Guest guest Posted November 12, 2010 Report Share Posted November 12, 2010 Great job Katy! Love to hear when things are working out as best as it can be. Congrats on being a CNA and one at the NH where your mom lives is wonderful! B/c you 'get it' all of those patients you deal with are in good hands. Just last night a member in my support group mentioned that she purchased the following - maybe it would be beneficial for your mom: U Step Walking Stabilizer. Specifically for neurological conditions. http://www.ustep.com/ Thanks for sharing. > > My mom was diagnosed in 2008 and is living in a nursing home. I work for the school district during the day and recently became a CNA, so I work some evenings & wknds at the NH where she lives. Mom is doing very well, thanks to a good schedule of meds, consistent care and physical therapy. She has come a long way from the underweight, disoriented, and scared woman we found when we went to California to move her to Kansas to be closer to us. For awhile she would go through periods of not knowing us and being extremely agitated and paranoid. I know her symptoms will decline, but for now it is wonderful to have her back to some degree. She is able to use her walker most of the time, but has a wheelchair to use when her legs " freeze " or if she is tired. She thrives on routine and her caregivers are very mindful of that. > > Katy; daughter to Jill--age 71--meds include Aricept, Namenda, Seroquel, Sinemet > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 12, 2010 Report Share Posted November 12, 2010 This is Kathy from MN. My husband was diag. in 1995 with Parkinsons. It wasn't long until I noticed that there was more going on. I was working in a nursing home and saw PD & AD. It took until 2004 to get DLBD from Rochester,MN. He is between the 3rd & 4th stages and requires all his adl's for him. I fight to keep him transferring,but not walking. He is 68 now and has had a long battle with Lewy. ________________________________ To: LBDcaregivers Sent: Fri, November 12, 2010 9:28:51 AM Subject: ROLL CALL!  Everybody - a suggestion was made that we each post a 'status update' on where we are in our respective journies and I think that's a great idea. Start a new post or reply to this one - whichever is easier... I'll get us started ... As you know my mom is gone since 2006. But I think/breath/live Lewy on daily basis by providing information for LBDCaregivers & the famous Links section, facilitating a support group in my neck of the woods (had a meeting last night) and managing the LBDA page on Facebook. We had a very successful LBD Awareness Week last month. In Mass. alone we had 4 events, all different, from a lecture by Gomperts, MD of Mass. General Hospital, to art therapy for caregivers, to a book signing by Graboys, MD, to a race - which made history again by bringing in more donations for one event to LBDA. Many people made the above possible - I'm proud to have been one of many... Where are YOU in this journey? ; loving daughter of Maureen of Boston, MA; dx'd with LBD in 2/2006 (confirmed via brain biopsy;) fell victim to rapid decline from Risperidone; Mom fell into the 50% category of those who could not handle antipsychotics; Was successful on Celexa, Exelon, ALA & B1; Mom became my Guardian Angel on Sept. 30th, 2006. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 12, 2010 Report Share Posted November 12, 2010 Thanks for the status update. Does that mean your husband has Dr. Boeve as a doctor? Since his dx was in Rochester, MN? - > > This is Kathy from MN. My husband was diag. in 1995 with Parkinsons. It wasn't > long until I noticed that there was more going on. I was working in a nursing > home and saw PD & AD. It took until 2004 to get DLBD from Rochester,MN. He is > between the 3rd & 4th stages and requires all his adl's for him. I fight to keep > him transferring,but not walking. He is 68 now and has had a long battle with > Lewy. > > > > > ________________________________ > > To: LBDcaregivers > Sent: Fri, November 12, 2010 9:28:51 AM > Subject: ROLL CALL! > >  > Everybody - a suggestion was made that we each post a 'status update' on where > we are in our respective journies and I think that's a great idea. > > > Start a new post or reply to this one - whichever is easier... > > I'll get us started ... > > As you know my mom is gone since 2006. But I think/breath/live Lewy on daily > basis by providing information for LBDCaregivers & the famous Links section, > facilitating a support group in my neck of the woods (had a meeting last night) > and managing the LBDA page on Facebook. > > > We had a very successful LBD Awareness Week last month. In Mass. alone we had 4 > events, all