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 Sudden onset? 
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Joined: Fri Dec 22, 2006 10:55 pm
Posts: 4
Location: New York, father in Mass.
Post Sudden onset?
Hi,
My father had cataract surgery in Oct this year. He started hallucinating right after that. I live 250 miles away, so did not notice any previous symptoms, except for minor shuffling when he walks. He is 78 years old.
He had a CAT scan and MRI, both negative. He also suffers from glaucoma and high blood pressure, and has nightmares which he acts out.

The neurologist mentioned LBD in passing, and sent him for a REM sleep disorder test. It came back negative also. From reading this forum, it seems the diagnosis may be correct (nightmares, hallucinations, shuffling). However, he doesn't seem to have any cognitive problems (yet), other than sometimes believing the hallucinations. His vision is now better than before the surgery, but he cannot seem to put the written words together to be able read.

My questions:
Did the surgery cause this to accelerate, or come on so quickly?

Could LBD affect his ability to read?

What are the best medications? Generics hopefully. He tried Seroquel (low dose) for 30 days, but stopped due to it making him like a zombie.
His neuro wants to try several drugs, but most of them cost $400 for 30 pills, which is out of my parents reach.

His eye doctor cleared him for driving. Is this wise given the hallucinations, (which are most active in the evening)?

Thanks

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Cindy


Fri Dec 22, 2006 11:40 pm
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Joined: Tue Jun 06, 2006 10:57 am
Posts: 11
Location: Washington, DC
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Hi Cindy. I'm sorry to hear about your dad. We had the same expereince with my dad (now age 77) over three years ago (Oct 03) when he took flexoral for back trouble. Did your dad have any sedation or anesthesia with his surgery? That could be what sparked his sudden onset. Maybe others here could speak to the trauma of the procedure and how that may have brought on the symptoms.

My dad continued to have hallunications even after the flexoral wore off but he started taking aricept (in Mar 04) and it helped tremendously. It is expensive, but maybe others here know how to get it cheaper. I can't promise it will work for your father but if there's a way to try it, I suggest it.

My father was evaluated and accepted into an Alzheimer's Disease Research Center (ADRC) in Pittsburgh. I don't know if something like that could be an option, but you may want to look into it. http://www.nia.nih.gov/Alzheimers/Resea ... chCenters/ They might be able give you Aricpet samples to try for a month to see if it works. Also, they may have some other advice on meds.

When my dad was diagnosed, I did exactly what you're doing -- looking for info and reaching out. Continue to do it. You'll find what your family needs. There are lots of people here who know what you're going through.


Sat Dec 23, 2006 12:04 am
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Hi ,
I would like to second the thought of a research study, here is a web site to check on one in different area's.




http://www.alzheimers.org/clinicaltrials/search.asp
http://www.clinicaltrials.gov/


Sat Dec 23, 2006 12:11 am

Joined: Fri Dec 22, 2006 10:55 pm
Posts: 4
Location: New York, father in Mass.
Post 
Thankyou Irene and kjmcg,

I looked up the trial sites, but couldn't find anything useful at the moment.

I need to know more about the progression of LBD. My father has days where he doesn't have any hallucinations , then really bad days where they are constant. He sees extra people around the house, and destruction outside of the house (cars destroyed, toolshed trashed, etc.).

My mother is holding up pretty well, as the sole caregiver. But she is in denial that anything is really wrong, since there has not been an offficial diagnosis. She feels they wil just stop one day.

How can I help her be prepared for the future?

Thanks,
Cindy


Sat Dec 23, 2006 6:11 pm
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Hi Cindy,
I really don't think there is any way you can prepare for the future because this is one illness that the fluctuates so much and that is why your Dad kind of goes in and out it. From what I know life span can be from 5-7 yrs and that really depends on many factors such as age, health and so on.
Generally the cognitive and the motor problems appear within 1 yr of each other.

Here is something I found on a web site that might interest you, it came off a caregivers site.


(Movement and motor problems occur in later stages for 70% of persons with DLB. But for 30% of DLB patients and more commonly those that are older, Parkinson’s symptoms occur first, before dementia symptoms. In these individuals cognitive decline tends to start with depression or mild forgetfulness.)

