Guest guest Posted June 25, 2002 Report Share Posted June 25, 2002 Have my 5th week weigh in this afternoon, and I expect a small gain. I've been spending too many points on snacks. Need to get back to basics! Screen Name: DonnaS4 Real Name: Donna Start Weight: 208.6 Goal Weight: 160 Current Weight:200.6 Location: Kansas City Hobbies: Reading, moderating groups, PS RPGs Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 25, 2002 Report Share Posted June 25, 2002 Name: Mia Start Weight: 225 (post pregnancy) 166 - since starting WW Current Weight: 160 Goal Weight: 130 Location: Laguna Beach, CA Hobbies: Tae Kwon Do (currently senior brown belt), computers, busy Mom to 1 yo son and 7 yo daughter Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 25, 2002 Report Share Posted June 25, 2002 > >Screen Name: sczos911 > >Name: > >Start Weight: 197 > >Goal Weight: 140-ish > >Present Weight: 196 (this is week 2 for me!!) > >Location: Milwaukee, Wisconsin > >Hobbies: Reading, watching movies, hanging out with friends and family, playing with my cat, free-lancing on the side. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 25, 2002 Report Share Posted June 25, 2002 I am originally from Milwaukee and my dh still works at UW Milwaukee. Howdy neighbor! Maribeth (in East Troy, WI) 302/242.8/160 Re: Roll Call > >Screen Name: sczos911 > >Name: > >Start Weight: 197 > >Goal Weight: 140-ish > >Present Weight: 196 (this is week 2 for me!!) > >Location: Milwaukee, Wisconsin > >Hobbies: Reading, watching movies, hanging out with friends and family, playing with my cat, free-lancing on the side. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 10, 2002 Report Share Posted September 10, 2002 Congrats on getting your 10% ! Maribeth 302/226.2/160 Pretty excited since that was my 10 % goal 240.5/216.5/160 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 11, 2002 Report Share Posted September 11, 2002 Great idea. My name is , am married with two girls and live in the Seattle area. I don't work outside the home, but am kept busy enough with Girl Scouts (just finished our first Junior meeting since bridging up from Brownies~), PTA, school and church volunteer work. My girls are 9 and 3. I lost 30 lbs two years ago with WW and was pretty active that summer....then after a big 3 day bike ride (which was a beautiful ride through the San Islands for the Lung Assn) I took a little break from working out, which turned out to be way too long, and about 20 pounds have crept back. I am getting back into the exercise habit and have been making mostly careful choices this summer, but I am realizing that even though I *know* what to do, I need the routine and ritual of a meeting to get there again, so this morning a friend and I are going to join....again! Roll Call How about another " roll call " so the new members can get to know us? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 11, 2002 Report Share Posted September 11, 2002 My name is Kay and I am a native Californian. I have fought weight since I was 13. I received my black belt in tae kwon do the week I turned 60 and in the next six months both my appendix and my large colon ruptured, so I have not yet been able to train for second degree. I cannot work yet, either, until my inners stabilize so with no exercise for the past year and a soft diet (too much Ben and Jerry's!), I have come home to roost at WW and I am very peaceful with that decision. I am trying to walk five miles a week and I am very glad to be alive. Most people whose colons rupture do not make it. I look forward to meeting many new friends here! Kay Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 11, 2002 Report Share Posted September 11, 2002 Hi, I'm , at home with my four kids, a nine year old boy, and my girls are 7 1/2, 6, and 2. I've lost about 65 lbs., some of that on WW. I run a food co-op, have a small catering business I've been setting up this summer, and keep busy with volunteering and household stuff, not to mention running the kids around to all their activities. Welcome to all the new members! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 11, 2002 Report Share Posted September 11, 2002 My name is Tory. I'm 37, married to my high school sweetheart, and childless. We celebrated 17 wonderful years this year. I am a high school teacher. I teach professional certification courses. My students learn the materials to become Microsoft Certified Professionals (network administration) and A+ Computer Technicians (fixing, maintaining, and building computers). I'm a geek from the word go and hold the certs I teach about (as well as a Masters in education). Most of my students are boys and they sure keep me on my toes! I also coordinate the " Tommie Tech Team " which is a group of kids who take an after school class and maintain the computers and the network in our school, which is the largest in the state. They love the class (none of them need the credit) and exhaust me every day. I love 'em, though. They are all very special to me. I started WW on Feb 2, 2002 and have lost a total of 69 pounds. I am religious about the program. It is just how I eat now. I also work out 7 days a week and enjoy it. Like