Guest guest Posted July 22, 2006 Report Share Posted July 22, 2006 , Has your mother been checked for a Cystocele or Rectocele? In many people the bladder nor the rectum are able to evacuate properly, and they remain almost full. When a little more is released into those areas, they are unable to contain any more, and your Mother must go frequently. If your mother was able to take care of the evacuation the way she used to, then things would be alright, but now she can't remember what she did to relieve herself. Small enemas of clear warm water works every few days. Standing over the toilet, and tilting her body forward, perhaps while she leans on a walker may help to relieve her bladder more fully. If she has either of those problems, she can have trouble such as infections. Imogene In a message dated 7/22/2006 11:37:10 PM Central Daylight Time, pwood@... writes: Hello, I was wondering if anyone has suggestions for *very* frequent urination. During the day my Mom goes to the bathroom about once every 10 minutes. At night it is less frequent and I have been able to extend the intervals to a few hours using AmbienCR. She is not incontinent except when I give her the AmbienCR. She actually has no problem falling asleep, but the AmbienCR helps her stay asleep. My Mom was diagnosed with LBD about 2 years ago and there has been a rapid progression (worsening) of the symptoms in the last year. I believe that the early symptoms were overlooked. Up until about 80 years of age she was very active, even doing hard physical work like laying bricks. About 5 years ago she fell on some stairs (due to a loose brick) and broke her rib. She had to be still for about 1 month and after that she lost the range of motion in her arms. I thought it was due to " freezing up " of her arms from lack of use, but in hind sight I think it may have been an early symptom of LBD - or at least " freezing up " aggravated by LBD so that her attempts at physical therapy to regain more range of motion were not successful. The next symptom to show up was numb legs, which started suddenly in her right leg while mowing the lawn with the lawn tractor. This occurred about 3 years ago. At first the doctors were thinking she had a mini stroke. Many MRI's later the stroke theory was dismissed but no specific diagnose was determined except that her spine showed osteoarthritis and some spurs so a pinch nerved seemed most likely. The MRI's also showed a very substantial " white " signal in the upper spine going into the neck. This odd feature was never identified and remains that way today - nobody knows what it is. Eventually both her legs became numb and she started walking with a shuffling gait with her hands held high at her chest (rather than at her side like normal). Initially the doctors thought she was shuffling because of the numbness - she wasn't getting a tactile sense from her feet so she walked more cautiously. When memory and confusion problems began to surface the diagnosis changed to LBD. Until 1 year ago she was able to take care of herself. One night she got up to go to the bathroom (she was going often at this time, but I was asleep and unaware of what was going on) and fell. I got up and helped her back up and she went off to the bathroom. About an hour later she fell again and this time I told her to call me when she needed to get up, and it has continued unabated since then. She has had hallucinations, but only when waking up. The hallucinations mostly involved food - something she was making or eating. She would sometimes wake up confused as to where she was and wanting to go home. When she is in the confused state she doesn't recognize me and tells me she needs to get back home and could I go get . I reassure that I'm and usually within a few minutes I can get her back in bed and sleeping. Her medications have helped reduce these hallucinations so that they are very rare. She takes Aricept, Namenda, Salsalate (for arthritis), Fosamax, and Lexapro. The doctor thought that the frequent urination could be a compulsive beahvior and that Lexapro might help. The Lexapro hasn't slowed down the urination but may have helped eliminate hallucinations and some odd thoughts (she used to think that flushing the toilet made the bed more comfortable - this was probably a compulsive behavior because she wanted to make sure the toilet was flushed and this is how she expressed that need). Is frequent urination common with LBD? We've tried overactive bladder medications (OAB) with no success. They work just the opposite of Aricept and while OAB medications in theory don't go into the brain, Aricept will get down to the bladder nerve and make sure it works " very well. " Has anyone had success slowing down frequent urination. She also does not have one or two large bowel movements, but has several smaller bowel movements and this just adds to her bathroom trips during the day. I am taking care of my Mom in her home and have caregivers come during the day. At night and on weekends I am the sole caregiver. This arrangement keeps it within our budget, but the nights are hard on me because she still gets up 5 or 6 times a night (it would be a dozen or more times without AmbienCR). Best Regards, -- A. D. Wood pwood@... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 23, 2006 Report Share Posted July 23, 2006 Great advice. Sorry, , but I don't have any advice - what Imogene wrote may be it... , Has your mother been checked for a Cystocele or Rectocele? In many people the bladder nor the rectum are able to evacuate properly, and they remain almost full. When a little more is released into those areas, they are unable to contain any more, and your Mother must go frequently. > If your mother was able to take care of the evacuation the way she used to, then things would be alright, but now she can't remember what she did to relieve herself. Small enemas of clear warm water works every few days. > Standing over the toilet, and tilting her body forward, perhaps while she leans on a walker may help to relieve her bladder more fully. If she has either of those problems, she can have trouble such as infections. > Imogene Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 23, 2006 Report Share Posted July 23, 2006 Hi , I would check your mom out for a urinary tract infection, if that has not already been done. Not