Guest guest Posted January 27, 2011 Report Share Posted January 27, 2011 Hi Helene, Mum insists the pain is in the vagina, they have even done an internal ultra sound but came up with nothing. It seems to be when she gets herself agitated over something so we think it might be psychosomatic. The doctor is giving her a list of things to do to try and take her mind of it, like looking at family photos, going for a walk in the garden, they have also given her a baby doll to cuddle to see if that helps. All we can do is keep trying. Cheers Cheryl From: LBDcaregivers [mailto:LBDcaregivers ] On Behalf Of hgm54 Sent: Thursday, January 27, 2011 10:27 AM To: LBDcaregivers Subject: Re: My experience with LBD Dear Chezza, Your Mom sounds like an amazing person. I don't know about vaginal pain, but my Mom experienced lots of stomach pain - and I believe that really was the beginning of the Lewy Body. Is it possible that your Mom has lower stomach pain that may be mistaken for vaginal pain? You sound like such a wonderful daughter. Hugs from snowy NY, Helene (Mom 76, about 10 years in with LBD) > > Hi Everyone, > > > > Like everyone else I had not heard of LBD until last year when my Mum was > diagnosed with it. Here is a little background: > > > > My Mum was widowed at the age of 41, I was 19 and my brother was 14. After > this my Mum devoted her whole existence to my brother and I and later down > the track to our families. About 10 years ago Mum was diagnosed with > Parkinson's Disease. We read what we could and prepared ourselves (as well > as you can) for what was to happen. > > All was going OK until nearly three years ago when my Mum's brother died. > This seemed to hit my hard. One night I received a call from her saying she > was scared and didn't know what of. My husband said to go and bring her to > our place (he has been my savior thru all this) which I did. From that night > we have been on a downhill slide. > > > > She didn't want to go " Home " she just wanted to spend 24/7 with me. She was > extremely nervous all the time and was having pain in her legs (which from > reading I now think they are Restless leg syndrome). We were getting > desperate to find help for Mum, there were a few visits to the Emergency > Rooms at hospitals but they would just send us home and tell us to see her > Neurologist who did nothing. By the way when we were at the hospitals they > would give Mum pain relief that seemed to make her worse. > > > > Eventually we phoned the Parkinson Association who recommended we go to a > nearby clinic that specialize in Parkinson. Mum was admitted and they > started the assessment. They increased and or changed her medication and of > course she started to hallucinate and do all strange things like getting > aggressive with the staff. This went on for about two weeks and finally they > said they couldn't help her and we had to admit her to a Nursing Home as I > work full time and the way Mum was she couldn't be left on her own. > > > > Mum was still having the pains in her legs and it now moved to her vaginal > area as well. I had several fights with the Doctor at the Nursing Home as > nothing was changing, so we changed Neurologists and he at once lowered her > medication (he couldn't believe the amount she was on) and things seemed to > improve. > > > > Mum would still have her " Off " days but she seemed better. We also took her > to a Psychiatrist who was absolutely lovely with her (she developed a bit of > a crush on him.) > > > > Still everything revolved around me and Mum would come up with these stories > about how they were treating to her in the Nursing Home (we suspected it was > so that I would take her out and bring her home to live with me) but I was > keeping a careful look at everything and although there were some Nurses > that were a bit snappy the majority are very good with the patients. > > > > Then March 2010 my husband and I went for a 3 week trip overseas and when I > came back Mum was a mess and after I jumped up and down and changed the > Doctor in the Nursing Home for her lack of action . > > > > We took Mum back to the Neurologist and when I explained the new lot of > symptoms Mum had he re-diagnosed her as having LBD and so a new learning > curve began. > > > > On doing research I don't seem to find much information from Australia but > then I found the LBD website and from there I found your link and have > learnt a lot from reading your stories. > > > > At this stage (which I am not sure of the stages of LBD Mum is at) Mum has > the following: > > > > Stooped slow walk > > Loss of appetite (she has developed a taste for Mc's strawberry > sundaes and every weekend when I bring her home for a visit I get her one.) > > She seems to stick her