Guest guest Posted January 28, 2006 Report Share Posted January 28, 2006 OK - going to try this again.. Emailed before and the message somehow got lost... (note to self: SAVE EM) My name is . My mother, Maureen, has been diagnosed with Vascular Dementia caused by mini-strokes (but she was diagnosed with other things too - so I wasn't satisfied, did some googling and now I'm almost certain that it's LBD) Good timing too - she has an appt. w/ her neurologist on Monday - so intend to discuss this option with him... Some History: I noticed changes going back to about 2001. My mother fell and broke her wrist - since then she was very cautious about her walking, but it got progressively worse. We thought it was due to her fall and she being overly cautious. But now looking back, when did the caution end and the shuffling due to LBD (or whatever) begin? She progressed to shuffling w/ the help of a cane by May 2005... The other change noticed for some years now was the personality change. My mother went from a dynamic, outgoing individual to a more reclusive, fearful one. She has tons of friends, but stopped calling/meeting them. Was uncomfortable in large crowds - stopped going to the annual family parties b/c the crowds were too big. And of course the " senior moments " that led to constant calls asking me questions about upcoming doctor appt., etc. No sense of time. " Good days and bad days " . January 2005 - mom & I went to our annual trip to Dom. Rep. (tradition since my father passed away in 1996) We were together 24/7 and then I really noticed the little changes. Figity - can't sit still. Fearful - scared to go alone to the restaurant to get her coffee. Crying spells in the AM - my mother was not the crier in the family, that position was held for me. Extremely fragile. Stopped wearing deoderant. She had a panic attack on the plane. She had hallucinations on the plane - looking out the window she envisioned a town - a cloud town. When we returned from the trip we started to visit with doctors. She kept passing the Alzheimers test. Her MRI showed more white matter... but not an MRI similar to those w/ AD. We eventually moved her to Mass. General Hospital's dementia unit team - b/c we were not happy with the other doctors and they were not specialists. * May 2005 - Mom was living on her own in her condo. We got meals on wheels, home health aide to help with cleaning, and a life line. Her brother passed away and it was very traumatic for her - she became extremely depressed. * June 2005 - We got companions to be with her during the day - to walk with her to church and stores so she didn't fall. My sister did her food shopping. I started to take care of her finances. The doctor tried her on Aricept - which made her conditions worse. She was calling me constantly and asking me the same questions over and over. * July 2005 - After her falling asleep and living prunes on the stove and the fire dept. visiting her condo we knew she could no longer live alone. We moved her to an assisted liv. facility in the neighborhood - not dementia unit - more independant. She enjoyed that place for 3 months. * October 2005 - She was in near hysterics. Crying constantly. See my deceased father. Threatening to run away - she packed her bags. She wanted to die. We got scared and called her Psychiatrist and he suggested her going to a hospital to be observed (BAD MOVE - we SHOULD have just moved her into another ALF w/ a Dementia unit). * November 16, 2005 - After 3 weeks in the hospital for observation and to receive a number of tests and was given 3 different new meds (she was taken off some others, others were kept on) The 3 new ones were Risperadone, Remiron, and Razadyne. Mom left the hospital to move into a ALF w/ dementia unit. She WALKED into this hospital but had to leave in a WHEELCHAIR. We were told it was temporary. She hasn't walked since... * November 24, 2005 - After a week at the ALF I arrived to p/u my mother for Thanksgiving Dinner. Found her in the wheelchair - slumped over, drooling, limbs all rigid. The nurses never called me to tell me this change. She was like this for over 24 hours. We immediately brought her to the hospital (I thought she had a stroke). They took her off all the drugs. The discharge notes were not very conclusive. But now I'm thinking she may have been victim to neuroleptic malignant syndrome... * November 30, 2005 - Moved into a NH for rehab. We were hoping she'd get better to move to the ALF - no luck. She will now stay at the NH for good. She's still in a wheelchair, unable to walk. She is constantly moving her right side. Leg up, down, up, down. She knows who we are. She can't have a conversation. Only yes, no answers. Monday we're meeting with her neurologist. He hasn't seen her since November. I'd like to discuss the possibility of LBD. It's the only disease that my mother has ALL the symptoms... I'm glad I found this site. I thought about LBD after reading the www.lewybodyjournal.org site, and then reading the symptoms of www.lewybodydisease.org site. Some relatives feel 'what's the point?' - either way it's progressive and no cure. But mom is only on Seraquil - maybe other meds would help some... It's worth a shot! Any suggestions? Any observations of my EM? All welcome - and thank you in advance for your responses! --------------------------------- Bring words and photos together (easily) with PhotoMail - it's free and works with Yahoo! Mail. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 28, 2006 Report Share Posted January 28, 2006 , I see you made it! Welcome again. Got it this time. I will have more time to answer some of your questions later. I am sure lots people will respond to your story. 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 3rd Time's a Charm? OK - going to try this again.. Emailed before and the message somehow got lost... (note to self: SAVE EM) My name is . My mother, Maureen, has been diagnosed with Vascular Dementia caused by mini-strokes (but she was diagnosed with other things too - so I wasn't satisfied, did some googling and now I'm almost certain that it's LBD) Good timing too - she has an appt. w/ her neurologist on Monday - so intend to discuss this option with him... Some History: I noticed changes going back to about 2001. My mother fell and broke her wrist - since then she was very cautious about her walking, but it got progressively worse. We thought it was due to her fall and she being overly cautious. But now looking back, when did the caution end and the shuffling due to LBD (or whatever) begin? She progressed to shuffling w/ the help of a cane by May 2005... The other change noticed for some years now was the personality change. My mother went from a dynamic, outgoing individual to a more reclusive, fearful one. She has tons of friends, but stopped calling/meeting them. Was uncomfortable in large crowds - stopped going to the annual family parties b/c the crowds were too big. And of course the " senior moments " that led to constant calls asking me questions about upcoming doctor appt., etc. No sense of time. " Good days and bad days " . January 2005 - mom & I went to our annual trip to Dom. Rep. (tradition since my father passed away in 1996) We were together 24/7 and then I really noticed the little changes. Figity - can't sit still. Fearful - scared to go alone to the restaurant to get her coffee. Crying spells in the AM - my mother was not the crier in the family, that position was held for me. Extremely fragile. Stopped wearing deoderant. She had a panic attack on the plane. She had hallucinations on the plane - looking out the window she envisioned a town - a cloud town. When we returned from the trip we started to visit with doctors. She kept passing the Alzheimers test. Her MRI showed more white matter... but not an MRI similar to those w/ AD. We eventually moved her to Mass. General Hospital's dementia unit team - b/c we were not happy with the other doctors and they were not specialists. * May 2005 - Mom was living on her own in her condo. We got meals on wheels, home health aide to help with cleaning, and a life line. Her brother passed away and it was very traumatic for her - she became extremely depressed. * June 2005 - We got companions to be with her during the day - to walk with her to church and stores so she didn't fall. My sister did her food shopping. I started to take care of her finances. The doctor tried her on Aricept - which made her conditions worse. She was calling me constantly and asking me the same questions over and over. * July 2005 - After her falling asleep and living prunes on the stove and the fire dept. visiting her condo we knew she could no longer live alone. We moved her to an assisted liv. facility in the neighborhood - not dementia unit - more independant. She enjoyed that place for 3 months. * October 2005 - She was in near hysterics. Crying constantly. See my deceased father. Threatening to run away - she packed her bags. She wanted to die. We got scared and called her Psychiatrist and he suggested her going to a hospital to be observed (BAD MOVE - we SHOULD have just moved her into another ALF w/ a Dementia unit). * November 16, 2005 - After 3 weeks in the hospital for observation and to receive a number of tests and was given 3 different new meds (she was taken off some others, others were kept on) The 3 new ones were Risperadone, Remiron, and Razadyne. Mom left the hospital to move into a ALF w/ dementia unit. She WALKED into this hospital but had to leave in a WHEELCHAIR. We were told it was temporary. She hasn't walked since... * November 24, 2005 - After a week at the ALF I arrived to p/u my mother for Thanksgiving Dinner. Found her in the wheelchair - slumped over, drooling, limbs all rigid. The nurses never called me to tell me this change. She was like this for over 24 hours. We immediately brought her to the hospital (I thought she had a stroke). They took her off all the drugs. The discharge notes were not very conclusive. But now I'm thinking she may have been victim to neuroleptic malignant syndrome... * November 30, 2005 - Moved into a NH for rehab. We were hoping she'd get better to move to the ALF - no luck. She will now stay at the NH for good. She's still in a wheelchair, unable to walk. She is constantly moving her right side. Leg up, down, up, down. She knows who we are. She can't have a conversation. Only yes, no answers. Monday we're meeting with her neurologist. He hasn't seen her since November. I'd like to discuss the possibility of LBD. It's the only disease that my mother has ALL the symptoms... I'm glad I found this site. I thought about LBD after reading the www.lewybodyjournal.org site, and then reading the symptoms of www.lewybodydisease.org site. Some relatives feel 'what's the point?' - either way it's progressive and no cure. But mom is only on Seraquil - maybe other meds would help some... It's worth a shot! Any suggestions? Any observations of my EM? All welcome - and thank you in advance for your responses! --------------------------------- Bring words and photos together (easily) with PhotoMail - it's free and works with Yahoo! Mail. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 29, 2006 Report Share Posted January 29, 2006 victoria, lbd is an awful disease and i am so glad you found this site, we are here foryou,, feel free to vent, scream, yell, cry, laugh, share stories, we are all in the boat with you, some are ahead of you in the lbd world others are right with you and yet others are beihnd you. be sure to go to the lbda website and print out the list of meds. my dad went thru a serious decline after being in the hosp too. he went in walking and came out struggling with a walker, he couldnt understand to walk with the walker he wanted to keep it way ahead of him. my dad was diagnosed in may 2004, and after his 2nd severe fall, which fractrued his hip in july 2005, he passed away 2.5 months later in sept 05. tellus more about your mom tell us what meds she is on and what the neurologist says about her. lbd is a new disease dont be surpirsed if you have to teach your doctor about lbd, good luck and hugs sharon m pensacola florida -- 3rd Time's a Charm? OK - going to try this again.. Emailed before and the message somehow got lost... (note to self: SAVE EM) My name is . My mother, Maureen, has been diagnosed with Vascular Dementia caused by mini-strokes (but she was diagnosed with other things too - so I wasn't satisfied, did some googling and now I'm almost certain that it's LBD) Good timing too - she has an appt. w/ her neurologist on Monday - so intend to discuss this option with him... Some History: I noticed changes going back to about 2001. My mother fell and broke her wrist - since then she was very cautious about her walking, but it got progressively worse. We thought it was due to her fall and she being overly cautious. But now looking back, when did the caution end and the shuffling due to LBD (or whatever) begin? She progressed to shuffling w/ the help of a cane by May 2005... The other change noticed for some years now was the personality change. My mother went from a dynamic, outgoing individual to a more reclusive, fearful one. She has tons of friends, but stopped calling/meeting them. Was uncomfortable in large crowds - stopped going to the annual family parties b/c the crowds were too big. And of course the " senior moments " that led to constant calls asking me questions about upcoming doctor appt., etc. No sense of time. " Good days and bad days " . January 2005 - mom & I went to our annual trip to Dom. Rep. (tradition since my father passed away in 1996) We were together 24/7 and then I really noticed the little changes. Figity - can't sit still. Fearful - scared to go alone to the restaurant to get her coffee. Crying spells in the AM - my mother was not the crier in the family, that position was held for me. Extremely fragile. Stopped wearing deoderant. She had a panic attack on the plane. She had hallucinations on the plane - looking out the window she envisioned a town - a cloud town. When we returned from the trip we started to visit with doctors. She kept passing the Alzheimers test. Her MRI showed more white matter... but not an MRI similar to those w/ AD. We eventually moved her to Mass. General Hospital's dementia unit team - b/c we were not happy with the other doctors and they were not specialists. * May 2005 - Mom was living on her own in her condo. We got meals on wheels, home health aide to help with cleaning, and a life line. Her brother passed away and it was very traumatic for her - she became extremely depressed. * June 2005 - We got companions to be with her during the day - to walk with her to church and stores so she didn't fall. My sister did her food shopping. I started to take care of her finances. The doctor tried her on Aricept - which made her conditions worse. She was calling me constantly and asking me the same questions over and over. * July 2005 - After her falling asleep and living prunes on the stove and the fire dept. visiting her condo we knew she could no longer live alone. We moved her to an assisted liv. facility in the neighborhood - not dementia unit - more independant. She enjoyed that place for 3 months. * October 2005 - She was in near hysterics. Crying constantly. See my deceased father. Threatening to run away - she packed her bags. She wanted to die. We got scared and called her Psychiatrist and he suggested her going to a hospital to be observed (BAD MOVE - we SHOULD have just moved her into another ALF w/ a Dementia unit). * November 16, 2005 - After 3 weeks in the hospital for observation and to receive a number of tests and was given 3 different new meds (she was taken off some others, others were kept on) The 3 new ones were Risperadone, Remiron, and Razadyne. Mom left the hospital to move into a ALF w/ dementia unit. She WALKED into this hospital but had to leave in a WHEELCHAIR. We were told it was temporary. She hasn't walked since... * November 24, 2005 - After a week at the ALF I arrived to p/u my mother for Thanksgiving Dinner. Found her in the wheelchair - slumped over, drooling, limbs all rigid. The nurses never called me to tell me this