Guest guest Posted November 28, 2006 Report Share Posted November 28, 2006 Darryl, our lo's (loved ones) react very differently to many medications so i would watch the medications very carefully, and the trick to lbd and medicines is be a turtle go slow, very slow, do not stop a medication or change it and add another one at the same time, y dad was on HCTZ or is it HTCZ i forget, but it is amedicne that is to helpregulate blood pressure and it was also a fluid pill. my dad did well on it for almost 1 year. maybe your mom should be hosp while they try to figure out her bp meds. that way they can monitor and adjust as needed. welcome to our family although it saddens e that you had to look us up. feel free to ask questions yell scream vent, laugh cry, share stories whatever it takes to help you thru this hugs, sharon m ---- Boyd wrote: My Mom was diagnosed with LBD back in May. She had some habitations that were controlled with Seroquel (smallest dosage). She was not getting any sleep for about 2 months we found out later. The Seroquel helped her get to sleep and stopped the hallucinations. She also got the " shuffling walk (Parkenism). At first I saw no dementia problems and don't see many if at all today. They were also trying to get her blood pressure under control before that and trying different BP medicines. Most of them made her sick or did not work. Around June they put her on Atenelol and that lowered it somewhat and did not make her sick at that time. They added another BP medication later and then the BP went too low. So they eliminated it. Through all of this she has had some nausea in the AM and her legs " seem heavy " and ach off and on. A few weeks ago these symptoms of the nausea and Legs have been getting worse until Sunday when she was in so much pain in the legs (ach and tingling feeling and could not get comfortable) and the nausea just would not stop. We went in to the emergency and they felt it might be the Atenolol as the side effects for that drug is the same as she was having including minor dizziness, cold feet and hands, nausea, aching legs, tiredness). So they stopped the Atenolol that night and she slept poorly, but on Monday she only had mild problems with the symptoms in the morning then they stopped. We went into her doctor that afternoon and she said she had never had any problems with Atenolol like that but to be cautious, she stopped it and had us use the other BP medication (Felodipine) instead. Now for the problem. This morning (Tuesday) she had all the Legg problems and the nausea in the am again and it is tapering off. I'm lost here. Could it be the new BP medicine or maybe the old has not left her body yet, or could it be the Seroquel? Some of the side effects of Seroquel are tiredness and nausea. I though (or hoped) some of you might know! Sorry for the long post!!! I don't know what to do for her!!! Darryl -- I am daugher of Leonard, diagnosed May 2004, probably had lbd since 1993,.Dad had a serious fall in 7/05 causing him to hav hip surgery .After that he developed aspiration pneumonia 7/05 with pulmonary embolyis, which he almost died from. He had a 2nd bout of aspiration pneumonia and uti 8/05. He died when his blood pressure fluctuations started dropping without coming back up on 9/25/05, may he rest in peace with his mom and dad, a smile a day keeps the meanies away Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 28, 2006 Report Share Posted November 28, 2006 Jan and Sharon, I sat here trying to figure out how come you said Darryl, and then I saw the signature. I would have written to Boyd. Thanks for being more alert than I am. Welcome Darryl, Sorry you have to be here. And I can't help with the meds. My Mom just couldn't take them. She had BP meds she had been on for a long time and Thyroid pills, but she couldn't take any of the other stuff. Later I had her on half pills of anti-anxiety pills 2 x a day. But she couldn't do any of the other ones. And I didn't want her all grogged out like the MDs did when they could. hope you find some answers here. Do go down and check out the " Links " at the bottom of the messages too. The LBDA site has lots of good info too. If you put LBDA in you " search " you will come up with it near the top of what you find. It is Organization and they do have some good info that the Scientific Board has written. Hugs, Donna R Welcome and hope I Caregave for Mom (after I brought her from WI to MI) for 3 years and 4th year in a nh. She was almost 89 when she died in '02. No dx other than mine. Re: Persistant problem Darryl, our lo's (loved ones) react very differently to many medications so i would watch the medications very carefully, and the trick to lbd and medicines is be a turtle go slow, very slow, do not stop a medication or change it and add another one at the same time, y dad was on HCTZ or is it HTCZ i forget, but it is amedicne that is to helpregulate blood pressure and it was also a fluid pill. my dad did well on it for almost 1 year. maybe your mom should be hosp while they try to figure out her bp meds. that way they can monitor and adjust as needed. welcome to our family although it saddens e that you had to look us up. feel free to ask questions yell scream vent, laugh cry, share stories whatever it takes to help you thru this hugs, sharon m ---- Boyd wrote: My Mom was diagnosed with LBD back in May. She had some habitations that were controlled with Seroquel (smallest dosage). She was not