uncommon and treating one if it exists could help her physically and mentally. They can really take our lo down. , Oakville Ont. Mom 92, 13 years " Parkinsons " 3 1/2 years ago LBD diagnosis, evident much longer in hindsight. Encouraged to give up her licence 6 years ago. Eltroxin, Tylenol 1g 3 times a day Off Aricept since Feb./06 On " gentle care " June 30/06, spoon-fed pureed foods, swallowing very compromised > > Hello, > I was wondering if anyone has suggestions for *very* frequent > urination. During the day my Mom goes to the bathroom about once every > 10 minutes. At night it is less frequent and I have been able to extend > the intervals to a few hours using AmbienCR. She is not incontinent > except when I give her the AmbienCR. She actually has no problem > falling asleep, but the AmbienCR helps her stay asleep. > My Mom was diagnosed with LBD about 2 years ago and there has been a > rapid progression (worsening) of the symptoms in the last year. I > believe that the early symptoms were overlooked. Up until about 80 > years of age she was very active, even doing hard physical work like > laying bricks. About 5 years ago she fell on some stairs (due to a > loose brick) and broke her rib. She had to be still for about 1 month > and after that she lost the range of motion in her arms. I thought it > was due to " freezing up " of her arms from lack of use, but in hind sight > I think it may have been an early symptom of LBD - or at least " freezing > up " aggravated by LBD so that her attempts at physical therapy to regain > more range of motion were not successful. > The next symptom to show up was numb legs, which started suddenly in > her right leg while mowing the lawn with the lawn tractor. This > occurred about 3 years ago. At first the doctors were thinking she had > a mini stroke. Many MRI's later the stroke theory was dismissed but no > specific diagnose was determined except that her spine showed > osteoarthritis and some spurs so a pinch nerved seemed most likely. The > MRI's also showed a very substantial " white " signal in the upper spine > going into the neck. This odd feature was never identified and remains > that way today - nobody knows what it is. Eventually both her legs > became numb and she started walking with a shuffling gait with her hands > held high at her chest (rather than at her side like normal). Initially > the doctors thought she was shuffling because of the numbness - she > wasn't getting a tactile sense from her feet so she walked more > cautiously. When memory and confusion problems began to surface the > diagnosis changed to LBD. > Until 1 year ago she was able to take care of herself. One night > she got up to go to the bathroom (she was going often at this time, but > I was asleep and unaware of what was going on) and fell. I got up and > helped her back up and she went off to the bathroom. About an hour > later she fell again and this time I told her to call me when she needed > to get up, and it has continued unabated since then. > She has had hallucinations, but only when waking up. The > hallucinations mostly involved food - something she was making or > eating. She would sometimes wake up confused as to where she was and > wanting to go home. When she is in the confused state she doesn't > recognize me and tells me she needs to get back home and could I go get > . I reassure that I'm and usually within a few minutes I can > get her back in bed and sleeping. Her medications have helped reduce > these hallucinations so that they are very rare. She takes Aricept, > Namenda, Salsalate (for arthritis), Fosamax, and Lexapro. The doctor > thought that the frequent urination could be a compulsive beahvior and > that Lexapro might help. The Lexapro hasn't slowed down the urination > but may have helped eliminate hallucinations and some odd thoughts (she > used to think that flushing the toilet made the bed more comfortable - > this was probably a compulsive behavior because she wanted to make sure > the toilet was flushed and this is how she expressed that need). > Is frequent urination common with LBD? We've tried overactive > bladder medications (OAB) with no success. They work just the opposite > of Aricept and while OAB medications in theory don't go into the brain, > Aricept will get down to the bladder nerve and make sure it works " very > well. " Has anyone had success slowing down frequent urination. She > also does not have one or two large bowel movements, but has several > smaller bowel movements and this just adds to her bathroom trips during > the day. > I am taking care of my Mom in her home and have caregivers come > during the day. At night and on weekends I am the sole caregiver. This > arrangement keeps it within our budget, but the nights are hard on me > because she still gets up 5 or 6 times a night (it would be a dozen or > more times without AmbienCR). > > Best Regards, > > > -- > A. D. Wood > pwood@... > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 23, 2006 Report Share Posted July 23, 2006 Oh Mercy, dear Sharon M. What you have endured! And are still dealing with in keeping all things sanitary, and emptied. When I was a kid, I had to urinate very badly, and my Mama said, " Well, go here. " In my bloomers? " Sure, she told me. We were wading in water. I couldn't just go in my underpants, no way. I had to get down in the water, before it could happen. Funny how we think. Imogene In a message dated 7/23/2006 2:03:14 PM Central Daylight Time, LadySmilingAtU2@... writes: jacqui, there actually is a disease called interstitial cystitis which is what i have had since 1978, although the disease was named in 1985. it is terrible, the need to pee urgently, even burning, stinging, and bladder spasms, but no uti detected. it is actually called teh mad womans' disease because it effects primarily women, and doctors couldnt find anthing wrong, and diagnosed stress and rest to relieve symtpoms, one actually has to have teh bladder filled under sedation and looked at, to see the tiny tell tale hemmorages of IC. i eventually had my bladder removed due to the lack of sleep, thepain and misery, but that was after numerous other surgeries trying to relieve teh pain and pressure. suicide rate of cancer is 1 in 10, the suicide rate of ic patients is 1 in 4. elmiron is one leading medicatoin that helps many