After two years of cognitive and motor dysfunction I was diagnosed in 2011 with LBD. I was heavily medicated for purposes of daily management. Benzodiazepines worsened symptoms. A classic LBD symptom. I was evaluated by neurology and psychiatry. Eventually neurology told me to "suck it up" and be glad I'm still alive. Definitive diagnosis Will be made at autopsy. Other than Skull base enhancement MRI Scan was negative. In 2013 I miraculously emerged from two years of complete memory loss. I now have transient symptoms. Mild motor dysfunction primarily. LBD or not ?? Interesting isn't it ? Losing two years of memory with motor dysfunction has precipitated severe quality of life changes. Decisions were made based on the LBD diagnosis. Decisions that I now wish could be reversed. More research must be completed before A LBD diagnosis should be made. I feel very sorry Who is going through what I went through from 2008 to 2013. Good luck. God bless
almost 10 years,
amego
said...
Thank you for offering this information on LBD. Most of what I have learned about the disease has come from the Lewy Body Association,Mayo Clinic, websites and literature from the NIH. My husband was diagnosed with LBD in 2010. The behaviors are so unpredictable - times of total confusion moments of being fairly lucid, acting out dreams - swinging arms and legs ,generally tossing/jerking at times talking or shouting. Can no longer follow the sequence of steps to complete a task, early on to present visual hallucinations (people most of the time). Constant shadowing and clinging- wakes from a nap and looks for me - if he is awake and does not see me looks for me (asks "where are you- what are you doing - I could not find you " fact is I may be close by). Takes spells of wandering , most unnerving with this goes on in the middle of the night. I could go on and on with the behaviors. He has been seen by three neurologist, examined and tested by a neuropsychologist - had MRI/CT, physical & occupational therapy. At this time his meds are Aricept,Namenda,Celexa for the LBD. The meds for CHF and Macular Degeneration treatments - well, that's another story. Any one caregiving one with LBD has my complete sympathy and heartfelt prayers.
almost 10 years,
conradnote
said...
Thanks for the clear easily understood write up on LBD. I plan to share this with the two all-male support groups that I lead. Gene Conrad
almost 10 years,
Kyna
said...
I knew about LBD and Alzheimer's but didn't really know what distinguished the two. Now I know; I live in an assisted living facility that has a variety of people in here, from independent to fully assisted. I like to know the difference in the conditions just for my own benefit.
almost 10 years,
Fading memories
said...
very interesting
about 11 years,
a fellow commenter
said...
My husband was diagnosed in 2008 with Parkinson's, but so many of his symptoms didn't seem to fit that diagnosis. Only a year ago, he was finally diagnosed with Lewy Bodies Dementia at the Mayo Clinic. This article helps to clarify some of his symptoms that didn't initially fit in with his diagnosis of Parkinson's. My husband has been acting out his dreams for years, and I've often slept with a pillow between us so I wouldn't get hurt. He also had visual hallucinations early on. We are eager for more information.
about 11 years,
NGrimalkin
said...
LBD was completely new to me.
about 11 years,
Henry Lock
said...
I'd not heard of Lew's until now.
about 11 years,
madmaggie
said...
from what I understand, the diagnosis process is part weeding out other things that could be causing the behavior changes. They do a series of tests, including but not limited to MRI< CT
about 11 years,
Caregivingcoach
said...
Our church is working on ways to support a beloved member who has been diagnosed with Parkinson's with Lewy Body. This will be helpful in framing what some of his issues are and will become. Thanks!
about 11 years,
a fellow commenter
said...
How does one get a dementia diagnoses? My mother is acting very paranoid and thinks everyone is stealing from her. She does not want anyone to visit my dad without her there. She threatens to call police if we go visit dad. Seems like she is losing it can't seem to please her. Could this be dementia she is 88
about 11 years,
madmaggie
said...
I am trying to figure out if my husband has some for of dementia. This shed the light on all the ways he has been changing, and finally something makes sense!
After two years of cognitive and motor dysfunction I was diagnosed in 2011 with LBD. I was heavily medicated for purposes of daily management. Benzodiazepines worsened symptoms. A classic LBD symptom. I was evaluated by neurology and psychiatry. Eventually neurology told me to "suck it up" and be glad I'm still alive. Definitive diagnosis Will be made at autopsy. Other than Skull base enhancement MRI Scan was negative. In 2013 I miraculously emerged from two years of complete memory loss. I now have transient symptoms. Mild motor dysfunction primarily. LBD or not ?? Interesting isn't it ? Losing two years of memory with motor dysfunction has precipitated severe quality of life changes. Decisions were made based on the LBD diagnosis. Decisions that I now wish could be reversed. More research must be completed before A LBD diagnosis should be made. I feel very sorry Who is going through what I went through from 2008 to 2013. Good luck. God bless
Thank you for offering this information on LBD. Most of what I have learned about the disease has come from the Lewy Body Association,Mayo Clinic, websites and literature from the NIH. My husband was diagnosed with LBD in 2010. The behaviors are so unpredictable - times of total confusion moments of being fairly lucid, acting out dreams - swinging arms and legs ,generally tossing/jerking at times talking or shouting. Can no longer follow the sequence of steps to complete a task, early on to present visual hallucinations (people most of the time). Constant shadowing and clinging- wakes from a nap and looks for me - if he is awake and does not see me looks for me (asks "where are you- what are you doing - I could not find you " fact is I may be close by). Takes spells of wandering , most unnerving with this goes on in the middle of the night. I could go on and on with the behaviors. He has been seen by three neurologist, examined and tested by a neuropsychologist - had MRI/CT, physical & occupational therapy. At this time his meds are Aricept,Namenda,Celexa for the LBD. The meds for CHF and Macular Degeneration treatments - well, that's another story. Any one caregiving one with LBD has my complete sympathy and heartfelt prayers.
Thanks for the clear easily understood write up on LBD. I plan to share this with the two all-male support groups that I lead. Gene Conrad
I knew about LBD and Alzheimer's but didn't really know what distinguished the two. Now I know; I live in an assisted living facility that has a variety of people in here, from independent to fully assisted. I like to know the difference in the conditions just for my own benefit.
very interesting
My husband was diagnosed in 2008 with Parkinson's, but so many of his symptoms didn't seem to fit that diagnosis. Only a year ago, he was finally diagnosed with Lewy Bodies Dementia at the Mayo Clinic. This article helps to clarify some of his symptoms that didn't initially fit in with his diagnosis of Parkinson's. My husband has been acting out his dreams for years, and I've often slept with a pillow between us so I wouldn't get hurt. He also had visual hallucinations early on. We are eager for more information.
LBD was completely new to me.
I'd not heard of Lew's until now.
from what I understand, the diagnosis process is part weeding out other things that could be causing the behavior changes. They do a series of tests, including but not limited to MRI< CT
Our church is working on ways to support a beloved member who has been diagnosed with Parkinson's with Lewy Body. This will be helpful in framing what some of his issues are and will become. Thanks!
How does one get a dementia diagnoses? My mother is acting very paranoid and thinks everyone is stealing from her. She does not want anyone to visit my dad without her there. She threatens to call police if we go visit dad. Seems like she is losing it can't seem to please her. Could this be dementia she is 88
I am trying to figure out if my husband has some for of dementia. This shed the light on all the ways he has been changing, and finally something makes sense!