tongue out and drools slightly > > Depressed (she keeps telling me she wishes she could die as she has had > enough) > > Bad pain in her vaginal area (The continually do tests for infections, she > has also had ultrasounds etc but nothing shows up) > > Delusions (these are becoming more frequent. Last week she hit one of the > men patients over the head with her shoe as she said he was raping all the > ladies at night, she also refuses her medications as she thinks they are > poisoning her.) > > Sleeping more thru the day, she has even been where they can't rouse her a > few times. > > > > Oh well I have come to the end of my story so far. Does anyone have any > ideas as to the vaginal pain? I would appreciate any suggestions. > > > > Bye for now > > > > Chezza > > From the land down under. > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 27, 2011 Report Share Posted January 27, 2011 Cheryl, Have they tested for a UT Infection? Mom had them and I would forget until the MD would tell me to bring her in and she usually had one. Just a thougt. Donna R Cared for Mom 3 years in my home and the last year at a nh. She passed away from LBD in 2002. Re: My experience with LBD Dear Chezza, Your Mom sounds like an amazing person. I don't know about vaginal pain, but my Mom experienced lots of stomach pain - and I believe that really was the beginning of the Lewy Body. Is it possible that your Mom has lower stomach pain that may be mistaken for vaginal pain? You sound like such a wonderful daughter. Hugs from snowy NY, Helene (Mom 76, about 10 years in with LBD) > > Hi Everyone, > > > > Like everyone else I had not heard of LBD until last year when my Mum was > diagnosed with it. Here is a little background: > > > > My Mum was widowed at the age of 41, I was 19 and my brother was 14. After > this my Mum devoted her whole existence to my brother and I and later down > the track to our families. About 10 years ago Mum was diagnosed with > Parkinson's Disease. We read what we could and prepared ourselves (as well > as you can) for what was to happen. > > All was going OK until nearly three years ago when my Mum's brother died. > This seemed to hit my hard. One night I received a call from her saying she > was scared and didn't know what of. My husband said to go and bring her to > our place (he has been my savior thru all this) which I did. From that night > we have been on a downhill slide. > > > > She didn't want to go " Home " she just wanted to spend 24/7 with me. She was > extremely nervous all the time and was having pain in her legs (which from > reading I now think they are Restless leg syndrome). We were getting > desperate to find help for Mum, there were a few visits to the Emergency > Rooms at hospitals but they would just send us home and tell us to see her > Neurologist who did nothing. By the way when we were at the hospitals they > would give Mum pain relief that seemed to make her worse. > > > > Eventually we phoned the Parkinson Association who recommended we go to a > nearby clinic that specialize in Parkinson. Mum was admitted and they > started the assessment. They increased and or changed her medication and of > course she started to hallucinate and do all strange things like getting > aggressive with the staff. This went on for about two weeks and finally they > said they couldn't help her and we had to admit her to a Nursing Home as I > work full time and the way Mum was she couldn't be left on her own. > > > > Mum was still having the pains in her legs and it now moved to her vaginal > area as well. I had several fights with the Doctor at the Nursing Home as > nothing was changing, so we changed Neurologists and he at once lowered her > medication (he couldn't believe the amount she was on) and things seemed to > improve. > > > > Mum would still have her " Off " days but she seemed better. We also took her > to a Psychiatrist who was absolutely lovely with her (she developed a bit of > a crush on him.) > > > > Still everything revolved around me and Mum would come up with these stories > about how they were treating to her in the Nursing Home (we suspected it was > so that I would take her out and bring her home to live with me) but I was > keeping a careful look at everything and although there were some Nurses > that were a bit snappy the majority are very good with the patients. > > > > Then March 2010 my husband and I went for a 3 week trip overseas and when I > came back Mum was a mess and after I jumped up and down and changed the > Doctor in the Nursing Home for her lack of action . > > > > We took Mum back to the Neurologist and when I explained the new lot of > symptoms Mum had he re-diagnosed her as having LBD and so a new learning > curve began. > > > > On doing