Maribeth I don't want to do anything I can't keep up, so I have found things I enjoy. I do Curves six days a week and run 1-3 days a week. (It was 3, but since school has started I have no time to fit it in lately.) Besides the husband I have many other pets. I have ten snakes (8 are babies born to my female, Nyoka), 2 rats, 2 dogs, 2 cats, 2 bearded dragons, one frog (rescued from a cat nearly 3 years ago), and one giant green iguana. My husband calls our house the Petting Zoo, but for all his complaining he loves them as much as I do. (We will be finding homes for the baby snakes, which will substantially reduce the herd. The rats are classroom pets. The beardies may become classroom pets as well.) Right now I'm about 23 pounds from goal, although I may adjust that after another 10 pounds to see where I'm at and if it is realistic to go that much further. Tory Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 12, 2002 Report Share Posted September 12, 2002 Hello there,My name is Penny and I live in Ontartio, Canada. I am a full time E.R. nurse, who works 12 hour shifts. Since January I have lost 20 pounds, withanother50 to go. I was doing a lot of travelling in the summer, didn't journal, etc., but that was a decision, not a falter. I gained 4 pounds during that time. I am now O.P. and motivated and doing well. I go to the gym 3 times a week, minimum where I do cardio exercises and also use the weight machines. I love to knit and garden and read and there never seems to be enough time in the day, to do all the glorius things I would like to. Off to work now, Have a good one Take care Penny Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 12, 2002 Report Share Posted September 12, 2002 In a message dated Wed, 11 Sep 2002 1:20:01 PM Eastern Standard Time, cschwegmann@... writes: > I run a food co-op Hi welcome!! May I ask what a food co-op is? Jen Keeping it Simple 215.5/212.5/194.5 (10% goal) Goal #1: 10lbs by 10/31 - 3lbs gone. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 12, 2002 Report Share Posted September 12, 2002 Hi all, I'm Liz, and I joined WW in May, the week after my 27th birthday. In 17 weeks, I have lost 27 pounds, and I feel great! I've gone from a size 22 to a size 16. Weight Watcher's goal for me would be to lose at least 33 more pounds. When I started, I told myself I'd lose 30, and then maybe stop for six months or so. But since it's still coming off pretty easily, I'm going to lose at least another 10 before I take a break. My weight loss strategy is to use a modified plan. I eat in the middle of my points at the beginning of the week. Then over the weekend I have at least one day where I'm around 10 points over, then I do the math on how many points I have left for the last few days before weigh in, so I'm usually in the low-to-middle of my points for those last few days. I live in New York, in a tiny studio that I share with my chihuahua, Reggie. The vet just gave Reggie the go-ahead to start jogging with me, but he thinks " jog " means " run really fast for 1 block and then stop and pee on something, " so he's not the best jogging partner yet. As to work, I'm an administrator for a study of depression after miscarriage, and I'm taking undergrad psych classes, and I'm in the process of applying to graduate programs in clinical psychology. I'm interested in women's issues, and lately, I think I want to study weight loss, especially how to help people overcome binge eating disorder. Cheers, Liz 204.2/177/164 (or 144 if you go by the WW chart) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 12, 2002 Report Share Posted September 12, 2002 Hi, a food co-op is a group of people who order food together as a group in order to get lower prices (like a store would.) We get lots of natural and organic food at wholesale prices. The co-op part is that no one makes any money, we just all pitch in and the work gets done. It is a lot of fun, actually, and I have met some really wonderful people. On Thu, 12 Sep 2002 13:55:53 -0400 kangaandroos@... writes: > In a message dated Wed, 11 Sep 2002 1:20:01 PM Eastern Standard Time, > cschwegmann@... writes: > > > I run a food co-op > > Hi welcome!! May I ask what a food co-op is? > > Jen > Keeping it Simple > 215.5/212.5/194.5 (10% goal) > Goal #1: 10lbs by 10/31 - 3lbs gone. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 14, 2002 Report Share Posted September 14, 2002 Hello all! I became a Lifetime member of WW about 10 years ago. I lost 15lbs then and my goal was 140, I remember having to get a doctors excuse as 128 was my WW goal but that was just way to thin for me...as it was I did go below 140 to about 133 but everyone thought I looked anorexic. Back in Dec. of 2001 I rejoined WW online and by March of 2002 had gone from 166 to 147, and then I slacked off....got lazy....felt ok...whatever the case was and I fell back into *life* and gained back 7 lbs. Soooo, last Wednesday I bought 10 weeks of WW at a meeting place. Maybe the meetings will motivate me to lose the last 10 or so lbs. 10 weeks that's only 1lb a week so I should be able to do that!!!!!!!!! One would think!! It's just to easy to feel *ok*....ya know!! I love reading everyone's