Guest guest Posted March 3, 2012 Report Share Posted March 3, 2012 Dear , This group has been a godsend to me. My Mom, who will be 78 on Monday, has had LBD for at least 12 years. It is a difficult struggle, but you will get lots of wonderful information and support on this site. If the excelon patch isn't working, you might want to talk to the doctor about aricept and namenda. The aricept helped quite a bit in the beginning, and when the dementia progressed more, we added the namenda. Namenda seems to work, too, but it did make my Mom more drowsy. See if you can become part of a support group that meets usually once a month - it is a wonderful help. A sad, but warm welcome to our group Helene in NY > > My mother who has been diagnosed with LBD since Thanksgiving 2011 was recently placed on a low dose of serequiel, ti help her to sleep and with hallucinations. It did the exact opposite the hallucinations increased tremendously. Dr said we could stop the med, and that it seems her dementia is progressing faster then she would like to think it would wants her to see a neurologist sooner then may. Mom is currently taking the exelon patch and has had that doseage increased 3 times. We are at a loss for being able to locate good solid information regarding LBD symptoms and stages. Mom is 73 and we have seen drastic changes in memory and ability to do things. At times we feel all alone and doing search after search and coming up with mis-information. I have read that life expectancy is 6-8 yrs and was unsure if that was true? I know truly none of us know when its our time to be called home to Jesus. Any helpful comments etc.... are so very much welcomed and appreciated. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 5, 2012 Report Share Posted March 5, 2012 , One of the problems with LBD is that there is no clear roadmap. You will find several different versions of dementia stages and LBD stages. With LBD, though, your mom could be at a mid stage one day and exhibit the behavior of an early stage the next. LBD is erratic and so hard to predict. A lot of people aren't diagnosed until they really are in the middle stages, but they can still have extremely cognizant days, too. I'm a person who likes to have progress information, would like to be able to predict what is going to happen, would like to know what might possibly happen so that I can be ready for it. It has helped to know a bit about cognition levels as they progress, as well as possible behaviors. No doubt about that. But don't put too much stock in the various scales beyond the general early, mid-, late stage diagnosis. Really, there are surprises almost daily. If a doctor does say your mom is in a particular stage, especially if they give you a number, like level 3.0, 4.0, etc. ask them what the scale it is that they are using and what the stage, or level number means. A lot of doctors will have a pamphlet or information sheet about the various stages and what each could include. also, there has been a lot of discussion about stages at www.lbda.org. Do a search at that website, as well. Life expectancy is very hard to predict. Partly because many LBD patients are well progressed into the disease before it is diagnosed, so it is very hard to identify when it started for them. Another reason is that most dementia patients, LBD or otherwise, encounter another illness that takes them before LBD can. They, like my mom, are the lucky ones. There is a reason pneumonia is called " the old man's friend. " If LBD progresses without something like this, it can become a horrendous experience. My mom passed this month from pneumonia, just as she was starting to lose the motor control in her hands. I am so glad she didn't have to go through that and the losses that would have followed. Absolutely, take the doctor's advice and see the neurologist - or better yet, see a neuropsychiatrist if you can. The neurologist can help you with that. As good as primary care doctors are, so few doctors know very much about LBD that confirmation of the diagnosis from a specialist is really important. A word about medications, too. LBD, most dementias and, to be truthful, most illnesses involving the mind and behavior, are different for each patient. A medication that works for one patient may not work for another, regardless of the size of the dose. A medication that works for one patient might have a truly bad effect on another. This is where medicine becomes more of an art than a science. And the specialist becomes more of an artist. It is important to develop the right " cocktail " of medications for the best effect. And once you do, there is no guarantee on how long that particular mix will work. It's a matter of constant monitoring and adjustment. Now that I have given you a thoroughly gloomy picture, I hope you will see some good days, too. Take each day one at a time - one moment at a time - and you will see some remarkable things. You'll probably see some traits in your mom that you never knew were there. If you watch with an open mind and heart, you may even see times when your mom seems to be on a different plain - one foot in our world and one in another. And those moments aren't all in late stages, either. I found that talking with my mom (me doing the talking, her gesturing) about what she saw in her hallucinations made them less scary for her. I think a frustration comes from trying to fit what her world is becoming into the world she knew where everything made sense. It does help to accept that she will have a different reality as LBD progresses and just go with it. Think of dementia as cognitive regression. Don't expect adult behavior, or mom behavior, anymore. In thought, in behavior, your mom is getting younger - regardless of what her appearance is (though my mom's face softened, her expression becoming younger over time). This helped me. Patience, open minds and hearts and somewhere to blow off steam are needed to get through this. We're with you and will help when we can. Kate On Sat, Mar 3, 2012 at 10:22 AM, jenniferporterlove < jenniferporterlove@...