research I don't seem to find much information from Australia but > then I found the LBD website and from there I found your link and have > learnt a lot from reading your stories. > > > > At this stage (which I am not sure of the stages of LBD Mum is at) Mum has > the following: > > > > Stooped slow walk > > Loss of appetite (she has developed a taste for Mc's strawberry > sundaes and every weekend when I bring her home for a visit I get her one.) > > She seems to stick her tongue out and drools slightly > > Depressed (she keeps telling me she wishes she could die as she has had > enough) > > Bad pain in her vaginal area (The continually do tests for infections, she > has also had ultrasounds etc but nothing shows up) > > Delusions (these are becoming more frequent. Last week she hit one of the > men patients over the head with her shoe as she said he was raping all the > ladies at night, she also refuses her medications as she thinks they are > poisoning her.) > > Sleeping more thru the day, she has even been where they can't rouse her a > few times. > > > > Oh well I have come to the end of my story so far. Does anyone have any > ideas as to the vaginal pain? I would appreciate any suggestions. > > > > Bye for now > > > > Chezza > > From the land down under. > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 27, 2011 Report Share Posted January 27, 2011 cheeza  i was just thinking vagimal pain/numbness and leg pain,  has your mom had a husterctomy??? was it complte, meaning did thy take the ovariers adn cervicx too????? after a complte hystercomey it was determingd after i had been ocmpliang of thigh pain and faganal numbeness that i had some ovarian cell slet in my abdomen and they formed cycsts. at time i would have spotty bleeeding, not like a peroid, could be as litte as a dime, or bad enough that i doult toss the pnaties.   my thighs felt like they were on fire and as a mter of fact if someone tcouhed them i would slap their hand as a reaction htat is how bad it hurt. also low back issues, or even taoil bone issues may cuase vaginal numbess/pain. also there is a possibly to a little cyst, i dont rememer what iti si called, but it is in the vagianl area and can swell and get hard to teh touch, mine grew to the size of a peanut in the shell, and was very tender, it had to be drained NO FUN. but i had tried anitbiotics for 3 weeks prior to taht, adn since it iddnt shrink then i had to have it drained.   just a few things to think about.  take carea nd hugs. sharon Subject: Re: My experience with LBD To: LBDcaregivers Date: Wednesday, January 26, 2011, 5:27 PM  Dear Chezza, Your Mom sounds like an amazing person. I don't know about vaginal pain, but my Mom experienced lots of stomach pain - and I believe that really was the beginning of the Lewy Body. Is it possible that your Mom has lower stomach pain that may be mistaken for vaginal pain? You sound like such a wonderful daughter. Hugs from snowy NY, Helene (Mom 76, about 10 years in with LBD) > > Hi Everyone, > > > > Like everyone else I had not heard of LBD until last year when my Mum was > diagnosed with it. Here is a little background: > > > > My Mum was widowed at the age of 41, I was 19 and my brother was 14. After > this my Mum devoted her whole existence to my brother and I and later down > the track to our families. About 10 years ago Mum was diagnosed with > Parkinson's Disease. We read what we could and prepared ourselves (as well > as you can) for what was to happen. > > All was going OK until nearly three years ago when my Mum's brother died. > This seemed to hit my hard. One night I received a call from her saying she > was scared and didn't know what of. My husband said to go and bring her to > our place (he has been my savior thru all this) which I did. From that night > we have been on a downhill slide. > > > > She didn't want to go " Home " she just wanted to spend 24/7 with me. She was > extremely nervous all the time and was having pain in her legs (which from > reading I now think they are Restless leg syndrome). We were getting > desperate to find help for Mum, there were a few visits to the Emergency > Rooms at hospitals but they would just send us home and tell us to see her > Neurologist who did nothing. By the way when we were at the hospitals they > would give Mum pain relief that seemed to make her worse. > > > > Eventually we phoned the Parkinson Association who recommended we go to a > nearby clinic that specialize in Parkinson. Mum was admitted and they > started the assessment. They increased and or changed her medication and of > course she started to hallucinate and do all strange things like getting > aggressive with the staff. This went on for about two weeks and finally they > said they couldn't