Guest guest Posted March 14, 2008 Report Share Posted March 14, 2008 June, This is the simplest way for me to know. AD is AD. LBD is a combination of AD, Parkinson, and Lewybody. And it can be in any combination. There is a high degree of sensitivity to drugs with LBD. And the Parkinson and LBD drugs fight unless you have just the right cocktail of drugs. (My Mom just couldn't take any of the drugs.) Because of the PD, you usually get falls. They tend to go in and out of dementia. They can have moments of fooling everyone. We call it " showtime " and LBDers usually will sleep long and hard after they have to pull up " normal " for any length of time. This is all still questions in everyone's minds including the MDs. They are still wanting to call it something else if the PD shows up first. Or if PD and the dementia show up within a year of each other. They are beginning to think it is a spectrum of diseases. What is useful is there are many ways to have access to the AD resources and get some help. But there is a difference. Most here on this site say, " If you have seen one patient with LBD, you have seen one patient with LBD. " They all have similar problems and are yet each patient can be so different. A lot of it is trial and error. Mom died so long ago, '02 and she was sick for at least 4 years before that, we never got a diagnosis. I just knew it didn't look like the AD group she was in. Hope this helps some. As you read you will understand. if you go down to the bottom of this message, you will find some blue words. and if you click on " links " or " files " you will find all kinds of information that has organized and you can read to your heart's content. You can also see some of us if you go into " photo's. " Hugs, Donna R Caregave for Mom (after I brought her from WI to MI) for 3 years and 4th year in a nh. She was almost 89 when she died in '02. No dx other than mine. Information I would like to know the difference between Alzheimer's and Lewy Body? Can anyone help me. Thank you, Momviz (June) **************It's Tax Time! Get tips, forms, and advice on AOL Money & Finance. (http://money.aol.com/tax?NCID=aolprf00030000000001) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 15, 2008 Report Share Posted March 15, 2008 Thanks to everyone for the information of the difference between LBD and Alzheimer's. I have another question, how can a person hallucinate for over 6 hours, where do they find the strength to holler that long. My husband who has LBD and Parkinson says we have children living on the roof and they come into the house. They also have a Father and my husband is going to charge them $3 million, to live in our house. I wish he would get it as we could use the money. My husband is on Namenda, Exelon,and Seroquel. Is this a problem that is commen? June M. **************It's Tax Time! Get tips, forms, and advice on AOL Money & Finance. (http://money.aol.com/tax?NCID=aolprf00030000000001) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 15, 2008 Report Share Posted March 15, 2008 I'm all ready for something new. June M: , I don't know if it is common, but do you mean do lots have this happen? There are lots of children in lots of places we never see. Other people who may have died long ago. The roof seems to be a place for stuff to happen too. Sometimes it is fire. Not sure how people get on the roof. There are other things. Small animals, bugs, and I am sure you will hear about other stuff. It seems to be a phase and then it passes. And it will be on to new problems. **************It's Tax Time! Get tips, forms, and advice on AOL Money & Finance. (http://money.aol.com/tax?NCID=aolprf00030000000001) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 15, 2008 Report Share Posted March 15, 2008 June M, I don't know if it is common, but do you mean do lots have this happen? There are lots of children in lots of places we never see. Other people who may have died long ago. The roof seems to be a place for stuff to happen too. Sometimes it is fire. Not sure how people get on the roof. There are other things. Small animals, bugs, and I am sure you will hear about other stuff. It seems to be a phase and then it passes. And it will be on to new problems. Hugs, Donna R Caregave for Mom (after I brought her from WI to MI) for 3 years and 4th year in a nh. She was almost 89 when she died in '02. No dx other than mine. Re: Information Thanks to everyone for the information of the difference between LBD and Alzheimer's. I have another question, how can a person hallucinate for over 6 hours, where do they find the strength to holler that long. My husband who has LBD and Parkinson says we have children living on the roof and they come into the house. They also have a Father and my husband is going to charge them $3 million, to live in our house. I wish he would get it as we could use the money. My husband is on Namenda, Exelon,and Seroquel. Is this a problem that is commen? June M. **************It's Tax Time! Get tips, forms, and advice on AOL Money & Finance. (http://money.aol.com/tax?NCID=aolprf00030000000001) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 16, 2008 Report Share Posted March 16, 2008 The Neurologist is aware of what is happening, and he has been increasing the Seroquel. So far this has not helped. June M: I'm so sorry to hear that your husband is suffering. Your doctor needs to know what is happening so he can manage these symptoms. Help is available and it is kindness to relieve this type of suffering. Sheila (With a neurologist and the correct med and correct dosage, my mom's hallucinations are almost nonexistent.