change She was like this for over 24 hours. We immediately brought her to the hospital (I thought she had a stroke). They took her off all the drugs. The discharge notes were not very conclusive. But now I'm thinking she may have been victim to neuroleptic malignant syndrome... * November 30, 2005 - Moved into a NH for rehab. We were hoping she'd get better to move to the ALF - no luck. She will now stay at the NH for good. She's still in a wheelchair, unable to walk. She is constantly moving her right side. Leg up, down, up, down. She knows who we are. She can't have a conversation. Only yes, no answers. Monday we're meeting with her neurologist. He hasn't seen her since November. I'd like to discuss the possibility of LBD. It's the only disease that my mother has ALL the symptoms... I'm glad I found this site. I thought about LBD after reading the www lewybodyjournal.org site, and then reading the symptoms of www lewybodydisease.org site. Some relatives feel 'what's the point?' - either way it's progressive and no cure. But mom is only on Seraquil - maybe other meds would help some... It's worth a shot! Any suggestions? Any observations of my EM? All welcome - and thank you in advance for your responses! --------------------------------- Bring words and photos together (easily) with PhotoMail - it's free and works with Yahoo! Mail. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 29, 2006 Report Share Posted January 29, 2006 (OK - now I'm trying to post via 'reply' since nothing else seems to work for me...) Thank you for your responses... To answer/respond: * My mother turned 74 this past November * - same with my mother. In the early days she would have good days and bad days. Always a good day when we went to the doctor's office. Like we're making all our stories up! The doctors never saw what we saw. That's why we agreed to her going to that hospital in October for observation. Early on (year or 2 ago) we felt my mother was " faking " to get attention. * To my knowledge, she was never given Haldol or Ativan (but she spent 3 weeks in a hospital for observation, they may have tried those meds before she was finally given Risperadone, Remiron, and Razadyne) * On Monday, I'll discuss this LBD possibility. The reason I'm not satisfied with her diagnosis of Vascular Dementia is b/c she was diagnosed w/ a number of different things - the latest being VaD and Binswenger's Disease; but even that didn't satisfy her neurologist, he did a spinal tap on her in November b/c my mother seems to be the medical mystery - of course the spinal tap turned out to be inconclusive b/c they didn't have enough spinal fluid for the test (we won't be putting her through that again); there are a couple of symptoms of VaD that she doesn't have while she has all the symptoms of LBD; the rapidity of her disease - most others have been gradual, slow progression while my mother spiraled from her condo in July to a NH in November. And with VaD it's usually a decline and leveling off and then a decline again - like steps going down - not my mother she's been spiraling down with no plateaus reached... * I'm sure the answer to the VaD vs. LBD is the issue with white matter. But I read this too: A more common diagnostic error is to attribute the clinical features of DLB to cerebral vascular disease such as multi-infarct dementia or Binswanger's disease. CT or MR imaging frequently reveal mild and essentially incidental vascular disease which can lure the clinical towards a diagnosis of multi-infarct dementia. CT or MR imaging often show diffuse subcortical white matter changes in degenerative diseases such as DLB, and these can be so striking as to lead to a radiological diagnosis of Binswanger's disease. Question - what are the white matter findings in your loved ones? Are there similarities? * I'll take your advice and print the brochure and the medication files from this board for the appointment. I feel an anti-depressant medication is necesarry for her and some form of medication for her Parkinsons-like symptoms would be beneficial. I'm glad she's on one drug that your LO's are on - Seroquil. Thanks again! > > victoria, > lbd is an awful disease and i am so glad you found this site, we are here > foryou,, feel free to vent, scream, yell, cry, laugh, share stories, we are > all in the boat with you, some are ahead of you in the lbd world others are > right with you and yet others are beihnd you. be sure to go to the lbda > website and print out the list of meds. my dad went thru a serious decline > after being in the hosp too. he went in walking and came out struggling > with a walker, he couldnt understand to walk with the walker he wanted to > keep it way ahead of him. my dad was diagnosed in may 2004, and after his > 2nd severe fall, which fractrued his hip in july 2005, he passed away 2.5 > months later in sept 05. tellus more about your mom tell us what meds she > is on and what the neurologist says about her. lbd is a new disease dont be > surpirsed if you have to teach your doctor about lbd, good luck and hugs > sharon m pensacola florida > > -- 3rd Time's a Charm? > > OK - going to try this again.. Emailed before and the message somehow got > lost... (note to self: SAVE EM) > > My name is . My mother, Maureen, has been diagnosed with Vascular > Dementia caused by mini-strokes (but she was diagnosed with other things too > - so I wasn't satisfied, did