A Lewy Body Patient's Point Of View
Lewy Body symptoms make my life one of constant frustration.
There are so many things I can and want to do for myself; but at any time, I may suddenly find I'm unable to do anything without assistance, and at times I'm overcome with fatigue. Please be patient and allow me a bit more time. I know the staff members are very busy, but when you tell me "Hurry", the stress of something even that simple may make my symptoms even worse. If you yell at me or act visibly irritated, I get more confused and will most likely become very agitated. If you try to make a sudden change in my routine or schedule, that confuses me too. Please, take the time to explain things and talk to me in a reassuring, kind compassionate manner. I don't want to overwork anyone but the reason I'm here is that sometimes, I really do need help. Do you really believe I enjoy not being able to do things for myself? I use to be very independent and never dreamed I'd ever have to ask anyone for help.
When I wet my diaper or have a bowel movement, I'm very embarrassed and I'm ashamed that I'm in this condition. Sometimes I have real difficulties with simple tasks like brushing my hair, washing, or getting to the toilet on time. It embarrasses me that I can't handle these personal matters. On a good day I can sometimes hold a conversation, feed myself and attempt to comb my own hair. But those other days, that's when I need your help.
Often and quite unpredictably, my movements become extra slow, even immobile. Sometimes for a short time, I literally "freeze" on the spot. I worry a lot about falling and breaking a hip or wrist, but I want to keep mobile and independent. I appreciate the staff understanding this. When my body is working, I'm able to move about safely using a walker, a wheelchair or walk belt.
Mealtimes in the dining room can be really frustrating and embarrassing as it takes me ages to cut my food and get it to my mouth. Sometimes it's impossible to do either. The food is often cold before I'm half through the meal. My eyesight is so unpredictable, sometimes I am able to see pretty well; other times I can't even make out the food on my plate and don't know what I'm eating until it reaches my mouth. Sometimes I can't even tell if I still have food left on my plate.
I've also developed problems with swallowing. As a result, there's always too much saliva in my mouth and I drool. It's very embarrassing. Because of the swallowing difficulties, I worry a lot about choking. Water also helps my speech and is good for the constipation that plagues me.
Voluntary movements sometimes take more effort for me, so I get tired very easily. It's difficult for me to get a good night's sleep, as I may need help turning over. If my medications wear off before morning, I may awaken feeling cramped and stiff and since I can't move naturally in bed, it's impossible to fall back to sleep.
Sometimes I may look grouchy or uninterested. It may be I'm simply not able to see you or hear you. But, please ask me how I'm feeling because I still enjoy a good conversation. My speech is sometimes difficult to understand; the words get slurred or muffled and the volume is low because of various muscles being affected. My slowness to respond isn't always related to my hearing problem or that my brain is slow; sometimes it just takes awhile for the words to come out! With a conscious effort on my part, I'm sometimes able to speak more clearly and I appreciate the staff taking a little extra time to listen very carefully.
This disease is a very lonely and boring condition. Often I feel trapped in my own body. My clumsy hands make activities such as crafts or games difficult, although I used to enjoy a game of cards, bingo, crafts… I'd like to socialize more, to feel like a normal human being. If someone can help me with a game of bingo or whatever, I'd enjoy that. It's too hard for me to manoeuvre the pieces and sometimes I can't even see them and my concentration is not as good as it used to be. This really doesn't mean I wouldn't enjoy the company if I could have some help. But I don't want to be made to feel stupid or inadequate in front of others.
I would like nothing better than to resume my independent life. I don't enjoy depending on others for anything. Please remember that I didn't choose to have my life turned upside down. Your patience and understanding is the best medicine for me. Remember that I still have feelings; I still have needs; not so long ago, I was just like everyone else. The best thing you can do for me now is treat me with respect. Encourage me. Don't talk over my head as if I'm not there. I may not respond to your questions or remarks but that doesn't mean I didn't hear you. I don't need to be put to sleep or shoved into a corner; I need to keep as active of a life as possible. Last but not least, please do not compare me to other patients. This disease may have similarities to other diseases, but it is very unique. No two patients display the same symptoms. No one can tell from one minute to the next what my abilities will be at any given moment, so please don't think I am being stubborn or ignorant; the disease is running my body.