ic patients, i dont kjnow how it would be for lbd and dementia patients. but my point is with ic the need to pee is very real, and can happen every 10 minutes or so. it is agony not being able to pee when you need to go, and yes the 2-3 minutes that an aide takes to get there, can seem interminable, i remember leaving a concert and being in tears not being to get to a bathroom for 20 minutes. i actually got out of the car before my date totatly stopped teh car because teh pain was so intense that i was doubled over with the need to pee, and yes i only peed a few tablespoons, not even enough to make the toilet water change from clear color. many people suggested to me to wear diapers so i can pee whenever i need to, but for me, it was too difficult to relax and pee in public even in a concealed diaper and with what your mother went thru in her childhood, it would be even harder, as she is ingrained in her brain not to wet her clothes, bed etc/ so her concscience mind adn her subconscince are fighting each other, do i releive myself and not worry abuot it or do i hold on to it and be in agony, it is amazing how we are so 'trained ' as kids to pee in the toilet and ont in the diaper that years later when we have bladder issues that make us have 'holding problems' but have been programmed to not use a diaper anymore. a good link for more information on this is http://www.ichelp.org/ it is the interstitial cystitis association, which i was a member of for many years. (victoria, thought you may want to give a link for overactive bladder and uti symptoms but no diagnosed uti. thanks ) good luck and hugs, sharon m -- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 23, 2006 Report Share Posted July 23, 2006 Hi, , >During the day my Mom goes to the bathroom about once every >10 minutes. At night it is less frequent and I have been able to extend >the intervals to a few hours using AmbienCR. She is not incontinent >except when I give her the AmbienCR. She actually has no problem >falling asleep, but the AmbienCR helps her stay asleep. > > My mother has had a problem for years of frequent urination. Though not as often as every 10 minutes, it was at least once an hour and once every couple of hours at night. The amount of urine was small each time, but the urgency for her was that of a full bladder emergency. I encouraged her for a long time to try medicine to releive the sensation of urgency and she refused. I don't know how many years she went without a full night's sleep due to her anxiety about " wetting the bed, " and wore women's sanitary mini pads to protect her clothing from tiny " leaking " episodes due to stress incontinence or unavailability of the bathroom when she needed it. Her feeling of having to urinate would come upon her without advance warning and she would find herself unable to go more than a couple minutes without leaking. After the fall which precipitated the onset of what we recognized as LBD, her doctor prescribed medication to address the sensation of urgency. Mom now is able to make bathroom trips only three or four times a day and even sleeps through the night often, though she is positive she " floods the bed " on those nights. She wears adult undergarments to protect her and her bed, but she still has the perception of being " drenched " in the morning, though the chart notes reflect that the pad will be damp but not soaking wet. Her new doctor has been vigilant about checking for UTIs and recently has been conducting bladder retention tests. They demonstrate that she is voiding 100% of what is in her bladder. We have been through four OAB medications and the one she is on now seems to be effective without exacerbating her LBD symptoms. Mom was started on Exelon about a month ago and it doesn't seem to be affecting her urination frequency or sense of urgency. What she finds most difficult is the lack of advance warning she has that she needs to urinate, and thus the wait to get an aide to help her to the bathroom seems interminable (even if it is only two or three minutes). She is sure that she is wetting her clothing, although the reports from her caregivers is that she is dry (the last time she told me that she could feel urine trickling down her leg, when in fact she was completely dry). Mom is on Seroquel which started at 25 mg with some benefit, increased to 25 mg twice a day with the subsequent sedation and drowsiness, and then changed to 37.5 mg at bedtime which seems to have solved the issue of sedation and is helping but not eliminating hallucinations. Mom's history of abuse as a child, including terrible beatings for many things as well as wetting her bed, has made her terrified of wetting the bed at night. She obsesses endlessly about this, including being terrified if she finds her supply of pads in her nightstand to be limited to one or two (although the entire package is in her closet). We have many conversations about the ways she comes up with to solve this problem as well as her tearful concerns that she will be kicked out of the nursing home because of it. I would love to find a solution to the problem but don't count on it. (The need to get up at night to go to the bathroom is one of the reasons Mom is in the nursing home where there is awake staff 24 hours a day...she falls when she gets up and MUST have someone with her when she is on her feet.) Good luck, , in finding a solution. Your mom is lucky to have such an informed and loving son and advocate participating in her care. jacqui (in Puget Sound) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 23, 2006 Report Share Posted July 23, 2006 jacqui, there actually is a disease called interstitial cystitis which is what i have had since 1978, although the disease was named in 1985. it is terrible, the need to pee urgently, even burning, stinging, and bladder spasms, but no uti detected. it is actually called teh mad womans' disease because it effects primarily women, and doctors couldnt find anthing wrong, and diagnosed stress and rest to relieve symtpoms, one actually has to have teh bladder filled under sedation and looked at, to see the tiny tell tale hemmorages of IC. i eventually had my bladder removed due to the lack of sleep, thepain and misery, but that was after numerous other surgeries trying to relieve teh pain and pressure. suicide rate of cancer is 