some googling and now I'm almost certain that > it's LBD) Good timing too - she has an appt. w/ her neurologist on Monday - > so intend to discuss this option with him... > > Some History: > I noticed changes going back to about 2001. My mother fell and broke her > wrist - since then she was very cautious about her walking, but it got > progressively worse. We thought it was due to her fall and she being overly > cautious. But now looking back, when did the caution end and the shuffling > due to LBD (or whatever) begin? She progressed to shuffling w/ the help of a > cane by May 2005... > > The other change noticed for some years now was the personality change. My > mother went from a dynamic, outgoing individual to a more reclusive, fearful > one. She has tons of friends, but stopped calling/meeting them. Was > uncomfortable in large crowds - stopped going to the annual family parties > b/c the crowds were too big. > > And of course the " senior moments " that led to constant calls asking me > questions about upcoming doctor appt., etc. No sense of time. " Good days and > bad days " . > > January 2005 - mom & I went to our annual trip to Dom. Rep. (tradition > since my father passed away in 1996) We were together 24/7 and then I really > noticed the little changes. Figity - can't sit still. Fearful - scared to go > alone to the restaurant to get her coffee. Crying spells in the AM - my > mother was not the crier in the family, that position was held for me. > Extremely fragile. Stopped wearing deoderant. She had a panic attack on the > plane. She had hallucinations on the plane - looking out the window she > envisioned a town - a cloud town. > > When we returned from the trip we started to visit with doctors. She kept > passing the Alzheimers test. Her MRI showed more white matter... but not an > MRI similar to those w/ AD. We eventually moved her to Mass. General > Hospital's dementia unit team - b/c we were not happy with the other doctors > and they were not specialists. > > * May 2005 - Mom was living on her own in her condo. We got meals on > wheels, home health aide to help with cleaning, and a life line. Her brother > passed away and it was very traumatic for her - she became extremely > depressed. > * June 2005 - We got companions to be with her during the day - to walk > with her to church and stores so she didn't fall. My sister did her food > shopping. I started to take care of her finances. The doctor tried her on > Aricept - which made her conditions worse. She was calling me constantly and > asking me the same questions over and over. > * July 2005 - After her falling asleep and living prunes on the stove and > the fire dept. visiting her condo we knew she could no longer live alone. We > moved her to an assisted liv. facility in the neighborhood - not dementia > unit - more independant. She enjoyed that place for 3 months. > * October 2005 - She was in near hysterics. Crying constantly. See my > deceased father. Threatening to run away - she packed her bags. She wanted > to die. We got scared and called her Psychiatrist and he suggested her going > to a hospital to be observed (BAD MOVE - we SHOULD have just moved her into > another ALF w/ a Dementia unit). > * November 16, 2005 - After 3 weeks in the hospital for observation and to > receive a number of tests and was given 3 different new meds (she was taken > off some others, others were kept on) The 3 new ones were Risperadone, > Remiron, and Razadyne. Mom left the hospital to move into a ALF w/ dementia > unit. She WALKED into this hospital but had to leave in a WHEELCHAIR. We > were told it was temporary. She hasn't walked since... > * November 24, 2005 - After a week at the ALF I arrived to p/u my mother > for Thanksgiving Dinner. Found her in the wheelchair - slumped over, > drooling, limbs all rigid. The nurses never called me to tell me this change > She was like this for over 24 hours. We immediately brought her to the > hospital (I thought she had a stroke). They took her off all the drugs. The > discharge notes were not very conclusive. But now I'm thinking she may have > been victim to neuroleptic malignant syndrome... > * November 30, 2005 - Moved into a NH for rehab. We were hoping she'd get > better to move to the ALF - no luck. She will now stay at the NH for good. > She's still in a wheelchair, unable to walk. She is constantly moving her > right side. Leg up, down, up, down. She knows who we are. She can't have a > conversation. Only yes, no answers. > > Monday we're meeting with her neurologist. He hasn't seen her since > November. I'd like to discuss the possibility of LBD. It's the only disease > that my mother has ALL the symptoms... > > I'm glad I found this site. I thought about LBD after reading the www > lewybodyjournal.org site, and then reading the symptoms of www > lewybodydisease.org site. Some relatives feel 'what's the point?' - either > way it's progressive and no cure. But mom is only on Seraquil - maybe other > meds would help some... It's worth a shot! > > Any suggestions? Any observations of my EM? All welcome - and thank you in > advance for your responses! > > > > --------------------------------- > Bring words and photos together (easily) with > PhotoMail - it's free and works with Yahoo! Mail. > > Quote Link to comment Share on other sites More sharing options...
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