Keep asking questions , we will try and give you answers! Good Luck!


Sat Dec 23, 2006 10:55 pm

Joined: Fri Dec 22, 2006 10:55 pm
Posts: 4
Location: New York, father in Mass.
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Does anyone have any thoughts on travel? My parents always went to Florida in the winter. I know the estimated life span is 5-7 years from onset, but how long do we really have before it becomes impossible to travel?

My father had a pretty bad episode Thanksgiving night (all night long), that we thought was caused by all of the unusual activity. My family of 5 was staying with them, and we took them to my brothers for dinner.

We plan to stay in a hotel during our Christmas visit to cut down on some of the activity. Does this type of thing usually bring on problems?


Thanks, Cindy

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Cindy


Sun Dec 24, 2006 1:11 pm
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Joined: Sat Oct 28, 2006 5:34 pm
Posts: 40
Location: Ontario Canada
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Up until my Dad broke his hip, he lived on his own, did his own banking, shopping, cooking, laundry etc and belonged to numerous associations of which he was president of a few.
He fell and broke his hip September 5th of this year, and after the surgery he was incapable of any of the things I mentioned previously. In addition he cannot dress himself, has no idea of time and suffered from terrible hallucinations and delusions. We have had to place him in a Home that caters to people with dementia. If I had known then what I know now, I would have requested a spinal for his surgery. The anesthesia wiped out his mind! He had been experiencing many of the early symptoms of LBD - shuffling and balance issues, trouble with time, some spatial issues, but nothing like we are dealing with now. The surgery just put everything into overdrive. So sad - such a vital, happy, enthusiastic senior one moment, a completely dependent patient now.
I feel so bad for all of the people on this forum who are experiencing the same Hell that we find ourselves in! All we can do is the best we can for our loved ones.

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"Im pedalling as fast as I can!"


Sun Dec 24, 2006 5:03 pm
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Hi Fins,
What you have described is very common, but we never know until the damage has been done, 2 yrs before my Husband passed he had 3 very bad GI bleeds on 3 seperate occasions in the same yr, I seen a change with each one but the last one did him in for sure , then he had a fall and fractured the T-12 in his back and he was never the same after that so I do know what you are saying and thats why it is so important to get the word out about this type of dementia!
I feel for you and your family also! :(


Sun Dec 24, 2006 10:05 pm

Joined: Tue Jun 06, 2006 10:57 am
Posts: 11
Location: Washington, DC
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Hi again. Cindy - I just re-read your original post and you mention that your dad is still driving. I encourage you to get him from behind the wheel as soon as possible. This was hard for my family to do but we felt we had overcome a major hurdle once we convinced my dad to stop driving.

Onto your post about holiday activity and your dad's reaction. In the beginning (before the aricept) my dad would be incredibly anxious about the comings and goings of everyone. I think because he struggled so with the concept of time that and the fact that he saw little children in his hallucinations, he really struggled to figure out what was supposed to be going on. Of course, all of our celebrating happened towards the end of the day (4:00 p.m. on and that is his worst time). We have a pretty large family (five kids, their spouses, grandkids) and there was just too much activity. It really agitated him. Even now, with the aricept, we try and do things in the morning, early afternoon or at least, have an early dinner. It helps. One other thing I remember, he couldn't focus when the TV or stereo was on and people were having separate conversation. If you can have only one activity going at a time, it may help cut down on the confusion.

Re: travel - I'll be honest, it can be hard. You don't mention if your parents stay in the same place every year in FL., but that may help. If he's already familiar with the space, then he may be comfortable. We found that my dad did really well with structure and routine and to break it required some planning. Travel, I think, requires a bit of spontaneity. Travel certainly can be done, but I suggest some thorough planning to try and establish routine, if that makes any sense.

I'm sending you all my best, Cindy and everyone else reading, it's hard to know what's best, but you can find something to give you hope.