( **************It's Tax Time! Get tips, forms, and advice on AOL Money & Finance. (http://money.aol.com/tax?NCID=aolprf00030000000001) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 16, 2008 Report Share Posted March 16, 2008 I'm so sorry to hear that your husband is suffering. Your doctor needs to know what is happening so he can manage these symptoms. Help is available and it is kindness to relieve this type of suffering. Sheila (With a neurologist and the correct med and correct dosage, my mom's hallucinations are almost nonexistent.) MengelFl@... wrote: Thanks to everyone for the information of the difference between LBD and Alzheimer's. I have another question, how can a person hallucinate for over 6 hours, where do they find the strength to holler that long. My husband who has LBD and Parkinson says we have children living on the roof and they come into the house. They also have a Father and my husband is going to charge them $3 million, to live in our house. I wish he would get it as we could use the money. My husband is on Namenda, Exelon,and Seroquel. Is this a problem that is commen? June M. **************It's Tax Time! Get tips, forms, and advice on AOL Money & Finance. (http://money.aol.com/tax?NCID=aolprf00030000000001) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 16, 2008 Report Share Posted March 16, 2008 The Dr. just raised the seroquel to 200mg in the morning and 200mg at night: JuneM For us, the seroquel took care of the Hallucinations. Let your perscribing doctor know what is happening--phone call or email, perhaps (ours does) and maybe the frequency or dosage might be raised. Leona One tree can start a forest, one smile can start a friendship. One touch can show you care, one friend can make life worth living for. **************It's Tax Time! Get tips, forms, and advice on AOL Money & Finance. (http://money.aol.com/tax?NCID=aolprf00030000000001) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 16, 2008 Report Share Posted March 16, 2008 Artie helps me by putting the dishes away when I'm not around. But the dishes usually havn't been washed and there all sticky. June M.: She would tell me to leave the dishes, but if I did nothing ever happened, or she washed anything on the counter. Pepto-Bismol, salt shakers, pencils and pens. It was sad. Carol **************It's Tax Time! Get tips, forms, and advice on AOL Money & Finance. (http://money.aol.com/tax?NCID=aolprf00030000000001) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 16, 2008 Report Share Posted March 16, 2008 We think the Seroquel helped keep the " kids " at bay. I don't think they totally ever went away, but we asked them to go home whenever I was wise enough to ask if they were about. Sometimes Millie didn't tell me about them until after they had kept her awake at night. If i knew they were there, I could do something, but if not, she suffered so much company I didn't know about. She told me one day she took several of them to the train station after she had her car taken away. We have no train station anywhere around here, so I knew for sure she hadn't been on a mission. it was real enough to her to make me figure out logically that there were no kids. This was in her mid stage of the disease. Maybe the " kids " represent some kind of responsibility they think they should have, but can't really figure out what it is. Millie always wanted to help with meals, but couldn't follow any direction to be of any help. Even setting out napkins was too complicated. She would try to wash paper cups and plates if I didn't tend to the dishes in a speedy fashion. She would tell me to leave the dishes, but if I did nothing ever happened, or she washed anything on the counter. Pepto-Bismol, salt shakers, pencils and pens. It was sad. Carol Carol --------------------------------- Never miss a thing. Make Yahoo your homepage. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 16, 2008 Report Share Posted March 16, 2008 For us, the seroquel took care of the Hallucinations. Let your perscribing doctor know what is happening--phone call or email, perhaps (ours does) and maybe the frequency or dosage might be raised. Leona One tree can start a forest, one smile can start a friendship. One touch can show you care, one friend can make life worth living for. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 17, 2008 Report Share Posted March 17, 2008 Everyone, isn't this way too much Seroquel?!!! The hallucinations could be coming from having too much. MengelFl@... Sent by: LBDcaregivers@yah To oogroups.com LBDcaregivers cc 03/16/2008 02:43 Subject PM Re: Re: Information Please respond to LBDcaregivers@yah oogroups.com The Dr. just raised the seroquel to 200mg in the morning and 200mg at night: JuneM For us, the seroquel took care of the Hallucinations. Let your perscribing doctor know what is happening--phone call or email, perhaps (ours does) and maybe the frequency or dosage might be raised. Leona One tree can start a forest, one smile can start a friendship. One touch can show you care, one friend can make life worth living for. **************It's Tax Time! Get tips, forms, and advice on AOL Money & Finance. (http://money.aol.com/tax?NCID=aolprf00030000000001) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 17, 2008 Report Share Posted March 17, 2008 June, did