post. I have kept up with Tory and her website...good job Tory...your so willling to share your feelings and all with everyone, that's awesome, and to take the time to actually sit down and post regularly...that's my downfall, I get to reading and rarely post but often want to!!! ;-) I am going to get back on program and lose this darn weight once and for all!! I'm unsure of which weight to start with....I think I'll stick to my original high weight as I never want to go up again!! ~Carla~ 166/154/140 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 14, 2002 Report Share Posted September 14, 2002 Welcome Lynn! I'm 30 years old and I just started WW too! It sounds like you have some very good reasons for losing weight and that will really help you. I just finally told myself that " enough is enough! " I have had more energy since starting the program so be encouraged - you will lose the weight and get that energy back! Christy in Oklahoma 224.5/223.2/120 (-1.3) -----Original Message----- From: Lynn McNutt Hello everyone, My name is Lynn and I just joined this list a few days ago. Thought I'd jump right in and introduce myself. I went to my first WW meeting on Sunday and have been feeling very inspired and motivated all week. I will turn 28 next week and joining WW was my gift to myself. I can't believe it's taken me this long! I have been overweight all my life but in the last five years I've put on about 45 lbs and in the last year I've noticed a significant decrease in my energy level. Well, enough is enough and I've decided it's time to reverse this trend. Even though it's only been 5 days I'm really starting to feel great - energetic and in control! <snip> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 15, 2002 Report Share Posted September 15, 2002 Carla! I was thinking about you yesterday and wondering what was going on. It's been so long since we've hard from you. Thanks for the kind words and please do keep posting. > Re: Re: Roll Call > > > Hello all! > I became a Lifetime member of WW about 10 years ago. I lost > 15lbs then and my goal was 140, I remember having to get a > doctors excuse as 128 was my WW goal but that was just way to > thin for me...as it was I did go below 140 to about 133 but > everyone thought I looked anorexic. > Back in Dec. of 2001 I rejoined WW online and by March of > 2002 had gone from 166 to 147, and then I slacked off....got > lazy....felt ok...whatever the case was and I fell back into > *life* and gained back 7 lbs. Soooo, last Wednesday I bought > 10 weeks of WW at a meeting place. Maybe the meetings will > motivate me to lose the last 10 or so lbs. 10 weeks that's > only 1lb a week so I should be able to do that!!!!!!!!! One > would think!! It's just to easy to feel *ok*....ya know!! > I love reading everyone's post. I have kept up with Tory and > her website...good job Tory...your so willling to share your > feelings and all with everyone, that's awesome, and to take > the time to actually sit down and post regularly...that's my > downfall, I get to reading and rarely post but often want > to!!! ;-) I am going to get back on program and lose this > darn weight once and for all!! I'm unsure of which weight to > start with....I think I'll stick to my original high weight > as I never want to go up again!! > > ~Carla~ > 166/154/140 > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 12, 2010 Report Share Posted November 12, 2010 <snip> Yet, when Lewy takes a break, Mom will recognize me and smile, reaching out to touch my face (I am an only child). <snip> :) :) Love this line! I was always so grateful for these moments. I'm glad you are recipient of them too. :) > > This is Lynn in Florida. My mother will be 89 on Christmas Eve this year. In 2004, her neurosurgeon noticed a minor tremor in her hand but was not able to duplicate it and marked it for watching. Late in 2005, Mom was referred to a neurologist for evaluation due to some concerns we voiced during her annual follow-up (Mom had a benign brain tumor removed in 1996 which necessitated yearly evaluation). > > After testing early in 2006, the neurologist diagnosed Mom with Mild Cognitive Impairment with the possibility of Parkinson's, Alzheimers or Lewy Body Dementia. The neurologist insisted that we place Mom in a facility as soon as possible. In May, 2006, Mom moved into an ALF, living in the independent neighborhood. In September, 2006, Mom was moved to the secure unit for early-stage memory issues. Falls were regular but, fortunately, not serious. By late 2007, Mom lost the ability to walk and shortly thereafter, the ability to self-feed. She was moved to the more advanced memory issue neighborhood late in 2008, where she still resides. Myoclonus is a large factor in Mom's comfort for the past few years, particularly when she is repositioned. This facility believes in aging in place and does have a skilled nursing unit should the need arise... > > Mom is totally dependent on others for all aspects of daily life. I visit daily and spend at least two hours with her, normally feeding her one meal. At this point, she seems to sleep more than she is awake, although many times, she is aware that others are