different, from a lecture by Gomperts, MD of Mass. General > Hospital, to art therapy for caregivers, to a book signing by Graboys, > MD, to a race - which made history again by bringing in more donations for one > event to LBDA. Many people made the above possible - I'm proud to have been one > of many... > > Where are YOU in this journey? > > ; loving daughter of Maureen of Boston, MA; dx'd with LBD in 2/2006 > (confirmed via brain biopsy;) fell victim to rapid decline from Risperidone; Mom > fell into the 50% category of those who could not handle antipsychotics; Was > successful on Celexa, Exelon, ALA & B1; Mom became my Guardian Angel on Sept. > 30th, 2006. > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 12, 2010 Report Share Posted November 12, 2010 As many of you may know, I was my mother's caregiver. Mom was diagnosed with Parkinson's several years prior to being diagnosed with LBD. It was only when my father died in 2005, that her decline became rapid and we knew it was obvious that there was something more wrong with her than Parkinson's. She got the official diagnosis in 2005. I moved back home to take care of her at that time because I was working as a Certified Nurse's Assistant (CNA.) In 2008, I moved us both into a senior living apartment to make care giving for her a little easier on us both. She won her battle in March, 2009. Since her passing, I have decided to no longer work as a CNA and I have also moved to NC from Michigan. I currently work for The City of Fayetteville and have met the most wonderful woman, whom I have now known for approximately 2 years. I should mention that 's grandmother also had Lewy Body Dementia. a daughter who is almost 13 and I have achieved my life long dream of having my own family. and I plan to get married and spend the rest of our lives together and we don't take a single day for granted. I have become a volunteer for the Lewy Body Dementia Association and started a support group here in Fayetteville for caregivers, which I am trying to get off and running. and I are always looking for more ways to help the cause and spread awareness. LBD will always be a cause that I hold close to my heart and I will probably always be involved in the fight to spread awareness and help other caregivers. Heartfelt hugs to all, Ron ________________________________ To: LBDcaregivers Sent: Fri, November 12, 2010 10:28:51 AM Subject: ROLL CALL! Everybody - a suggestion was made that we each post a 'status update' on where we are in our respective journies and I think that's a great idea. Start a new post or reply to this one - whichever is easier... I'll get us started ... As you know my mom is gone since 2006. But I think/breath/live Lewy on daily basis by providing information for LBDCaregivers & the famous Links section, facilitating a support group in my neck of the woods (had a meeting last night) and managing the LBDA page on Facebook. We had a very successful LBD Awareness Week last month. In Mass. alone we had 4 events, all different, from a lecture by Gomperts, MD of Mass. General Hospital, to art therapy for caregivers, to a book signing by Graboys, MD, to a race - which made history again by bringing in more donations for one event to LBDA. Many people made the above possible - I'm proud to have been one of many... Where are YOU in this journey? ; loving daughter of Maureen of Boston, MA; dx'd with LBD in 2/2006 (confirmed via brain biopsy;) fell victim to rapid decline from Risperidone; Mom fell into the 50% category of those who could not handle antipsychotics; Was successful on Celexa, Exelon, ALA & B1; Mom became my Guardian Angel on Sept. 30th, 2006. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 12, 2010 Report Share Posted November 12, 2010 No, he saw Dr. Knopman. ________________________________ To: LBDcaregivers Sent: Fri, November 12, 2010 6:41:59 PM Subject: Re: ROLL CALL!  Thanks for the status update. Does that mean your husband has Dr. Boeve as a doctor? Since his dx was in Rochester, MN? - > > This is Kathy from MN. My husband was diag. in 1995 with Parkinsons. It >wasn't > > long until I noticed that there was more going on. I was working in a nursing > > home and saw PD & AD. It took until 2004 to get DLBD from Rochester,MN. He >is > > between the 3rd & 4th stages and requires all his adl's for him. I fight to >keep > > him transferring,but not walking. He is 68 now and has had a long battle with > > Lewy. > > > > > ________________________________ > > To: LBDcaregivers > Sent: Fri, November 12, 2010 9:28:51 AM > Subject: ROLL CALL! > >  > Everybody - a suggestion was made that we each post a 'status update' on where > we are in our respective journies and I think that's