Guest guest Posted March 3, 2012 Report Share Posted March 3, 2012 Hi Just a thought - you mentioned that your dad is now taking 13 pills a day. Sometimes it can be the medication that is compounding a situation ... A friend I met through the Carers' Group at our local hospital, whose husband has LBD and was hospitalised because he was behaving very erratically and almost uncontrollable, has told me that her husband is now living back at home after all medication was stopped in hospital. He is now on very small doses. I don't know now what he is taking but I do know that by stopping the meds, his behaviour changed dramatically. Elaine from Sydney Australia Carer for four years for husband Jim who died peacefully in hospital on 12th February 2011. Brain analysis, as a result of brain donation, has now confirmed the diagnosis of Diffuse Lewy Body Disease ************************************* Apparently overnight he seems to have gotten even worse, he was in the middle of feeding the horses & someone slowed down at the turn near there house & he ran out into the street yelling at them & left the gate open & a horse got out. luckily the farrier was there & caught the horse. She talked to the Dr again today & he upped him to 12 pills a day & added thorazadone. if he was refusing to take 4 pills 2x a day i'm not sure how he's going to take 13 pills a day but the Dr said he'd call my dad & explain that he prescribed the pills & my mom isn't trying to poison him. We're supposed to wait until Sunday & see how he is. My boyfriend & I are headed up there for the weekend to help take care of him. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 3, 2012 Report Share Posted March 3, 2012 Hi, ,  I have the similar experience as what Elaine described. My mom was diagnosed LBD in 2009. Start try all the medications. at the begining of 2010, she's very unsettled during the night (getting up all the time, washing, searching for lost things), nuro dr. start add more med try to control this, worked for a few days then getting worse, the whole ajust med experience is really hard (she's very agitated, a lot of halucination etc). Eventually one nuro suggested to withdraw all the DLB related med to back to base line. We did that finally things getting better in terms of her sleep and mood overall. Her condition declined fast from when she was diagnosed to the time we stopped all med (two years period, from walking unsteadly to weelchair bound, from eating by herself with help to has to be fed, from talk with some logic to no body understand her talking). Now she's off all the DLB med, only meds she took is for her AF and help her bow movement. She's 82, To me all the DLB meds did little to help with maybe a lof of side effect. My mom used to be chemistry professor, she always trying to avoid take med if she can avoid it or take less dosage, somehow now I agree with her more on this.  - Min ________________________________ To: LBDcaregivers Sent: Saturday, March 3, 2012 5:24 AM Subject: Re: new member -  Hi Just a thought - you mentioned that your dad is now taking 13 pills a day. Sometimes it can be the medication that is compounding a situation ... A friend I met through the Carers' Group at our local hospital, whose husband has LBD and was hospitalised because he was behaving very erratically and almost uncontrollable, has told me that her husband is now living back at home after all medication was stopped in hospital. He is now on very small doses. I don't know now what he is taking but I do know that by stopping the meds, his behaviour changed dramatically. Elaine from Sydney Australia Carer for four years for husband Jim who died peacefully in hospital on 12th February 2011. Brain analysis, as a result of brain donation, has now confirmed the diagnosis of Diffuse Lewy Body Disease ************************************* Apparently overnight he seems to have gotten even worse, he was in the middle of feeding the horses & someone slowed down at the turn near there house & he ran out into the street yelling at them & left the gate open & a horse got out. luckily the farrier was there & caught the horse. She talked to the Dr again today & he upped him to 12 pills a day & added thorazadone. if he was refusing to take 4 pills 2x a day i'm not sure how he's going to take 13 pills a day but the Dr said he'd call my dad & explain that he prescribed the pills & my mom isn't trying to poison him. We're supposed to wait until Sunday & see how he is. My boyfriend & I are headed up there for the weekend to help take care of him. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 3, 2012 Report Share Posted March 3, 2012 Hi, ,  I have the similar experience as what Elaine described. My mom was diagnosed LBD in 2009. Start try all the medications. at the begining of 2010, she's very unsettled during the night (getting up all the time, washing, searching for lost things), nuro dr. start add more med try to control this, worked for a few days then getting worse, the whole ajust med experience is really hard (she's very agitated, a lot of halucination etc). Eventually one nuro suggested to withdraw all the DLB related med to back to base line. We did that finally things getting better in terms of her sleep and mood overall. Her condition declined fast from when she was diagnosed to the time we stopped all med (two years period, from walking unsteadly to weelchair bound, from eating by herself with help to has to be fed, from talk with some logic to no body understand her talking). Now she's off all the DLB med, only meds she took is for her AF and help her bow movement. She's 82, To me all the DLB meds did little to help with maybe a lof of side effect. My mom used to be chemistry professor, she always trying to avoid take med if she can avoid it or take less dosage, somehow now I agree with her more on this.  - Min ________________________________ To: LBDcaregivers Sent: Saturday, March 3, 2012 5:24 AM Subject: Re: new member -  Hi Just a thought - you mentioned that your dad is now taking 13 pills a day. Sometimes it can be the medication that is compounding a situation ... A friend I met through the Carers' Group at our local hospital, whose husband has LBD and was hospitalised because he was behaving very erratically and almost uncontrollable, has told me that her husband is now living back at home after all medication was stopped in hospital. He is now on very small doses. I don't know now what he is taking but I do know that by stopping the meds, his behaviour changed dramatically. Elaine from Sydney Australia Carer for four years for husband Jim who died peacefully in hospital on 12th February 2011. Brain analysis, as a result of brain donation, has now confirmed the diagnosis of Diffuse Lewy Body Disease ************************************* Apparently overnight he seems to have gotten even worse, he was in the middle of feeding the horses & someone slowed down at the turn near there house & he ran out into the street yelling at them & left the gate open & a horse got out. luckily the farrier was there & caught the horse. She talked to the Dr again today & he upped him to 12 pills a day & added thorazadone. if he was refusing to take 4 pills 2x a day i'm not sure how he's going to take 13 pills a day but the Dr said he'd call my dad & explain that he prescribed the pills & my mom isn't trying to poison him. We're supposed to wait until Sunday & see how he is. My boyfriend & I are headed up there for the weekend to help take care of him. Quote Link to comment Share on other sites More sharing options...
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