with her. Her food intake has begun to wane in recent weeks so we do all we can to prevent further weight loss. UTI's have been a nearly-constant issue for the past two years in spite of our efforts to change that. Yet, when Lewy takes a break, Mom will recognize me and smile, reaching out to touch my face (I am an only child). > > Those who care for her are excellent and compassionate. They express an interest in learning about Lewy Body and, thanks to this group, there is a regular supply of information to help in that endeavor. I will be eternally grateful for their compassion and for this group. I am also thankful for Robin who was instrumental in helping to arrange a future brain autopsy so that we may be better educated about the journey my mother has been travelling for the past years. > > Thanks to you, and Donna, for moderating this group. > > Best wishes, > Lynn in Florida > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 13, 2010 Report Share Posted November 13, 2010 Hi nne, I'm sorry you are having to deal with this terrible illness. You sound like me in beating myself up over things of which we didn't detect soon enough. Well, dear, if possible roll with it, because you have a terrible job, and don't need the extra stress of self doubt, and guilt. I know, but do what you know at hand and try not to have hind sight. It just about did me under before my husband passed. (I am 78 and also have health issues.) I guess caregivers are so caring they feel guilty over everything under the sun when it comes to our beloved loved ones. I sure have, but always remind myself I did the best I could. Things happen fast with LBD, changes can come in the flick of an eye lash, and we have to do the best we can at that moment. Doing so, is doing a terrific job. And, that goes for all caregivers. I feel for anyone going through this. Very much so. Love a lot, Imogene > > Hello, I just joined this group yesterday. I am caregiver to my husband Ron who > was dx'd with LBD one year ago this month. We went through 2 Neurologists before > we finally got one we are happy with. We live in Colorado Springs and the latest > doctor is in Denver at University Medical Center. Ron has struggled with several > meds before finding something that seems to help. Before we knew the dx, the > first Neuro prescribed Mirapex and it had a very bad effect on him. His very > mild hallucinations became huge ones because of that med. It even led us to the > ER that time. Exelon patch seemed to help but then his skin broke out and we had > to stop that and tried the pill form. When he reached the max level he began to > have anxiety attacks among other problems. Then we met the new doc in Denver and > he changed his med to Namenda, and will have Aricept added next week. What a > difference Namenda was for Ron, even without the Aricept. His cognizance is much > clearer, although still fluctuating at times. > > I am also a member of the yahoo group LBD_caring spouses. I think that these > support groups are such a blessing. I have learned a lot from that group and I > am sure I will also learn from this one. I am hoping to get my daughter to join > here as well. > > A bit about us... I am 64, soon to turn 65. Ron is 67. We originally thought he > had Parkinson's, and even though he had cognizance issues, I was in denial about > that part of his health for several years. He does have Parkinsonism symptoms, > so I focused on that more when trying to obtain a dx. Then I began to learn a > bit about LBD. I have a friend who is a Neurologist but lives too far away > to treat Ron, I told him Ron's symptoms. He told me to ask the doctor about > Diffuse Lewy Body. Well one thing led to another and here I am. I regret that I > buried my head in the sand.... If I had not put off what I knew deep in the back > of my mind, Ron could have possibly had more quality of life sooner, with the > right treatment. > > nne, from Colorado > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 13, 2010 Report Share Posted November 13, 2010 Imogene you were a wonderful strength and fighter for don.i too have alot of regrets.its natural i guess. I have bad dreams where i wake up so very sad.and im very emotional.we do all we can and its not enough to stop the suffering.you are a champion in my book.your love for don shined brightly through all that you did...for all whoare still in this fight....use us as examples...you will have these feelings... But know that your love for your loved one will push you to do all that you can...do not beat yourself up...just love with all that you have...huge hugs. ron Re: ROLL CALL Hi nne, I'm sorry you are having to deal with this terrible illness. You sound like me in beating myself up over things of which we didn't detect soon enough. Well, dear, if possible roll with it, because you have a terrible job, and don't need the extra stress of self doubt, and guilt. I know, but do what you know at hand and try not to have hind sight. It just about did me under before my husband passed. (I am 78 and also have health issues.) I guess caregivers are so caring they feel guilty over everything under the sun when it comes to our beloved loved ones. I