Guest guest Posted September 11, 2002 Report Share Posted September 11, 2002 In my opinion WW is the best. I was a little hungry the first few days, but after that I had more energy and felt great. I lost most of my weight by myself, but these last 10 pounds are a real killer. I thought I needed a little more structure to my eating plans and WW gives me the freedom to eat what I like, but within limits (which is just what I needed). Hope this helps and welcome to the group. Luanne Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 24, 2002 Report Share Posted September 24, 2002 Hi, welcome to the group-- I've really learned a lot from the others here. Good luck! On Tue, 24 Sep 2002 13:13:08 -0400 " Kathy Shapiro " writes: > Hi! > Just wanted to say hello. I've just joined. I'm following the WW > points > system - started today. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 24, 2002 Report Share Posted September 24, 2002 Welcome, Kathy. " Enough is enough " -- that's the attitude! You're taking control and making your life, and your body, the way you want it. Use this group well -- it's great support if you participate! -:|:- Hillsboro, OR, USA 146.8/131/124(120) ----- Original Message ----- From: " Kathy Shapiro " Just wanted to say hello. I've just joined. I'm following the WW points system - started today. I'm *serious* about dropping 30 pounds. I'm 58, 5'6 " , and tipping the scales at 168. Today I said, " enough is enough. " So, I hope to be able to contribute and gain some wisdom and support from others on the list. Best wishes to all - Kathy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 21, 2008 Report Share Posted March 21, 2008 Hi, I've been searhcing for a group like this ever since my therapist confirmed my unofficial diagnosis of my mother. I thought it might help if I shared some of the rules I have made that have protected me from her over the last 4 years 1.Never talk to her when I am feeling vulnerable 2.never confide in her in the hope of recieving support 3.Never show Any emotion at all during phone or in person interactions, (I basically adopt flat affect and respond to her questions in as few words as possible) 4.Never spend any time alone with her in her own house/car/etc... 5. If the meeting will last more than 15 minutes meet in public, ie: restaurant, and plan for a meeting of no more than 2 hours at a time 6. Whenever possible invite a 3rd party who is not a family member to the meeting in public 7. As soon as she becomes comfortable and starts crossing any type of boundary refuse to meet with her/ cancel 8. As soon as she starts acting out, physically move away and engage with someone else, ie: both physically and emotionally disengage from her 9. Never ask her for ANYthing and if she offers something that I want, make it clear that she is free to give it to you but you are not particularly excited, happy, etc... about it, ie: you are not " getting hooked " I've noticed that once an abusive interaction is under way there is virtually no way to redirect it, so my best recourse is prevention, ie: don't get emotionally engaged with her in any way in the first place. I've also found that seeing her as a person who is suffering from mental illness and doesn't know better, but must be handled in certain ways because of it has helped let go of some of my rage at not having a real mother... anyway, thanks for all your postings, maybe this one can be of some help as yours have been to me. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 24, 2008 Report Share Posted March 24, 2008 Thank you for the benefit of your experience. Number two is the big one for me. EVERY time I turn to her for emotional support she jerks the rug out from under my feet. I just don't do it any more. But if I do need her help, I don't ask her for it, I tell her plainly what to do and when to do it. Usually this works. I don't ask unless I have no other options and I never expect her to do it out of " motherly " love. New member Hi, I've been searhcing for a group like this ever since my therapist confirmed my unofficial diagnosis of my mother. I thought it might help if I shared some of the rules I have made that have protected me from her over the last 4 years 1.Never talk to her when I am feeling vulnerable 2.never confide in her in the hope of recieving support 3.Never show Any emotion at all during phone or in person interactions, (I basically adopt flat affect and respond to her questions in as few words as possible) 4.Never spend any time alone with her in her own house/car/etc. .. 