I no longer have full control. There is no longer a normal day for me. I had found this on the web sometime in 2008. Don nodded and I cried.
RBD may be earliest marker of the movement disorder (this helped Don's specialist to diagnose the first indication of the Lewy Body - scary!!!)
A relatively rare sleep disorder characterized by acting out dreams during REM sleep -- often violently -- is closely linked to the movement disorder Parkinson's disease and may warn of Parkinson's decades before diagnosis.
People with REM sleep behavior disorder (RBD) do not have normal muscle paralysis during the dream phase of sleep. The loss of motor inhibition is generally accompanied by often frightening dreams, which are "acted out" with arm flailing, kicking, punching, and sometimes, screaming and shouting.
"If patients are running in their dream, they 'run' in their beds. If they are fighting with someone in their dream, their arms may flail wildly. This can be dangerous for the patient and the patient's bed partner," Marina Romero-Ramos, PhD, of Aarhus University in Denmark, told MedPage Today.
The prevalence of RBD has been estimated to be from 0.38% to 1% in the general population, but the sleep disorder is much more common in patients with Parkinson's disease.
An Absolute Must Read. From one who Has Dementia... A Must Read for YOUR family, carer, friends.
Time To Tell The Truth About Dementia….From Someone Living With Dementia By Norrms McNamara. Jan 22, 2018
Things YOU always wanted to know, or SHOULD know about dementia, but THEY were too AFRAID to TELL YOU, and I am sure many others were horrified around the world to learn that THIS information is not being given out, this is “MY ANSWER TO THEM”.
These are just 15 points of what you MAY come to expect after a diagnosis of dementia, WHY don’t they tell you this? and WHY has it taken so long to be told this? especially by a person who is LIVING with this disease ?? I have NO IDEA !!
Lewy Body symptoms make my life one of constant frustration.
There are so many things I can and want to do for myself; but at any time, I may suddenly find I'm unable to do anything without assistance, and at times I'm overcome with fatigue. Please be patient and allow me a bit more time. I know the staff members are very busy, but when you tell me "Hurry", the stress of something even that simple may make my symptoms even worse. If you yell at me or act visibly irritated, I get more confused and will most likely become very agitated. If you try to make a sudden change in my routine or schedule, that confuses me too. Please, take the time to explain things and talk to me in a reassuring, kind compassionate manner. I don't want to overwork anyone but the reason I'm here is that sometimes, I really do need help. Do you really believe I enjoy not being able to do things for myself? I use to be very independent and never dreamed I'd ever have to ask anyone for help.
When I wet my diaper or have a bowel movement, I'm very embarrassed and I'm ashamed that I'm in this condition. Sometimes I have real difficulties with simple tasks like brushing my hair, washing, or getting to the toilet on time. It embarrasses me that I can't handle these personal matters. On a good day I can sometimes hold a conversation, feed myself and attempt to comb my own hair. But those other days, that's when I need your help.
Often and quite unpredictably, my movements become extra slow, even immobile. Sometimes for a short time, I literally "freeze" on the spot. I worry a lot about falling and breaking a hip or wrist, but I want to keep mobile and independent. I appreciate the staff understanding this. When my body is working, I'm able to move about safely using a walker, a wheelchair or walk belt.
Mealtimes in the dining room can be really frustrating and embarrassing as it takes me ages to cut my food and get it to my mouth. Sometimes it's impossible to do either. The food is often cold before I'm half through the meal. My eyesight is so unpredictable, sometimes I am able to see pretty well; other times I can't even make out the food on my plate and don't know what I'm eating until it reaches my mouth. Sometimes I can't even tell if I still have food left on my plate.
I've also developed problems with swallowing. As a result, there's always too much saliva in my mouth and I drool. It's very embarrassing. Because of the swallowing difficulties, I worry a lot about choking. Water also helps my speech and is good for the constipation that plagues me.