sure have, but always remind myself I did the best I could. Things happen fast with LBD, changes can come in the flick of an eye lash, and we have to do the best we can at that moment. Doing so, is doing a terrific job. And, that goes for all caregivers. I feel for anyone going through this. Very much so. Love a lot, Imogene > > Hello, I just joined this group yesterday. I am caregiver to my husband Ron who > was dx'd with LBD one year ago this month. We went through 2 Neurologists before > we finally got one we are happy with. We live in Colorado Springs and the latest > doctor is in Denver at University Medical Center. Ron has struggled with several > meds before finding something tha [The entire original message is not included] Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 13, 2010 Report Share Posted November 13, 2010 nne,  You can't beat yourself up over not knowing, my mom was diagnosed last January and until that time, we didn't know anything about LBD. We have learned alot in this past year, but we are learning something new every day because LBD changes our loved ones every day. My mom is also on namenda and galantamine and her moods are different daily. We do the best we can with the knowledge we have. Hugs sharon, Ohio Subject: ROLL CALL To: LBDcaregivers Date: Saturday, November 13, 2010, 12:32 AM  Hello, I just joined this group yesterday. I am caregiver to my husband Ron who was dx'd with LBD one year ago this month. We went through 2 Neurologists before we finally got one we are happy with. We live in Colorado Springs and the latest doctor is in Denver at University Medical Center. Ron has struggled with several meds before finding something that seems to help. Before we knew the dx, the first Neuro prescribed Mirapex and it had a very bad effect on him. His very mild hallucinations became huge ones because of that med. It even led us to the ER that time. Exelon patch seemed to help but then his skin broke out and we had to stop that and tried the pill form. When he reached the max level he began to have anxiety attacks among other problems. Then we met the new doc in Denver and he changed his med to Namenda, and will have Aricept added next week. What a difference Namenda was for Ron, even without the Aricept. His cognizance is much clearer, although still fluctuating at times. I am also a member of the yahoo group LBD_caring spouses. I think that these support groups are such a blessing. I have learned a lot from that group and I am sure I will also learn from this one. I am hoping to get my daughter to join here as well. A bit about us... I am 64, soon to turn 65. Ron is 67. We originally thought he had Parkinson's, and even though he had cognizance issues, I was in denial about that part of his health for several years. He does have Parkinsonism symptoms, so I focused on that more when trying to obtain a dx. Then I began to learn a bit about LBD. I have a friend who is a Neurologist but lives too far away to treat Ron, I told him Ron's symptoms. He told me to ask the doctor about Diffuse Lewy Body. Well one thing led to another and here I am. I regret that I buried my head in the sand.... If I had not put off what I knew deep in the back of my mind, Ron could have possibly had more quality of life sooner, with the right treatment. nne, from Colorado Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 14, 2010 Report Share Posted November 14, 2010 Hi Everyone I'm still here and read listers experiences daily. It's been 16 months since our Mom passed away ! She was diagnosed with LBD in 2007 although suffered probably 2 years with milder symptoms of it prior to her diagnoses. I miss Mom terribly and reading some of the Listers experiences brings back a flood of experiences/memories so similar to ours ! This is a great group and my heart goes out to all who have lost or still have LO with this terrible disease. " If I listen to my heart I'll hear you laughter once more " Isabell Bell 3/2/1936-07/30/2009 I miss and love you Mom ! Carole & Deny Konecny www.bowbellgoldens.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 14, 2010 Report Share Posted November 14, 2010 I think most of us caregivers beat ourselves up with what is called 'false guilt' - feels the same as regular guilt though - but we just have to keep remembering that word 'false'... It's a tough one, I know.. Been there, done that. Being there, doing that! is more like it sigh... Glad you found us - be sure to check out the Links sections - lots of useful stuff > > Hello, I just joined this group yesterday. I am caregiver to my husband Ron who > was dx'd with LBD one year ago this month. We went through 2 Neurologists before > we finally got one we are happy with. We live in Colorado Springs and the latest > doctor is in Denver at University Medical Center. Ron has struggled with several > meds before finding something that seems to help. Before we knew the dx, the > first Neuro prescribed Mirapex and it had a very bad effect on him. His very > mild hallucinations became huge ones because of that med. It even led us to the > ER that time. Exelon patch seemed to help but then his skin broke out and we had > to stop that and