Guest guest Posted April 6, 2003 Report Share Posted April 6, 2003 Hello All, Many of you have mentioned that it would be nice to have a pamphlet about LBD...Something to give to emergency room doctors/nurses, nursing home staff, or home care workers. Do you think we could come up with something that would work in all the different cases? I was thinking we could start with ten items, bullets, or points. Each point would have a footnote guiding the reader to a more detailed discussion. It would be made clear on the pamphlet that this is written by caregivers. Well what do you think...should we start working on this? If you had only ten points to make to an emergency room nurse, doctor, or nursing home worker, what would they be? If you can only think of one thing...post it. If we come up with enough points we can work on the detailed discussion of each point later. Don't worry about how the point sounds...just write it down. We've got great writers in the group for polishing later. Well, we'll see how this goes. If you think this isn't a good idea please post that too. No, my feelings won't be hurt. Hugs Jan Sacramento CA Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 6, 2003 Report Share Posted April 6, 2003 Jan and everyone, here is the info I have from a LBD patients point of view. I think we should incorperate some of these ideas into a phamplet also. They don't really list the medical diaganosis of LBD but they pretty much describe how the patient will react in a lot of cases. Shirley FROM A LEWY BODY PATIENT'S POINT OF VIEW: My Lewy Body symptoms make my life constantly frustrating. There are so many things I can do and want to do - but at any given minute, I suddenly find myself unable to do anything without assistance.Or at times I am overcome with fatigue. Please be patient and give me a bit more time. If you yell at me or act visably irritated I get more confused and will most likely become very agitated. Also If you try to make a sudden change in my routine or schedule I will become confused and agitated. Please take the time to explain and talk in a reassuring kind compasionate manner. I know the staff are very busy, but when you tell me " Hurry " , the stress does make my symptoms even worse. When you roll your eyes or complain that I am asking for too much help, it makes me feel bad. I don't want to overwork anyone but that is the reason I am here. Do you really believe I enjoy not being able to do things for myself. I use to be very indepentant and never dreamed I would have to ask for help for anything. When I wet my diaper or have a bowel movement I am very embarrassed.It is a gross dirty feeling and I am ashamed that I am in this condition. Leaving me this way for hours at a time is even more humilitating and I wish I could just die instead of having to be this way, my eyesight is unpredictible, sometimes I am able to see pretty well other times I can not even make out the food on my plate and don't know what I am eating until it reaches my mouth, Sometimes I can't even tell if I still have food left on my plate. I worry about falling and breaking a hip or wrist, but I want to keep mobile. I appreciate staff understanding this. When my body is working, I am able to move about safely with a walker, handrails and wheel chair or other aides. I have real difficulties with simple tasks like brushing my hair, washing, getting to the toilet on time. It embarrasses me that I can't handle these personal matters as well. I've had Lewy body for over a year, on a good day I can hold a conversation, feed myself and attempt to comb my own hair. I like to be independant. Often, quite unpredictably, I become extra slow, even immobile, and I just can't manage tasks that at other times don't cause trouble. Sometimes for a short time, I literally " freeze " on the spot. A physiotherapist can demonstrate useful strategies to help me become unstuck; don't push or pull me as this may lead to a fall. Mealtimes in the dining room can be really frustrating and embarrassing. It takes me ages to cut my food and get it to my mouth.Sometimes it is impossible to do either. It is often cold before I am half through the meal. And over last year or so, I've also developed problems with swallowing. As a result, there is always too much saliva in my mouth and I drool. Very embarrassing. Also, because of the swallowing difficulties, I worry a lot about choking. On the other hand, one side effect of some of the medications is a dry mouth, so I need a lot of ice water available. The water also helps my speech and is good for the constipation that plagues most LBD patients. Sometimes it may be difficult for me to swallow water, I tend to do better with juices and other thicker liqueds. I get tired very easily. Voluntary movements sometimes may take more effort