a great idea. > > > Start a new post or reply to this one - whichever is easier... > > I'll get us started ... > > As you know my mom is gone since 2006. But I think/breath/live Lewy on daily > basis by providing information for LBDCaregivers & the famous Links section, > facilitating a support group in my neck of the woods (had a meeting last night) > > and managing the LBDA page on Facebook. > > > We had a very successful LBD Awareness Week last month. In Mass. alone we had 4 > > events, all different, from a lecture by Gomperts, MD of Mass. General > Hospital, to art therapy for caregivers, to a book signing by Graboys, > MD, to a race - which made history again by bringing in more donations for one > event to LBDA. Many people made the above possible - I'm proud to have been one > > of many... > > Where are YOU in this journey? > > ; loving daughter of Maureen of Boston, MA; dx'd with LBD in 2/2006 > (confirmed via brain biopsy;) fell victim to rapid decline from Risperidone; >Mom > > fell into the 50% category of those who could not handle antipsychotics; Was > successful on Celexa, Exelon, ALA & B1; Mom became my Guardian Angel on Sept. > 30th, 2006. > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 12, 2010 Report Share Posted November 12, 2010 Hi Ron I live in New Zealand, Lake Taupo and read most of the e-mails. My mother passed away after 4 years with LBD and Parkinsons in 2005, a wonderful intelligent lady who sadly died well before her time. I keep a keen eye on what is happening with the group and follow silently many battles that others suffer. It is wonderful that you have met a lovely lady and I sincerely wish you all the best. You have helped many people and I am sure that they like me are delighted to hear your wonderful news. Kindest regards from Stella Gordon in NZ From: LBDcaregivers [mailto:LBDcaregivers ] On Behalf Of Ron Sent: Saturday, 13 November 2010 2:49 p.m. To: LBDcaregivers Subject: Re: ROLL CALL! As many of you may know, I was my mother's caregiver. Mom was diagnosed with Parkinson's several years prior to being diagnosed with LBD. It was only when my father died in 2005, that her decline became rapid and we knew it was obvious that there was something more wrong with her than Parkinson's. She got the official diagnosis in 2005. I moved back home to take care of her at that time because I was working as a Certified Nurse's Assistant (CNA.) In 2008, I moved us both into a senior living apartment to make care giving for her a little easier on us both. She won her battle in March, 2009. Since her passing, I have decided to no longer work as a CNA and I have also moved to NC from Michigan. I currently work for The City of Fayetteville and have met the most wonderful woman, whom I have now known for approximately 2 years. I should mention that 's grandmother also had Lewy Body Dementia. a daughter who is almost 13 and I have achieved my life long dream of having my own family. and I plan to get married and spend the rest of our lives together and we don't take a single day for granted. I have become a volunteer for the Lewy Body Dementia Association and started a support group here in Fayetteville for caregivers, which I am trying to get off and running. and I are always looking for more ways to help the cause and spread awareness. LBD will always be a cause that I hold close to my heart and I will probably always be involved in the fight to spread awareness and help other caregivers. Heartfelt hugs to all, Ron ________________________________ From: <octoryrose@... <mailto:octoryrose%40yahoo.com> > To: LBDcaregivers <mailto:LBDcaregivers%40yahoogroups.com> Sent: Fri, November 12, 2010 10:28:51 AM Subject: ROLL CALL! Everybody - a suggestion was made that we each post a 'status update' on where we are in our respective journies and I think that's a great idea. Start a new post or reply to this one - whichever is easier... I'll get us started ... As you know my mom is gone since 2006. But I think/breath/live Lewy on daily basis by providing information for LBDCaregivers & the famous Links section, facilitating a support group in my neck of the woods (had a meeting last night) and managing the LBDA page on Facebook. We had a very successful LBD Awareness Week last month. In Mass. alone we had 4 events, all different, from a lecture by Gomperts, MD of Mass. General Hospital, to art therapy for caregivers, to a book signing by Graboys, MD, to a race - which made history again by bringing in more donations for one event to LBDA. Many people made the above possible - I'm proud to have been one of many... Where are YOU in this journey? ; loving daughter of Maureen of Boston, MA; dx'd with LBD in 2/2006 (confirmed via brain biopsy;) fell victim to rapid decline from Risperidone; Mom fell into the 50% category of those who could not handle antipsychotics; Was successful on Celexa, Exelon, ALA & B1; Mom became my Guardian Angel on Sept. 30th, 2006. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 12, 2010 Report Share Posted November 12, 2010 Jim is progressing into LBD at a faster pace now. I'm still on a roller coaster with good and not so good days, never knowing what each day will be like when I arrive. Jim, my husband, gets frequent UTIs. I try hard to keep them at a minimum by being at the nursing home where he has resided for 4 1/2 years by toileting him while I am there to keep him dry. I visit daily for several hours. Jim is not fond of cranberry juice and it is hard to get him to take it. For some reason the doctor will not prescribe cranberry tablets. Recently, about a month ago, I got a FWD on the computer about Cinnamon preventing UTIs http://www.ehow.com/facts_5579258_cinnamon-urinary-tract-infections.html and I started giving Jim the honey/cinnamon mixture in heated water as a warm drink and he likes it, I have given it to him everyday for a month and his urine is clear again, so I believe it is working. It would be great if he has one less battle to fight and the cinnamon actually does work. Jim seems to be losing weight, even with eating his meals and I am bringing in cake and things high in calories to help him to gain weight, he also has a " Magic Cup " everynight, similar to ice cream, but for people that eat pureed food and have trouble swallowing. The cup is about 300 calories. He still is not gaining. Jim used to stay up for activities and other events at the nursing home, but he seems to get tired faster now and sleeps more often in his wheelchair. Sometimes they attempt to bring him to his bed for a nap, but he fights going to bed, so they let him sleep in his chair during the day. Other than losing weight, he seems to be in good spirits when it is a good day. The good days come and go, but when they are there, they are very good and he communicates with me and smiles. Another thing, I am not sure if it is my imagination, but the honey/cinnamon drink seems to have helped Jim speak more clearly and a little louder. It is not his constant whispery voice. Jan Colello, San Francisco Bay Area, CA Husband, Jim, dx w/ LBD 2003  ________________________________ To: LBDcaregivers Sent: Fri, November 12, 2010 7:28:51 AM Subject: ROLL CALL!  Everybody - a suggestion was made that we each post a 'status update' on where we are in our respective journies and I think that's a great idea. Start a new post or reply to this one - whichever is easier... I'll get us started ... As you know my mom is gone since 2006. But I think/breath/live Lewy on daily basis by providing information for LBDCaregivers & the famous Links section, facilitating a support group in my neck of the woods (had a meeting last night) and managing the LBDA page on Facebook. We had a very successful LBD Awareness Week last month. In Mass. alone we had 4 events, all different, from a lecture by Gomperts, MD of Mass. General Hospital, to art therapy for caregivers, to a book signing by Graboys, MD, to a race - which made history again by bringing in more donations for one event to LBDA. Many people made the above possible - I'm proud to have been one of many... Where are YOU in this journey? ; loving daughter of Maureen of Boston, MA; dx'd with LBD in 2/2006 (confirmed via brain biopsy;) fell victim to rapid decline from Risperidone; Mom fell into the 50% category of those who could not handle antipsychotics; Was successful on Celexa, Exelon, ALA & B1; Mom became my Guardian Angel on Sept. 30th, 2006. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 13, 2010 Report Share Posted November 13, 2010 I have been following this group for about a year now (maybe longer, I can't remember). My mother was diagnosed with LBD in 2006. She and my Dad lived in New Hampshire, and I am in Connecticut. With neither of them able to drive, they had to rely on friends and neighbors. However, if there was an " emergency " they called me, 2 1/2 hours away! They could not count on my brother who lives only 20 minutes away. So, I finally convinced them to move to Connecticut to an assited living facility. They started in Independent Living but it did not take long before I had to move Mom to a dementia unit--she was seeing children in the apartment, tore down the curtains one day because there were people trying to get in or trying to tear the curtains down, she would yell at non-existant people, etc. My Dad was afraid to leave her alone, so he was trapped. Now Dad in is assisted living physically