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john14505

Lewy body dementia video

13 posts in this topic

I like this doctors approach alot.His opinion of meds to a minimum makes sense.

 

2 people like this

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For those with diagnosed Lewy Body dementia, what were the prominent symptom markers for this "brand" of dementia versus the other types?

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Thank you so much for posting this program. I wish I had known this information several years ago. It answers a lot of questions for me as caregiver for my husband who was diagnosed with Parkinson's twenty years ago. In the last six years he has developed all of the symptoms of Lewy body dementia. I guess technically for him it would be called Parkinson's dementia. I was not prepared for these symptoms and could have handled things better if I had known. It is of particular interest to me to know that visual perception is effected. I did take him to the ophthalmologist who told me that there was nothing organically wrong with his eyes, but gave no explanation beyond that. Now I know why my husband doesn't recognize me as his wife. I am the other one--an imposter. Why he was always wanting to go home. This was not home to him even though we have lived here for over forty years. If I had known all these things, I could have handled situations much better. Currently my husband is on hospice, totally bedridden, hallucinates, is paranoid, doesn't recognize his surroundings, has severe orthostatic hypotension, etc. The mental aspects of the disease--the Lewy body part--have been much more disabiling and difficult to deal with than the physical other than the low blood pressure issues. But for him, it is a matter of time. His vital signs are good, he has no co-morbid health ussues. He is wasting away in a bedridden situation. Waiting for death is a lonely vigil and as often happens, he will likely die of malnutrition because his body is not efficiently using food or pneumonia from a weakened condition. This is a horrible disease. Thanks again for posting this most informative program. It doesn't take away the pain and grief, but it makes the situation more understandable.

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Dear johnnys: I want to add my thanks too. As I learn about PD it is easy to become overwhelmed and confused, and it is not often I hear someone professional who speaks so plainly and understandably. My next door neighbor has symptoms which I believe represent LBD, and it is indeed a frightening thing to contemplate, knowing we are all on the spectrum at some point. For those of you who are dealing with this problem, you have my admiration (Billrnc) and prayers (Genden69) May the Lord keep us all safe and protect us and our loved ones on this journey.

Edited by swamper

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Hi Gender,

Im glad the video helped.The person I visited had a lot of the symptoms .i couldn't connect much with him but the nurse said he was better in the morning.This disease is treated with different meds than PD.It seems they cant tolerate levodopa and instead use drugs like Aricept,rivastigmine and donepezil.Also any drug like benadryl or a antihistamine can be dangerous with them. is His wife i think would like to see this if she hasn't already.There are treatment on the horizon for this condition so simular but different than Parkinson.Must be hard to find a doctor who specializes with this condition.

It certainly is so different,Gender you have my prayers for both of you.

best

john.

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Hi Gender,

Im glad the video helped.The person I visited had a lot of the symptoms .i couldn't connect much with him but the nurse said he was better in the morning.This disease is treated with different meds than PD.It seems they cant tolerate levodopa and instead use drugs like Aricept,rivastigmine and donepezil.Also any drug like benadryl or a antihistamine can be dangerous with them. is His wife i think would like to see this if she hasn't already.There are treatment on the horizon for this condition so simular but different than Parkinson.Must be hard to find a doctor who specializes with this condition.

It certainly is so different,Gender you have my prayers for both of you.

best

john.

My husband was diagnosed with Parkinson's disease twenty years ago. He has been under the care of excellent Movement Disorder Specialists the entire time. We had to fly a distance to see a MDS until eight years ago when a MDS moved to our area. He did not exhibit Lewy Body symptoms until he started hallucinations about six years ago. His Parkinson's symptoms have been very classic. So his classification is Parkinson's dementia, though it is caused by Lewy bodies. He must still take sinemet because of the Parkinson's. He has always taken no more medication than necessary. After seeing the video, I believe he has followed the normal course of the disease and if one has Parkinson's long enough, the Lewy body symptoms will begin.