for a person withLewy Body Disease. On the other hand, it is difficult for a LBD patient to get a good nights sleep: I may need help turning over. If the medications wear off before morning, I awake feeling cramped and stiff, I can't move naturally in bed and it is impossible to fall back to sleep. I may look grouchy or uninterested or I simply may not be able to see or hear you. But please ask me how I'm feeling because I still enjoy conversation.My speech is sometimes difficult to understand: the words get slurred or muffled, and the volume is low because various muscle systems are affected. My slowness to respond is not alway's related to my hearing problem or that my brain is slow - sometimes it just takes awhile for the words to come out! With conscious effort, I am sometimes able to speak more clearly, but I appreciate the staff listening very carefully. Lewy Body Disease is a very lonely and boring condition. Often I feel trapped in my own body. It is hard to have a regular conversation. My clumsy hands make activities such as crafts or games difficult,although I used to enjoy a game cards, bingo, or Scrabble. I'd like to socialize more, to feel like a normal human being. If someone can help me to play a game of bingo or whatever, I would enjoy that. It is too hard for me to manuver the pieces and sometimes I can't even see them and my concentration is not as good as it used to be. But this really doesn't mean I wouldn't enjoy the company if I could have some help. However I don't want to be made to feel stupid or inadaquite in front of everyone _________________________________________________________________ STOP MORE SPAM with the new MSN 8 and get 2 months FREE* http://join.msn.com/?page=features/junkmail Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 7, 2003 Report Share Posted April 7, 2003 Jan, I think the pamphlet is a great idea. I will sit down and think of some main points this week but for now, the only one that sticks out in my life right now is FLUCTUATING! Mom has started refusing to take her meds. Her invisible radio doctor told her she didn't have to take them anymore. It has been a struggle. With one week left to Uncle Sam day, I just might get my taxes finished today. With all I have to do, my thoughts still center on this group. I feel really pissed off about this disease and all the agony it imposes on so many live. When my fellow caregivers are faced with ever-changing battles, I too wish it possible to be at their sides to give them physical support. For now, I will continue the support by sending ribbons of love from my heart to connect each and every one of us in spirit. As Ever Betty Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 7, 2003 Report Share Posted April 7, 2003 Jan, What a fantastic idea. Everytime my Mom has to be sent to the regular hospital I hold my breath. The biggest thing more than anything else. Is to NEVER LEAVE THE PATIENT ALONE. My Mom has been sent to the ER at least 2 times. They do not believe me when I say she will walk away. Most of the people in the ER has no idea what this disease is. All, Many of you have mentioned that it would be nice to have a pamphlet about LBD...Something to give to emergency room doctors/nurses, nursing home staff, or home care workers. Do you think we could come up with something that would work in all the different cases? I was thinking we could start with ten items, bullets, or points. Each point would have a footnote guiding the reader to a more detailed discussion. It would be made clear on the pamphlet that this is written by caregivers. Well what do you think...should we start working on this? If you had only ten points to make to an emergency room nurse, doctor, or nursing home worker, what would they be? If you can only think of one thing...post it. If we come up with enough points we can work on the detailed discussion of each point later. Don't worry about how the point sounds...just write it down. We've got great writers in the group for polishing later. Well, we'll see how this goes. If you think this isn't a good idea please post that too. No, my feelings won't be hurt. Hugs Jan Sacramento CA Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 7, 2003 Report Share Posted April 7, 2003 Hi, Just a passing thought.. A lot of the time people don't even know what LBD is. So a short to the point description of the disease would be the top item of the pamphlet. You tell them that they have AD or PD and LBD and they write first AD or PD on the chart and they totally miss LBD. Maybe a place to list the medications the LO is on at the moment? This could help in times when you are not with the LO and it could even help in an emergency?? In Friendship Dawna In Snowing again soon, NH (New Hampshire, Nashua {for RUTH}) not nursing home, but on the tragic search of one. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 7, 2003 Report Share Posted April 7, 2003 Shirley, Less than two weeks ago my Dad was diagnosed with LBD. The neurologist told us that he had no insight into his present intellectual impairment. This brought confort to me as sometimes I got the feeling that my Dad knew something was wrong but could not express it. I just read your LBD patient's point of view and am now wondering whether my Dad does or does not understand what is happening to him. Can you please provide me with your opinion. Thanks. > Jan and everyone, > here is the info I have from a LBD patients point of view. I think we should > incorperate some of these ideas into a phamplet also. They don't really list > the medical diaganosis of LBD but they pretty much describe how the patient > will react in a lot of cases. Shirley > > > > FROM A LEWY BODY PATIENT'S POINT OF VIEW: > > My Lewy Body symptoms make my life constantly frustrating. > > There are so many things I can do and want to do - but at any given > minute, I suddenly find myself unable to do anything without assistance.Or > at times I am overcome with fatigue. Please be patient and give me a bit > more time. If you yell at me or act visably irritated I get more confused > and will most likely become very agitated. Also If you try to make a sudden > change in my routine or schedule I will become confused and agitated. Please > take the time to explain and talk in a reassuring kind compasionate manner. > I know the staff are very busy, but when you tell me " Hurry " , the stress > does make my symptoms even worse. When you roll your eyes or complain that > I am asking for too much help, it makes me feel bad. I don't want to > overwork anyone but that is the reason I am here. Do you really believe I > enjoy not being able to do things for myself. I use to be very indepentant > and never dreamed I would have to ask for help for anything. When I wet my > diaper or have a bowel movement I am very embarrassed.It is a gross dirty > feeling and I am ashamed that I am in this condition. Leaving me this way > for hours at a time is even more humilitating and I wish I could just die > instead of having to be this way, my eyesight is unpredictible, sometimes I > am able to see pretty well other times I can not even make out the food on > my plate and don't know what I am eating until it reaches my mouth, > Sometimes I can't even tell if I still have food left on my plate. > I worry about falling and breaking a hip or wrist, but I want to keep > mobile. I appreciate staff understanding this. When my body is > working, I am able to move about safely with a walker, handrails and wheel > chair or other aides. I have real difficulties with simple tasks like > brushing my hair, washing, getting to the toilet on time. It embarrasses me > that I can't handle these personal matters as well. > I've had Lewy body for over a year, on a good day I can hold a > conversation, feed myself and attempt to comb my own hair. I like to be > independant. Often, quite unpredictably, I become extra slow, even > immobile, and I just can't manage tasks that at other times don't cause > trouble. > Sometimes for a short time, I literally " freeze " on the spot. A > physiotherapist can demonstrate useful strategies to help me become > unstuck; don't push or pull me as this may lead to a fall. > Mealtimes in the dining room can be really frustrating and embarrassing. > It takes me ages to cut my food and get it to my mouth.Sometimes it is > impossible to do either. It is often cold before I am half through the meal. > And over last year or so, I've also developed problems with swallowing. As a > result, there is always too much saliva in my mouth and I drool. Very > embarrassing. Also, because of the swallowing difficulties, I worry a lot > about choking. > On the other hand, one side effect of some of the medications is a dry > mouth, so I need a lot of ice water available. The water also helps my > speech and is good for the constipation that plagues most LBD patients. > Sometimes it may be difficult for me to swallow water, I tend to do better > with juices and other thicker liqueds. > I get tired very easily. Voluntary movements sometimes may take more effort > for a person withLewy Body Disease. On the other hand, it is difficult for a > LBD patient to get a good nights sleep: I may need help turning over. If > the medications wear off before morning, I awake feeling cramped and stiff, > I can't move naturally in bed and it is impossible to fall back to sleep. > I may look grouchy or uninterested or I simply may not be able to > see or hear you. But please ask me how I'm feeling because I still enjoy > conversation.My speech is sometimes difficult to understand: the words get > slurred