you notice the hallucinations after he was given a particular drug or did he always have them? When he was on Namenda and Exelon he had no problems. When the Doctor said he also had Parkinson's they put him on Sinemet, that was when he started to hallucinate. Then they also gave him Seroquel, which they keep raising the doses to help him. June M **************It's Tax Time! Get tips, forms, and advice on AOL Money & Finance. (http://money.aol.com/tax?NCID=aolprf00030000000001) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 17, 2008 Report Share Posted March 17, 2008 June, did you notice the hallucinations after he was given a particular drug or did he always have them? MengelFl@... Sent by: LBDcaregivers@yah To oogroups.com LBDcaregivers cc 03/16/2008 12:06 Subject AM Re: Information Please respond to LBDcaregivers@yah oogroups.com Thanks to everyone for the information of the difference between LBD and Alzheimer's. I have another question, how can a person hallucinate for over 6 hours, where do they find the strength to holler that long. My husband who has LBD and Parkinson says we have children living on the roof and they come into the house. They also have a Father and my husband is going to charge them $3 million, to live in our house. I wish he would get it as we could use the money. My husband is on Namenda, Exelon,and Seroquel. Is this a problem that is commen? June M. **************It's Tax Time! Get tips, forms, and advice on AOL Money & Finance. (http://money.aol.com/tax?NCID=aolprf00030000000001) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 17, 2008 Report Share Posted March 17, 2008 June, Sinemet can definitely give him hallucinations. It would suggest he be weaned off of it to see how he reacts. His limbs may be more rigid, but he may get rid of the majority of hallucinations. MengelFl@... Sent by: LBDcaregivers@yah To oogroups.com LBDcaregivers cc 03/17/2008 03:01 Subject PM Re: Information Please respond to LBDcaregivers@yah oogroups.com June, did you notice the hallucinations after he was given a particular drug or did he always have them? When he was on Namenda and Exelon he had no problems. When the Doctor said he also had Parkinson's they put him on Sinemet, that was when he started to hallucinate. Then they also gave him Seroquel, which they keep raising the doses to help him. June M **************It's Tax Time! Get tips, forms, and advice on AOL Money & Finance. (http://money.aol.com/tax?NCID=aolprf00030000000001) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 17, 2008 Report Share Posted March 17, 2008 Welcome, June, from another June. It's rare that I find someone with my name, and especially so with an online group such as this. I worked with another June once, and we had to be June J and June C to keep us straight. By the same token, there were 3 s, so that was worse. The only time that I knew he was having hallucinations came after he was given pain-relieving drugs (extra-strength Tylenol, Oxycontin, and drugs that probably had codeine in them. He also hallucinated, maybe more delusions, when he had a really severe UTI. But, I don't think Aricept or Namenda ever caused a problem with him. He never had Parkinson's so was never on Sinemet. He did have Parkinsonism, but was not given anything for it. Isn't he the one that I read that Seroquel was increased? If so, it sounds as if that's a lot of Seroquel. Seroquel would calm my husband down, but it was worse when it wore off. I never saw any benefit for him. I do remember that when he sat in the dining room of the NH, he would say he was reading some street signs and would name names that were not any streets in this city nor any other town we lived in. But, they were names that made sense. I don't know if that would be called hallucinations or not. He often said he saw cars, and I thought that was hallucinating, but then I realized he was facing an inside window that reflected the cars outside, so he really was seeing cars. Didn't realize that until I happened one day to sit in the same line of vision and saw them too. (Maybe I was hallucinating.) Most of his were animals and children, and he was very matter of fact about seeing them as if there was no question. June --- MengelFl@... wrote: > > June, did you notice the hallucinations after he > was given a particular > drug or did he always have them? > When he was on Namenda and Exelon he had no > problems. When the Doctor said > he also had Parkinson's they put him on Sinemet, > that was when he started to > hallucinate. Then they also gave him Seroquel, > which they keep raising the > doses to help him. June M > > > > > > > > > **************It's Tax Time! Get tips, forms, and > advice on AOL Money & > Finance. > (http://money.aol.com/tax?NCID=aolprf00030000000001) > > > [Non-text portions of this message have been > removed] > > ________________________________________________________________________________\ ____ Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now. http://mobile.yahoo.com/;_ylt=Ahu06i62sR8HDtDypao8Wcj9tAcJ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 17, 2008 Report Share Posted March 17, 2008 June M, When my dad was in the nursing home last summer, his neuro (who we continued to see) decided to increase his Sinemet from 3 to 4 times per day. That was toward the end of June. The month of July was a living hell--he was aggressive toward the 24/7 caregivers we had to hire as well as the staff at the nursing home. I live