Guest guest Posted November 2, 2001 Report Share Posted November 2, 2001 > Hi all, > > Who would I be without the thought? > Sitting here in the sun for the first time today enjoying the moment. > > Wow......this work is amazing. > > Thank you, > Candace Yes it does! I'm laughing at my inner world as you share yours. It's all too familiar. Thanks! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 2, 2001 Report Share Posted November 2, 2001 > Hi all, > > Who would I be without the thought? > Sitting here in the sun for the first time today enjoying the moment. > > Wow......this work is amazing. > > Thank you, > Candace Yes it does! I'm laughing at my inner world as you share yours. It's all too familiar. Thanks! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 2, 2001 Report Share Posted November 2, 2001 > Hi all, > > Who would I be without the thought? > Sitting here in the sun for the first time today enjoying the moment. > > Wow......this work is amazing. > > Thank you, > Candace Yes it does! I'm laughing at my inner world as you share yours. It's all too familiar. Thanks! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 2, 2001 Report Share Posted November 2, 2001 How would you treat your husband and yourself if you weren't able to think these thoughts ? Imagine to look at your husband's face when he is coming home and you cannot think these thought. Close your eyes. What do you see ? werner. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 2, 2001 Report Share Posted November 2, 2001 How would you treat your husband and yourself if you weren't able to think these thoughts ? Imagine to look at your husband's face when he is coming home and you cannot think these thought. Close your eyes. What do you see ? werner. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 2, 2001 Report Share Posted November 2, 2001 How would you treat your husband and yourself if you weren't able to think these thoughts ? Imagine to look at your husband's face when he is coming home and you cannot think these thought. Close your eyes. What do you see ? werner. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 8, 2002 Report Share Posted September 8, 2002 In a message dated 9/8/02 4:39:45 PM Central Daylight Time, kyky@... writes: > I believe his neurologist wants to stick with his Parkinson's diagnosis and > ignore the LBD. Probably because he doesn't know enough about it to know what to DO about it!! Welcome, ebelle. You were wise to do your own research, and what you have described sure does sound like LBD to me!! His age of onset is unusually young - how devastating for you. Cheryl Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 8, 2002 Report Share Posted September 8, 2002 ebelle Hello and welcome to the caregivers group. I am not quite sure what answers you are looking for at this time. What to expect?? Unfortunately there is no definate path this disease follows. I have found with my dad that the Parkinson's and Alzheimer's characteristics presented around the same time. Dad used to fall a lot in the beginning, was confused one day and not so confused the next. He had hallucinations of snakes and people in the beginning yet he doesn't really talk now so I am not sure what is going on internally for him at this point. I know depression can play a very big part in this and my dad fits that description. The days when he is more with it he cries a lot...then I know he is miserable where this disease has taken him. I would suggest to be careful of any neuroleptic medication, for example, Ativan (Lorazepam) Haldol, Zyprexia. My dad currently is taking Zyprexia yet with the help of a psychiatrist we are trying to wean him off it. These neuroleptics, being the anti-psychotics, can have harmful effects on the LBD person. Sometimes the effects can be irreversible and can even cause death. Just please be careful. As for now, I will let you ask questions and hopefully I will be able to help in answering them. If not I, there are many educated people in this group with tons of hands on experience. The hearts in here are overflowing with care and concern for our loved ones and the caregiver. I have printed off your information, as I do all newcomers, and will add you to my ever so growing list of prayers. Remember, you need to take care of you, too!! Sandie Des Moines, IA who's dad was diagnosed 5 yrs ago with LBD, showing symptoms a couple yrs before that...he turned 65 July 31st. