Hi all: I’ve been on other groups for myself, but now I venture into the world of my husbands 4 (diagnosed dementias) 9 yrs ago!im his sole Caregiver age 84, he is 92 and once again in a ‘skilled nursing’ rehab! This time after premature referral to hospice! I went along not realizing the full ‘direction’ of hospice..a Long horrible experience with over medicating for (comfort) not in Pain!!! He aspirated nearly dying!! He went into delirium.. losing all responsiness.. 3 trips to ERs! My point is this! Some 15-20 neurologists.. none really diagnosing! First diagnosis was Lewy Body (in a study at UTSW.. the study fizzled.. I went on to seek medical help for his TIAs, low flow strokes! Many ER trips.. finally a Pet Scan. Showing perhaps more symptoms of Alzheimer’s…. Then in 6/2021 a diagnosis of Vascular Dementia!!! So… now.. I still seek a Mayo Clinic appt ( not yet accepted for either one of us!!!! Mine lastvyr. Finally got help w/ new surgeon unrelated to dementia. I’m researching Hyperbaruc oxygen therapy hoping it will improve my Hysbands right leg weakness from ‘strokes’ research says perhaps will help. His brain has been negatively affected with the drugs he was given, but he’s beginning to improve. Thank you
My husband had Parkinson's and probably Lewy Body disease before he died. If there's anything you want to ask me about my experiences as his caregiver, feel free to do so.
I would like to find out as much as I can about Lewy Body disease. My sister died from it at 68 years old. She saw doctors for different things but no one picked up on it. One day she called me up and told me she fell twice while walking her dog. I just finished reading a small article about it. I went over to her house and had a hunch that was what she had, she was very active and excised like crazy. It was confirmed by a hospital in NYC. Any information would be appreciated. Thank you very much. Abby
I would like to find out as much as I can about Lewy Body disease. My sister died from it at 68 years old. She saw doctors for different things but no one picked up on it. One day she called me up and told me she fell twice while walking her dog. I just finished reading a small article about it. I went over to her house and had a hunch that was what she had, she was very active and excised like crazy. It was confirmed by a hospital in NYC. Any information would be appreciated. Thank you very much. Abby
Another great resource is to find some local programs for people with dementia and those caring for them. These points of view can really help to understand the disease from a personal standpoint.
You have to be a bit careful but you can get some good perspective from people with LDB, caregivers and what they experience in their daily lives.
Lastly - if you can find someone with LBD that can answer your questions you get a first hand perspective. I call it the “from in here” view.
I’’m not sure how much good I can do - but I am always happy to try answer a question.
I would like to find out as much as I can about Lewy Body disease. My sister died from it at 68 years old. She saw doctors for different things but no one picked up on it. One day she called me up and told me she fell twice while walking her dog. I just finished reading a small article about it. I went over to her house and had a hunch that was what she had, she was very active and excised like crazy. It was confirmed by a hospital in NYC. Any information would be appreciated. Thank you very much. Abby
I don't really know what to add now. My husband died two years ago and some of the experience has been forgotten (thank goodness). He didn't have a problem falling. He had psychosis and got angry a lot. He forgot things, but came out of it sometimes.
I would like to find out as much as I can about Lewy Body disease. My sister died from it at 68 years old. She saw doctors for different things but no one picked up on it. One day she called me up and told me she fell twice while walking her dog. I just finished reading a small article about it. I went over to her house and had a hunch that was what she had, she was very active and excised like crazy. It was confirmed by a hospital in NYC. Any information would be appreciated. Thank you very much. Abby
Another great resource is to find some local programs for people with dementia and those caring for them. These points of view can really help to understand the disease from a personal standpoint.
You have to be a bit careful but you can get some good perspective from people with LDB, caregivers and what they experience in their daily lives.
Lastly - if you can find someone with LBD that can answer your questions you get a first hand perspective. I call it the “from in here” view.
I’’m not sure how much good I can do - but I am always happy to try answer a question.
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So sorry for your loss.
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1 ReactionHi all: I’ve been on other groups for myself, but now I venture into the world of my husbands 4 (diagnosed dementias) 9 yrs ago!im his sole Caregiver age 84, he is 92 and once again in a ‘skilled nursing’ rehab! This time after premature referral to hospice! I went along not realizing the full ‘direction’ of hospice..a Long horrible experience with over medicating for (comfort) not in Pain!!! He aspirated nearly dying!! He went into delirium.. losing all responsiness.. 3 trips to ERs! My point is this! Some 15-20 neurologists.. none really diagnosing! First diagnosis was Lewy Body (in a study at UTSW.. the study fizzled.. I went on to seek medical help for his TIAs, low flow strokes! Many ER trips.. finally a Pet Scan. Showing perhaps more symptoms of Alzheimer’s…. Then in 6/2021 a diagnosis of Vascular Dementia!!! So… now.. I still seek a Mayo Clinic appt ( not yet accepted for either one of us!!!! Mine lastvyr. Finally got help w/ new surgeon unrelated to dementia. I’m researching Hyperbaruc oxygen therapy hoping it will improve my Hysbands right leg weakness from ‘strokes’ research says perhaps will help. His brain has been negatively affected with the drugs he was given, but he’s beginning to improve. Thank you
My prayers are with you!
I would like to find out as much as I can about Lewy Body disease. My sister died from it at 68 years old. She saw doctors for different things but no one picked up on it. One day she called me up and told me she fell twice while walking her dog. I just finished reading a small article about it. I went over to her house and had a hunch that was what she had, she was very active and excised like crazy. It was confirmed by a hospital in NYC. Any information would be appreciated. Thank you very much. Abby
Hi Abby:
I am a LBD with atypical PArknsons (many times both ae present) and have done a lot of research on LBD.
A good place to start is the Lewy Body Association website.
http://Www.Lbda.org
It is a very good launching point for research and info. There are links to a lot of great info and some external sites to give a broader picture.
You can also look at is the National Institute on Aging article:
https://www.nia.nih.gov/health/what-lewy-body-dementia-causes-symptoms-and-treatments
Of course : https://www.mayoclinic.org/diseases-conditions/lewy-body-dementia/symptoms-causes/syc-20352025
Another great resource is to find some local programs for people with dementia and those caring for them. These points of view can really help to understand the disease from a personal standpoint.
You have to be a bit careful but you can get some good perspective from people with LDB, caregivers and what they experience in their daily lives.
Lastly - if you can find someone with LBD that can answer your questions you get a first hand perspective. I call it the “from in here” view.
I’’m not sure how much good I can do - but I am always happy to try answer a question.
Peace
Larry H.
“From In Here”
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2 ReactionsI don't really know what to add now. My husband died two years ago and some of the experience has been forgotten (thank goodness). He didn't have a problem falling. He had psychosis and got angry a lot. He forgot things, but came out of it sometimes.
Hi @abbylaneeh, I'd like to add my welcome. I invite you to follow the blog called Dementia Hub here https://connect.mayoclinic.org/blog/dementia-hub/ to learn more about dementia and Lewy Body disease.
What questions do you have from members here who are both people living with Lewy body or caring for someone living with Lewy body?
Thank you very much, I appreciate all the information. I will read through it all. Abby