5. If the meeting will last more than 15 minutes meet in public, ie: restaurant, and plan for a meeting of no more than 2 hours at a time 6. Whenever possible invite a 3rd party who is not a family member to the meeting in public 7. As soon as she becomes comfortable and starts crossing any type of boundary refuse to meet with her/ cancel 8. As soon as she starts acting out, physically move away and engage with someone else, ie: both physically and emotionally disengage from her 9. Never ask her for ANYthing and if she offers something that I want, make it clear that she is free to give it to you but you are not particularly excited, happy, etc... about it, ie: you are not " getting hooked " I've noticed that once an abusive interaction is under way there is virtually no way to redirect it, so my best recourse is prevention, ie: don't get emotionally engaged with her in any way in the first place. I've also found that seeing her as a person who is suffering from mental illness and doesn't know better, but must be handled in certain ways because of it has helped let go of some of my rage at not having a real mother... anyway, thanks for all your postings, maybe this one can be of some help as yours have been to me. ________________________________________________________________________________\ ____ Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now. http://mobile.yahoo.com/;_ylt=Ahu06i62sR8HDtDypao8Wcj9tAcJ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 5, 2011 Report Share Posted June 5, 2011 We got a message from Marcia. I responded to her message and I hope you got it Marcia! If not let me know. Otherwise just " Reply " to this. Hugs, Donna R Cared for Mom 3 years in my home and the last year at a nh. She passed away from LBD in 2002. New Member Hello, I'm new to your group and I must confess I have no idea how to participate. My Mom is 81 and just diagnosed with LBD by a psychiatrist. He has recommended a neurological consult and as I am reading " Lewy Body Dementia " by the Whitworths, I know it is very important to find one knowledgeable about LBD. Thank-you. Marcia Bosack Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 6, 2011 Report Share Posted June 6, 2011 Hi Donna, Hi everyone. Yes, I'm another newbie - signed up June 1st. I'm feeling very overwhelmed this past week from the move of my 81 yr old mom to a dementia care facility and the diagnosis of LBD. Emotionally I'm feeling a lot of guilt right now, as well as relief which I hate to admitl It's a relief that all her symptoms now have a name too, but finding my way through all the new drug recommendations is more than I can handle. Mom is already on so many drugs. We avoided drugs for as long as possible - my Mom never took more than aspirin most of her life. Her problems are so many that I don't know where to begin. Her first major problem was severe back pain from a myriad of spinal issues. She's now on the Fentanyl patch - morphine almost did her in - ended up in the ER. In the beginning we went the " natural route " - she had a wonderful chiropractor who she saw for several years and we tried many " safe and natural pain remedies " . But her condition has really deteriorated in that area. She is so stooped over and her head faces the ground now. We had lots of occupational and rehab therapy, which has helped. We went up the ladder on pain medications. Everything is a trial and error, but the Fentanyl patch has given her the best relief. Mom hardly sleeps, (hasn't for many years - but is sleeping more in the daytime now). She shuffles more than walks and some days we only use the wheel chair. She is incontinent and has trouble with her bowels. She is on blood pressure medication, Lasix for water retention, and potassium to keep her levels normal. She has been on several anti-depressants for her behavior. We've had several trips to the ER - but these trips are worthless because all they do is administer Haldol. Ativan doesn't help any longer. The psychiatrist has now recommended zyprexa which I was against until I read " Lewy Body Dementia " by the Whitworths last week. Jim Whitworth said that it worked quite well for his wife. Mom also has constant UTI's and the only anti-biotic that works now is Leviquan which they only use as a last alternative. I just don't understand why she has to take 6 rounds of other anti-biotics that don't work before they give her Leviquan - something about the rules and insurance they say. The urologist has her on a maintenance program of a low dose anti-biotic (MacroDentin and Vit. C) which only works in 20% of cases. I would need a book to list everything but I think these are the basics. In the past she's been on Requp for restless leg syndrome and Vesicare for incontinence. She's off these now. One specialist said that when you're 81 and incontinent, no drug is going to change that. At least that's two less medications she takes. My Mom was such a vibrant, active person. She was a teacher, then college professor, with many activities including ballroom dancing. She exercised, ate healthy, etc. It doesn't seem fair that any elderly person should be expected to deal with not only overwhelming physical problems, but mental as well. So, that's where I am in my journey with my Mom. The thought of another series of specialist visits