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 8, 2002 Report Share Posted September 8, 2002 ebelle, Have you just read the LBD symptoms or have you also read some of our posts. If you have read some of our posts with us talking about our loved ones LBD and you can relate I would definatley get another neurologist opinion. It could be that your neurologist just isn't up on LBD and doesn't really know what it is. If it is just that your husband besides having Parkinsons is somewhat forgetful at times then I would check that aspect with his regular doctor. Forgetfulness can be caused by many things. I for one will be 50 in 6 days and am alway's forgetting things. Perhaps you can let us know some more of his symptoms. Also check on the medications he is taking which can also be the cause of his forgetfulness. Good luck, and welcome to the group that no one wanted to be in. Shirley (mother 75 with LBD diagnosed 9 months ago, some symptoms for 3 or so years.) > >Reply-To: LBDcaregivers >To: LBDcaregivers >Subject: my husband >Date: Sun, 08 Sep 2002 21:38:53 -0000 > >I have been looking for a place to speak to others who are dealing >with this " disease I never heard of " . > >My husband was diagnosed with Parkinson's 2 years ago. I was always >more worried about the cognative aspect of his life. When ever I >mentioned it to his neurologist I got no where. After researching I >came across LBD. Our family Dr. scheduled testing at a nearby >facility. The news was as I expected. The problem now is, what do >I expect? My husband is 54. I believe that what he has is LBD with >Parkinson's " like " symptoms. I think this has been going on for >about 4 years. He still drives and some days is totally with it. >Other days he is forgetful and confused. I don't even know if there >is something I should be doing. I believe his neurologist wants to >stick with his Parkinson's diagnosis and ignore the LBD. > >Any insight would be helpful.....Thanks, ebelle > _________________________________________________________________ Chat with friends online, try MSN Messenger: http://messenger.msn.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 9, 2002 Report Share Posted September 9, 2002 ebelle, I just reread your post and I guess someone did diagnos LBD for your husband. As for your neurologist if he doesn't acknoledge his LBD I would change doctors. Shirley > >Reply-To: LBDcaregivers >To: LBDcaregivers >Subject: Re: my husband >Date: Sun, 08 Sep 2002 22:58:12 -0700 > >ebelle, >Have you just read the LBD symptoms or have you also read some of our >posts. >If you have read some of our posts with us talking about our loved ones LBD >and you can relate I would definatley get another neurologist opinion. It >could be that your neurologist just isn't up on LBD and doesn't really know >what it is. If it is just that your husband besides having Parkinsons is >somewhat forgetful at times then I would check that aspect with his regular >doctor. Forgetfulness can be caused by many things. I for one will be 50 in >6 days and am alway's forgetting things. Perhaps you can let us know some >more of his symptoms. Also check on the medications he is taking which can >also be the cause of his forgetfulness. Good luck, and welcome to the group >that no one wanted to be in. Shirley (mother 75 with LBD diagnosed 9 months >ago, some symptoms for 3 or so years.) > > > > > >Reply-To: LBDcaregivers > >To: LBDcaregivers > >Subject: my husband > >Date: Sun, 08 Sep 2002 21:38:53 -0000 > > > >I have been looking for a place to speak to others who are dealing > >with this " disease I never heard of " . > > > >My husband was diagnosed with Parkinson's 2 years ago. I was always > >more worried about the cognative aspect of his life. When ever I > >mentioned it to his neurologist I got no where. After researching I > >came across LBD. Our family Dr. scheduled testing at a nearby > >facility. The news was as I expected. The problem now is, what do > >I expect? My husband is 54. I believe that what he has is LBD with > >Parkinson's " like " symptoms. I think this has been going on for > >about 4 years. He still drives and some days is totally with it. > >Other days he is forgetful and confused. I don't even know if there > >is something I should be doing. I believe his neurologist wants to > >stick with his Parkinson's diagnosis and ignore the LBD. > > > >Any insight would be helpful.....Thanks, ebelle > > > > > > >_________________________________________________________________ >Chat with friends online, try MSN Messenger: http://messenger.msn.com > _________________________________________________________________ MSN Photos is the easiest way to share and print your photos: http://photos.msn.com/support/worldwide.aspx Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 9, 2002 Report Share Posted September 9, 2002 ebelle, I just reread your post and I guess someone did diagnos LBD for your husband. As for your neurologist if he doesn't acknoledge his LBD I would change doctors. Shirley > >Reply-To: LBDcaregivers >To: LBDcaregivers >Subject: Re: my husband >Date: Sun, 08 Sep 2002 22:58:12 -0700 > >ebelle, >Have you just read the LBD symptoms or have you also read some of our >posts. >If you have read some of our posts with us talking about our loved ones LBD >and you can relate I would definatley get another neurologist opinion. It >could be that your neurologist just isn't up on LBD and doesn't really know >what it is. If it is just that your husband besides having Parkinsons is >somewhat forgetful at times then I would check that aspect with his regular >doctor. Forgetfulness can be caused by many things. I for one will be 50 in >6 days and am alway's forgetting things. Perhaps you can let us know some >more of his symptoms. Also check on the medications he is taking which can >also be the cause of his forgetfulness. Good luck, and welcome to the group >that no one wanted to be in. Shirley (mother 75 with LBD diagnosed 9 months >ago, some symptoms for 3 or so years.) > > > > > >Reply-To: LBDcaregivers > >To: LBDcaregivers > >Subject: my husband > >Date: Sun, 08 Sep 2002 21:38:53 -0000 > > > >I have been looking for a place to speak to others who are dealing > >with this " disease I never heard of " . > > > >My husband was diagnosed with Parkinson's 2 years ago. I was always > >more worried about the cognative aspect of his life. When ever I > >mentioned it to his neurologist I got no where. After researching I > >came across LBD. Our family Dr. scheduled testing at a nearby > >facility. The news was as I expected. The problem now is, what do > >I expect? My husband is 54. I believe that what he has is LBD with > >Parkinson's " like " symptoms. I think this has been going on for > >about 4 years. He still drives and some days is totally with it. > >Other days he is forgetful and confused. I don't even know if there > >is something I should be doing. I believe his neurologist wants to > >stick with his Parkinson's diagnosis and ignore the LBD. > > > >Any insight would be helpful.....Thanks, ebelle > > > > > > >_________________________________________________________________ >Chat with friends online, try MSN Messenger: http://messenger.msn.com > _________________________________________________________________ MSN Photos is the easiest way to share and print your photos: http://photos.msn.com/support/worldwide.aspx Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 9, 2002 Report Share Posted September 9, 2002 In a message dated 2002-09-08 5:39:45 PM Eastern Daylight Time, kyky@... writes: > . He still drives and some days is totally with it. > Other days he is forgetful and confused For everybody's sake take the car keys. Ev Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 9, 2002 Report Share Posted September 9, 2002 In a message dated 9/9/02 9:17:42 AM Central Daylight Time, cindy.vechinski@... writes: > She doesn't talk very much and that is very strange because she was just a > chatter box before! Those personality changes really are hard to take, aren't they? For us the talking was just the opposite. My husband had always been a " quietly reserved " individual. Then he talked up a storm - to me, which was great! I heard sea story after sea story after sea story! Chalked it up to " how nice. " Then once I knew he was sick we would go for a walk and he'd strike up bizarre conversations with total strangers. Once the Aricept kicked in he became more like his old self in that regard. He also developed an emotional flatness that was very frustrating and alienating for me. Now he is affectionate at times and thanks me for his care. I remain grateful . . . Cheryl Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 9, 2002 Report Share Posted September 9, 2002 ebelle, I am sorry to hear about your husband. This is sadly exactly how things started for my MIL (Mother-in-law). She was " with it " on most days, but very forgetful. Forgot birthday's and what day it was. Started to have to write things down on post it notes. Got lost driving in her own neighborhood. Started to forget to eat, and repeated herself constantly. Her once perfected nails and hair were starting to go unattended. Wanted to sleep in her clothes, was paranoid about sounds she heard in the house. The forgetfulness and repeating herself were present symptoms for about 7 years prior. When she was 59, we hit rock bottom. She was starting to call 911 reporting two women were in her home trying to steal her socks. People were always in her house. She would leave trying to " escape " them. One day, at age 59, she was outside in November (this is Minnesota) she was found under a tree with no coat, no shoes, and lying in the fetal position. Things went down hill fast. She lost tons