getting any sleep for about 2 months we found out later. The Seroquel helped her get to sleep and stopped the hallucinations. She also got the " shuffling walk (Parkenism). At first I saw no dementia problems and don't see many if at all today. They were also trying to get her blood pressure under control before that and trying different BP medicines. Most of them made her sick or did not work. Around June they put her on Atenelol and that lowered it somewhat and did not make her sick at that time. They added another BP medication later and then the BP went too low. So they eliminated it. Through all of this she has had some nausea in the AM and her legs " seem heavy " and ach off and on. A few weeks ago these symptoms of the nausea and Legs have been getting worse until Sunday when she was in so much pain in the legs (ach and tingling feeling and could not get comfortable) and the nausea just would not stop. We went in to the emergency and they felt it might be the Atenolol as the side effects for that drug is the same as she was having including minor dizziness, cold feet and hands, nausea, aching legs, tiredness). So they stopped the Atenolol that night and she slept poorly, but on Monday she only had mild problems with the symptoms in the morning then they stopped. We went into her doctor that afternoon and she said she had never had any problems with Atenolol like that but to be cautious, she stopped it and had us use the other BP medication (Felodipine) instead. Now for the problem. This morning (Tuesday) she had all the Legg problems and the nausea in the am again and it is tapering off. I'm lost here. Could it be the new BP medicine or maybe the old has not left her body yet, or could it be the Seroquel? Some of the side effects of Seroquel are tiredness and nausea. I though (or hoped) some of you might know! Sorry for the long post!!! I don't know what to do for her!!! Darryl -- I am daugher of Leonard, diagnosed May 2004, probably had lbd since 1993,.Dad had a serious fall in 7/05 causing him to hav hip surgery .After that he developed aspiration pneumonia 7/05 with pulmonary embolyis, which he almost died from. He had a 2nd bout of aspiration pneumonia and uti 8/05. He died when his blood pressure fluctuations started dropping without coming back up on 9/25/05, may he rest in peace with his mom and dad, a smile a day keeps the meanies away Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 29, 2006 Report Share Posted November 29, 2006 We have been to the Kaiser ER now two times. Once on Sunday night and once on tues night. Her legs are swollen especially at the ankles. She has a lot of pain and has to keep moving her legs around to find a spot that is comfortable. But it only last a few minutes. She doesn't seem to have the " tingles " in the legs anymore. Our problem is these doctors don't hardly knoe what LBD is. They perscribed Vicodin for the pain, but it does nothing for her. Our problem is, I'm not sure what this is. I've seen leg aches connected with the LBD before, but they don't usually come with swelling, nausea, and timgles, cold feet and hands. All these things are possible side effect of The BP medicatio Atinelol. She stopped using it on saturday and now they are saying it could take some time to leave the body and gave her vicodin. But AI am not sure they know what they are doing. They even gave her a EKG. She is not sleeping well now either. She is on Seroquel (very low dosage and has been on that for over 6 months. She has been sleeping well until all this. I think the pain is interupting her sleep. I'l at a loss here and don't know where to turn! There seems to be know one that really knows LBD at our Kaisers here. Darryl Boyd > My Mom was diagnosed with LBD back in May. She had some habitations > that were controlled with Seroquel (smallest dosage). She was not > getting any sleep for about 2 months we found out later. The Seroquel > helped her get to sleep and stopped the hallucinations. She also got > the " shuffling walk (Parkenism). At first I saw no dementia problems > and don't see many if at all today. > > They were also trying to get her blood pressure under control before > that and trying different BP medicines. Most of them made her sick or > did not work. Around June they put her on Atenelol and that lowered it > somewhat and did not make her sick at that time. They added another BP > medication later and then the BP went too low. So they eliminated it. > > Through all of this she has had some nausea in the AM and her legs > " seem heavy " and ach off and on. > > A few weeks ago these symptoms of the nausea and Legs have been > getting worse until Sunday when she was in so much pain in the legs > (ach and tingling feeling and could not get comfortable) and the > nausea just would not stop. We went in to the emergency and they felt > it might be the Atenolol as the side effects for that drug is the same > as she was having including minor dizziness, cold feet and hands, > nausea, aching legs, tiredness). > > So they stopped the Atenolol that night and she slept poorly, but on > Monday she only had mild problems with the symptoms in the morning > then they stopped. We went into her doctor that afternoon and she said > she had never had any problems with Atenolol like that but to be > cautious, she stopped it and had us use the other BP medication > (Felodipine) instead. > > Now for the problem. This morning (Tuesday) she had all the Legg > problems