or muffled, and the volume is low because various muscle systems are > affected. > My slowness to respond is not alway's related to my hearing problem or > that my brain is slow - sometimes it just takes awhile for the words to come > out! With conscious effort, I am sometimes able to speak more clearly, but > I appreciate the staff listening very carefully. > Lewy Body Disease is a very lonely and boring condition. Often I feel > trapped in my own body. It is hard to have a regular conversation. My clumsy > hands make activities such as crafts or games difficult,although I used to > enjoy a game cards, bingo, or Scrabble. I'd like to socialize more, to feel > like a normal human being. If someone can help me to play a game of bingo or > whatever, I would enjoy that. It is too hard for me to manuver the pieces > and sometimes I can't even see them and my concentration is not as good as > it used to be. But this really doesn't mean I wouldn't enjoy the company if > I could have some help. However I don't want to be made to feel stupid or > inadaquite in front of everyone > > > > _________________________________________________________________ > STOP MORE SPAM with the new MSN 8 and get 2 months FREE* > http://join.msn.com/?page=features/junkmail Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 7, 2003 Report Share Posted April 7, 2003 In my opinion- at least in my mother's case - I don't think she has much of an understanding of her situation at all. She thinks she is dusting when I am dusting. One of the respite care ladies was feeding her when she demanded she did not have time for her because she needed to get up and fix lunch for the men - my nephews that had stopped by! She knows that she is not well but the confusion is so real that is part of her reality. She sees children everywhere and occasionally does not understand why everyone thinks she should take care of so many children. Best wishes.... Colleen in Missouri Re: To Everyone... Shirley, Less than two weeks ago my Dad was diagnosed with LBD. The neurologist told us that he had no insight into his present intellectual impairment. This brought confort to me as sometimes I got the feeling that my Dad knew something was wrong but could not express it. I just read your LBD patient's point of view and am now wondering whether my Dad does or does not understand what is happening to him. Can you please provide me with your opinion. Thanks. > Jan and everyone, > here is the info I have from a LBD patients point of view. I think we should > incorperate some of these ideas into a phamplet also. They don't really list > the medical diaganosis of LBD but they pretty much describe how the patient > will react in a lot of cases. Shirley > > > > FROM A LEWY BODY PATIENT'S POINT OF VIEW: > > My Lewy Body symptoms make my life constantly frustrating. > > There are so many things I can do and want to do - but at any given > minute, I suddenly find myself unable to do anything without assistance.Or > at times I am overcome with fatigue. Please be patient and give me a bit > more time. If you yell at me or act visably irritated I get more confused > and will most likely become very agitated. Also If you try to make a sudden > change in my routine or schedule I will become confused and agitated. Please > take the time to explain and talk in a reassuring kind compasionate manner. > I know the staff are very busy, but when you tell me " Hurry " , the stress > does make my symptoms even worse. When you roll your eyes or complain that > I am asking for too much help, it makes me feel bad. I don't want to > overwork anyone but that is the reason I am here. Do you really believe I > enjoy not being able to do things for myself. I use to be very indepentant > and never dreamed I would have to ask for help for anything. When I wet my > diaper or have a bowel movement I am very embarrassed.It is a gross dirty > feeling and I am ashamed that I am in this condition. Leaving me this way > for hours at a time is even more humilitating and I wish I could just die > instead of having to be this way, my eyesight is unpredictible, sometimes I > am able to see pretty well other times I can not even make out the food on > my plate and don't know what I am eating until it reaches my mouth, > Sometimes I can't even tell if I still have food left on my plate. > I worry about falling and breaking a hip or wrist, but I want to keep > mobile. I appreciate staff understanding this. When my body is > working, I am able to move about safely with a walker, handrails and wheel > chair or other aides. I have real difficulties with simple tasks like > brushing my hair, washing, getting to the toilet on time. It embarrasses me > that I can't handle these personal matters as well. > I've had Lewy body for over a year, on a good day I