of her cognitive skills. Her personality is much different. She can hardly read, barely write, and could no longer cook or wash her own hair. She doesn't talk very much and that is very strange because she was just a chatter box before! She can no longer get dressed by herself. For us, we saw tons of " downhill " for the first year. Now she seems " status quo " if you will. We have our good days and our bad days, but with her current " cocktail " of meds, we really are doing very well. She lives in a group home and her family is very supportive. She still draws a bit, and will talk to you if you carry the conversation. She eats herself and uses the bathroom herself too. She walks a lot, and she likes to listen to music in her room. She doesn't like to watch a lot of tv which is also a big difference. I guess if your husband really does have LBD, you may see slow but steady changes in his cognitive skill, personality, and short term memory. Get with a neurologist and psychiatrist asap to have a proper assessment. If he does indeed have LBD, I would start tending to legal matters such as obtaining a POA for later use. Read all you can about this disease. Also read prior posts here. There is so much information out there. The more you know the better you will be. Keep us posted and I wish you the best. I will keep you in my prayers. my husband I have been looking for a place to speak to others who are dealing with this " disease I never heard of " . My husband was diagnosed with Parkinson's 2 years ago. I was always more worried about the cognative aspect of his life. When ever I mentioned it to his neurologist I got no where. After researching I came across LBD. Our family Dr. scheduled testing at a nearby facility. The news was as I expected. The problem now is, what do I expect? My husband is 54. I believe that what he has is LBD with Parkinson's " like " symptoms. I think this has been going on for about 4 years. He still drives and some days is totally with it. Other days he is forgetful and confused. I don't even know if there is something I should be doing. I believe his neurologist wants to stick with his Parkinson's diagnosis and ignore the LBD. Any insight would be helpful.....Thanks, ebelle Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 9, 2002 Report Share Posted September 9, 2002 In a message dated 9/9/02 3:49:49 PM Central Daylight Time, cindy.vechinski@... writes: > My MIL won't remember going out, even if you ask her when she just returned I'm so sorry, . How painful for all of you. Greatfully, my husband hasn't reached that point. He does remember the movies and we talk about the news broadcasts sometimes. Bob's memory is also better since he's been on Aricept. He used to ask me over and over and over again about things that had transpired within the last 5 minutes. That was 5-6 yrs ago. The more I read here, the more I can appreciate the Cognitive Neurologist calling him his " poster boy for what can go right. " Bob's worst thing now is his posture. I suspect his demise will be due to airway restriction or some other respiratory issue, probably long before the dementia worsens significantly. That said, I can't do this 24/7 for another 4 years so am actively seeking other opportunities!!! I remain convinced that it is best for your FIL that MIL is in the group home. How sad that many of us come/will come to this. Cheryl Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 9, 2002 Report Share Posted September 9, 2002 In a message dated 9/9/02 3:49:49 PM Central Daylight Time, cindy.vechinski@... writes: > My MIL won't remember going out, even if you ask her when she just returned I'm so sorry, . How painful for all of you. Greatfully, my husband hasn't reached that point. He does remember the movies and we talk about the news broadcasts sometimes. Bob's memory is also better since he's been on Aricept. He used to ask me over and over and over again about things that had transpired within the last 5 minutes. That was 5-6 yrs ago. The more I read here, the more I can appreciate the Cognitive Neurologist calling him his " poster boy for what can go right. " Bob's worst thing now is his posture. I suspect his demise will be due to airway restriction or some other respiratory issue, probably long before the dementia worsens significantly. That said, I can't do this 24/7 for another 4 years so am actively seeking other opportunities!!! I remain convinced that it is best for your FIL that MIL is in the group home. How sad that many of us come/will come to this. Cheryl Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 9, 2002 Report Share Posted September 9, 2002 How nice! I wish my MIL would talk again. I miss her sweet chatter! Funny, my MIL