1 in 10, the suicide rate of ic patients is 1 in 4. elmiron is one leading medicatoin that helps many ic patients, i dont kjnow how it would be for lbd and dementia patients. but my point is with ic the need to pee is very real, and can happen every 10 minutes or so. it is agony not being able to pee when you need to go, and yes the 2-3 minutes that an aide takes to get there, can seem interminable, i remember leaving a concert and being in tears not being to get to a bathroom for 20 minutes. i actually got out of the car before my date totatly stopped teh car because teh pain was so intense that i was doubled over with the need to pee, and yes i only peed a few tablespoons, not even enough to make the toilet water change from clear color. many people suggested to me to wear diapers so i can pee whenever i need to, but for me, it was too difficult to relax and pee in public even in a concealed diaper and with what your mother went thru in her childhood, it would be even harder, as she is ingrained in her brain not to wet her clothes, bed etc/ so her concscience mind adn her subconscince are fighting each other, do i releive myself and not worry abuot it or do i hold on to it and be in agony, it is amazing how we are so 'trained ' as kids to pee in the toilet and ont in the diaper that years later when we have bladder issues that make us have 'holding problems' but have been programmed to not use a diaper anymore. a good link for more information on this is http://www.ichelp.org/ it is the interstitial cystitis association, which i was a member of for many years. (victoria, thought you may want to give a link for overactive bladder and uti symptoms but no diagnosed uti. thanks ) good luck and hugs, sharon m -- Daugher of Leonard, diag May 2004, had lbd since 1993, had hip surgery from fall 7/05, aspiration pneumonia 7/05 with pulmonary embolyis, had aspiration pneumonia and uti 8/05, died of blood pressure drop on 9/25/05, may he rest in peace with his mom and dad, a smile a day keeps the meanies away ---- jacqui wrote: Hi, , >During the day my Mom goes to the bathroom about once every >10 minutes. At night it is less frequent and I have been able to extend >the intervals to a few hours using AmbienCR. She is not incontinent >except when I give her the AmbienCR. She actually has no problem >falling asleep, but the AmbienCR helps her stay asleep. > > My mother has had a problem for years of frequent urination. Though not as often as every 10 minutes, it was at least once an hour and once every couple of hours at night. The amount of urine was small each time, but the urgency for her was that of a full bladder emergency. I encouraged her for a long time to try medicine to releive the sensation of urgency and she refused. I don't know how many years she went without a full night's sleep due to her anxiety about " wetting the bed, " and wore women's sanitary mini pads to protect her clothing from tiny " leaking " episodes due to stress incontinence or unavailability of the bathroom when she needed it. Her feeling of having to urinate would come upon her without advance warning and she would find herself unable to go more than a couple minutes without leaking. After the fall which precipitated the onset of what we recognized as LBD, her doctor prescribed medication to address the sensation of urgency. Mom now is able to make bathroom trips only three or four times a day and even sleeps through the night often, though she is positive she " floods the bed " on those nights. She wears adult undergarments to protect her and her bed, but she still has the perception of being " drenched " in the morning, though the chart notes reflect that the pad will be damp but not soaking wet. Her new doctor has been vigilant about checking for UTIs and recently has been conducting bladder retention tests. They demonstrate that she is voiding 100% of what is in her bladder. We have been through four OAB medications and the one she is on now seems to be effective without exacerbating her LBD symptoms. Mom was started on Exelon about a month ago and it doesn't seem to be affecting her urination frequency or sense of urgency. What she finds most difficult is the lack of advance warning she has that she needs to urinate, and thus the wait to get an aide to help her to the bathroom seems interminable (even if it is only two or three minutes). She is sure that she is wetting her clothing, although the reports from her caregivers is that she is dry (the last time she told me that she could feel urine trickling down her leg, when in fact she was completely dry). Mom is on Seroquel which started at 25 mg with some benefit, increased to 25 mg twice a day with the subsequent sedation and drowsiness, and then changed to 37.5 mg at bedtime which seems to have solved the issue of sedation and is helping but not eliminating hallucinations. Mom's history of abuse as a child, including terrible beatings for many things as well as wetting her bed, has made her terrified of wetting the bed at night. She obsesses endlessly about this, including being terrified if she finds her supply of pads in her nightstand to be limited to one or two (although the entire package is in her closet). We have many conversations about the ways she comes up with to solve this problem as well as her tearful concerns that she will be kicked out of the nursing home because of it. I would love to find a solution to the problem but don't count on it. (The need to get up at night to go to the bathroom is one of the reasons Mom is in the nursing home where there is awake staff 24 hours a day...she falls when she gets up and MUST have someone with her when she is on her feet.) Good luck, , in finding a solution. Your mom is lucky to have such an informed and loving son and advocate participating in her care. jacqui (in Puget Sound) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 23, 2006 Report Share Posted July 23, 2006 Now, see where experience is so vital to help all of us. Great Hint, Sharon M. The urination problem I was familiar with, as well as the bowel problem was with my mother. She gave birth to eleven children. From that proplapse was inevitable. Imogene Caregiver for my True Texas Gentleman husband of 35 years. He has LBD with Parkinsonism. In a message dated 7/23/2006 8:08:34 PM Central Daylight Time, LadySmilingAtU2@... writes: imogene, you brought up something that i would like to address as well, the sanitary and emptying cleaning issues. i have purchased large bed pads from www.DrLeonards.com they are called waterproof bed pads, and are quite large, i see they now have larger bed sizes now. but these wash very well, and we would make dad's bed in layers to save time when he messed. we would have the horrible hosp mattress which is plastic and makes our loved ones sweat and stick to it, est if they hve restless leg or body syndrome. so what i would do is make the bed in layers, with clean fitted sheets over this bed pads and make it several layers so when dad had an accident, while donnie was showering him i could swiftly take off the wet layers and be ready for him to come back to bed in less than a minute or 2, and when the hospice aide came on mon wed fri we would add addtiional layers if necessary. this saved alot of time. now for washing i live and swear by liquid oxyclean, i use one capful for every load i do, and the clothes come out smelling clean not fragranted. teh urine smells are gone, i even use it on the dogs and cats beds and it is great!!!! i also use all lfree liquid detergent as some detergents are too harsh for me or for my dad. but we were able to use snuggle or downy softeners, i used fresh clean for most clothes and lavender scented for towels and bed clothes, dad said he liked the clean frest smell of it, so i ended up using it on all his clothes. i will admit however, we invested alot in shorts and pants as dad wouldnt wear underwear. and when he had a bowel movement i had to throw them away as my tummy couldnt handle cleaning up his extra large piles. also you can request from hospice or go to most medical supply stores, although some drug stores may have this as well , i suggest unscented odor eliminator, there are many different brands but i have personnaly used hollister brand and dignity brand and the unscented works fine, it eliminates teh smells doesnt cover it up, i hope all this helps, hugs, sharon m -- Daugher of Leonard, diaag May 2004, had lbd since 1993, had hip surgery from fall 7/05, aspiration pneumonia 7/05 with pulmonary embolyis, had aspiration pneumonia and uti 8/05, died of blood pressure drop 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 July 23, 2006 Report Share Posted July 23, 2006 imogene, you brought up something that i would like to address as well, the sanitary and emptying cleaning issues. i have purchased large bed pads from www.DrLeonards.com they are called waterproof bed pads, and are quite large, i see they now have larger bed sizes now. but these wash very well, and we would make dad's bed in layers to save time when he messed. we would have the horrible hosp mattress which is plastic and makes our loved ones sweat and stick to it, est if they hve restless leg or body syndrome. so what i would do is make the bed in layers, with clean fitted sheets over this bed pads and make it several layers so when dad had an accident, while donnie was showering him i could swiftly take off the wet layers and be ready for him to come back to bed in less than a minute or 2, and when the hospice aide came on mon wed fri we would add addtiional layers if necessary. this saved alot of time. now for washing i live and swear by liquid oxyclean, i use one capful for every load i do, and the clothes come out smelling clean not fragranted. teh urine smells are gone, i even use it on the dogs and cats beds and it is great!!!! i also use all lfree liquid detergent as some detergents are too harsh for me or for my dad. but we were able to use snuggle or downy softeners, i used fresh clean for most clothes and lavender scented for towels and bed clothes, dad said he liked the clean frest smell of it, so i ended up using it on all his clothes. i will admit however, we invested alot in shorts and pants as dad wouldnt wear underwear. and when he had a bowel movement i had to throw them away as my tummy couldnt handle cleaning up his extra large piles. also you can request from hospice or go to most medical supply stores, although some drug stores may have this as well , i suggest unscented odor eliminator, there are many different brands but i have personnaly used hollister brand and dignity brand and the unscented works fine, it eliminates teh smells doesnt cover it up, i hope all this helps, hugs, sharon m -- Daugher of Leonard, diaag May 2004, had lbd since 1993, had hip surgery from fall 7/05, aspiration pneumonia 7/05 with pulmonary embolyis, had aspiration pneumonia and uti 8/05, died of blood pressure drop on 9/25/05, may he rest in peace with his mom and dad, a smile a day keeps the meanies away ---- Iward27663@... wrote: Oh Mercy, dear Sharon M. What you have endured! And are still dealing with in keeping all things sanitary, and emptied. When I was a kid, I had to urinate very badly, and my Mama said, " Well, go here. " In my bloomers? " Sure, she told me. We were wading in water. I couldn't just go in my underpants, no way. I had to get down in the water, before it could happen. Funny how we think. Imogene In a message dated 7/23/2006 2:03:14 PM Central Daylight Time, LadySmilingAtU2@... writes: jacqui, there actually is a disease called interstitial cystitis which is what i have had since 1978, although the disease was named in 1985. it is terrible, the need to pee urgently, even burning, stinging, and bladder spasms, but no uti detected. it is actually called teh mad womans' disease because it effects primarily women, and doctors couldnt find anthing wrong, and diagnosed stress and rest to relieve symtpoms, one actually has to have teh bladder filled under sedation and looked at, to see the tiny tell tale hemmorages of IC. i eventually had my bladder removed due to the lack of sleep, thepain and misery, but that was after numerous other surgeries trying to relieve teh pain and pressure. suicide rate of cancer is 1 in 10, the suicide rate of ic patients is 1 in 4. elmiron is one leading medicatoin that helps many ic patients, i dont kjnow how it would be for lbd and dementia patients. but my point is with ic the need to pee is very real, and can happen every 10 minutes or so. it is agony not being able to pee when you need to go, and yes the 2-3 minutes that an aide takes to get there, can seem interminable, i remember