at this point seems daunting. In the beginning of this journey I was so " on top " of everything and always trying to find the best treatment. I guess I'm plain tired now. But I will start my calls today trying to locate a knowledgeable neurologist. Thanks for listening. I really appreciate reading all your stories. Marcia _____ From: LBDcaregivers [mailto:LBDcaregivers ] On Behalf Of Donna Mido Sent: Sunday, June 05, 2011 2:00 PM To: LBDcaregivers Subject: Re: New Member We got a message from Marcia. I responded to her message and I hope you got it Marcia! If not let me know. Otherwise just " Reply " to this. Hugs, Donna R Cared for Mom 3 years in my home and the last year at a nh. She passed away from LBD in 2002. New Member Hello, I'm new to your group and I must confess I have no idea how to participate. My Mom is 81 and just diagnosed with LBD by a psychiatrist. He has recommended a neurological consult and as I am reading " Lewy Body Dementia " by the Whitworths, I know it is very important to find one knowledgeable about LBD. Thank-you. Marcia Bosack Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 6, 2011 Report Share Posted June 6, 2011 I am sending on Marcia C's email on to the group, as this one had my address in the " TO " instead of the group email. Hugs, 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: New Member Hi Marcia B, I guess I am Marcia C, from now on. I have found this group to be very helpful, and most of all, discussing issues with people in your same shoes is comforting, even when not all advice works......but...tht's lewy body for you. I hope you benefit from having joined. Cheers, Marcia C. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 9, 2011 Report Share Posted June 9, 2011 Marcia I hear that you feel weary. Don't guilt yourself about her placement, many of us - including me - have found that residential care of one sort or another has been a blessing to our loved ones. My mother thrives on the routine in her nursing home, as well as the amazing job they do of managing her behaviors (paranoia, responses to hallucinations, etc.). I could not offer her any of that at home. To prevent the giving of Ativan (which causes her to become EXTREMELY violent) or Haldol (which nearly killed her, literally) I have on her chart in big red letters that she is allergic to both. They know about it at her nursing home but if she goes to an ER before I can get there this prevents them giving either of these drugs to her. It sounds like you have done as well as possible for your mom. Sometimes when things get " daunting " we need to step back and take a break and do some things just for ourselves. This isn't selfish, this enables us to go on with renewed determination . The first rule of caregiving is to take care of the caregiver, and I hope that you are able to do this . All of my best to you... -- His, Sherry in Michigan daughter/guardian of , dx 4/09 with LBD, living in a nearby NH > Hi everyone. Yes, I'm another newbie - signed up June 1st. I'm feeling > very overwhelmed this past week from the move of my 81 yr old mom to a > dementia care facility and the diagnosis of LBD. Emotionally I'm feeling a > lot of guilt right now, as well as relief which I hate to admitl It's a > relief that all her symptoms now have a name too, but finding my way through > all the new drug recommendations is more than I can handle. Mom is > already on so many drugs. We avoided drugs for as long as possible - my Mom > never took more than aspirin most of her life. Her problems are so many > that I don't know where to begin. Her first major problem was severe back > pain from a myriad of spinal issues. She's now on the Fentanyl patch - > morphine almost did her in - ended up in the ER. In the beginning we went > the " natural route " - she had a wonderful chiropractor who she saw for > several years and we tried many " safe and natural pain remedies " . But her > condition has really deteriorated in that area. She is so stooped over and > her head faces the ground now. We had lots of occupational and rehab > therapy, which has helped. We went up the ladder on pain medications. > Everything is a trial and error, but the Fentanyl patch has given her the > best relief. > Mom hardly sleeps, (hasn't for many years - but is sleeping more in the > daytime now). She shuffles more than walks and some days we only use the > wheel chair. She is incontinent and has trouble with her bowels. She is > on blood pressure medication, Lasix for water retention, and potassium to > keep her levels normal. She has been on several anti-depressants for her > behavior. We've had several trips to the ER - but these trips are > worthless because all they do is administer Haldol. Ativan doesn't help any > longer. The psychiatrist has now recommended zyprexa which I was against > until I read " Lewy Body Dementia " by the Whitworths last week. Jim > Whitworth said that it worked quite well