about 3 hours away from my folks and I don't think I spent 5 days during the whole month at home. I didn't make the connection and the nh doc kept upping the Seroquel dosage to counterbalance the aggression. Finally the caregivers took it upon themselves to talk with the psychiatrist and the physician's assistant to discuss all of this (God bless them both!). The PA decided to cut the sinemet dosage in half (from 4/day to 2/day). Within 3 days most of his aggression disappeared, the seroquel dosage was gradually decreased and we were able to bring him home (with the 24/7 caregivers) by the end of August. He is pretty feeble some days with walking but he's still at home--at least for now. He will still have an occasional " angry " or aggressive spell, but boy is it 95% better! Dianne P daughter of Bill, 84 MengelFl@... wrote: June, did you notice the hallucinations after he was given a particular drug or did he always have them? When he was on Namenda and Exelon he had no problems. When the Doctor said he also had Parkinson's they put him on Sinemet, that was when he started to hallucinate. Then they also gave him Seroquel, which they keep raising the doses to help him. June M **************It's Tax Time! Get tips, forms, and advice on AOL Money & Finance. (http://money.aol.com/tax?NCID=aolprf00030000000001) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 18, 2008 Report Share Posted March 18, 2008 Thank you for Your comments on your Fathers reaction to Seroquel. I will see the Doctor in May and am going to bring all this to his attention. Thank you. June M: June M, When my dad was in the nursing home last summer, his neuro (who we continued to see) decided to increase his Sinemet from 3 to 4 times per day. That was toward the end of June. The month of July was a living hell--he was aggressive toward the 24/7 caregivers we had to hire as well as the staff at the nursing home. I live about 3 hours away from my folks and I don't think I spent 5 days during the whole month at home. I didn't make the connection and the nh doc kept upping the Seroquel dosage to counterbalance the aggression. Finally the caregivers took it upon themselves to talk with the psychiatrist and the physician's assistant to discuss all of this (God bless them both!). The PA decided to cut the sinemet dosage in half (from 4/day to 2/day). Within 3 days most of his aggression disappeared, the seroquel dosage was gradually decreased and we were able to bring him home (with the 24/7 caregivers) by the end of August. He is pretty feeble some days with walking but he's still at home--at least for now. He will still have an occasional " angry " or aggressive spell, but boy is it 95% better! Dianne P daughter of Bill, 84 **************It's Tax Time! Get tips, forms, and advice on AOL Money & Finance. (http://money.aol.com/tax?NCID=aolprf00030000000001) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 18, 2008 Report Share Posted March 18, 2008 Artie see's children, who live on the roof. But they are always in the house. He tells their Father they should be in school and if they don't go, it will cost them 3 million dollars. I can't wait to get the money.LOL June M.: Welcome, June, from another June. It's rare that I find someone with my name, and especially so with an online group such as this. I worked with another June once, and we had to be June J and June C to keep us straight. By the same token, there were 3 s, so that was worse. The only time that I knew he was having hallucinations came after he was given pain-relieving drugs (extra-strength Tylenol, Oxycontin, and drugs that probably had codeine in them. He also hallucinated, maybe more delusions, when he had a really severe UTI. But, I don't think Aricept or Namenda ever caused a problem with him. He never had Parkinson's so was never on Sinemet. He did have Parkinsonism, but was not given anything for it. Isn't he the one that I read that Seroquel was increased? If so, it sounds as if that's a lot of Seroquel. Seroquel would calm my husband down, but it was worse when it wore off. I never saw any benefit for him. I do remember that when he sat in the dining room of the NH, he would say he was reading some street signs and would name names that were not any streets in this city nor any other town we lived in. But, they were names that made sense. I don't know if that would be called hallucinations or not. He often said he saw cars, and I thought that was hallucinating, but then I realized he was facing an inside window that reflected the cars outside, so he really was seeing cars. Didn't realize that until I happened one day to sit in the same line of vision and saw them too. (Maybe I was hallucinating.s Most of his were animals and children, and he was very matter of fact about seeing them as if there was no question. **************Create a Home Theater Like the Pros. Watch the video on AOL Home. (http://home.aol.com/diy/home-improvement-eric-stromer?video=15?ncid=aolhom00030\ 000000001) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 16, 2012 Report Share Posted April 16, 2012 Members, please upload any info, anytime, you can never have enough information, thanks for everyone's compassion, time and effort, with this subject. Constipation is a horrible thing for anyone to endure. Thank you.................ALL, for everything you've taught me! Jeanie Quote Link to comment Share on other sites More sharing options...
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