Guest guest Posted January 6, 2006 Report Share Posted January 6, 2006 Hello, I am new to the group and want to gain as much information about LBD as I possibly can. I have a 68 year old FIL who was diagnosed with PD two years ago. About 6 months later, he was diagosed with LBD. Since his intial diagnosis, he has declined rapidly. He can no longer walk without the assistance of a cane or walker. He needs A LOT of assistance getting in and out of a bed, cars, and chairs. He has frequent falls. He has difficuly with freezing, rigidity, and tremors. He is taking Sinemet (not sure of the exact dosage) four times daily, but it really isn't helping. His memory is terrible, particularly short term. He becomes fixated on things and ideas very easily and can't let go of them. For instance, he's become " obsessed " with buying hangers everytime he's in a store, though he doesn't need them. He's also convinced that he needs a new truck, though he no longer drives. He argues with his wife that he has a doctor's appointment on a certain day when he doesn't and he just won't let it go. He's become almost anti-social, keeping to himself most of the time. He has lost all facial expression, but is beginning to have a lot of facial grimacing. He used to be a banker, but can't even do simple math now. He gets agitated easily. He left the gas burner on the stove turned on a few weeks ago after he finished cooking breakfast, but blamed it on my husband. He's obsessed with guns and wants to buy more, though he has a large collection already. My MIL fears that he's hidden loaded guns in their house. His grammar, sentence structure, and handwriting have all gotten much worse. His handwriting isn't even legible. Is what I've described here common for someone with LBD? I get amazed to see the differences in him since his diagnosis. I can truly see him becoming either bedridden or wheelchair dependent in the very near future. My MIL cares for him on her own and I'm not sure how much longer she'll be able to do that. Any insight you could offer me would be much appreciated. Thank you. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 6, 2006 Report Share Posted January 6, 2006 Hi! I wanted to let you know that you will find much support and help here. Those of us who have lived and died through the LBD process know exactly what you are going through now and will be going through in the near to far future. Your FIL has many of the changes my Dad went through. He was 66 when the symptoms first came to light and he was diagnosed with PD and Alzheimer's. Approximately 18 months before he died he was finally diagnosed correctly with LBD. Please feel free to ask any of us questions or just vent to us about how you are feeling and dealing with your FIL. Your MIL and spouse will need much support too!! Sending (((((hugs))))) as you travel on this journey through Lewyville. na in North Carolina Hello, I am new to the group and want to gain as much information about LBD as I possibly can. I have a 68 year old FIL who was diagnosed with PD two years ago. About 6 months later, he was diagosed with LBD. Since his intial diagnosis, he has declined rapidly. He can no longer walk without the assistance of a cane or walker. He needs A LOT of assistance getting in and out of a bed, cars, and chairs. He has frequent falls. He has difficuly with freezing, rigidity, and tremors. He is taking Sinemet (not sure of the exact dosage) four times daily, but it really isn't helping. His memory is terrible, particularly short term. He becomes fixated on things and ideas very easily and can't let go of them. For instance, he's become " obsessed " with buying hangers everytime he's in a store, though he doesn't need them. He's also convinced that he needs a new truck, though he no longer drives. He argues with his wife that he has a doctor's appointment on a certain day when he doesn't and he just won't let it go. He's become almost anti-social, keeping to himself most of the time. He has lost all facial expression, but is beginning to have a lot of facial grimacing. He used to be a banker, but can't even do simple math now. He gets agitated easily. He left the gas burner on the stove turned on a few weeks ago after he finished cooking breakfast, but blamed it on my husband. He's obsessed with guns and wants to buy more, though he has a large collection already. My MIL fears that he's hidden loaded guns in their house. His grammar, sentence structure, and handwriting have all gotten much worse. His handwriting isn't even legible. Is what I've described here common for someone with LBD? I get amazed to see the differences in him since his diagnosis. I can truly see him becoming either bedridden or wheelchair dependent in the very near future. My MIL cares for him on her own and I'm not sure how much longer she'll be able to do that. Any insight you could offer me would be much appreciated. Thank you. Welcome to LBDcaregivers. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 6, 2006 Report Share Posted January 6, 2006 na, Thank you so much for your reply. I am just trying to piece together all the symptoms I've seen in my FIL the past few years. For the life of me, I can't understand why, if in fact he does have PD and LBD, he's getting worse so quickly. I always thought PD progressed slowly; not too sure about LBD. Shouldn't it be a red flag that the Sinemet he's taking for PD isn't really helping him? He still suffers terrible episodes of freezing and rigidity, as well as tremors. In fact, when we saw him over Christmas, we went to my brother-in-law's house just up the road from my in-laws. Well, since my FIL tires very easily, he requested that he be taken home. So, my MIL dropped him off and she came on back and stayed for another hour and a half or so. When we got home, she found him standing beside their bed in his underwear. She asked what he was doing and he said he'd had a freezing episode and had tried to get into bed for over an hour. It really is heartbreaking to see his decline. Let me also add another thing he does that I find a bit odd. We all went to see a movie together during our visit. He had a terrible time getting into the car as he was very rigid. Anyhow, on our way to the movie, he asked my husband to turn on the cool air because he was getting hot. Well, when we got home, my FIL went to the sunroom that is just off their bedroom to watch TV. My husband went in there to talk to him awhile later. He told me that my FIL had a portable heater in there with him and it was blazing hot in that room. He said it was like a sauna, only worse. He said he didn't know how his father could stand to sit out there with the heat cranked up like that. How could he be hot one minute and be able to tolerate high heat the next? Maybe I'm reading more into that than I should. I know my FIL has trouble with blurred/double vision. He's tried prisms in his glasses, but that doesn't seem to help. I'm not sure about visual hallucinations, though. Is that very common with LBD? I know he'll sometimes say the strangest things; they are completely out of context. How do we know for sure if he has PD or just LBD? I'm assuming that since his MDS diagnosed him with both, that's a possiblity, as well. Are there any medications that help sufferers of LBD? Sorry for all the questions, but I'm frustrated beyond belief. I'm trying to figure out why my FIL is getting worse, instead of better. Thanks, again, April > Fom: na McNamara > Date: 2006/01/06 Fri PM 12:48:51 EST > To: LBDcaregivers > Subject: Re: FIL has LBD and PD > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 6, 2006 Report Share Posted January 6, 2006 Dear Friend, Glad you found us but sorry LBD was the reason. Your FIL's symptoms sound very much like LBD and yes, it is very rapid acting. Doctors will tell you years but my Mom has had a downward spiral since 4/05. The neurologists who treated her told us that the best drugs of choice are Aricept and Namenda for LBD. They have helped Mom some but the progressive decline is unfortunatley part of this dreadful disease. The Sinement is strictly a PD drug and it has tons of side effects - some of which you noted in his symptoms below. I would recommend you contact his doctor. Take care, Kathy, RN > > Hello, > > I am new to the group and want to gain as much information about LBD > as I possibly can. > > I have a 68 year old FIL who was diagnosed with PD two years ago. > About 6 months later, he was diagosed with LBD. Since his intial > diagnosis, he has declined rapidly. He can no longer walk without > the assistance of a cane or walker. He needs A LOT of assistance > getting in and out of a bed, cars, and chairs. He has frequent > falls. He has difficuly with freezing, rigidity, and tremors. He > is taking Sinemet (not sure of the exact dosage) four times daily, > but it really isn't helping. His memory is terrible, particularly > short term. He becomes fixated on things and ideas very easily and > can't let go of them. For instance, he's become " obsessed " with > buying hangers everytime he's in a store, though he doesn't need > them. He's also convinced that he needs a new truck, though he no > longer drives. He argues with his wife that he has a doctor's > appointment on a certain day when he doesn't and he just won't let > it go. He's become almost