Guest guest Posted March 6, 2008 Report Share Posted March 6, 2008 Hi Jan, Welcome to our site. The first thing I'd like to ask you is what other medications your Mom is taking. I want to be sure you know that there are meds she should not be on. It is possible that the Exelon is making her worse. It doesn't work for everyone with LBD. When she had the bout of pneumonia and hallucinations, was she put on any anti-psychotics? If so, this could definitely have contributed to her decline. Please let us know what meds she is currently taking. Have you considered an anti-depresssant? " jan_stahmer " <jrstahmer@hotmai l.com> To Sent by: LBDcaregivers LBDcaregivers@yah cc oogroups.com Subject Martha Igene 03/06/2008 02:01 PM Please respond to LBDcaregivers@yah oogroups.com Hello everyone.......... My sweet gentle Mother (83) was diagnosed with DLB @ a month ago but I feel that her sympthoms began 2 yrs. ago. She was a 'firecracker', working and driving until 81. She spent appx. 1 1/2 yrs. isolated at home and I beleive, that is when she began to deteritorate. Five yrs. ago she experienced a bout with pneumonia and hallucinations. Her Dr. put her on Aricept. Gradually her memory faded, depression set in and her personality changed dramatically. In May(07)I spent ten days with her ( My home and family is in Va.) At that time, she could take care of her ADL but language and a masked face were present. Within the last six months, she has been unable to care for herself. I have been with her 24/7 since Christmas (except for two short trips home to check on my business.) Her nerologist placed her on the Exelon patch, it has been two weeks and she seems even more confused and unstable on her feet. I am learning as I go and trying my best to be patient and understanding. Our family had considered placement in a ALF (The neighborhood)but have decided to wait b/c I am not sure how she would adjust to such a dramatic change. My days are long and I answer the same questions over and over. Enjoy reading the posts and learning more about this type of dementia. Trying to prepare myself for the future and how I can best help my Mom. Thanks in advance.. Jan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 6, 2008 Report Share Posted March 6, 2008 Hello Jan (another Jan), welcome to a place of learning and sharing. I know this group can help. They always do. Please don't ever feel sensitive about taking or rejecting advise. It is always up to you to take all the comments and use what fits your situation best. You make the final call. We just throw our two cents out, from our own experiences. We hope you will share more about your Mother and yourself, as you find time. Take time for you and to be happy. Love a lot, it makes your face look happy, Imogene In a message dated 3/6/2008 12:58:01 PM Central Standard Time, jrstahmer@... writes: Hello everyone.......... My sweet gentle Mother (83) was diagnosed with DLB @ a month ago but I feel that her sympthoms began 2 yrs. ago. She was a 'firecracker', working and driving until 81. She spent appx. 1 1/2 yrs. isolated at home and I beleive, that is when she began to deteritorate. Five yrs. ago she experienced a bout with pneumonia and hallucinations. Her Dr. put her on Aricept. Gradually her memory faded, depression set in and her personality changed dramatically. In May(07)I spent ten days with her ( My home and family is in Va.) At that time, she could take care of her ADL but language and a masked face were present. Within the last six months, she has been unable to care for herself. I have been with her 24/7 since Christmas (except for two short trips home to check on my business.) Her nerologist placed her on the Exelon patch, it has been two weeks and she seems even more confused and unstable on her feet. I am learning as I go and trying my best to be patient and understanding. Our family had considered placement in a ALF (The neighborhood)but have decided to wait b/c I am not sure how she would adjust to such a dramatic change. My days are long and I answer the same questions over and over. Enjoy reading the posts and learning more about this type of dementia. Trying to prepare myself for the future and how I can best help my Mom. Thanks in advance.. Jan **************It's Tax Time! Get tips, forms, and advice on AOL Money & Finance. (http://money.aol.com/tax?NCID=aolprf00030000000001) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 6, 2008 Report Share Posted March 6, 2008 Welcome to the board Jan. What dosage is your mom on for the Exelon Patch. posted in the past that it should be 4.6mg/24 patch - see here: http://health.groups.yahoo.com/group/LBDcaregivers/message/68497 The following post has some of the best links about LBD (IMO): http://health.groups.yahoo.com/group/LBDcaregivers/message/73257 My mother did well w/ Celexa (antidepressant) - she was still a bit teary, but less weepy. Should you have any other questions - let us know! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 6, 2008 Report Share Posted March 6, 2008 Dear Jan, Welcome to our site from me, too. Folks here have saved my sanity many times, and the comfort, guidance and acceptance are amazing. We are all together with our loved ones on a journey, what some call the Lewy Body roller coaster ride. And this is the place that will help keep you buckled safely in your seat. I am so sorry to learn about your mom. My mom, too, has LBD, along with parkinson's. It took us a long time to get the proper diagnosis. And we had to try two of the three " gold standard " LBD meds. That's true for many of our loved ones. My mom could not tolerate Exelon, even the smallest dosages caused her trouble walking and her hands curled up into balls. She has been successful on Razadyne for nearly 5 years. A good MD can work with the various meds that help the symptoms of LBD. When one med doesn't work, he or she may adjust the dosage (up or down) or slowly discontinue one and try another. The MD will also ensure there are no bad interactions with any other meds your mom be taking. Our loved ones don't all respond the same way to meds. But hang in there: LBD is a rotten disease, but symptoms can be treated. Please stay in touch with us. This group really cares about each other, and the support shared here is unlike anything else. I'll be keeping your mom - and you - in my prayers. Peace, Lin Iward27663@... wrote: Hello Jan (another Jan), welcome to a place of learning and sharing. I know this group can help. They always do. Please don't ever feel sensitive about taking or rejecting advise. It is always up to you to take all the comments and use what fits your situation best. You make the final call. We just throw our two cents out, from our own experiences. We hope you will share more about your Mother and yourself, as you find time. Take time for you and to be happy. Love a lot, it makes your face look happy, Imogene In a message dated 3/6/2008 12:58:01 PM Central Standard Time, jrstahmer@... writes: Hello everyone.......... My sweet gentle Mother (83) was diagnosed with DLB @ a month ago but I feel that her sympthoms began 2 yrs. ago. She was a 'firecracker', working and driving until 81. She spent appx. 1 1/2 yrs. isolated at home and I beleive, that is when she began to deteritorate. Five yrs. ago she experienced a bout with pneumonia and hallucinations. Her Dr. put her on Aricept. Gradually her memory faded, depression set in and her personality changed dramatically. In May(07)I spent ten days with her ( My home and family is in Va.) At that time, she could take care of her ADL but language and a masked face were present. Within the last six months, she has been unable to care for herself. I have been with her 24/7 since Christmas (except for two short trips home to check on my business.) Her nerologist placed her on the Exelon patch, it has been two weeks and she seems even more confused and unstable on her feet. I am learning as I go and trying my best to be patient and understanding. Our family had considered placement in a ALF (The neighborhood)but have decided to wait b/c I am not sure how she would adjust to such a dramatic change. My days are long and I answer the same questions over and over. Enjoy reading the posts and learning more about this type of dementia. Trying to prepare myself for the future and how I can best help my Mom. Thanks in advance.. Jan **************It's Tax Time! Get tips, forms, and advice on AOL Money & Finance. (http://money.aol.com/tax?NCID=aolprf00030000000001) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 7, 2008 Report Share Posted March 7, 2008 Hi, Jan! Welcome to the family!! I can relate to much of your story. We also think my mother had it quite a while before we realized what was going on. She was misdiagnosed with PD and we went with that for several years until my sister heard about LBD quite accidentally. Gladys -- Martha Igene Hello everyone.......... My sweet gentle Mother (83) was diagnosed with DLB @ a month ago but I feel that her sympthoms began 2 yrs. ago. She was a 'firecracker', working and driving until 81. She spent appx. 1 1/2 yrs. isolated at home and I beleive, that is when she began to deteritorate. Five yrs. ago she experienced a bout with pneumonia and hallucinations. Her Dr. put her on Aricept. Gradually her memory faded, depression set in and her personality changed dramatically. In May(07)I spent ten days with her ( My home and family is in Va.) At that time, she could take care of her ADL but language and a masked face were present. Within the last six months, she has been unable to care for herself. I have been with her 24/7 since Christmas (except for two short trips home to check on my business.) Her nerologist placed her on the Exelon patch, it has been two weeks and she seems even more confused and unstable on her feet. I am learning as I go and trying my best to be patient and understanding. Our family had considered placement in a ALF (The neighborhood)but have decided to wait b/c I am not sure how she would adjust to such a dramatic change. My days are long and I answer the same questions over and over. Enjoy reading the posts and learning more about this type of dementia. Trying to prepare myself for the future and how I can best help my Mom. Thanks in advance.. Jan Welcome to LBDcaregivers. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 7, 2008 Report Share Posted March 7, 2008 HI Jan, I'm wondering why the doctor switched your mom to the Exelon? Maybe Exelon isn't a good fit for her? I wish I could help you with the blue fingers but I haven't seen that before. Has this been happening only since the exelon switch? Hopefully a member who is familiar with this will help you out there (forgive the pun). Courage Martha Igene Hello......... My mother's fingers will turn a pale blue sometimes, I have noticed swelling in the AM. Do not know if it is her BP, bad circulation or a temperture drop? This diagnosis (DLB) is new for me and I am learning everyday. She has been on Aricept for five yrs. only recently being switched to Exelon Patch (4.2mg). She seems more confused and unstable on her feet. She takes a B12 vitamin, 10mg Crestor (BP), 20mg Benacor (Cholestrol). She has a good appetite but is sometimes constipated. She has a mental block when it is time to take hers meds. Enjoy the posts and learning more about DLB. Thanks, Jan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 7, 2008 Report Share Posted March 7, 2008 Hi, Jan - Okay, now I see your mom was on another dementia med previously. I have the same question as Courage: what caused the doc to switch? It certainly could be that she's among the group who can't handle Ex. As I said, my mom was on Razadyne for 5 years, couldn't take Ex, and is now back on Raz. None of the meds will work miracles after a certain point in the disease, but if she is having more trouble - not less - you might consider going back to Aricept. Blue fingers could signal circulation problems that might be caused by several different things. Orthostatic hypotension (OH) is fairly common in LBD. The BP can drop very low quite suddenly. For my mom, who gets blue fingers and toes, OH often occurs when she gets up after sitting or lying down for long periods - but also sometimes for no reason at all. Her BP also goes up unexpectedly. The doc wanted to put her on meds to lower BP, but I learned from the geriatrician that would not be good for her. Has your mom's Crestor or Benacor doses been changed lately? Are her blue fingers a recent occurence? Swelling could be related to many things, too - is it new with the Exelon? The drugs your mom is on are known to contribute to constipation, and it is a common problem in LBD and in the elderly in general. Be cautious about what you use: some laxatives are very hard on older bodies. I believe there is a link to this subject. My computer is fire-walled so I can't direct you, but others here will be able to. Keep us posted. Lin gaat wrote: HI Jan, I'm wondering why the doctor switched your mom to the Exelon? Maybe Exelon isn't a good fit for her? I wish I could help you with the blue fingers but I haven't seen that before. Has this been happening only since the exelon switch? Hopefully a member who is familiar with this will help you out there (forgive the pun). Courage Martha Igene Hello......... My mother's fingers will turn a pale blue sometimes, I have noticed swelling in the AM. Do not know if it is her BP, bad circulation or a temperture drop? This diagnosis (DLB) is new for me and I am learning everyday. She has been on Aricept for five yrs. only recently being switched to Exelon Patch (4.2mg). She seems more confused and unstable on her feet. She takes a B12 vitamin, 10mg Crestor (BP), 20mg Benacor (Cholestrol). She has a good appetite but is sometimes constipated. She has a mental block when it is time to take hers meds. Enjoy the posts and learning more about DLB. Thanks, Jan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 7, 2008 Report Share Posted March 7, 2008 Jan - Colace seems to work well for my Mom. It's a stool softener, not a laxative, and therefore doesn't cause the cramping/bloating that some laxatives can. " They that wait upon the LORD shall renew their strength; they shall mount up with wings as eagles; they shall run, and not be weary; they shall walk and not faint. " -- Isaiah 40:31 --------------------------------- Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 7, 2008 Report Share Posted March 7, 2008 Hi Jan, I'm not sure if it is the same as your mother, but my husband gets a pale blue tone to his fingers sometimes and he says his hands are cold, so I put gloves on his hands and after awhile the bluish color goes away. Jan Colello Martha Igene Hello......... My mother's fingers will turn a pale blue sometimes, I have noticed swelling in the AM. Do not know if it is her BP, bad circulation or a temperture drop? This diagnosis (DLB) is new for me and I am learning everyday. She has been on Aricept for five yrs. only recently being switched to Exelon Patch (4.2mg). She seems more confused and unstable on her feet. She takes a B12 vitamin, 10mg Crestor (BP), 20mg Benacor (Cholestrol). She has a good appetite but is sometimes constipated. She has a mental block when it is time to take hers meds. Enjoy the posts and learning more about DLB. Thanks, Jan Welcome to LBDcaregivers. Quote Link to comment Share on other sites More sharing options...
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