and the nausea in the am again and it is tapering off. > > I'm lost here. Could it be the new BP medicine or maybe the old has > not left her body yet, or could it be the Seroquel? Some of the side > effects of Seroquel are tiredness and nausea. I though (or hoped) some > of you might know! > > Sorry for the long post!!! I don't know what to do for her!!! > > Darryl > > > > -- > I am daugher of Leonard, diagnosed May 2004, probably had lbd since 1993,.Dad had a serious fall in 7/05 causing him to hav hip surgery ..After that he developed aspiration pneumonia 7/05 with pulmonary embolyis, which he almost died from. He had a 2nd bout of aspiration pneumonia and uti 8/05. He died when his blood pressure fluctuations started dropping without coming back up on 9/25/05, > may he rest in peace with his mom and dad, > a smile a day keeps the meanies away > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 30, 2006 Report Share Posted November 30, 2006 We are in ez and Concord area in SF Bayarea. I don't think it is heart problems as they have done two EKG now in the last 6 months (last one on tuesday) and her was fine. If it is something to do with the BP then I am not as worried. They will get it under control I think. I'm just concerned it is LBD. I don't know and I don't think they do either. Here is my last email from her doctor this AM. " Hi Mr. Boyd, It's not really clear to me why she has this leg pain. IT could be cramps from the Atenolol but that should be out of her system soon. The Vicodin does not affect Lewy Body disease as far as I know. I recommend giving her the Vicodin every 4 hours if she needs it to keep her pain under control. Take care " Doesn't give me a lot of confidence. She is in a lot of pain this AM again and the vicodin really doesn't help her a lot. I called " Complex Cronic Care " department yesterday. They specialize in elder care and cronic conditions. All I got from them was " Boy, she has a lot going on " . I thought I called the wrong department! I don't know what to do. Darryl > > My Mom was diagnosed with LBD back in May. She had some habitations > > that were controlled with Seroquel (smallest dosage). She was not > > getting any sleep for about 2 months we found out later. The Seroquel > > helped her get to sleep and stopped the hallucinations. She also got > > the " shuffling walk (Parkenism). At first I saw no dementia problems > > and don't see many if at all today. > > > > They were also trying to get her blood pressure under control before > > that and trying different BP medicines. Most of them made her sick or > > did not work. Around June they put her on Atenelol and that lowered it > > somewhat and did not make her sick at that time. They added another BP > > medication later and then the BP went too low. So they eliminated it. > > > > Through all of this she has had some nausea in the AM and her legs > > " seem heavy " and ach off and on. > > > > A few weeks ago these symptoms of the nausea and Legs have been > > getting worse until Sunday when she was in so much pain in the legs > > (ach and tingling feeling and could not get comfortable) and the > > nausea just would not stop. We went in to the emergency and they felt > > it might be the Atenolol as the side effects for that drug is the same > > as she was having including minor dizziness, cold feet and hands, > > nausea, aching legs, tiredness). > > > > So they stopped the Atenolol that night and she slept poorly, but on > > Monday she only had mild problems with the symptoms in the morning > > then they stopped. We went into her doctor that afternoon and she said > > she had never had any problems with Atenolol like that but to be > > cautious, she stopped it and had us use the other BP medication > > (Felodipine) instead. > > > > Now for the problem. This morning (Tuesday) she had all the Legg > > problems and the nausea in the am again and it is tapering off. > > > > I'm lost here. Could it be the new BP medicine or maybe the old has > > not left her body yet, or could it be the Seroquel? Some of the side > > effects of Seroquel are tiredness and nausea. I though (or hoped) some > > of you might know! > > > > Sorry for the long post!!! I don't know what to do for her!!! > > > > Darryl > > > > > > > > -- > > I am daugher of Leonard, diagnosed May 2004, probably had lbd since > 1993,.Dad had a serious fall in 7/05 causing him to hav hip surgery > .After that he developed aspiration pneumonia 7/05 with pulmonary > embolyis, which he almost died from. He had a 2nd bout of aspiration > pneumonia and uti 8/05. He died when his blood pressure fluctuations > started dropping without coming back up on 9/25/05, > > may he rest in peace with his mom and dad, > > a smile a day keeps the meanies away > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 1, 2006 Report Share Posted December 1, 2006 Thank you all. I really appreciate the ideas a lot! It really helps! I don't know what MSA is. I'm not up on all the " buss words " and such yet. She had a slight shuffle walk at first. Dec to May. They though her back might be the problem at first. They did xrays and found her lower back had 3 or 4 very bad disks. They were severely deteriorated. But she had no back aches. In May she was not sleeping at all. We found out later it had been going on for over 2 ½ months or so. She was sleeping about 1 or two hours each night. Then the hallucinations started. Seeing cats and her son who lives 6 hours