for his wife. Mom also has > constant UTI's and the only anti-biotic that works now is Leviquan which > they only use as a last alternative. I just don't understand why she has > to take 6 rounds of other anti-biotics that don't work before they give her > Leviquan - something about the rules and insurance they say. The urologist > has her on a maintenance program of a low dose anti-biotic (MacroDentin and > Vit. C) which only works in 20% of cases. I would need a book to list > everything but I think these are the basics. > In the past she's been on Requp for restless leg syndrome and Vesicare for > incontinence. She's off these now. One specialist said that when you're > 81 and incontinent, no drug is going to change that. At least that's two > less medications she takes. > My Mom was such a vibrant, active person. She was a teacher, then college > professor, with many activities including ballroom dancing. She exercised, > ate healthy, etc. It doesn't seem fair that any elderly person should be > expected to deal with not only overwhelming physical problems, but mental as > well. > So, that's where I am in my journey with my Mom. The thought of another > series of specialist visits at this point seems daunting. In the beginning > of this journey I was so " on top " of everything and always trying to find > the best treatment. I guess I'm plain tired now. But I will start my > calls today trying to locate a knowledgeable neurologist. Thanks for > listening. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 9, 2011 Report Share Posted June 9, 2011 Hi Sherry, You are absolutely correct - I was so weary a few days after moving my mom to a dementia care unit. What a godsend this website was for me. Janet's words of wisdom allowed me to see there is still light and goodness out there when nothing makes sense anymore. Yes, the care unit is where mom needs to be at this stage of the game. It just took a while for me to understand that. I believe every caregiver on this website is a person of immense strength and endurance. You get so caught up in the day to day struggles and it's easy to put yourself down and become overwhelmed and think you're not doing a good job. We should all give ourselves a huge pat on the back. My husband and I are actually going away for two days. He's been a part of this journey too. It's going to 100 degrees today in Pennsylvania so I hope it cools down or we'll be staying indoors most of the time. I hope once I meet with the neurologists they will understand LBD and will no longer use Haldol and Ativan. But when you're in the ER and at your wits end on what to do, you're at the mercy of anyone who will help. What does the ER give your mom instead of Ativan or Haldol? Thanks for your input Sherry. God bless you. Marcie in Bucks County, Pennnsylvania daughter of Marjorie, dx 5/11 with LBD, living in dementia care facility _____ From: LBDcaregivers [mailto:LBDcaregivers ] On Behalf Of Sherry UpNorth Sent: Thursday, June 09, 2011 9:36 AM To: LBDcaregivers Subject: RE: Re: New Member Marcia I hear that you feel weary. Don't guilt yourself about her placement, many of us - including me - have found that residential care of one sort or another has been a blessing to our loved ones. My mother thrives on the routine in her nursing home, as well as the amazing job they do of managing her behaviors (paranoia, responses to hallucinations, etc.). I could not offer her any of that at home. To prevent the giving of Ativan (which causes her to become EXTREMELY violent) or Haldol (which nearly killed her, literally) I have on her chart in big red letters that she is allergic to both. They know about it at her nursing home but if she goes to an ER before I can get there this prevents them giving either of these drugs to her. It sounds like you have done as well as possible for your mom. Sometimes when things get " daunting " we need to step back and take a break and do some things just for ourselves. This isn't selfish, this enables us to go on with renewed determination . The first rule of caregiving is to take care of the caregiver, and I hope that you are able to do this . All of my best to you... -- His, Sherry in Michigan daughter/guardian of , dx 4/09 with LBD, living in a nearby NH > Hi everyone. Yes, I'm another newbie - signed up June 1st. I'm feeling > very overwhelmed this past week from the move of my 81 yr old mom to a > dementia care facility and the diagnosis of LBD. Emotionally I'm feeling a > lot of guilt right now, as well as relief which I hate to admitl It's a > relief that all her symptoms now have a name too, but finding my way through > all the new drug recommendations is more than I can handle. Mom is > already on so many drugs. We avoided drugs for as long as possible - my Mom > never took more than aspirin most of her life. Her problems are so many > that I don't know where to begin. Her first major problem was severe back > pain from