anti-social, keeping to himself most of > the time. He has lost all facial expression, but is beginning to > have a lot of facial grimacing. He used to be a banker, but can't > even do simple math now. He gets agitated easily. He left the gas > burner on the stove turned on a few weeks ago after he finished > cooking breakfast, but blamed it on my husband. He's obsessed with > guns and wants to buy more, though he has a large collection > already. My MIL fears that he's hidden loaded guns in their house. > His grammar, sentence structure, and handwriting have all gotten > much worse. His handwriting isn't even legible. Is what I've > described here common for someone with LBD? I get amazed to see the > differences in him since his diagnosis. I can truly see him > becoming either bedridden or wheelchair dependent in the very near > future. My MIL cares for him on her own and I'm not sure how much > longer she'll be able to do that. Any insight you could offer me > would be much appreciated. Thank you. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 6, 2006 Report Share Posted January 6, 2006 Hi (I am not sure of your name) Your FIL sounds rather typical for a LBDer. Has he seen a geriatric doctor yet? Sounds like it would help if he were on Aricept or Nameda or both. That could help him with the memory problems. Always start with a low dosage. Where in the Country are you? Dena --- aswest1021 wrote: > Hello, > > I am new to the group and want to gain as much > information about LBD > as I possibly can. > > I have a 68 year old FIL who was diagnosed with PD > two years ago. > About 6 months later, he was diagosed with LBD. > Since his intial > diagnosis, he has declined rapidly. He can no > longer walk without > the assistance of a cane or walker. He needs A LOT > of assistance > getting in and out of a bed, cars, and chairs. He > has frequent > falls. He has difficuly with freezing, rigidity, > and tremors. He > is taking Sinemet (not sure of the exact dosage) > four times daily, > but it really isn't helping. His memory is terrible, > particularly > short term. He becomes fixated on things and ideas > very easily and > can't let go of them. For instance, he's become > " obsessed " with > buying hangers everytime he's in a store, though he > doesn't need > them. He's also convinced that he needs a new > truck, though he no > longer drives. He argues with his wife that he has > a doctor's > appointment on a certain day when he doesn't and he > just won't let > it go. He's become almost anti-social, keeping to > himself most of > the time. He has lost all facial expression, but is > beginning to > have a lot of facial grimacing. He used to be a > banker, but can't > even do simple math now. He gets agitated easily. > He left the gas > burner on the stove turned on a few weeks ago after > he finished > cooking breakfast, but blamed it on my husband. > He's obsessed with > guns and wants to buy more, though he has a large > collection > already. My MIL fears that he's hidden loaded guns > in their house. > His grammar, sentence structure, and handwriting > have all gotten > much worse. His handwriting isn't even legible. Is > what I've > described here common for someone with LBD? I get > amazed to see the > differences in him since his diagnosis. I can truly > see him > becoming either bedridden or wheelchair dependent in > the very near > future. My MIL cares for him on her own and I'm not > sure how much > longer she'll be able to do that. Any insight you > could offer me > would be much appreciated. Thank you. > > > > > __________________________________________ Yahoo! DSL – Something to write home about. Just $16.99/mo. or less. dsl.yahoo.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 6, 2006 Report Share Posted January 6, 2006 Hi There Welcome to the group. Hope we can be some help to you. My Mother has very similar symptoms to your FIL. Mum was diag. with early AD about 5 years ago, PD about 3 years ago and LBD a year ago. Mum used to be on sinemet but she had a major slide last January when hallucinations came in with a vengence and she was hospitalized. When the hospital took her off the sinemet the hallucinations disappeared, when they put her back on they came back. As we had not noticed any improvemmnt to her PD while she was on the sinement, we (my sisters & I) demanded that she be taken off it. Now - a year later we notice that the PD symptoms have gotten alot worse so I suspect the sinemet may have been helping after all.. We are not willing however, to take the risk of having the hallucinations return (they were nasty & scarey). You will find there are trade offs with most drugs are Loved ones