tried the pill form. When he reached the max level he began to > have anxiety attacks among other problems. Then we met the new doc in Denver and > he changed his med to Namenda, and will have Aricept added next week. What a > difference Namenda was for Ron, even without the Aricept. His cognizance is much > clearer, although still fluctuating at times. > > I am also a member of the yahoo group LBD_caring spouses. I think that these > support groups are such a blessing. I have learned a lot from that group and I > am sure I will also learn from this one. I am hoping to get my daughter to join > here as well. > > A bit about us... I am 64, soon to turn 65. Ron is 67. We originally thought he > had Parkinson's, and even though he had cognizance issues, I was in denial about > that part of his health for several years. He does have Parkinsonism symptoms, > so I focused on that more when trying to obtain a dx. Then I began to learn a > bit about LBD. I have a friend who is a Neurologist but lives too far away > to treat Ron, I told him Ron's symptoms. He told me to ask the doctor about > Diffuse Lewy Body. Well one thing led to another and here I am. I regret that I > buried my head in the sand.... If I had not put off what I knew deep in the back > of my mind, Ron could have possibly had more quality of life sooner, with the > right treatment. > > nne, from Colorado > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 14, 2010 Report Share Posted November 14, 2010 Sheila,  My thoughts and prayers are with you. I know this is a tough time and each day is different and sometimes each hour. Hugs, sharon, Ohio Subject: Roll Call To: LBDcaregivers Date: Sunday, November 14, 2010, 7:15 PM  Hi, All, My mother was one of those LBD patients who has had precipitous declines in function. When my father died (suddenly of a hemorrhagic stroke) in 2006, we moved my mother, still not diagnosed with LBD, from TX to live with my husband and me in Indiana. With all those changes, the worst being the loss of my dad, Mom's level of functioning plummeted and the hallucinations began within two months of my dad's passing. Like so many others here, I delayed getting her to a neurologist, blaming her symptoms on her grief as well as her vision problems (decades of glaucoma). After struggling for a year with hallucinations, urinary incontinence, and wandering at night, the first visit with a neuro gave us a name for all this, as well as that precious drug, Seroquel. Her level of functioning actually increased in those first five months on Seroquel and the medication also kept her nasty hallucinations at bay. Mom had another huge decline in January, 2008. While recovering from pneumonia, she " collapsed " (yes, that was the dr's dx after a 4 day hospitalization and many tests), and had a seizure. By the time we got her back home she could not walk (and that was without any new meds in the hospital), but could still bear weight to transfer. Two months of that routine and she was no longer bearing weight. Mom has been bedbound since January, 2008, needing assistance in all ADLs. She no longer knows who I am or where she is. Just today she has gone to a new low. She was unconscious and unresponsive until about 1PM today and then only quietly mumbling, but unable to accept fluids. Finally, just an hour ago she was alert enough to drink 6 oz. of cranberry juice. She normally takes her meds crushed and stirred into chocolate pudding, but since I'm not willing to risk aspiration, today is a " drug holiday. "  (Oliver Sacks, M.D. described his use of this in Awakenings.) We're in unexplored territory here at my house, but a HUGE thank you to all of you awesome people who have posted here and educated us all on what to expect. Many of you have been here and done this and, if you don't mind, I'll be continuing to draw on your experience and courage. Please keep posting often. Thank you, Sheila in IN daughter of Louise, age 88, dx LBD 7/2007 Seroquel 9AM - 37.5 mg. 3PM - 62.5 mg. 9PM - 100 mg. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 15, 2010 Report Share Posted November 15, 2010 Hi, This is Genelda from Virginia. I help with care for my son in law who is only 58 years old. He probebly came down with LBD 10 years ago, but wasn't diagnosed until 2 or 3 years ago. He went thru a number of diagnoses before LBD was decided on. It started with mild cognitive impairment.He has had very little treatment. He has been on aricept and namenda vitamins and so forth. but when he spit them out and refused to take any pills, My daughter didn't give him anymore. As he got progressively more aggressive, He would urinate and move his bowels all over the bedroom and the smell was awful! After my daughter moved out of the room, he would smear stuff on the walls. Finally he was moved downstairs to a small bedroom as he was having some trouble-at times getting up the stairs at night and down in the morning. His children bought him an electric hospital bed. The upstairs room was completely cleaned and everything was removed down to the bare walls. We put down a new carpet and repainted it. The room was turned into a play room filled with toys, a TV, dvd player, WII game benches, day beds and lots of room. 