help her and we had to admit her to a Nursing Home as I > work full time and the way Mum was she couldn't be left on her own. > > > > Mum was still having the pains in her legs and it now moved to her vaginal > area as well. I had several fights with the Doctor at the Nursing Home as > nothing was changing, so we changed Neurologists and he at once lowered her > medication (he couldn't believe the amount she was on) and things seemed to > improve. > > > > Mum would still have her " Off " days but she seemed better. We also took her > to a Psychiatrist who was absolutely lovely with her (she developed a bit of > a crush on him.) > > > > Still everything revolved around me and Mum would come up with these stories > about how they were treating to her in the Nursing Home (we suspected it was > so that I would take her out and bring her home to live with me) but I was > keeping a careful look at everything and although there were some Nurses > that were a bit snappy the majority are very good with the patients. > > > > Then March 2010 my husband and I went for a 3 week trip overseas and when I > came back Mum was a mess and after I jumped up and down and changed the > Doctor in the Nursing Home for her lack of action . > > > > We took Mum back to the Neurologist and when I explained the new lot of > symptoms Mum had he re-diagnosed her as having LBD and so a new learning > curve began. > > > > On doing research I don't seem to find much information from Australia but > then I found the LBD website and from there I found your link and have > learnt a lot from reading your stories. > > > > At this stage (which I am not sure of the stages of LBD Mum is at) Mum has > the following: > > > > Stooped slow walk > > Loss of appetite (she has developed a taste for Mc's strawberry > sundaes and every weekend when I bring her home for a visit I get her one.) > > She seems to stick her tongue out and drools slightly > > Depressed (she keeps telling me she wishes she could die as she has had > enough) > > Bad pain in her vaginal area (The continually do tests for infections, she > has also had ultrasounds etc but nothing shows up) > > Delusions (these are becoming more frequent. Last week she hit one of the > men patients over the head with her shoe as she said he was raping all the > ladies at night, she also refuses her medications as she thinks they are > poisoning her.) > > Sleeping more thru the day, she has even been where they can't rouse her a > few times. > > > > Oh well I have come to the end of my story so far. Does anyone have any > ideas as to the vaginal pain? I would appreciate any suggestions. > > > > Bye for now > > > > Chezza > > From the land down under. > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 27, 2011 Report Share Posted January 27, 2011 Hi Sharon, No Mum has had a hysterectomy but they have X-ray, ct scan but nothing shows up. The pain isn’t there all the time, it comes mostly at night or if during the day she get really agitated over something. She seems to go thru different parts of the body, last week it was her teeth, she only has six of her own on the bottom and to her they were broken and had holes in them (but all were fine) she also said one of the top teeth hurt when the wind blows, but they are all false on the top. She also has dark spots on her hands (bruises) but she seems to think they are something else, she asks everyone what they think. Yesterday when I went to see her she was quiet good, but by the time I was leaving she was getting the pains back again, she tells me she is tired all the time and can’t understand why. Mum had two of her old friends visit on Wednesday and she told me they were surprised that she could still remember them, but surprisingly her memory of “The Old†days is very good. She seems to have difficulty in trying to tell me what she needs and she is forgetting her great grandchildren’s names but still has pleasure on the weekends when I take her to see them. We can just take one day at a time. Keep up the fight. Cheers Cheryl From: LBDcaregivers [mailto:LBDcaregivers ] On Behalf Of Sharon Murray Sent: Thursday, January 27, 2011 11:35 PM To: LBDcaregivers Subject: Re: Re: My experience with LBD cheeza i was just thinking vagimal pain/numbness and leg pain, has your mom had a husterctomy??? was it complte, meaning did thy take the ovariers adn cervicx too????? after a complte hystercomey it was determingd after i had been ocmpliang of thigh pain and faganal numbeness that i had some ovarian cell slet in my abdomen and they formed cycsts. at time i would have spotty bleeeding, not like a peroid, could be as litte as a dime, or bad enough that i doult toss the pnaties. my thighs felt like they were on fire and as a mter of fact if someone