can hold a > conversation, feed myself and attempt to comb my own hair. I like to be > independant. Often, quite unpredictably, I become extra slow, even > immobile, and I just can't manage tasks that at other times don't cause > trouble. > Sometimes for a short time, I literally " freeze " on the spot. A > physiotherapist can demonstrate useful strategies to help me become > unstuck; don't push or pull me as this may lead to a fall. > Mealtimes in the dining room can be really frustrating and embarrassing. > It takes me ages to cut my food and get it to my mouth.Sometimes it is > impossible to do either. It is often cold before I am half through the meal. > And over last year or so, I've also developed problems with swallowing. As a > result, there is always too much saliva in my mouth and I drool. Very > embarrassing. Also, because of the swallowing difficulties, I worry a lot > about choking. > On the other hand, one side effect of some of the medications is a dry > mouth, so I need a lot of ice water available. The water also helps my > speech and is good for the constipation that plagues most LBD patients. > Sometimes it may be difficult for me to swallow water, I tend to do better > with juices and other thicker liqueds. > I get tired very easily. Voluntary movements sometimes may take more effort > for a person withLewy Body Disease. On the other hand, it is difficult for a > LBD patient to get a good nights sleep: I may need help turning over. If > the medications wear off before morning, I awake feeling cramped and stiff, > I can't move naturally in bed and it is impossible to fall back to sleep. > I may look grouchy or uninterested or I simply may not be able to > see or hear you. But please ask me how I'm feeling because I still enjoy > conversation.My speech is sometimes difficult to understand: the words get > slurred or muffled, and the volume is low because various muscle systems are > affected. > My slowness to respond is not alway's related to my hearing problem or > that my brain is slow - sometimes it just takes awhile for the words to come > out! With conscious effort, I am sometimes able to speak more clearly, but > I appreciate the staff listening very carefully. > Lewy Body Disease is a very lonely and boring condition. Often I feel > trapped in my own body. It is hard to have a regular conversation. My clumsy > hands make activities such as crafts or games difficult,although I used to > enjoy a game cards, bingo, or Scrabble. I'd like to socialize more, to feel > like a normal human being. If someone can help me to play a game of bingo or > whatever, I would enjoy that. It is too hard for me to manuver the pieces > and sometimes I can't even see them and my concentration is not as good as > it used to be. But this really doesn't mean I wouldn't enjoy the company if > I could have some help. However I don't want to be made to feel stupid or > inadaquite in front of everyone > > > > _________________________________________________________________ > STOP MORE SPAM with the new MSN 8 and get 2 months FREE* > http://join.msn.com/?page=features/junkmail Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 11, 2003 Report Share Posted April 11, 2003 While reading this it reminded me of what the Doctor said at MUSC when my mom was first told she had LBD,he said it is a combination of AD and PD actions and that is why the doctors assume such until caregiver pushes to get the right answers and that seems to take a lifetime for a lot of us. I have a lot to say but want to try and get it together first since I just lost mom three weeks ago. I am reading my emails because I don't want to stay away from here for to long. thanks to all for your kind words and prayers at the time. I miss mom terribly but after being her only caregiver for five years it has taken its toll.She loved spring because of her flowers and garden,and her flowers are really beautiful right now so I know she is still with me. My heart breaks each time I see a new name but I know you will get more here than anywhere else so hang tough group. Carolyn in S.C. Re: To Everyone... Hi, Just a passing thought.. A lot of the time people don't even know what LBD is. So a short to the point description of the disease would be the top item of the pamphlet. You tell them that they have AD or PD and LBD and they write first AD or PD on the chart and they totally miss LBD. Maybe a place to list the medications the LO is on at the moment? This could help in times when you are not with the LO and it could even help in an emergency?? In Friendship Dawna In Snowing again soon, NH (New Hampshire, Nashua {for RUTH}) not nursing home, but on the tragic search of one. Quote Link to comment Share on other sites More sharing options...
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