's room is small holds only the bed and 2 small dressers. Low ceiling and can be cleaned easily of " stuff " projected to the walls and ceiling. I also bought a UV disinfector to use in his room and the bathroom. I had had a handicapped bathroom installed back in 2005 to help me and it has proved wonderfull to bathe and tend to him in also. His room downstairs next to my room , is locked when he is in it as he used to get very angry and aggressive. My daughter just found some all in one PJ's with feet in them and we no longer have the " stuff " thrown all over the room. He can't get them off. At first my daughter would get him up at about noon , feed him lunch and he would stay up until 8 or 9pm that night. Now she doesn't get him up until 4 to 6pm and he usually is put to bed at 8pm promptly. He generally has one meal.He was falling a bit so a couple of months ago my daughter started getting him up in his wheelchair and tying him in. He doesn't walk at all so he isn't likely to fall now. He has lost the ability to walk now as he is very shaky when he has to stand when she dresses him. She feeds him, changes him, He has lost so much weight he looks like a skeleton. I think he hallucinates all the time. He doesn't have a doctor and I have stopped trying to find one who knows anything about LBD as my daughter doesn't want him to go to a doctor . My heart breaks for him --- fullcircle@... wrote: To: <LBDcaregivers > Subject: Roll call Date: Sun, 14 Nov 2010 20:37:55 -0800 I and husband are caring for my 93 old mother in law. She was diagnosed 3 years ago and before that we were told she had dementia. The LBD and Parkinson’s was the new information that fit the picture to a “T” of what we have been struggling with the last 7 years. My mil had trouble several years before and I really wonder what was going on then – she was anorexic for the last 20+ years, and she fell a lot as she had very little balance. I don’t know where we are now in stages except a lot of things are late stage, more and more it seems. This week has been very difficult to say the least. She is still ambulatory but perhaps barely as it is a struggle to coach her to lift her feet, take big steps, don’t reach for the wall (that’s more than 3 feet away) don’t sit down etc. She doesn’t know when she’s about to have a bm or finished with one. The constipation is constant – the bowel is just not moving it through. Have tried the ducolax sup several times as directed by her docs and nothing. She’s very confused, out of it and very very crabby. She is biting all our heads off regularly. Several times this weekend her breathing is rough – it’s like she’s forgetting how to breath. The nebulizer no matter what we have tried as far as passiveness she hears that droning motor and starts huffing and puffing. I thought I was imagining things until I tried many times just switching it on and seeing and yes, the sound makes her start panting hard like she does when the mask is on her. We are now just doing the neb with mask while she is lying down comfortable and hope she’ll go to sleep and sometimes she does but then starts the hard panting again to the point of hyperventilating and making herself sick. Most of the time when I take the mask off she doesn’t even realize it’s off and still breaths like a runaway train. The giant hiatal hernia is causing the same problems with nausea and pain from excess gas and we keep trying to get her to sit or stand up straight so she’ll belch and relieve the pressure – this on top of the very small meals, etc. She doesn’t remember why or understand why her stomach hurts. And as far as trying to explain why she feels bad and how that relates to what she’s doing it’s not getting through the fog though she nods and acts like she understands. She is groaning almost constantly now – and we are constantly trying to figure out what the groaning is for. Pain? Nausea? Hungry? Need to go to bathroom? None of the above? I’ve asked her why she is groaning so much – she says it’s a habit. Or she says I didn’t groan I said (something). I give her feedback – you just started groaning, are you trying to say something? Yes, she was saying she wants some Jello. I tell her it didn’t sound like that but I’m very glad you can tell me you would like jello. So this is the speech thing I read about I guess. We have been working hard to keep her body strong and preserve her ability to move as much as possible but now we’re watching it take her mind away a lot more and her ability to control her body. This afternoon as I was trying to get her to do her leg lifts she said she was done she didn’t want anymore. I asked her what she was talking about - done with these exercises or done for the day… she said “everything!”