a myriad of spinal issues. She's now on the Fentanyl patch - > morphine almost did her in - ended up in the ER. In the beginning we went > the " natural route " - she had a wonderful chiropractor who she saw for > several years and we tried many " safe and natural pain remedies " . But her > condition has really deteriorated in that area. She is so stooped over and > her head faces the ground now. We had lots of occupational and rehab > therapy, which has helped. We went up the ladder on pain medications. > Everything is a trial and error, but the Fentanyl patch has given her the > best relief. > Mom hardly sleeps, (hasn't for many years - but is sleeping more in the > daytime now). She shuffles more than walks and some days we only use the > wheel chair. She is incontinent and has trouble with her bowels. She is > on blood pressure medication, Lasix for water retention, and potassium to > keep her levels normal. She has been on several anti-depressants for her > behavior. We've had several trips to the ER - but these trips are > worthless because all they do is administer Haldol. Ativan doesn't help any > longer. The psychiatrist has now recommended zyprexa which I was against > until I read " Lewy Body Dementia " by the Whitworths last week. Jim > Whitworth said that it worked quite well for his wife. Mom also has > constant UTI's and the only anti-biotic that works now is Leviquan which > they only use as a last alternative. I just don't understand why she has > to take 6 rounds of other anti-biotics that don't work before they give her > Leviquan - something about the rules and insurance they say. The urologist > has her on a maintenance program of a low dose anti-biotic (MacroDentin and > Vit. C) which only works in 20% of cases. I would need a book to list > everything but I think these are the basics. > In the past she's been on Requp for restless leg syndrome and Vesicare for > incontinence. She's off these now. One specialist said that when you're > 81 and incontinent, no drug is going to change that. At least that's two > less medications she takes. > My Mom was such a vibrant, active person. She was a teacher, then college > professor, with many activities including ballroom dancing. She exercised, > ate healthy, etc. It doesn't seem fair that any elderly person should be > expected to deal with not only overwhelming physical problems, but mental as > well. > So, that's where I am in my journey with my Mom. The thought of another > series of specialist visits at this point seems daunting. In the beginning > of this journey I was so " on top " of everything and always trying to find > the best treatment. I guess I'm plain tired now. But I will start my > calls today trying to locate a knowledgeable neurologist. Thanks for > listening. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 9, 2011 Report Share Posted June 9, 2011 They once gave her risperdal but it was against my wishes. Typically a half of a 2mg xanax is enough to calm her if given early enough. But the several times that she has needed to go to the ER, she was admitted directly to one of 2 psych units that do a wonderful job of adjusting her medications. -- His, Sherry daughter/guardian of , dx 4/09 with LBD, living in a nearby NH > Hi Sherry, > You are absolutely correct - I was so weary a few days after moving my mom > to a dementia care unit. What a godsend this website was for me. Janet's > words of wisdom allowed me to see there is still light and goodness out > there when nothing makes sense anymore. Yes, the care unit is where mom > needs to be at this stage of the game. It just took a while for me to > understand that. > I believe every caregiver on this website is a person of immense strength > and endurance. You get so caught up in the day to day struggles and it's > easy to put yourself down and become overwhelmed and think you're not doing > a good job. We should all give ourselves a huge pat on the back. My > husband and I are actually going away for two days. He's been a part of > this journey too. It's going to 100 degrees today in Pennsylvania so I > hope it cools down or we'll be staying indoors most of the time. > I hope once I meet with the neurologists they will understand LBD and will > no longer use Haldol and Ativan. But when you're in the ER and at your > wits end on what to do, you're at the mercy of anyone who will help. What > does the ER give your mom instead of Ativan or Haldol? > Thanks for your input Sherry. God bless you. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 9, 2011 Report Share Posted June 9, 2011 Hi Marcia, Thank you for reading our book. And I am so sorry to hear that you have joined the ranks of LBD caregivers. We know this is not an easy job! I hope our book helps you as others have told us that it helped them. However, I'm very concerned that you may have misread what we wrote about Zyprexa. Our only reference to that drug is on page 103, where we report that " caregivers have reported more negative than positive experiences with Abilify and Zyprexa. " I wonder if you confused that sentence with one in a paragraph on the same page where I said that Anique reacted poorly to Risperdal but had good results with Seroquel? Seroquel is still many physicians' drug of choice for acting out behaviors and hallucinations, by the way, although it has its problems too. You didn't say if that was a drug that your specialist had tried. I notice that you mentioned a psychiatrist. Please read about choosing a specialist in Chapter Two. The problem with psychiatrists is that they are most comfortable prescribing the same kind of drugs our loved ones have the most difficulty with—Zyprexa, for instance. Now if your specialist is a GERIATRIC psychiatrist, that's different—they are usually more aware of the LBD issues. Otherwise, you might want to get a second opinion. Jim Jim and Helen, The Whitworths of Arizona www.lbdtools.com > > Hi Donna, > > > > Hi everyone. Yes, I'm another newbie - signed up June 1st. I'm feeling > very overwhelmed this past week from the move of my 81 yr old mom to a > dementia care facility and the diagnosis of LBD. Emotionally I'm feeling a > lot of guilt right now, as well as relief which I hate to admitl It's a > relief that all her symptoms now have a name too, but finding my way through > all the new drug recommendations is more than I can handle. Mom is > already on so many drugs. We avoided drugs for as long as possible - my Mom > never took more than aspirin most of her life. Her problems are so many > that I don't know where to begin. Her first major problem was severe back > pain from a myriad of spinal issues. She's now on the Fentanyl patch - > morphine almost did her in - ended up in the ER. In the beginning we went > the " natural route " - she had a wonderful chiropractor who she saw for > several years and we tried many " safe and natural pain remedies " . But her > condition has really deteriorated in that area. She is so stooped over and > her head faces the ground now. We had lots of occupational and rehab > therapy, which has helped. We went up the ladder on pain medications. > Everything is a trial and error, but the Fentanyl patch has given her the best relief. > > > > Mom hardly sleeps, (hasn't for many years - but is sleeping more in the > daytime now). She shuffles more than walks and some days we only use the > wheel chair. She is incontinent and has trouble with her bowels. She is > on blood pressure medication, Lasix for water retention, and potassium to > keep her levels normal. She has been on several anti-depressants for her > behavior. We've had several trips to the ER - but these trips are > worthless because all they do is administer Haldol. Ativan doesn't help any > longer. The psychiatrist has now recommended zyprexa which I was against > until I read " Lewy Body Dementia " by the Whitworths last week. Jim > Whitworth said that it worked quite well for his wife. Mom also has > constant UTI's and the only anti-biotic that works now is Leviquan which > they only use as a last alternative. I just don't understand why she has > to take 6 rounds of other anti-biotics that don't work before they give her > Leviquan - something about the rules and insurance they say. The urologist > has her on a maintenance program of a low dose anti-biotic (MacroDentin and > Vit. C) which only works in 20% of cases. I would need a book to list everything but I think these are the basics. > > > > In the past she's been on Requp for restless leg syndrome and Vesicare for > incontinence. She's off these now. One specialist said that when you're > 81 and incontinent, no drug is going to change that. At least that's two less medications she takes. > > > > My Mom was such a vibrant, active person. She was a teacher, then college > professor, with many activities including ballroom dancing. She exercised, > ate healthy, etc. It doesn't seem fair that any elderly person should be > expected to deal with not only overwhelming physical problems, but mental as well. > > > > So, that's where I am in my journey with my Mom. The thought of another > series of specialist visits at this point seems daunting. In the beginning > of this journey I was so " on top " of everything and always trying to find > the best treatment. I guess I'm plain tired now. But I will start my > calls today trying to locate a knowledgeable neurologist. Thanks for listening. > > I really appreciate reading all your stories. > > Marcia > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 11, 2011 Report Share Posted June 11, 2011 Hi Jim, My husband's doctor was a geriatric/psychiatrist, We had a neurologist prior to him that did not diagnose my husband correctly. The Psychiatrist diagnosed him on the first vist. He was very " up " on drugs, and behavior. We loved him dearly. Love a lot, Imogene > > > > Hi Donna, > > > > > > > > Hi