leaving a concert and being in tears not being to get to a bathroom for 20 minutes. i actually got out of the car before my date totatly stopped teh car because teh pain was so intense that i was doubled over with the need to pee, and yes i only peed a few tablespoons, not even enough to make the toilet water change from clear color. many people suggested to me to wear diapers so i can pee whenever i need to, but for me, it was too difficult to relax and pee in public even in a concealed diaper and with what your mother went thru in her childhood, it would be even harder, as she is ingrained in her brain not to wet her clothes, bed etc/ so her concscience mind adn her subconscince are fighting each other, do i releive myself and not worry abuot it or do i hold on to it and be in agony, it is amazing how we are so 'trained ' as kids to pee in the toilet and ont in the diaper that years later when we have bladder issues that make us have 'holding problems' but have been programmed to not use a diaper anymore. a good link for more information on this is http://www.ichelp.org/ it is the interstitial cystitis association, which i was a member of for many years. (victoria, thought you may want to give a link for overactive bladder and uti symptoms but no diagnosed uti. thanks ) good luck and hugs, sharon m -- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 23, 2006 Report Share Posted July 23, 2006 Hello My mum died almost a year ago now and one of her obsessive behaviours in her early LBD illness was this persistence in going to the toilet. We had all the urinary tract medications, specialist appointments and with time as with many of the strange behaviour patterns of LBD patients it disappeared and was replaced by the next more pressing problem, it is simply a part of the LBD path and one hopes that it passes with time like it did with my mother. We are often too quick to medicate but with gentle persuasion and care the habit corrected itself. If you read other care givers e-mails the pattern is the same, depending on where you are and the patients treatment the path is almost the same, it just differs by way of the medical practitioners and how lucky you are on finding one that understands the disease. I read as many of your e-mails and the road is the same just with a few tracts that go off in different directions at times. The greatest stroke of luck we had was that we had in New Zealand medical practitioners who were very well aware of the drugs available the combinations and the care that they showed my mother was wonderful. Though she died of a dreadful disease, commonsense and a very clear picture that almost all patients follow allows for the patient to have the very best care and the kindest of medication to allow them a slightly easier passage. This doesn't mean that your loved one may not have a urinary tract problem, but all the patients and LBS sufferers that we have had contact with over the years have followed a very similar path cheers stella Re: Frequent urination Hi , I would check your mom out for a urinary tract infection, if that has not already been done. Not uncommon and treating one if it exists could help her physically and mentally. They can really take our lo down. , Oakville Ont. Mom 92, 13 years " Parkinsons " 3 1/2 years ago LBD diagnosis, evident much longer in hindsight. Encouraged to give up her licence 6 years ago. Eltroxin, Tylenol 1g 3 times a day Off Aricept since Feb./06 On " gentle care " June 30/06, spoon-fed pureed foods, swallowing very compromised > > Hello, > I was wondering if anyone has suggestions for *very* frequent > urination. During the day my Mom goes to the bathroom about once every > 10 minutes. At night it is less frequent and I have been able to extend > the intervals to a few hours using AmbienCR. She is not incontinent > except when I give her the AmbienCR. She actually has no problem > falling asleep, but the AmbienCR helps her stay asleep. > My Mom was diagnosed with LBD about 2 years ago and there has been a > rapid progression (worsening) of the symptoms in the last year. I > believe that the early symptoms were overlooked. Up until about 80 > years of age she was very active, even doing hard physical work like > laying bricks. About 5 years ago she fell on some stairs (due to a > loose brick) and broke her rib. She had to be still for about 1 month > and after that she lost the range of motion in her arms. I thought it > was due to " freezing up " of her arms from lack of use, but in hind sight > I think it may have been an early symptom of LBD - or at least " freezing > up " aggravated by LBD so that her attempts at physical therapy to regain > more range of motion were not successful. > The next symptom to show up was numb legs, which started suddenly in > her right leg while mowing the lawn with the lawn tractor. This > occurred about 3 years ago. At first the doctors were thinking she had > a mini stroke. Many MRI's later the stroke theory was dismissed but no > specific diagnose was determined except that her spine showed > osteoarthritis and some spurs so a pinch nerved seemed most likely. The > MRI's also showed a very substantial " white " signal in the upper spine > going into the neck. This odd feature was never identified and remains > that way today - nobody knows what it is. Eventually both her legs > became numb and she started walking with a shuffling gait with her hands > held high at her chest (rather than at her side like normal). Initially > the doctors thought she was shuffling because of the numbness - she > wasn't getting a tactile sense from her feet so she walked more > cautiously. When memory and confusion problems began to surface the > diagnosis changed to LBD. > Until 1 year ago she was able to take care of herself. One night > she got up to go to the bathroom (she was going often at this time, but > I was asleep and unaware of what was going on) and fell. I got up and > helped her back up and she went off to the bathroom. About an hour > later she fell again and this time I told her to call me when she needed > to get up, and it has continued unabated since then. > She has had hallucinations, but only when waking up. The > hallucinations mostly involved food - something she was making or > eating. She would sometimes wake up confused as to where she was and > wanting