Mon Dec 25, 2006 11:11 am
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Joined: Thu Jan 11, 2007 1:03 pm
Posts: 38
Location: Wisconsin
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Hi, This is my first posting. My husband had early onset LBD 4 years ago. He is 77 now, I am 69. It started with REM sleep disorder. He is in a nursing home now for the past 4 months. I couldn't handle his care, I tried to end myself by starving. I ended up in the hospital, then a week later I had major abdominal surgery for bowel blockage due to adhesions. If any of you are thinking that there is an easy way out, that isn't it!! I have 4 grown children, two girls who live far away and love me and support my decision, and two boys that hate me for putting their dad in a home. I spend many lonely days grieving for my husband and wishing that my boys and their grown children would talk to me. Does anyone find it very hard to visit their loved one in a home, then leave??

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Husband 78, In Late Stages of LBD


Fri Jan 12, 2007 7:50 pm
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Hi Attilla,
Let me welcome you to our little corner of the world of LBD, I am so sorry that you have gone through so much but I do think you are a better person knowing you couldn't care for your husband, you knew in your heart that he deserved better care and by placing him you are doing that for him . With Lewy Body there are so many things to deal with and with your age alone I imagine it was very difficult I am 54 yrs old and cared for my husband and I have to tell you it was hard, I know there are members here caring for a parent and they are having a hard time doing it and I am sure you will hear from them. I am glad that you at least have your daughters to get through this hard time even tho they are far at least you have their support, I am sorry that your boys see it differently, you don't say how far they are from you, were they willing to help in their Dad's care and if so how much and again try and understand their feelings they are not walking in your shoes and can't really understand what it is that needs to be done in the care of a person with LBD.
I hope you can find a way to forgive yourself with all of this, you are doing the best you can and ending your life is not the answer, at least being on this Earth you can still be very active in the care of your husband, which I am sure you want, if something happened to you who would do that ? There is an active online caring spouses caregiver group that you could join and there are many that are walking in your shoes and can help you with their compassion , I wish you well and please keep writing us someone is always here with a kind word or two. :)

PS. If you are intrested in the online group let me know


Fri Jan 12, 2007 8:10 pm

Joined: Thu Jan 11, 2007 1:03 pm
Posts: 38
Location: Wisconsin
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Thank you Irene, You are just what I needed. I need to forgive myself, but that is a tall order when my boys live within a couple of miles and show their dislike in both "marriage is in sickness and in health..." and their none visits or calls.

They promised to help me 2 years ago when I buckled and took him out of the home. The help and support never came, he is their Dad and they still treat him as though he knows what he is talking about. He was always a very controlling man and still tried to be until lately. He no longer makes sense and lives in a hallucination world.....They continue to believe that it is the meds that made him sick and still are to blame. They are rude to the nursing home staff. In their minds it is still "my responsibility to take care of him at home."

I vow to think happy thoughts as often as I can get my husband off my mind. I will continue to visit this website to help me know that others are going through hard times as well. I am very much interested in the website that you mentioned.

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Husband 78, In Late Stages of LBD


Sat Jan 13, 2007 9:49 am
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Hi Attilla,
I wouldn't worry about your boys being rude to the nursing home staff, I am sure they handle these issues day and night but I do have a suggestion, could you ask the Nursing Home to include your boys in their monthly family meetings, explain to the staff how your boys view their Dad's illness maybe if a social worker can work with them and help them understand what your Dad needs and to be honest with you if they in fact promised help when you had your husband home and didn't follow through then perhaps some of their anger is guilt??
Just a little story here, When my Husband was alive and we were dealing with his illness and as I already said it was hard, my children never seen it, seemed like the days they visited he was doing well, they didn't go through the wet beds, the shower that he would fight me on the times he tossed his food on the floor the many falls, the many ER visits , ect you get the picture. I am sure at the time when I told them things on the telephone they thought I was the crazy one because they didn't see this side of him...We were preparing for a move and I already had Hospice in place because of the on going infections and falls, Hospice offered to place him in their Hospice house for the week so we could move , well he became so violent and when my children went to visit they got a real eye opener, my husband who was NEVER a violent person had me by the throat of course he couldn't hurt me he was in a weakened state but when they witnessed this they changed their minds but it was only 1 month before his death and of course now that he is gone I get all the praise of how I took such good care of him but it was a long time in coming ....I did it because as you say I made a vow to God in sickness and in health and I kept that vow and so are you, just because he isn't home doesn't mean you are not doing it, you just have someone else (Trained) to help him, its no different that if you had full time help in the home.
I am glad that you are thinking happy thoughts and remember we have NO control over this illness it takes on a life of its own.