everyone. Yes, I'm another newbie - signed up June 1st. I'm feeling > > very overwhelmed this past week from the move of my 81 yr old mom to a > > dementia care facility and the diagnosis of LBD. Emotionally I'm feeling a > > lot of guilt right now, as well as relief which I hate to admitl It's a > > relief that all her symptoms now have a name too, but finding my way through > > all the new drug recommendations is more than I can handle. Mom is > > already on so many drugs. We avoided drugs for as long as possible - my Mom > > never took more than aspirin most of her life. Her problems are so many > > that I don't know where to begin. Her first major problem was severe back > > pain from a myriad of spinal issues. She's now on the Fentanyl patch - > > morphine almost did her in - ended up in the ER. In the beginning we went > > the " natural route " - she had a wonderful chiropractor who she saw for > > several years and we tried many " safe and natural pain remedies " . But her > > condition has really deteriorated in that area. She is so stooped over and > > her head faces the ground now. We had lots of occupational and rehab > > therapy, which has helped. We went up the ladder on pain medications. > > Everything is a trial and error, but the Fentanyl patch has given her the best relief. > > > > > > > > Mom hardly sleeps, (hasn't for many years - but is sleeping more in the > > daytime now). She shuffles more than walks and some days we only use the > > wheel chair. She is incontinent and has trouble with her bowels. She is > > on blood pressure medication, Lasix for water retention, and potassium to > > keep her levels normal. She has been on several anti-depressants for her > > behavior. We've had several trips to the ER - but these trips are > > worthless because all they do is administer Haldol. Ativan doesn't help any > > longer. The psychiatrist has now recommended zyprexa which I was against > > until I read " Lewy Body Dementia " by the Whitworths last week. Jim > > Whitworth said that it worked quite well for his wife. Mom also has > > constant UTI's and the only anti-biotic that works now is Leviquan which > > they only use as a last alternative. I just don't understand why she has > > to take 6 rounds of other anti-biotics that don't work before they give her > > Leviquan - something about the rules and insurance they say. The urologist > > has her on a maintenance program of a low dose anti-biotic (MacroDentin and > > Vit. C) which only works in 20% of cases. I would need a book to list everything but I think these are the basics. > > > > > > > > In the past she's been on Requp for restless leg syndrome and Vesicare for > > incontinence. She's off these now. One specialist said that when you're > > 81 and incontinent, no drug is going to change that. At least that's two less medications she takes. > > > > > > > > My Mom was such a vibrant, active person. She was a teacher, then college > > professor, with many activities including ballroom dancing. She exercised, > > ate healthy, etc. It doesn't seem fair that any elderly person should be > > expected to deal with not only overwhelming physical problems, but mental as well. > > > > > > > > So, that's where I am in my journey with my Mom. The thought of another > > series of specialist visits at this point seems daunting. In the beginning > > of this journey I was so " on top " of everything and always trying to find > > the best treatment. I guess I'm plain tired now. But I will start my > > calls today trying to locate a knowledgeable neurologist. Thanks for listening. > > > > I really appreciate reading all your stories. > > > > Marcia > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 12, 2011 Report Share Posted June 12, 2011 Hi Marcia, Thanks for your response. And yes, every person with LBD responds differently to drugs. Your mom may be one of the lucky ones that can tolerate those stronger drugs like Zyprexa, especially if it is monitored carefully. But I'd guess that the main reason she is doing so well now is that she is finally in a place where the staff understands LBD and knows how to deal with it. Over and over, we've heard how good behavior management can decrease the need for drugs. But so many places, as you have found out, still don't recognize LBD and even if they do, don't know how to deal with it. A dementia researcher in our area said this about the average care facility just last week: " They don't 'get' it. And so their patients have more hallucinations and act out more, and they still don't 'get' it. " They don't 'get' the over reactions to drugs, the showtime (especially the showtime!), the reactions to extreme stimulation, and just the whole picture. We wrote the book to help caregivers like you understand and deal with LBD a little better. And now we're offering care facilities the tools to teach their staff about LBD so that your loved ones can have better care. Anyone