to go home. When she is in the confused state she doesn't > recognize me and tells me she needs to get back home and could I go get > . I reassure that I'm and usually within a few minutes I can > get her back in bed and sleeping. Her medications have helped reduce > these hallucinations so that they are very rare. She takes Aricept, > Namenda, Salsalate (for arthritis), Fosamax, and Lexapro. The doctor > thought that the frequent urination could be a compulsive beahvior and > that Lexapro might help. The Lexapro hasn't slowed down the urination > but may have helped eliminate hallucinations and some odd thoughts (she > used to think that flushing the toilet made the bed more comfortable - > this was probably a compulsive behavior because she wanted to make sure > the toilet was flushed and this is how she expressed that need). > Is frequent urination common with LBD? We've tried overactive > bladder medications (OAB) with no success. They work just the opposite > of Aricept and while OAB medications in theory don't go into the brain, > Aricept will get down to the bladder nerve and make sure it works " very > well. " Has anyone had success slowing down frequent urination. She > also does not have one or two large bowel movements, but has several > smaller bowel movements and this just adds to her bathroom trips during > the day. > I am taking care of my Mom in her home and have caregivers come > during the day. At night and on weekends I am the sole caregiver. This > arrangement keeps it within our budget, but the nights are hard on me > because she still gets up 5 or 6 times a night (it would be a dozen or > more times without AmbienCR). > > Best Regards, > > > -- > A. D. Wood > pwood@... > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 24, 2006 Report Share Posted July 24, 2006 Thank you Stella, for a very informative letter. I am just heading into the disease with my LO and I am glad to see there will be phases, in many areas. I am sorry about the loss of your Mom. Thanks again, Imogene Caregiver for my True Texas Gentleman husband of 35 years. He has LBD with Parkinsonism. In a message dated 7/24/2006 4:24:14 AM Central Daylight Time, pete & stella@... writes: Hello My mum died almost a year ago now and one of her obsessive behaviours in her early LBD illness was this persistence in going to the toilet. We had all the urinary tract medications, specialist appointments and with time as with many of the strange behaviour patterns of LBD patients it disappeared and was replaced by the next more pressing problem, it is simply a part of the LBD path and one hopes that it passes with time like it did with my mother. We are often too quick to medicate but with gentle persuasion and care the habit corrected itself. If you read other care givers e-mails the pattern is the same, depending on where you are and the patients treatment the path is almost the same, it just differs by way of the medical practitioners and how lucky you are on finding one that understands the disease. I read as many of your e-mails and the road is the same just with a few tracts that go off in different directions at times. The greatest stroke of luck we had was that we had in New Zealand medical practitioners who were very well aware of the drugs available the combinations and the care that they showed my mother was wonderful. Though she died of a dreadful disease, commonsense and a very clear picture that almost all patients follow allows for the patient to have the very best care and the kindest of medication to allow them a slightly easier passage. This doesn't mean that your loved one may not have a urinary tract problem, but all the patients and LBS sufferers that we have had contact with over the years have followed a very similar path cheers stella Re: Frequent urination Hi , I would check your mom out for a urinary tract infection, if that has not already been done. Not uncommon and treating one if it exists could help her physically and mentally. They can really take our lo down. , Oakville Ont. Mom 92, 13 years " Parkinsons " 3 1/2 years ago LBD diagnosis, evident much longer in hindsight. Encouraged to give up her licence 6 years ago. Eltroxin, Tylenol 1g 3 times a day Off Aricept since Feb./06 On " gentle care " June 30/06, spoon-fed pureed foods, swallowing very compromised > > Hello, > I was wondering if anyone has suggestions for *very* frequent > urination. During the day my Mom goes to the bathroom about once every > 10 minutes. At night it is less frequent and I have been able to extend > the intervals to a few hours using AmbienCR. She is not incontinent > except when I give her the AmbienCR. She actually has no problem > falling asleep, but the AmbienCR helps her stay asleep. > My Mom was diagnosed with LBD about 2 years ago and there has been a > rapid progression (worsening) of the symptoms in the last year. I > believe that the early symptoms were overlooked. Up until about 80 > years of age she was very active, even doing hard physical work like > laying bricks. About 5 years ago she fell on some stairs (due to a > loose brick) and broke her rib. She had to be still for about 1 month > and after that she lost the range of motion in her arms. I thought it > was due to " freezing up " of her arms from lack of use, but in hind sight > I think it may have been an early symptom of LBD - or at least " freezing > up " aggravated by LBD so that her attempts at physical therapy to regain > more range of motion were not successful. > The next symptom to show up was numb legs, which started suddenly in > her right leg while mowing the lawn with the lawn tractor. This > occurred about 3 years ago. At first the doctors were thinking she had > a mini stroke. Many MRI's later the stroke theory was dismissed but no > specific diagnose was determined except that her spine showed > osteoarthritis and some spurs so a pinch nerved seemed most likely. The > MRI's also showed a very substantial " white " signal in the upper spine > going into the neck. This odd feature was never identified and remains > that way today - nobody knows what it is. Eventually both her legs > became numb and she started walking with a shuffling gait with her hands > held high at her chest (rather than at her side like normal). Initially > the doctors thought she was shuffling because of the numbness - she > wasn't getting a tactile sense from her feet so she walked more > cautiously. When memory and confusion problems began to surface the > diagnosis changed to LBD. > Until 1 year ago she was able to take care of herself. One night > she got up to go to the bathroom (she was going often at this time, but > I was asleep and unaware of what was going on) and fell. I got up and > helped her back up and she went off to the bathroom. About an hour > later she fell again and this time I told her to call me when she needed > to get up, and it has continued unabated since then. > She has had hallucinations, but only when waking up. The > hallucinations mostly involved food - something she was making or > eating. She would sometimes wake up confused as to where she was and > wanting to go home. When she is in the confused state she doesn't > recognize me and tells me she needs to get back home and could I go get > . I reassure that I'm and usually within a few minutes I can > get her back in bed and sleeping. Her medications have helped reduce > these hallucinations so that they are very rare. She takes Aricept, > Namenda, Salsalate (for arthritis), Fosamax, and Lexapro. The doctor > thought that the frequent urination could be a compulsive beahvior and > that Lexapro might help. The Lexapro hasn't slowed down the urination > but may have helped eliminate hallucinations and some odd thoughts (she > used to think that flushing the toilet made the bed more comfortable - > this was probably a compulsive behavior because she wanted to make sure > the toilet was flushed and this is how she expressed that need). > Is frequent urination common with LBD? We've tried overactive > bladder medications (OAB) with no success. They work just the opposite > of Aricept and while OAB medications in theory don't go into the brain, > Aricept will get down to the bladder nerve and make sure it works " very > well. " Has anyone had success slowing down frequent urination. She > also does not have one or two large bowel movements, but has several > smaller bowel movements and this just adds to her bathroom trips during > the day. > I am taking care of my Mom in her home and have caregivers come > during the day. At night and on weekends I am the sole caregiver. This > arrangement keeps it within our budget, but the nights are hard on me > because she still gets up 5 or 6 times a night (it would be a dozen or > more times without AmbienCR). > > Best Regards, > > > -- > A. D. Wood > pwood@... > [Non-text portions of this message have been removed] Welcome to LBDcaregivers. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 24, 2006 Report Share Posted July 24, 2006 Almost ditto what Stella wrote. My mother died 11 months ago with LBD and its complications. The loss of continence and moving to adult diapers " Depends " was a bad mile stone that insulted her dignity for a while. Her favorite chairs had fabric covers, and it seemed we always had a couple of them airing / drying out. We finally gave up and switched her full time, to the " Depends " when the accident rate exceeded the time it took to " air " the chairs out. We used up a lot of towels padding her lift chair to keep it dry and clean. All the way to the end, we tried to make bathroom runs if she gave us enough warning. Attempting to keep her skin clear, We tried to change out the depends everytime she had an accident. But knowing when she had an accident got more difficult. Except for occasional flings when she would methodically undress herself, she continued to be a private person. She hated telling me after she had an accident. Dann Pete and Stella wrote: Hello My mum died almost a year ago now and one of her obsessive behaviours in her early LBD illness was this persistence in going to the toilet. <snip> New Message Search Find the message you want faster. Visit your group to try out the improved message search. Share feedback on the new changes to Groups Recent Activity 2 New Members 15 New Links Visit Your Group . Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 24, 2006 Report Share Posted July 24, 2006 Good to see you back Dann! Where have you been? I know it must have been very hard on you when your mother passed away. Hope we see more of you... Jan Colello Dann wrote: Almost ditto what Stella wrote. My mother died 11 months ago with LBD and its complications. The loss of continence and moving to adult diapers " Depends " was a bad mile stone that insulted her dignity for a while. Her favorite chairs had fabric covers, and it seemed we always had a couple of them airing / drying out. We finally gave up and switched her full time, to the " Depends " when the accident rate exceeded the time it took to " air " the chairs out. We used up a lot of towels padding her lift chair to keep it dry and clean. All the way to the end, we tried to make bathroom runs if she gave us enough warning. Attempting to keep her skin clear, We tried to change out the depends everytime she had an accident. But knowing when she had an accident got more difficult. Except for occasional flings when she would methodically undress herself, she continued to be a private person. She hated telling me after she had an accident. Dann Pete and Stella wrote: Hello My mum died almost a year ago now and one of her obsessive behaviours in her early LBD illness was this persistence in going to the toilet. New Message Search Find the message you want faster. Visit your group to try out the improved message search. Share feedback on the new changes to Groups Recent Activity 2 New Members 15 New Links Visit Your Group .. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 26, 2006 Report Share Posted July 26, 2006 You know, after reading these posts about frequent urination -- I bet my mother passed by that phase when she went into rapid decline after taking the anti-psychotics... Before those meds she was self-sufficient going to the bathroom - yet for the past few years she started to wear panty liners - I guess spotting became a problem - maybe that was the start... Then after the anti-psychotics she became dependant to adult diapers. So - I bet she would have had this as a symptom too, but passed by it... Just thinking out loud here... Quote Link to comment Share on other sites More sharing options...
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