. She meant everything too. She said she doesn’t want to be alive anymore, it’s too hard, she’s done. At the same time we are strapped for finding good competent affordable caregivers. We had one but after 5 months she messed up really bad and didn’t think it was a problem and I had to tell her not to come back. I had the feeling she was not going to be around long when my mil started having more and more trouble. Maybe she couldn’t handle it. We have another caregiver now for the last 2 weeks and so far ok but not as good as I’d like. We really need an angel at this point. I have a friend also who is helping a little. We are still going to try to go see my folks for the weekend and have a grant from an local non profit to go towards respite care. My folks are just a couple hours drive away but it may as well be 20 hours it’s so hard to get away anywhere. I hope to go with my mother to the Mandarin festival in Auburn – which we’ve done every year. Usually she’s the one needing a sanity break (my father’s knee replacement was an ordeal!) but now I’m really looking forward to it also… afraid to look forward to it too much because it might jinx it. My mil’s doctor says she is not ready yet for hospice, they will expect she is in a lot worse condition. I’m wondering maybe try seraquel again and start out really low. She didn’t do well with the lowest dose pill but maybe if I cut it in quarters she could do better with a quarter of it? She’s taking Remeron now at night and after several attempts I had to start her on a quarter pill for two weeks before I could go to half a pill and it’s helping her at night as far as I can tell she relaxes a little and then sleeps some. Otherwise she is up all night tossing/turning/agitated. Her doc said ¼ pill wouldn’t do anything but it really did a lot and she was pretty knocked out for the first 4 days before it started to improve to where she could sleep some at night and function in the day. That was about two months ago and now she is still sleeping some of the night but thrashing more too and some days barely coherent. I got pipe insulation foam and padded her bed with it and used vet wrap tape to hold it on. That way the bed rail functions but it doesn’t bruise her when she hits it all the time. She grips it at night like she’s on some kind of amusement park ride (mystery to us why) her arm was just black and blue all over because of it. That was a good idea that worked at least. I think we are close to being able to get another hospital bed through medicare and wondering if there are really any choices from the rack they sent before that was bent and rusted and I fight everyday. And if I should try to spring for an automatic version because I know I will not be able to crank it manually. And then wondering about practical things to come… and hoping we really do get a break this weekend, we could really use it. If this reads like a “report from the front line” it is – we are really feeling it now. Dorothy and Art Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 15, 2010 Report Share Posted November 15, 2010 I will try this again. It didn't go through. Donna Roll Call Hi, All, My mother was one of those LBD patients who has had precipitous declines in function.� When my father died (suddenly of a hemorrhagic stroke) in 2006, we moved my mother, still not diagnosed with LBD,� from TX to live with my husband and me in Indiana.� With all those changes, the worst being the loss of my dad, Mom's level of functioning plummeted and the hallucinations began within two months of my dad's passing.� Like so many others here, I delayed getting her to a neurologist, blaming her symptoms on her grief as well as her vision problems (decades of glaucoma).� After struggling for a year with hallucinations, urinary incontinence, and wandering at night, the first visit with a neuro gave us a name for all this, as well as that precious drug, Seroquel.� Her level of functioning actually increased in those first five months on Seroquel and the medication also kept her nasty hallucinations at bay. Mom had another huge decline in January, 2008.� While recovering from pneumonia, she " collapsed " (yes, that was the dr's dx after a 4 day hospitalization and many tests), and had a seizure.� By the time we got her back home she could not walk (and that was without any new meds in the hospital), but could still bear weight to transfer.� Two months of that routine and she was no longer bearing weight.� Mom has been bedbound since January, 2008, needing assistance in all ADLs.� She no longer knows who I am or where she is.� Just today she has gone to a new low.� She was unconscious and unresponsive until about 1PM today and then only quietly mumbling, but unable to accept fluids.� Finally, just an hour ago she was alert enough to drink 6 oz. of cranberry juice.� She normally takes her meds crushed and stirred into chocolate pudding, but since I'm not willing to risk aspiration, today is a " drug holiday. " � (Oliver Sacks, M.D. described his use of this in Awakenings.)� We're in unexplored territory here at my house, but a HUGE thank you to all of you awesome people who have posted here and educated us all on what to expect.� Many of you have been here and done this and, if you don't mind,� I'll be continuing to draw on your experience and courage.� Please keep posting often. Thank you, Sheila in IN daughter of Louise, age 88, dx LBD 7/2007 Seroquel 9AM - 37.5 mg. 3PM - 62.5 mg. 9PM - 100 mg. Quote Link to comment Share on other sites More sharing options...
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