Voluntary movements sometimes take more effort for me, so I get tired very easily. It's difficult for me to get a good night's sleep, as I may need help turning over. If my medications wear off before morning, I may awaken feeling cramped and stiff and since I can't move naturally in bed, it's impossible to fall back to sleep.
Sometimes I may look grouchy or uninterested. It may be I'm simply not able to see you or hear you. But, please ask me how I'm feeling because I still enjoy a good conversation. My speech is sometimes difficult to understand; the words get slurred or muffled and the volume is low because of various muscles being affected. My slowness to respond isn't always related to my hearing problem or that my brain is slow; sometimes it just takes awhile for the words to come out! With a conscious effort on my part, I'm sometimes able to speak more clearly and I appreciate the staff taking a little extra time to listen very carefully.
This disease is a very lonely and boring condition. Often I feel trapped in my own body. My clumsy hands make activities such as crafts or games difficult, although I used to enjoy a game of cards, bingo, crafts… I'd like to socialize more, to feel like a normal human being. If someone can help me with a game of bingo or whatever, I'd enjoy that. It's too hard for me to manoeuvre the pieces and sometimes I can't even see them and my concentration is not as good as it used to be. This really doesn't mean I wouldn't enjoy the company if I could have some help. But I don't want to be made to feel stupid or inadequate in front of others.
I would like nothing better than to resume my independent life. I don't enjoy depending on others for anything. Please remember that I didn't choose to have my life turned upside down. Your patience and understanding is the best medicine for me. Remember that I still have feelings; I still have needs; not so long ago, I was just like everyone else. The best thing you can do for me now is treat me with respect. Encourage me. Don't talk over my head as if I'm not there. I may not respond to your questions or remarks but that doesn't mean I didn't hear you. I don't need to be put to sleep or shoved into a corner; I need to keep as active of a life as possible. Last but not least, please do not compare me to other patients. This disease may have similarities to other diseases, but it is very unique. No two patients display the same symptoms. No one can tell from one minute to the next what my abilities will be at any given moment, so please don't think I am being stubborn or ignorant; the disease is running my body.
I no longer have full control. There is no longer a normal day for me. I had found this on the web sometime in 2008. Don nodded and I cried.
RBD may be earliest marker of the movement disorder (this helped Don's specialist to diagnose the first indication of the Lewy Body - scary!!!)
- by Salynn Boyles, Contributing Writer November 04, 2019
A relatively rare sleep disorder characterized by acting out dreams during REM sleep -- often violently -- is closely linked to the movement disorder Parkinson's disease and may warn of Parkinson's decades before diagnosis.
People with REM sleep behavior disorder (RBD) do not have normal muscle paralysis during the dream phase of sleep. The loss of motor inhibition is generally accompanied by often frightening dreams, which are "acted out" with arm flailing, kicking, punching, and sometimes, screaming and shouting.
"If patients are running in their dream, they 'run' in their beds. If they are fighting with someone in their dream, their arms may flail wildly. This can be dangerous for the patient and the patient's bed partner," Marina Romero-Ramos, PhD, of Aarhus University in Denmark, told MedPage Today.
The prevalence of RBD has been estimated to be from 0.38% to 1% in the general population, but the sleep disorder is much more common in patients with Parkinson's disease.
An Absolute Must Read. From one who Has Dementia... A Must Read for YOUR family, carer, friends.
Time To Tell The Truth About Dementia….From Someone Living With Dementia By Norrms McNamara. Jan 22, 2018
Things YOU always wanted to know, or SHOULD know about dementia, but THEY were too AFRAID to TELL YOU, and I am sure many others were horrified around the world to learn that THIS information is not being given out, this is “MY ANSWER TO THEM”.
These are just 15 points of what you MAY come to expect after a diagnosis of dementia, WHY don’t they tell you this? and WHY has it taken so long to be told this? especially by a person who is LIVING with this disease ?? I have NO IDEA !!