> wrote: > ** > > > My mother who has been diagnosed with LBD since Thanksgiving 2011 was > recently placed on a low dose of serequiel, ti help her to sleep and with > hallucinations. It did the exact opposite the hallucinations increased > tremendously. Dr said we could stop the med, and that it seems her dementia > is progressing faster then she would like to think it would wants her to > see a neurologist sooner then may. Mom is currently taking the exelon patch > and has had that doseage increased 3 times. We are at a loss for being able > to locate good solid information regarding LBD symptoms and stages. Mom is > 73 and we have seen drastic changes in memory and ability to do things. At > times we feel all alone and doing search after search and coming up with > mis-information. I have read that life expectancy is 6-8 yrs and was unsure > if that was true? I know truly none of us know when its our time to be > called home to Jesus. Any helpful comments etc.... are so very much > welcomed and appreciated. > > > -- Kate Knapp, OIT University of Minnesota You were born with certain gifts and talents. In kindergarten you were taught to share. The world needs all of the gifts it can get. Don’t be shy. 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Guest guest Posted March 5, 2012 Report Share Posted March 5, 2012 , One of the problems with LBD is that there is no clear roadmap. You will find several different versions of dementia stages and LBD stages. With LBD, though, your mom could be at a mid stage one day and exhibit the behavior of an early stage the next. LBD is erratic and so hard to predict. A lot of people aren't diagnosed until they really are in the middle stages, but they can still have extremely cognizant days, too. I'm a person who likes to have progress information, would like to be able to predict what is going to happen, would like to know what might possibly happen so that I can be ready for it. It has helped to know a bit about cognition levels as they progress, as well as possible behaviors. No doubt about that. But don't put too much stock in the various scales beyond the general early, mid-, late stage diagnosis. Really, there are surprises almost daily. If a doctor does say your mom is in a particular stage, especially if they give you a number, like level 3.0, 4.0, etc. ask them what the scale it is that they are using and what the stage, or level number means. A lot of doctors will have a pamphlet or information sheet about the various stages and what each could include. also, there has been a lot of discussion about stages at www.lbda.org. Do a search at that website, as well. Life expectancy is very hard to predict. Partly because many LBD patients are well progressed into the disease before it is diagnosed, so it is very hard to identify when it started for them. Another reason is that most dementia patients, LBD or otherwise, encounter another illness that takes them before LBD can. They, like my mom, are the lucky ones. There is a reason pneumonia is called " the old man's friend. " If LBD progresses without something like this, it can become a horrendous experience. My mom passed this month from pneumonia, just as she was starting to lose the motor control in her hands. I am so glad she didn't have to go through that and the losses that would have followed. Absolutely, take the doctor's advice and see the neurologist - or better yet, see a neuropsychiatrist if you can. The neurologist can help you with that. As good as primary care doctors are, so few doctors know very much about LBD that confirmation of the diagnosis from a specialist is really important. A word about medications, too. LBD, most dementias and, to be truthful, most illnesses involving the mind and behavior, are different for each patient. A medication that works for one patient may not work for another, regardless of the size of the dose. A medication that works for one patient might have a truly bad effect on another. This is where medicine becomes more of an art than a science. And the specialist becomes more of an artist. It is important to develop the right " cocktail " of medications for the best effect. And once you do, there is no guarantee on how long that particular mix will work. It's a matter of constant monitoring and adjustment. Now that I have given you a thoroughly gloomy picture, I hope you will see some good days, too. Take each day one at a time - one moment at a time - and you will see some remarkable things. You'll probably see some traits in your mom that you never knew were there. If you watch with an open mind and heart, you may even see times when your mom seems to be on a different plain - one foot in our world and one in another. And those moments aren't all in late stages, either. I found that talking with my mom (me doing the talking, her gesturing) about what she saw in her hallucinations made them less scary for her. I think a frustration comes from trying to fit what her world is becoming into the world she knew where everything made sense. It does help to accept that she will have a different reality as LBD progresses and just go with it. Think of dementia as cognitive regression. Don't expect adult behavior, or mom behavior, anymore. In thought, in behavior, your mom is getting younger - regardless of what her appearance is (though my mom's face softened, her expression becoming younger over time). This helped me. Patience, open minds and hearts and somewhere to blow off steam are needed to get through this. We're with you and will help when we can. Kate On Sat, Mar 3, 2012 at 10:22 AM, jenniferporterlove < jenniferporterlove@...> wrote: > ** > > > My mother who has been diagnosed with LBD since Thanksgiving 2011 was > recently placed on a low dose of serequiel, ti help her to sleep and with > hallucinations. It did the exact opposite the hallucinations increased > tremendously. Dr said we could stop the med, and that it seems her dementia > is progressing faster then she would like to think it would wants her to > see a neurologist sooner then may. Mom is currently taking the exelon patch > and has had that doseage increased 3 times. We are at a loss for being able > to locate good solid information regarding LBD symptoms and stages. Mom is > 73 and we have seen drastic changes in memory and ability to do things. At > times we feel all alone and doing search after search and coming up with > mis-information. I have read that life expectancy is 6-8 yrs and was unsure > if that was true? I know truly none of us know when its our time to be > called home to Jesus. Any helpful comments etc.... are so very much > welcomed and appreciated. > > > -- Kate Knapp, OIT University of Minnesota You were born with certain gifts and talents. In kindergarten you were taught to share. The world needs all of the gifts it can get. Don’t be shy. 