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My husband was diagnosed with Parkinson's disease twenty years ago. He has been under the care of excellent Movement Disorder Specialists the entire time. We had to fly a distance to see a MDS until eight years ago when a MDS moved to our area. He did not exhibit Lewy Body symptoms until he started hallucinations about six years ago. His Parkinson's symptoms have been very classic. So his classification is Parkinson's dementia, though it is caused by Lewy bodies. He must still take sinemet because of the Parkinson's. He has always taken no more medication than necessary. After seeing the video, I believe he has followed the normal course of the disease and if one has Parkinson's long enough, the Lewy body symptoms will begin.

Thank you for your frank glimpse of your husbands journey with PD and LBD. Thoughts and prayers for you and your husband. I appreciate your sharing your experiences.

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Thank you so much for posting this program. I wish I had known this information several years ago. It answers a lot of questions for me as caregiver for my husband who was diagnosed with Parkinson's twenty years ago. In the last six years he has developed all of the symptoms of Lewy body dementia. I guess technically for him it would be called Parkinson's dementia. I was not prepared for these symptoms and could have handled things better if I had known. It is of particular interest to me to know that visual perception is effected. I did take him to the ophthalmologist who told me that there was nothing organically wrong with his eyes, but gave no explanation beyond that. Now I know why my husband doesn't recognize me as his wife. I am the other one--an imposter. Why he was always wanting to go home. This was not home to him even though we have lived here for over forty years. If I had known all these things, I could have handled situations much better. Currently my husband is on hospice, totally bedridden, hallucinates, is paranoid, doesn't recognize his surroundings, has severe orthostatic hypotension, etc. The mental aspects of the disease--the Lewy body part--have been much more disabiling and difficult to deal with than the physical other than the low blood pressure issues. But for him, it is a matter of time. His vital signs are good, he has no co-morbid health ussues. He is wasting away in a bedridden situation. Waiting for death is a lonely vigil and as often happens, he will likely die of malnutrition because his body is not efficiently using food or pneumonia from a weakened condition. This is a horrible disease. Thanks again for posting this most informative program. It doesn't take away the pain and grief, but it makes the situation more understandable.

Hard to read this but it's reality.  Take care.

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Dancing Bear, I have Dementia with Lewy Bodies and also very early Alheimer's. How they could tell, I'm not sure, but they seemed sure. Anyway, the single biggest thing about DLB is the fact that it fluctuates so much. One minute here, next gone. One day here, next week gone. One hour gone, two months here. It is all over the lot, and that is one of the hallmarks for diagnosing it as not being Alzheimer's. Also, memory problems are the least of DLB, but mood, behavior, confusion, anxiety, vision, chaos are among the major non-motor stuff. Memory is a big deal, but it just comes and goes with the wind.

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By the way, the Sinemet I started recently seems to be really helping with the muscle stiffness, joints, and walking stuff.

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Dancing Bear, I have Dementia with Lewy Bodies and also very early Alheimer's. How they could tell, I'm not sure, but they seemed sure. Anyway, the single biggest thing about DLB is the fact that it fluctuates so much. One minute here, next gone. One day here, next week gone. One hour gone, two months here. It is all over the lot, and that is one of the hallmarks for diagnosing it as not being Alzheimer's. Also, memory problems are the least of DLB, but mood, behavior, confusion, anxiety, vision, chaos are among the major non-motor stuff. Memory is a big deal, but it just comes and goes with the wind.

 

Thanks BillBRNC, Do you have hallucinations as a DLB specific symptom?

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Dancing Bear, I've had hallucinations going back to before my original diagnosis. Not a huge deal, but more of a curiosity, at least for now. I used to see actual people, animals, and cars, but now I mostly see dark shapes off to the sides or off in the distance. I can't tell any difference since starting Sinemet. I hoping to push on up to 2 pills 25/100 3 times at the end of the week. Currently at one and a half 3 times a day. I think that should just about do the trick for me. My doc wants to wait a month of so to decide about a bedtime dose of something. I do ok at night, but things could be better, but I don't want to mess up the success to date with Sinemet.

Edited by BillBRNC

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