away. They sent her to a psychologist at first and with the shuffle and the not sleeping and hallucinations he gave her Seroquel. The hallucinations stopped on the lowest dosage and she started sleeping and has been there since May. The Neurologist at Walnut Creek Kaiser came a week later and is the one who diagnosed her with LBD. I asked him how he knew and he said because of the hallucinations, the Parkinsons walk and the loss of memory. Now I agree with all of that except the loss of memory. I will say she has some loss of memory, but no more than any 80 year old. My mother in law has more memory loss than my Mom and she doesn't have any other problems. But…… But here is an update. When I pushed her Dr. to do something other than just give her vicodin, she called the WC neurologist up and asked him if the swollen ankles, sever leg pain (feels like a ton of bricks " , nausea (which has gone away the last 4 days since dumping the Atenolol and going to Fedelopine and also the ankle swelling is gone way down also, and tiredness in the legs. He told her it didn't sound like the Parkenism or Lewy Body to him. But it did sound like a nerve problem. He asked her if she had a fall or had bad back problems. Of coarse she had the sever spinal problems (see above back problems). He told her it sounded like Spinal Stenosis. It is all the symptoms that have not gone away yet. She is currently on Vicodin for the pain and they are scheduling her ASAP for a MRI of her spine. I can see no dementia in my mom in the last 10 to 12 months. She is almost the same as she used to be. She does take Seroquel still to help her sleep. The neurologist wanted to give her Sinemet for her shuffling, but we were scared of bringing back hallucinations, so we did not use it. She gets around pretty good until a week ago when all her leg problems got worse. I'm wondering if the Spinal Stinosis has always been her shuffeling problem all along. Now the Dr's can't say one way or another until the MRI. If it is, and no real dementia I wonder where we really are here. It is frustrating to say the least. But your comments have helped me a lot! And I really appreciate you concern and help. Thank You!!!!!!!!!!!!!! Darryl Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 3, 2006 Report Share Posted December 3, 2006 I am not a medical professional, either, and I do try to stay away from statements like this one below. I don't believe it is true. I believe the MRI is one of the first tests a neuro will give to help him/her diagnose. I know that with my multiple sclerosis (treated by a neuro) it is a standard procedure and the best diagnostic tool. I know that with Dad (alzheimer's and LBD) it showed shrinkage caused by either AD tangles or lewy bodies. I have heard of people getting PET scans to diagnose dementia as well. I'm sure different doctors rely on different tests, and I didn't want anybody to think that an MRI was not a valid response to a quest for a diagnosis. an mri is a test for the soft tissues and is infrequently used by neuro's. they prefer CT's as they show the bones and the harder materials. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 3, 2006 Report Share Posted December 3, 2006 Thank you for this information. We think Mom damaged her sciatica nerve lifting Dad and she's gone to two doctors (both of whom did not see the need for an xray or CT scan - which I find incredible) and a chiropractor looking for help. Finally, Friday, she found a PT who seemed to help her and gave her exercises. She may also go back to the chiropractor. I am constantly amazed by the different treatment methods of different doctors. You'd think the medical community would have some cohesiveness, but they don't seem to. Diane if the sciatica nerve which is the nerve in the low back is affected, normally the patient will have leg pains as well. it could be one or both legs, could be straight pain, shooting pain, numbness or pins and needles. if there is what is called leg drop, where the patient cannot lift their leg and they dont shuffle but drag it, is a warning sign thatneeds to be evaluated, soon. as that is a sign of a dangeroulsy pinched nerve. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 14, 2007 Report Share Posted January 14, 2007 Well I'm back it it turned out lousey. Mom had a bad back and ended up in ER at Kaiser. The only thing that they could do for her is give her Morphine. They wanted to do a MRI and she has a huge fear of closed in areas so... they wanted to give her Halidol. I refused to let them give that to her to calm her down. We had an argument with the ER doctor and he went off and came back about an hour later. He said I was right about the Halidol and said the nurologist recommended Adivan. We did the MRI and she was asleep for hours and they got very concerned. When she woke she was a different person and was saying and doing thing I have never seen her ever do. It was terrable. The next morning she was OK again. After 3 days in the ER they decided she had a bad back but not spinal stenosis. It was not operable and now she could not move her legs at all. The moved her to a Rehab facility which was a horable place. The help was awful. The Physical therapy was good and they did get her up on her feet again. And then they discharged her. We knew we could not take her home and was looking for a place that could take care of her. We thought that was going to be Aegis. They had assisted living and dementia