed Oct 10, 2012 10:22 pm
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Joined: Wed Oct 03, 2012 3:32 pm
Posts: 3
Post Re: introduction 10/12
i appreciate the warm welcomes.
pat thank you for the book advise, i had already placed it in my" to buy basket "at amazon along with life in the balance. so i have ordered them both. i've been writing a bit as therapy for myself which is really helpful.
i have been trying to cut back at work for 9 months now and have gotten denied twice but his diagnosis gave me the umph to make one more attempt be heard that i REALLY need to work less. i had a meeting this week with someone very high up the ladder and ended up crying most of the meeting ( and i am not a cryer) i am not optimistic that i will be granted a reduction in hours since we have a new ceo that things everyone should be working full time. but i now know that i have done all i can.
i am still learning about lbd and trying to make sense of all that i am reading.
chris


Wed Oct 10, 2012 10:39 pm
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Joined: Sun Jun 24, 2007 5:35 pm
Posts: 344
Post Re: introduction 10/12
Chris, another good book is by Pauline Boss, called Loving Someone Who Has Dementia.

The Whitworth book will give you lots of facts, which sounds like what you would like as a medical person.

Mine deals with the beginning, when you get the diagnosis and are trying to glue your lives back together and get some sense of control again.

Take care,
Pat

_________________
Pat Snyder, husband John, dx LBD 2007
Author of [i]Treasures in the Darkness: Extending Early Stage of LBD...[i][/i] [url]http://www.amazon.com/Treasures-Darkness-Extending-Alzheimers-Parkinsons/dp/1466428228/ref=sr_1_1?ie=UTF8&qid=1334092686&sr=8-1[/url]


Thu Oct 11, 2012 5:04 pm
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Joined: Tue Jun 19, 2012 7:27 pm
Posts: 7
Post Re:Need advice
Hi, I am new and have been dealing with my husbands LBD diagnosis this year. He has been having problems for years. My big question right now is that for the most part he does very well and can function most days with some confusion. 6 months ago, there was one hallucination, a 8 foot person who was in the house with us during bad days. The last 2 weeks, every night the hallucinations are horrendous and the house if filled with people and he is up and down ALL night long. This is very sudden and a huge change. I had a doctor come to the house and take a look at him, the only other time he was like this, he was sick. We put him back on antibiotics and that seemed to help for a couple of days, but again it all started up the last 2 nights again while still taking the antibiotic. The house is filled with people nightly, he is a mess during the day and hallucinates at night, i finally get him to bed and he will sleep then for 8-10 hours.

I guess my question is: Can the hallucinations come on overnight like this: does this illness change this fast or should he be thorough checked out again too see if something else may be going on? He does have other medical problems and we have to use the VA for his care.

I guess I am just so confused on how the hallucinations went from zero to full blown in a 2 week period.

I am disabled myself and needless to say have not gotten much sleep in the last 2 weeks and am taking care of him alone now for over 1 year, but this new severe change has me wondering if anyone else has experienced the hallucinations portion happen this fast?

thank you
sue


Sun Oct 14, 2012 9:04 am
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: introduction 10/12
Hallucinations began abruptly with my husband, too, and 'people in the house' were the main feature.

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Pat [68] married to Derek [84] for 38 years; husband dx PDD/LBD 2005, probably began 2002 or earlier; late stage and in a SNF as of January 2011. Hospitalized 11/2/2013 and discharged to home Hospice. Passed away at home on 11/9/2013.


Sun Oct 14, 2012 9:59 am
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Joined: Wed May 02, 2012 8:26 pm
Posts: 55
Post Re: introduction 10/12
I'm so sorry that the situation is so difficult for both of you right now. My husband's hallucinations are being controlled with Seroquel and we have been able to get it through the VA. We have to travel over 100 miles to Dallas too but it is well worth it. Is your husband on any medication for the hallucinations. My heart goes out to you. I am in the process of reading Caregivers Guide to Lewy Body Dementia and have already read Treasures in the Dark. Both are excellent scources to turn to. I pray for all of us dealing with this disease because it is so heartbreaking for the LO and for us as caregivers.


Sun Oct 14, 2012 12:39 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3345
Location: Vermont
Post Re: introduction 10/12
My dad experienced overnight:
- almost total paralysis from the neck down
- inability to speak above a whisper
- hallucinations
- 100% incontinence
- extreme confusion about almost everything

He supposedly had no sign of infection, heart attack or recent stroke. Absolutely no signs of anything that could have caused all this, according to the ER and hospitalist, and no dx of what was wrong with him for the long haul. After 3 or 4 days in the hospital and 3 weeks in rehab he regained some ability to walk for a few weeks, was able to feed himself (but not dress himself) to some extent, very few hallucinations for the rest of his life, periods of lucidity, clear thinking and speaking. He never returned anywhere near to his former baseline. So yes, this stuff can happen all at once, and hopefully your LOs will not have all of these things happen at once, but it can happen, shocking as that seems.
Lynn

_________________
Lynn, daughter of 89 year old dad dx with possiblity of LBD, CBD, PSP, FTD, ALS, Vascular Dementia, AD, etc., died Nov. 30, 2010 after living in ALF for 18 months.


Sun Oct 14, 2012 7:24 pm
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Joined: Sat Jan 03, 2009 2:59 pm
Posts: 1978
Post Re: introduction 10/12
Sue,
Welcome to the LBDA forums, I am going to mention that you post in Behavior issue's area as I believe you may get more replies there !

Good Luck !

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Irene Selak


Sun Oct 14, 2012 9:52 pm
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