close to Mom, but there is a locked door between them. Mom was starting to feel comfortable with the new living arrangements when Dad fell and broke his left hip this August. Mom cannot leave the unit without someone to accompany her, and that means she can only visit Dad when I am not busy (I work full time and have commitments on Tuesdays and Thursdays). I wish I could do more, but I am exhausted as it is. Mom's Parkinson's seems worse at times--her legs seem to lock up on her. We increased the Sinimet and that took care of it for about two months, but the freezing seems to be coming back. And the Sinimet made the hallucinations a bit worse, but not scary. She is on Excelon, Sinimet, Toprol (for her blood pressure) and an anti-depressant. We are at least holding our own, or so I thought. Last night when I called to check on her, she was in New Hampshire! Thank goodness one of the aides sat with her and calmed her down a bit--Mom did not know how she was going to get back. This disease is very stressful, and I feel badly complaining because I am not giving direct care. However, it doesn't mean the course of the diseasse is any easier to take. Thank goodness for this group. I have learned a lot and can speak to her neurologist so he knows that I know what I am talking about. Thank you all. Barbara, daughter of Betsy, diagnosed 2006. ------------------------------------ Welcome to LBDcaregivers. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 13, 2010 Report Share Posted November 13, 2010 My precious True Texas Gentleman husband, Don, died April 22, 2010. Love a lot, That's what has always helped me get by, Imogene > > Everybody - a suggestion was made that we each post a 'status update' on where we are in our respective journies and I think that's a great idea. > > Start a new post or reply to this one - whichever is easier... > > I'll get us started ... > > As you know my mom is gone since 2006. But I think/breath/live Lewy on daily basis by providing information for LBDCaregivers & the famous Links section, facilitating a support group in my neck of the woods (had a meeting last night) and managing the LBDA page on Facebook. > > We had a very successful LBD Awareness Week last month. In Mass. alone we had 4 events, all different, from a lecture by Gomperts, MD of Mass. General Hospital, to art therapy for caregivers, to a book signing by Graboys, MD, to a race - which made history again by bringing in more donations for one event to LBDA. Many people made the above possible - I'm proud to have been one of many... > > Where are YOU in this journey? > > ; loving daughter of Maureen of Boston, MA; dx'd with LBD in 2/2006 (confirmed via brain biopsy;) fell victim to rapid decline from Risperidone; Mom fell into the 50% category of those who could not handle antipsychotics; Was successful on Celexa, Exelon, ALA & B1; Mom became my Guardian Angel on Sept. 30th, 2006. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 13, 2010 Report Share Posted November 13, 2010 Hello Dear Jan, Thank you for your letter. I just commented that I was wondering about Jim. I sure am glad the cinnamon/honey mixture is working. As always, my love to you dear girl. Imogene > > Jim is progressing into LBD at a faster pace now. I'm still on a roller coaster > with good and not so good days, never knowing what each day will be like when I > arrive. > Jim, my husband, gets frequent UTIs. I try hard to keep them at a minimum by > being at the nursing home where he has resided for 4 1/2 years by toileting > him while I am there to keep him dry. I visit daily for several hours. Jim is > not fond of cranberry juice and it is hard to get him to take it. For some > reason the doctor will not prescribe cranberry tablets. > Recently, about a month ago, I got a FWD on the computer about Cinnamon > preventing UTIs > http://www.ehow.com/facts_5579258_cinnamon-urinary-tract-infections.html and I > started giving Jim the honey/cinnamon mixture in heated water as a warm drink > and he likes it, I have given it to him everyday for a month and his urine is > clear again, so I believe it is working. It would be great if he has one less > battle to fight and the cinnamon actually does work. Jim seems to be losing > weight, even with eating his meals and I am bringing in cake and things high in > calories to help him to gain weight, he also has a " Magic Cup " everynight, > similar to ice cream, but for people that eat pureed food and have trouble > swallowing. The cup is about 300 calories. He still is not gaining. Jim used to > stay up for activities and other events at the nursing home, but he seems to get > tired faster now and sleeps more often in his wheelchair. Sometimes they