care. Mom has declined a lot mentally in the last month. Her short term memory is the area she is having problems with. Every thing else is Good. She is quite aware of where she is. But getting her off the morphine when we got to the rehab center was the best thing . She is not on any pain killers for over 4 weeks now and they cut her down to 12.5 mg of Seroquel at nights ant that caused the Halucinations to come back just a little after 2 weeks. They increased the Seroquel back to 25 mg and she is OK, but her leg started hurting again. She says they are heavy, and want to move on their own. The fall asleep on the feet and she wants to walk (with her walker) to " calm them down. The place she is at is supposed to be the best in the county. But they can't keep up with her changed in conditions. She now has a sort on her bottom. She got that from a urinary tract infection she has been fighting where she has to urinate every 1/2 hour and hardly nothing comes out. The legs is what she is fighting with right now and I don't know what to do for her. We were going to sell her house which will keep her where she is for about 5 years an then she has nothing and I don't think we can pay for it ourselfs. I don't know what to do and I am at my end here. I am over there every day as she goes crazy with fear if I don't show up. I don't think where she is they can keep up with her. She is very lucid and crys when she thinks I " might lock her up some where " . It is very hard and I am lost! I am sorry for the long post, but this is only a fraction of the minor problems I've had to deal with. My brother (only sibling) had to go back home to another state 6 hours away two weeks ago and left it to me. I'm sorry I forgot to say my brother has Parkinsons (12 years now) so it is not his fault as he has to take care of himself also. But I do feel alone! I don't say too much to my wife as she has problems with her Mom who is 85 years old and is doing very poorly herself. Sorry, just needed to get this off my chest to someone! Darryl ---------------------------------------------------- > > Darryl, that sounds like it could be good news if the MRI shows > the spinal problem and it can be effectively treated and No dementia. > Hope is turns out good for both you and mom. > > Tee > -------------- Original message ---------------------- > > > Thank you all. I really appreciate the ideas a lot! It really helps! > > > > I don't know what MSA is. I'm not up on all the " buss words " and such yet. > > > > She had a slight shuffle walk at first. Dec to May. They though her > > back might be the problem at first. They did xrays and found her lower > > back had 3 or 4 very bad disks. They were severely deteriorated. But > > she had no back aches. > > > > In May she was not sleeping at all. We found out later it had been > > going on for over 2 ? months or so. She was sleeping about 1 or two > > hours each night. Then the hallucinations started. Seeing cats and her > > son who lives 6 hours away. > > > > They sent her to a psychologist at first and with the shuffle and the > > not sleeping and hallucinations he gave her Seroquel. The > > hallucinations stopped on the lowest dosage and she started sleeping > > and has been there since May. > > > > The Neurologist at Walnut Creek Kaiser came a week later and is the > > one who diagnosed her with LBD. I asked him how he knew and he said > > because of the hallucinations, the Parkinsons walk and the loss of > > memory. Now I agree with all of that except the loss of memory. I will > > say she has some loss of memory, but no more than any 80 year old. My > > mother in law has more memory loss than my Mom and she doesn't have > > any other problems. But?? > > > > But here is an update. > > When I pushed her Dr. to do something other than just give her > > vicodin, she called the WC neurologist up and asked him if the swollen > > ankles, sever leg pain (feels like a ton of bricks " , nausea (which has > > gone away the last 4 days since dumping the Atenolol and going to > > Fedelopine and also the ankle swelling is gone way down also, and > > tiredness in the legs. He told her it didn't sound like the Parkenism > > or Lewy Body to him. But it did sound like a nerve problem. He asked > > her if she had a fall or had bad back problems. Of coarse she had the > > sever spinal problems (see above back problems). He told her it > > sounded like Spinal Stenosis. It is all the symptoms that have not > > gone away yet. She is currently on Vicodin for the pain and they are > > scheduling her ASAP for a MRI of her spine. > > > > I can see no dementia in my mom in the last 10 to 12 months. She is > > almost the same as she used to be. She does take Seroquel still to > > help her sleep. The neurologist wanted to give her Sinemet for her > > shuffling, but we were scared of bringing back hallucinations, so we > > did not use it. She gets around pretty good until a week ago when all > > her leg problems got worse. > > > > I'm wondering if the Spinal Stinosis has always been her shuffeling > > problem all along. Now the Dr's can't say one way or another until the > > MRI. > > > > If it is, and no real dementia I wonder where we really are here. It > > is frustrating to say the least. > > > > But your comments have helped me a lot! And I really appreciate you > > concern and help. > > Thank You!!!!!!!!!!!!!! > > Darryl > > > > > > > > > > > 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.