tcouhed them i would slap their hand as a reaction htat is how bad it hurt. also low back issues, or even taoil bone issues may cuase vaginal numbess/pain. also there is a possibly to a little cyst, i dont rememer what iti si called, but it is in the vagianl area and can swell and get hard to teh touch, mine grew to the size of a peanut in the shell, and was very tender, it had to be drained NO FUN. but i had tried anitbiotics for 3 weeks prior to taht, adn since it iddnt shrink then i had to have it drained. just a few things to think about. take carea nd hugs. sharon From: hgm54 <hgm54@... <mailto:hgm54%40yahoo.com> > Subject: Re: My experience with LBD To: LBDcaregivers <mailto:LBDcaregivers%40yahoogroups.com> Date: Wednesday, January 26, 2011, 5:27 PM Dear Chezza, Your Mom sounds like an amazing person. I don't know about vaginal pain, but my Mom experienced lots of stomach pain - and I believe that really was the beginning of the Lewy Body. Is it possible that your Mom has lower stomach pain that may be mistaken for vaginal pain? You sound like such a wonderful daughter. Hugs from snowy NY, Helene (Mom 76, about 10 years in with LBD) > > Hi Everyone, > > > > Like everyone else I had not heard of LBD until last year when my Mum was > diagnosed with it. Here is a little background: > > > > My Mum was widowed at the age of 41, I was 19 and my brother was 14. After > this my Mum devoted her whole existence to my brother and I and later down > the track to our families. About 10 years ago Mum was diagnosed with > Parkinson's Disease. We read what we could and prepared ourselves (as well > as you can) for what was to happen. > > All was going OK until nearly three years ago when my Mum's brother died. > This seemed to hit my hard. One night I received a call from her saying she > was scared and didn't know what of. My husband said to go and bring her to > our place (he has been my savior thru all this) which I did. From that night > we have been on a downhill slide. > > > > She didn't want to go " Home " she just wanted to spend 24/7 with me. She was > extremely nervous all the time and was having pain in her legs (which from > reading I now think they are Restless leg syndrome). We were getting > desperate to find help for Mum, there were a few visits to the Emergency > Rooms at hospitals but they would just send us home and tell us to see her > Neurologist who did nothing. By the way when we were at the hospitals they > would give Mum pain relief that seemed to make her worse. > > > > Eventually we phoned the Parkinson Association who recommended we go to a > nearby clinic that specialize in Parkinson. Mum was admitted and they > started the assessment. They increased and or changed her medication and of > course she started to hallucinate and do all strange things like getting > aggressive with the staff. This went on for about two weeks and finally they > said they couldn't help her and we had to admit her to a Nursing Home as I > work full time and the way Mum was she couldn't be left on her own. > > > > Mum was still having the pains in her legs and it now moved to her vaginal > area as well. I had several fights with the Doctor at the Nursing Home as > nothing was changing, so we changed Neurologists and he at once lowered her > medication (he couldn't believe the amount she was on) and things seemed to > improve. > > > > Mum would still have her " Off " days but she seemed better. We also took her > to a Psychiatrist who was absolutely lovely with her (she developed a bit of > a crush on him.) > > > > Still everything revolved around me and Mum would come up with these stories > about how they were treating to her in the Nursing Home (we suspected it was > so that I would take her out and bring her home to live with me) but I was > keeping a careful look at everything and although there were some Nurses > that were a bit snappy the majority are very good with the patients. > > > > Then March 2010 my husband and I went for a 3 week trip overseas and when I > came back Mum was a mess and after I jumped up and down and changed the > Doctor in the Nursing Home for her lack of action . > > > > We took Mum back to the Neurologist and when I explained the new lot of > symptoms Mum had he re-diagnosed her as having LBD and so a new learning > curve began. > > > > On doing research I don't seem to find much information from Australia but > then I found the LBD website and from there I found your link and have > learnt a lot from reading your stories. > > > > At this stage (which I am not sure of the stages of LBD Mum is at) Mum has > the following: > > > > Stooped slow walk > > Loss of appetite (she has developed a taste for Mc's strawberry > sundaes and every weekend when I bring her