Sat Jan 13, 2007 11:27 am

Joined: Thu Jan 11, 2007 1:03 pm
Posts: 38
Location: Wisconsin
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Thanks again Irene,
The staff at the home well know my boys and their views. They refuse to have anything to do with acceptance, as they do not believe that there is anything to accept. Both have had their own runin with my husband, and it wasn't pleasant to either, yet they still will not admit that he is in a better place fot both of us. I guess, in my case I will just have to wait and see if it is all over and we are a loving family again, when my husband passes. He has gotten progressive worse over the past 4 months, he is in excellent physical health still. He did have angioplasty about 15 years ago and is on heart meds, and he has a glowing health report, just his mind is gone.
Will keep on keeping on!!
Elaine Bushman

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Husband 78, In Late Stages of LBD


Sat Jan 13, 2007 3:36 pm
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Joined: Tue Dec 19, 2006 1:18 am
Posts: 53
Location: Chicago
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Dear Cindy,

I just read your 12/22 post, and wonder how things are going now for your dad, mom and you. Have you been able to get the info about LBD you were seeking? I've been on this journey with my 78 YO mom for 4 years - she has Parkinson's, LBD and underlying mental illness. Getting info, getting the best docs for your dad, and taking care of yourself are the most importnt things you can likely do.

If you haven't read it yet, print out the article by Dr. Boeve on LBD and recommended treatments, including meds, right on this site. He is well-known nationally, and other clinicians who publish on this disease base much of their work on his.

By now you have probably learned that a sleep study may be helpful, but is not the way to actually diagnose LBD. And also that "believing the hallucinations" is actually a cognitive problem in itself.

Did you get answers to your first questions? Surgery (actually it's usually the anesthesia) does indeed "uncover" neurological diseases already present but hidden, and can also accelerate the progress of others.

Neurological problems and chemical imbalances can affect anything about our minds or bodies. So yes, LBD could affect his ability to read.

Best medications? Again, see Dr. Boeve's article. There are some generics, but many of the meds prescribed for LBD and other dementias are still new enough that the patents haven't expired. So we have to buy "brand names" - which of course if why they are so expensive. But if they work - what else is the $ for? Neuros usually prescribe a "memory med" (Razadyne, Exelon, Namenda) and an atypical antipsychotic.

Please be sure your dad has the best neuro available and one who does understand LBD quite well. That's because treatments that work for those with Alzheimer's and other dementias can be very dangerous to those with LBD. And get the clearest diagnosis possible: "dementia" can be further diagnosed by a good neuro.

The doctor, social work dept at local hospital, your county's senior services advocacy group, etc. should be able to provide resources to track the least expensive source of meds. And, frankly (I work at a hospital), your dad's doc should be able to provide samples. Don't be too proud to ask. The drug companies pass them out to docs like the proverbial candy. This may be pushy, but what kind of insurance coverage does your dad have? Drug coverage? By now, your dad should have signed up for prescription drug coverage via Medicare D or another provider. Get all the info on his coverage. Change it if you have to. Check out meds from Canada.

Please don't let your dad drive. From my heart, I remind you he has - of at least you think he has - dementia. (Bynow, you may have gotten a firm diagnosis.) By its very definition, LBD is a dementia of fluctuations - of mental and physical abilities which your dear dad cannot control.

Seroquel is one of the two atypical antipsychotics recommended for hallucinations, anxiety, paranoia, etc. in LBD. Perhaps your dad's original dose was still too high: what was it. Or, perhaps, too much was given at one time. There's a mantra in neuro disease circles: "Start low, go slow." Very low doses, and raise them extremely slowly. These are very strong meds. So are the memory meds given for dementia - again, see Dr. Boeve re appropriate ones for LBD.

The future is uncertain, as Irene noted. However ... read all you can, learn about the major progressions. There is a lot on athis site, as I said, and more at the best known medical sites - American Academy of Family Physicians, Naitonal Institutes of Health, Mayo Clinic, Cleveland Clinic.

Please write back and let us know how you, your dad and your mom are doing. You'll be in my prayers.

Peace, Lin


Wed Jan 17, 2007 1:00 am
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