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Guest guest Posted March 5, 2012 Report Share Posted March 5, 2012 , One of the problems with LBD is that there is no clear roadmap. You will find several different versions of dementia stages and LBD stages. With LBD, though, your mom could be at a mid stage one day and exhibit the behavior of an early stage the next. LBD is erratic and so hard to predict. A lot of people aren't diagnosed until they really are in the middle stages, but they can still have extremely cognizant days, too. I'm a person who likes to have progress information, would like to be able to predict what is going to happen, would like to know what might possibly happen so that I can be ready for it. It has helped to know a bit about cognition levels as they progress, as well as possible behaviors. No doubt about that. But don't put too much stock in the various scales beyond the general early, mid-, late stage diagnosis. Really, there are surprises almost daily. If a doctor does say your mom is in a particular stage, especially if they give you a number, like level 3.0, 4.0, etc. ask them what the scale it is that they are using and what the stage, or level number means. A lot of doctors will have a pamphlet or information sheet about the various stages and what each could include. also, there has been a lot of discussion about stages at www.lbda.org. Do a search at that website, as well. Life expectancy is very hard to predict. Partly because many LBD patients are well progressed into the disease before it is diagnosed, so it is very hard to identify when it started for them. Another reason is that most dementia patients, LBD or otherwise, encounter another illness that takes them before LBD can. They, like my mom, are the lucky ones. There is a reason pneumonia is called " the old man's friend. " If LBD progresses without something like this, it can become a horrendous experience. My mom passed this month from pneumonia, just as she was starting to lose the motor control in her hands. I am so glad she didn't have to go through that and the losses that would have followed. Absolutely, take the doctor's advice and see the neurologist - or better yet, see a neuropsychiatrist if you can. The neurologist can help you with that. As good as primary care doctors are, so few doctors know very much about LBD that confirmation of the diagnosis from a specialist is really important. A word about medications, too. LBD, most dementias and, to be truthful, most illnesses involving the mind and behavior, are different for each patient. A medication that works for one patient may not work for another, regardless of the size of the dose. A medication that works for one patient might have a truly bad effect on another. This is where medicine becomes more of an art than a science. And the specialist becomes more of an artist. It is important to develop the right " cocktail " of medications for the best effect. And once you do, there is no guarantee on how long that particular mix will work. It's a matter of constant monitoring and adjustment. Now that I have given you a thoroughly gloomy picture, I hope you will see some good days, too. Take each day one at a time - one moment at a time - and you will see some remarkable things. You'll probably see some traits in your mom that you never knew were there. If you watch with an open mind and heart, you may even see times when your mom seems to be on a different plain - one foot in our world and one in another. And those moments aren't all in late stages, either. I found that talking with my mom (me doing the talking, her gesturing) about what she saw in her hallucinations made them less scary for her. I think a frustration comes from trying to fit what her world is becoming into the world she knew where everything made sense. It does help to accept that she will have a different reality as LBD progresses and just go with it. Think of dementia as cognitive regression. Don't expect adult behavior, or mom behavior, anymore. In thought, in behavior, your mom is getting younger - regardless of what her appearance is (though my mom's face softened, her expression becoming younger over time). This helped me. Patience, open minds and hearts and somewhere to blow off steam are needed to get through this. We're with you and will help when we can. Kate On Sat, Mar 3, 2012 at 10:22 AM, jenniferporterlove < jenniferporterlove@...> wrote: > ** > > > My mother who has been diagnosed with LBD since Thanksgiving 2011 was > recently placed on a low dose of serequiel, ti help her to sleep and with > hallucinations. It did the exact opposite the hallucinations increased > tremendously. Dr said we could stop the med, and that it seems her dementia > is progressing faster then she would like to think it would wants her to > see a neurologist sooner then may. Mom is currently taking the exelon patch > and has had that doseage increased 3 times. We are at a loss for being able > to locate good solid information regarding LBD symptoms and stages. Mom is > 73 and we have seen drastic changes in memory and ability to do things. At > times we feel all alone and doing search after search and coming up with > mis-information. I have read that life expectancy is 6-8 yrs and was unsure > if that was true? I know truly none of us know when its our time to be > called home to Jesus. Any helpful comments etc.... are so very much > welcomed and appreciated. > > > -- Kate Knapp, OIT University of Minnesota You were born with certain gifts and talents. In kindergarten you were taught to share. The world needs all of the gifts it can get. Don’t be shy. 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