home for a visit I get her one.) > > She seems to stick her tongue out and drools slightly > > Depressed (she keeps telling me she wishes she could die as she has had > enough) > > Bad pain in her vaginal area (The continually do tests for infections, she > has also had ultrasounds etc but nothing shows up) > > Delusions (these are becoming more frequent. Last week she hit one of the > men patients over the head with her shoe as she said he was raping all the > ladies at night, she also refuses her medications as she thinks they are > poisoning her.) > > Sleeping more thru the day, she has even been where they can't rouse her a > few times. > > > > Oh well I have come to the end of my story so far. Does anyone have any > ideas as to the vaginal pain? I would appreciate any suggestions. > > > > Bye for now > > > > Chezza > > From the land down under. > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 29, 2011 Report Share Posted January 29, 2011 Hi Joan, For the last 2 days Mom has put her makeup on. That is a good sign that she is healing, possibly feeling like looking good to her is a good sign. She always put her makeup on prior to breaking her arm. She is moving her arm a little bit more now, that is good. But she does have some bad days mostly, but it is getting closer to 2 months she broke her arm, so it must be healing. Every day almost there is one or two people up there falling in that home. Mom's friend who helps cut her meat at lunch when I'm not there, etc., she lives there and has no dementia, she has congestive heart failure, but she is a feisty lady for sure! She knows everything going on in that home and tells me everything. I like to know what is going on so its good to have Vada. Love and Prayers, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 29, 2011 Report Share Posted January 29, 2011 I want to second what said. I am sorry Elaine. Love a lot, Imogene In a message dated 1/29/2011 12:18:58 P.M. Central Standard Time, stim@... writes: Dear Elaine, You are so young to be going through the loss of a second husband. I am relieved to hear you sounding at peace with the end of his journey and that he is peaceful as well. I am sorry that you are going through this and you know many here are with you in heart. > > , thank you for your loving comments. > > You have had some difficult moments caring for your mother ... and how hard > it must be for your mother to experience such frightening hallucinations and > dreams, not to mention so many fractures. > > I often try to put myself in the shoes of those who suffer with LBD and I > find it heartbreaking, especially when they are still aware of what they are > going through. > > Thankfully my dear Jim is peaceful as he walks the last stage of his > journey. > > Last night I spent a lot of time emailing family and friends to let them > know what is happening. It was a sobering time as the reality sank in that > Jim is dying. > > Although I have prepared myself as much as possible for this time, now that > it is here I find it somewhat surreal. I feel as though life is playing in > slow motion at the moment. After days and months of being full-time carer, > when you are run off your feet at times and always being on red alert in > case he is going to the bathroom or getting out of bed and about to fall > over .... I am now sitting with him reading or doing crosswords or sudokus > to keep my brain alert, listening to the cds I have brought in from home for > him as soothing background music or just sitting there reminiscing. It's > peaceful in so many ways yet so sad. > > My first husband died suddenly so that experience was dominated by shock and > numbness. Now I am cherishing the opportunities to walk this journey with > Jim. > > Yes it is summer here in Australia and we are experiencing quite a different > one this year. Last year fires dominated, but this year it is floods which > are breaking the droughts. Here in Sydney we have been spared these dramatic > extremes of nature this summer. However, my sister in Perth and my son in > northern Queensland are both preparing for cyclones to strike land where > they live. Thankfully after a very warm and humid week, Sydney is cool this > morning with a light rain. It will be lovely to walk through this rain > before entering the artificial atmosphere of the hospital! > > > > Elaine (61) from Sydney Australia > > Caring for husband Jim (82) who was offically diagnosed LBD Oct 2009, but > symptoms began at least 5 years before. > > > > > > > > [Non-text portions of this message have been removed] > ------------------------------------ Welcome to LBDcaregivers. Quote Link to comment Share on other sites More sharing options...
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