also developed an emotional flatness too. No medications seem to bring those two traits back sadly. I was wondering, can your husband see movies and retain what he saw? My MIL won't remember going out, even if you ask her when she just returned. Last month she went to the dentist, and when her husband came over that night, he asked her how the dentist went, but she said she never went to the dentist. Re: my husband In a message dated 9/9/02 9:17:42 AM Central Daylight Time, cindy.vechinski@... writes: > She doesn't talk very much and that is very strange because she was just a > chatter box before! Those personality changes really are hard to take, aren't they? For us the talking was just the opposite. My husband had always been a " quietly reserved " individual. Then he talked up a storm - to me, which was great! I heard sea story after sea story after sea story! Chalked it up to " how nice. " Then once I knew he was sick we would go for a walk and he'd strike up bizarre conversations with total strangers. Once the Aricept kicked in he became more like his old self in that regard. He also developed an emotional flatness that was very frustrating and alienating for me. Now he is affectionate at times and thanks me for his care. I remain grateful . . . Cheryl Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 9, 2002 Report Share Posted September 9, 2002 How nice! I wish my MIL would talk again. I miss her sweet chatter! Funny, my MIL also developed an emotional flatness too. No medications seem to bring those two traits back sadly. I was wondering, can your husband see movies and retain what he saw? My MIL won't remember going out, even if you ask her when she just returned. Last month she went to the dentist, and when her husband came over that night, he asked her how the dentist went, but she said she never went to the dentist. Re: my husband In a message dated 9/9/02 9:17:42 AM Central Daylight Time, cindy.vechinski@... writes: > She doesn't talk very much and that is very strange because she was just a > chatter box before! Those personality changes really are hard to take, aren't they? For us the talking was just the opposite. My husband had always been a " quietly reserved " individual. Then he talked up a storm - to me, which was great! I heard sea story after sea story after sea story! Chalked it up to " how nice. " Then once I knew he was sick we would go for a walk and he'd strike up bizarre conversations with total strangers. Once the Aricept kicked in he became more like his old self in that regard. He also developed an emotional flatness that was very frustrating and alienating for me. Now he is affectionate at times and thanks me for his care. I remain grateful . . . Cheryl Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 10, 2002 Report Share Posted September 10, 2002 Hi Cheryl. I am happy that you can still enjoy much of Bob's company. How nice for him too! How do you think he would react to a group home setting? My MIL had a hard time at first, but now she is really doing much better with it. Do you think Aricept has better results if the patient stays on it longer? I have not read anything about that. Your husband is lucky to have you. Re: my husband In a message dated 9/9/02 3:49:49 PM Central Daylight Time, cindy.vechinski@... writes: > My MIL won't remember going out, even if you ask her when she just returned I'm so sorry, . How painful for all of you. Greatfully, my husband hasn't reached that point. He does remember the movies and we talk about the news broadcasts sometimes. Bob's memory is also better since he's been on Aricept. He used to ask me over and over and over again about things that had transpired within the last 5 minutes. That was 5-6 yrs ago. The more I read here, the more I can appreciate the Cognitive Neurologist calling him his " poster boy for what can go right. " Bob's worst thing now is his posture. I suspect his demise will be due to airway restriction or some other respiratory issue, probably long before the dementia worsens significantly. That said, I can't do this 24/7 for another 4 years so am actively seeking other opportunities!!! I remain convinced that it is best for your FIL that MIL is in the group home. How sad that many of us come/will come to this. Cheryl Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 10, 2002 Report Share Posted September 10, 2002 Hi Cheryl. I am happy that you can still enjoy much of Bob's company. How nice for him too! How do you think he would react to a group home setting? My MIL had a hard time at first, but now she is really doing much better with it. Do you think Aricept has better results if the patient stays on it longer? I have not read anything about that. Your