take. Some LO's tolerate and do well on some and others cannot touch them. My suggestion - start every medication slowly and with the smallest dose. Keep records of the reactions. Some drugs take several days (weeks) for the LO to climatize to them. Good luck in Manilla ON (CG to Margaret age 75 in Toronto) --- aswest1021 wrote: --------------------------------- Hello, I am new to the group and want to gain as much information about LBD as I possibly can. I have a 68 year old FIL who was diagnosed with PD two years ago. About 6 months later, he was diagosed with LBD. Since his intial diagnosis, he has declined rapidly. He can no longer walk without the assistance of a cane or walker. He needs A LOT of assistance getting in and out of a bed, cars, and chairs. He has frequent falls. He has difficuly with freezing, rigidity, and tremors. He is taking Sinemet (not sure of the exact dosage) four times daily, but it really isn't helping. His memory is terrible, particularly short term. He becomes fixated on things and ideas very easily and can't let go of them. For instance, he's become " obsessed " with buying hangers everytime he's in a store, though he doesn't need them. He's also convinced that he needs a new truck, though he no longer drives. He argues with his wife that he has a doctor's appointment on a certain day when he doesn't and he just won't let it go. He's become almost anti-social, keeping to himself most of the time. He has lost all facial expression, but is beginning to have a lot of facial grimacing. He used to be a banker, but can't even do simple math now. He gets agitated easily. He left the gas burner on the stove turned on a few weeks ago after he finished cooking breakfast, but blamed it on my husband. He's obsessed with guns and wants to buy more, though he has a large collection already. My MIL fears that he's hidden loaded guns in their house. His grammar, sentence structure, and handwriting have all gotten much worse. His handwriting isn't even legible. Is what I've described here common for someone with LBD? I get amazed to see the differences in him since his diagnosis. I can truly see him becoming either bedridden or wheelchair dependent in the very near future. My MIL cares for him on her own and I'm not sure how much longer she'll be able to do that. Any insight you could offer me would be much appreciated. Thank you. Welcome to LBDcaregivers. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 7, 2006 Report Share Posted January 7, 2006 Absolutely, get the guns out of the house, Myrna is right. Take them while he is sleeping or one at a time. And don't bring them back. Make sure all bullets are gone also. Does anyone have a count of how many guns he has? And that is rifles or handguns. Donna R Do you want to read more about Lewy Body? You can also read the Thistle, the LBD Newsletter. Just click on: http://www.lewybodydementia.org Re: FIL has LBD and PD Get all guns out of the house immediately. Use whatever excuse you can. They are being cleaned, stored, etc. When your FIL has one of his delusions, he might feel led to use one of those guns. Yes, these symptoms you describe are indicative of LBD. Is he on Seroquel or something like that for the hallucinations and combative symptoms? Tell your doctor immediately of the danger of family members and get help. Myrna in Missouri Husband Jerry (age 70) DZ AD1997 LBD2004 FIL has LBD and PD > Hello, > > I am new to the group and want to gain as much information about LBD > as I possibly can. > > I have a 68 year old FIL who was diagnosed with PD two years ago. > About 6 months later, he was diagosed with LBD. Since his intial > diagnosis, he has declined rapidly. He can no longer walk without > the assistance of a cane or walker. He needs A LOT of assistance > getting in and out of a bed, cars, and chairs. He has frequent > falls. He has difficuly with freezing, rigidity, and tremors. He > is taking Sinemet (not sure of the exact dosage) four times daily, > but it really isn't helping. His memory is terrible, particularly > short term. He becomes fixated on things and ideas very easily and > can't let go of them. For instance, he's become " obsessed " with > buying hangers everytime he's in a store, though he doesn't need > them. He's also convinced that he needs a new truck, though he no > longer drives. He argues with his wife that he has a doctor's > appointment on a certain day when he doesn't and he just won't let > it go. He's become almost anti-social, keeping to himself most of > the time. He has lost all facial expression, but is beginning to > have a lot of facial grimacing. He used to be a banker, but can't > even do simple