whose loved one is in a care facility needs to find out what kind of LBD training the staff gets. If it's limited, refer them to our website: lbdtools.com. (advertisement over!) Also, check out our blog there as well. Jim Jim and Helen, The Whitworths of Arizona www.lbdtools.com > > > > Hi Donna, > > > > Hi everyone. Yes, I'm another newbie - signed up June 1st. I'm feeling > > very overwhelmed this past week from the move of my 81 yr old mom to a > > dementia care facility and the diagnosis of LBD. Emotionally I'm feeling a > > lot of guilt right now, as well as relief which I hate to admitl It's a > > relief that all her symptoms now have a name too, but finding my way through > > all the new drug recommendations is more than I can handle. Mom is > > already on so many drugs. We avoided drugs for as long as possible - my Mom > > never took more than aspirin most of her life. Her problems are so many > > that I don't know where to begin. Her first major problem was severe back > > pain from a myriad of spinal issues. She's now on the Fentanyl patch - > > morphine almost did her in - ended up in the ER. In the beginning we went > > the " natural route " - she had a wonderful chiropractor who she saw for > > several years and we tried many " safe and natural pain remedies " . But her > > condition has really deteriorated in that area. She is so stooped over and > > her head faces the ground now. We had lots of occupational and rehab therapy, which has helped. We went up the ladder on pain medications. > > Everything is a trial and error, but the Fentanyl patch has given her the best relief. > > > > Mom hardly sleeps, (hasn't for many years - but is sleeping more in the > > daytime now). She shuffles more than walks and some days we only use the > > wheel chair. She is incontinent and has trouble with her bowels. She is > > on blood pressure medication, Lasix for water retention, and potassium to > > keep her levels normal. She has been on several anti-depressants for her > > behavior. We've had several trips to the ER - but these trips are > > worthless because all they do is administer Haldol. Ativan doesn't help any > > longer. The psychiatrist has now recommended zyprexa which I was against > > until I read " Lewy Body Dementia " by the Whitworths last week. Jim > > Whitworth said that it worked quite well for his wife. Mom also has constant UTI's and the only anti-biotic that works now is Leviquan which > > they only use as a last alternative. I just don't understand why she has > > to take 6 rounds of other anti-biotics that don't work before they give her > > Leviquan - something about the rules and insurance they say. The urologist > > has her on a maintenance program of a low dose anti-biotic (MacroDentin and > > Vit. C) which only works in 20% of cases. I would need a book to list everything but I think these are the basics. > > > > In the past she's been on Requp for restless leg syndrome and Vesicare for > > incontinence. She's off these now. One specialist said that when you're > > 81 and incontinent, no drug is going to change that. At least that's two less medications she takes. > > > > My Mom was such a vibrant, active person. She was a teacher, then college > > professor, with many activities including ballroom dancing. She exercised, > > ate healthy, etc. It doesn't seem fair that any elderly person should be > > expected to deal with not only overwhelming physical problems, but mental as well. > > > > So, that's where I am in my journey with my Mom. The thought of another > > series of specialist visits at this point seems daunting. In the beginning > > of this journey I was so " on top " of everything and always trying to find > > the best treatment. I guess I'm plain tired now. But I will start my calls today trying to locate a knowledgeable neurologist. Thanks for listening. > > > > I really appreciate reading all your stories. > > > > Marcia > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 9, 2011 Report Share Posted August 9, 2011 Hi So young - sorry to hear about your husband - but you r in the right place!! Good you got a clear diagnosis - if you don't have a map you don't know where you r going! Welcome This group has been a lifesaver for me! My mom is 77 and in the late stages of LBD - looking Back is 20 20 - we think she has has the disease for 10 yrs - but we only got a diagnosis in 2010- started out Looking like Parkinson's but was moving too rapidly and clearly had many cognitive impairments as well ! Best, Judy R. Strauss LMSW PhD Lead Faculty University of Phoenix Jersey City Campus 100 Town Square Place |Jersey City, NJ 07310 Direct Cell- Email- Jrstr@... > Just registering as requested. My husband has just been diagnosed with LBD after 18 months and three consultants. He is 66 years old. > > Sent from my iPad > Quote Link to comment Share on other sites More sharing options...
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