husband is lucky to have you. Re: my husband In a message dated 9/9/02 3:49:49 PM Central Daylight Time, cindy.vechinski@... writes: > My MIL won't remember going out, even if you ask her when she just returned I'm so sorry, . How painful for all of you. Greatfully, my husband hasn't reached that point. He does remember the movies and we talk about the news broadcasts sometimes. Bob's memory is also better since he's been on Aricept. He used to ask me over and over and over again about things that had transpired within the last 5 minutes. That was 5-6 yrs ago. The more I read here, the more I can appreciate the Cognitive Neurologist calling him his " poster boy for what can go right. " Bob's worst thing now is his posture. I suspect his demise will be due to airway restriction or some other respiratory issue, probably long before the dementia worsens significantly. That said, I can't do this 24/7 for another 4 years so am actively seeking other opportunities!!! I remain convinced that it is best for your FIL that MIL is in the group home. How sad that many of us come/will come to this. Cheryl Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 10, 2002 Report Share Posted September 10, 2002 In a message dated 9/10/02 11:05:54 AM Central Daylight Time, cindy.vechinski@... writes: > How do you think he would react to a group home setting? Hi, , and thanks. A group home setting at this point would be out of the question for him unless he had NO ONE to care for him. The harm it would do to his still competent mind would be " criminal. " I would have to walk away and never look him in the eye again if I considered a group home at this time. It IS something for consideration down the line, though. We saw a new neurologist today, less than an hour from home (beats that 1000 miles to Hopkins!) and his MMSE continues to hold at 23. Does Aricept work better over a longer period of time? I don't know, but don't believe so. I think Bob is doing as well as he is simply because he has a slower-moving form of the disease. Hang in there and please tell our sailor I said HI. Cheryl Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 11, 2002 Report Share Posted September 11, 2002 >We saw a new neurologist today, less than an hour from home (beats >that 1000 miles to Hopkins!) and his MMSE continues to hold at 23. Cheryl, what is MMSE? That is great about the new neurologist that is closer. Barb Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 11, 2002 Report Share Posted September 11, 2002 Sorry, Barb - the MMSE is the Mini-Mental Status Exam. It tests several aspects of cognition to assess how much decline there has been. Day of the week, who's the President, etc. The highest score is 30. Bob's original 22 came up to 23 after he started the Aricept and with exception of one drop to 22, has remained at 23 over the past 3 1/2 yrs. I'm really counting my blessings. Cheryl Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 11, 2002 Report Share Posted September 11, 2002 In a message dated 9/11/02 11:53:56 AM Central Daylight Time, cindy.vechinski@... writes: > neurologist closer to home! How nice! Did you like him? Actually a her, and while Bob likes her, I am reserving judgement. The guy at Hopkins was SUCH a team player and I really appreciated that. Don't quite get the same sense with her, but time will tell. Glad our gal is safe. Cheryl Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 11, 2002 Report Share Posted September 11, 2002 I agree totally about not wanting to put Bob in any home right now. Being he is still sharp, that certainly would be hard. Glad you found a new neurologist closer to home! How nice! Did you like him? The sailor just passed Spain a few days ago and are hopefully moving to friendly waters! Take care! Re: my husband In a message dated 9/10/02 11:05:54 AM Central Daylight Time, cindy.vechinski@... writes: > How do you think he would react to a group home setting? Hi, , and thanks. A group home setting at this point would be out of the question for him unless he had NO ONE to care for him. The harm it would do to his still competent mind would be " criminal. " I would have to walk away and never look him in the eye again if I considered a group home at this time. It IS something for consideration down the line, though. We saw a new neurologist today, less than an hour from home (beats that 1000 miles to Hopkins!) and his MMSE continues to hold at 23. Does Aricept work better over a longer period of time? I don't know, but don't believe so. I think Bob is doing as well as he is simply because he has a slower-moving form of the disease. Hang in there and please tell our sailor I said HI. Cheryl Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.