math now. He gets agitated easily. He left the gas > burner on the stove turned on a few weeks ago after he finished > cooking breakfast, but blamed it on my husband. He's obsessed with > guns and wants to buy more, though he has a large collection > already. My MIL fears that he's hidden loaded guns in their house. > His grammar, sentence structure, and handwriting have all gotten > much worse. His handwriting isn't even legible. Is what I've > described here common for someone with LBD? I get amazed to see the > differences in him since his diagnosis. I can truly see him > becoming either bedridden or wheelchair dependent in the very near > future. My MIL cares for him on her own and I'm not sure how much > longer she'll be able to do that. Any insight you could offer me > would be much appreciated. Thank you. > > > > > > > > Welcome to LBDcaregivers. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 7, 2006 Report Share Posted January 7, 2006 April, The dementia brain doesn't always register body heat or a whole lot of other stuff. Sometimes they try and " guess " what should be happening and respond as if it is real. They continue to not want people to know what is happening to them. At least that is what Mom did. (Died '02) And we try to keep making sense out of what is happening. It does make sense to them or as close as possible. It also may be they take their pills or eat and all this has an effect on their body.. And they are normally cold so it didn't surprise me that he was next to a heater. Donna R Do you want to read more about Lewy Body? You can also read the Thistle, the LBD Newsletter. Just click on: http://www.lewybodydementia.org Re: FIL has LBD and PD > > Welcome to LBDcaregivers. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 7, 2006 Report Share Posted January 7, 2006 Alice, I meant to say welcome. This site and the one you can click on after my name, will get you lots of info. It is hard and mostly it is back and forth that LBD patients go from real to somewhere else and my mind couldn't go fast enough or figure out when Mom was where. Being here will catch you up a lot faster than without these good people. All trying to do the same thing you are doing. Keep letting us know about what is happening. It is sometimes helpful to know what part of the country you are in, or what country! Donna R Do you want to read more about Lewy Body? You can also read the Thistle, the LBD Newsletter. Just click on: http://www.lewybodydementia.org FIL has LBD and PD Hello, I am new to the group and want to gain as much information about LBD as I possibly can. I have a 68 year old FIL who was diagnosed with PD two years ago. About 6 months later, he was diagosed with LBD. Since his intial diagnosis, he has declined rapidly. He can no longer walk without the assistance of a cane or walker. He needs A LOT of assistance getting in and out of a bed, cars, and chairs. He has frequent falls. He has difficuly with freezing, rigidity, and tremors. He is taking Sinemet (not sure of the exact dosage) four times daily, but it really isn't helping. His memory is terrible, particularly short term. He becomes fixated on things and ideas very easily and can't let go of them. For instance, he's become " obsessed " with buying hangers everytime he's in a store, though he doesn't need them. He's also convinced that he needs a new truck, though he no longer drives. He argues with his wife that he has a doctor's appointment on a certain day when he doesn't and he just won't let it go. He's become almost anti-social, keeping to himself most of the time. He has lost all facial expression, but is beginning to have a lot of facial grimacing. He used to be a banker, but can't even do simple math now. He gets agitated easily. He left the gas burner on the stove turned on a few weeks ago after he finished cooking breakfast, but blamed it on my husband. He's obsessed with guns and wants to buy more, though he has a large collection already. My MIL fears that he's hidden loaded guns in their house. His grammar, sentence structure, and handwriting have all gotten much worse. His handwriting isn't even legible. Is what I've described here common for someone with LBD? I get amazed to see the differences in him since his diagnosis. I can truly see him becoming either bedridden or wheelchair dependent in the very near future. My MIL cares for him on her own and I'm not sure how much longer she'll be able to do that. Any insight you could offer me would be much appreciated. Thank you. Welcome to LBDcaregivers. Quote Link to comment Share on other sites More sharing options...
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