Guest guest Posted May 15, 2002 Report Share Posted May 15, 2002 Rick, Thanks so much for your reply. It has been so many years without a Dx... funny thing to be dissapointed NOT to have tsc! I just feel like I still don't know what we are dealing with and in the meantime, things are progressing. I'll post when I hear from the nsg. Thanks for taking the time to consider my post. ~Dee Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 19, 2002 Report Share Posted May 19, 2002 Dee, did you seek another opinion? terri Any Ideas? >Hi Everyone, >I am at a loss...My Physical Medicine doc reviewed my L/S MRI and >full spine x-ray and reported that there was no sign of dysraphism >and that my conus appeared to be in the correct position. This is >good news in one respect but I am still left with a mystery...L foot >deformity, L calf atrophy, L kidney malformation, and ever-increasing >back pain. He did tell me that my S1 is not fused as it should be, >that I have a dark disk between L5 and S1 and that I have more than a >few vertebrae out of alignment (segmental scoliosis) and more >arthritis along the entire spine than he would expect to see in a 38 >year old. > >I know that no one here can offer a dx but does anyone have ANY >ideas... possible disorders to look into etc. I have sent the films >to my daughter's neurosurgeon as he has offered to evaluate them. > >Thanks for reading I really appreciate it! > >~Dee > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 4, 2006 Report Share Posted January 4, 2006 Mum and Dad have lived in the same house for 45 years but as Dad's condition is worsening he seems to have developed the idea that he's not in his own home. He regularly wakes Mum up, telling her to pack her things and when she asks why he says it's because they're going home. He has often asked my Mum to come and look at the sitting room and when she asks what's wrong, he says that he's not in his own home and when are they going home? I know that this is part of the condition and suspect that it's because he's feeling lost and insecure but I just wondered if anyone else has experienced this? As I said, my parents have lived in the same house for 45 years so it's not like they're somewhere that he doesn't know. Does anyone have any thoughts? Best wishes Debs Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 4, 2006 Report Share Posted January 4, 2006 Debs- This is a medical conditiion common to LBD. My Dad would say this is my house but it is not my house. He occasionally did this with people. Once in a while he would want to go to his other home, but most of the time he just let you know he was confused, but there was no way we could change his mind. Some of the regulars in this group can put a name to this condition. It is an usual name and for the life of me I can't remember it. Gerry RE: Any ideas? Mum and Dad have lived in the same house for 45 years but as Dad's condition is worsening he seems to have developed the idea that he's not in his own home. He regularly wakes Mum up, telling her to pack her things and when she asks why he says it's because they're going home. He has often asked my Mum to come and look at the sitting room and when she asks what's wrong, he says that he's not in his own home and when are they going home? I know that this is part of the condition and suspect that it's because he's feeling lost and insecure but I just wondered if anyone else has experienced this? As I said, my parents have lived in the same house for 45 years so it's not like they're somewhere that he doesn't know. Does anyone have any thoughts? Best wishes Debs Welcome to LBDcaregivers. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 4, 2006 Report Share Posted January 4, 2006 Debs, When Dad wanted to " go home " he meant his childhood home. The only place that registered with him as " home " was the house he lived in for the first 8 to 10 years of his life. He completely forgot any other house since. When Dad would say this, we would tell him we were staying here for a few more days, then we will head home. He always forgot that we had already told him that same thing just a few hours earlier. Margee Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 4, 2006 Report Share Posted January 4, 2006 Deb, I remember one caregiver use to take her husband in the car, do an errand and take him home. And he was so glad to be home. Don't know if this will work. There is a whole space distortion that happen. Mom (Died " 02) thought someone moved half her house and she didn't know why. Donna R Do you want to read more about Lewy Body? You can also read the Thistle, the LBD Newsletter. Just click on: http://www.lewybodydementia.org RE: Any ideas? Mum and Dad have lived in the same house for 45 years but as Dad's condition is worsening he seems to have developed the idea that he's not in his own home. He regularly wakes Mum up, telling her to pack her things and when she asks why he says it's because they're going home. He has often asked my Mum to come and look at the sitting room and when she asks what's wrong, he says that he's not in his own home and when are they going home? I know that this is part of the condition and suspect that it's because he's feeling lost and insecure but I just wondered if anyone else has experienced this? As I said, my parents have lived in the same house for 45 years so it's not like they're somewhere that he doesn't know. Does anyone have any thoughts? Best wishes Debs Welcome to LBDcaregivers. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 4, 2006 Report Share Posted January 4, 2006 Debs My Mum calls me from her " home " to ask how she is going to get home. This is sometimes in the middle of the night. I can usually get her to look at her furniture (which moved with her and she has had forever) and get her to describe it. As she does, it become familiar and she realizes that she is " home " . This is where changing things for the LBDer is confusing. Make sure there are familiar things near your Dad that your Mum can get him to focus on. Worth a try. --- Debs wrote: --------------------------------- Mum and Dad have lived in the same house for 45 years but as Dad's condition is worsening he seems to have developed the idea that he's not in his own home. He regularly wakes Mum up, telling her to pack her things and when she asks why he says it's because they're going home. He has often asked my Mum to come and look at the sitting room and when she asks what's wrong, he says that he's not in his own home and when are they going home? I know that this is part of the condition and suspect that it's because he's feeling lost and insecure but I just wondered if anyone else has experienced this? As I said, my parents have lived in the same house for 45 years so it's not like they're somewhere that he doesn't know. Does anyone have any thoughts? Best wishes Debs Welcome to LBDcaregivers. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 6, 2006 Report Share Posted January 6, 2006 Hi Debs, I'm new to the group. My father was diagnosed with LBD about two years ago. I live next door and very often he'll comments about going home. He has lived in the same house for 40 years also. I ask him if all the stuff in the house is his, and he tells me they (the workers he sees) duplicated everything. Sometimes, I will take him over my house for a while, and when I bring him back home. I'll comment " Isn't it nice to be home ? " It is usually forgotten by then, sometimes it's an all day thing though........ My father is in the hospital right now. For the past month, he has been extra confused. He has been on Rispodil for 3 years now, and they are trying him on something new. The second night he seemed great. The third night (last night) was just awful. He was so out of it! Last year was the same. After a day or two in the hospital he was so much worse than when he went in! When I took him home last year, as soon as we got in the car, I swear he snapped out of it! Is this normal? Has anyone else experienced this? He is being released tomorrow. Barb Debs wrote: Mum and Dad have lived in the same house for 45 years but as Dad's condition is worsening he seems to have developed the idea that he's not in his own home. He regularly wakes Mum up, telling her to pack her things and when she asks why he says it's because they're going home. He has often asked my Mum to come and look at the sitting room and when she asks what's wrong, he says that he's not in his own home and when are they going home? I know that this is part of the condition and suspect that it's because he's feeling lost and insecure but I just wondered if anyone else has experienced this? As I said, my parents have lived in the same house for 45 years so it's not like they're somewhere that he doesn't know. Does anyone have any thoughts? Best wishes Debs Welcome to LBDcaregivers. Quote Link to comment Share on other sites More sharing options...
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