attempt > to bring him to his bed for a nap, but he fights going to bed, so they let him > sleep in his chair during the day. > Other than losing weight, he seems to be in good spirits when it is a good day. > The good days come and go, but when they are there, they are very good and he > communicates with me and smiles. Another thing, I am not sure if it is my > imagination, but the honey/cinnamon drink seems to have helped Jim speak more > clearly and a little louder. It is not his constant whispery voice. > Jan Colello, San Francisco Bay Area, CA > Husband, Jim, dx w/ LBD 2003 > >  > > > > ________________________________ > > To: LBDcaregivers > Sent: Fri, November 12, 2010 7:28:51 AM > Subject: ROLL CALL! > >  > Everybody - a suggestion was made that we each post a 'status update' on where > we are in our respective journies and I think that's a great idea. > > > Start a new post or reply to this one - whichever is easier... > > I'll get us started ... > > As you know my mom is gone since 2006. But I think/breath/live Lewy on daily > basis by providing information for LBDCaregivers & the famous Links section, > facilitating a support group in my neck of the woods (had a meeting last night) > and managing the LBDA page on Facebook. > > > We had a very successful LBD Awareness Week last month. In Mass. alone we had 4 > events, all different, from a lecture by Gomperts, MD of Mass. General > Hospital, to art therapy for caregivers, to a book signing by Graboys, > MD, to a race - which made history again by bringing in more donations for one > event to LBDA. Many people made the above possible - I'm proud to have been one > of many... > > Where are YOU in this journey? > > ; loving daughter of Maureen of Boston, MA; dx'd with LBD in 2/2006 > (confirmed via brain biopsy;) fell victim to rapid decline from Risperidone; Mom > fell into the 50% category of those who could not handle antipsychotics; Was > successful on Celexa, Exelon, ALA & B1; Mom became my Guardian Angel on Sept. > 30th, 2006. > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 13, 2010 Report Share Posted November 13, 2010 Hello all. I am reading the post most days so I keep up with what is happening here. I lost my husband last year the day after Thanksgiving. We fought Lewy together but as you know Lewy always wins. Don did battle very gracefully & kept his sense of humor right up to the end ( for which I will always be thankful to God) .. I am fast approaching that first anniversary & have been reflecting back on this long journey. Many sad memories but also many more fun & loving ones too. We moved from a life time in Alaska to Colorado so we could get better care for Don. He did not want to leave his beloved AK but did so with grace & his adventurous nature. He returned home to AK in July where he will always be. Don was luck to get an early dig. Of LBD about 8 yrs. before his death. But I had seen the signs for over 4 yrs. prior but could not get him to comply with testing. I was able to keep Don at home until he went to the hospist care center 5 days before he died. But doing this took a huge toll on me & I did not realize how totally exhausted & overwhelmed I was unlit about a month after his death. So caregivers be aware or listen to others who are (outside of the forest)! As others have said, this board was a God send and I do not know what I would have done with out all of you. Love to all of my friend here! Sherry in Colorado > > Everybody - a suggestion was made that we each post a 'status update' on where we are in our respective journies and I think that's a great idea. > > Start a new post or reply to this one - whichever is easier... > > I'll get us started ... > > As you know my mom is gone since 2006. But I think/breath/live Lewy on daily basis by providing information for LBDCaregivers & the famous Links section, facilitating a support group in my neck of the woods (had a meeting last night) and managing the LBDA page on Facebook. > > We had a very successful LBD Awareness Week last month. In Mass. alone we had 4 events, all different, from a lecture by Gomperts, MD of Mass. General Hospital, to art therapy for caregivers, to a book signing by Graboys, MD, to a race - which made history again by bringing in more donations for one event to LBDA. Many people made the above possible - I'm proud to have been one of many... > > Where are YOU in this journey? > > ; loving daughter of Maureen of Boston, MA; dx'd with LBD in 2/2006 (confirmed via brain biopsy;) fell victim to rapid decline from Risperidone; Mom fell into the 50% category of those who could not handle antipsychotics; Was successful on Celexa, Exelon, ALA & B1; Mom became my Guardian Angel on Sept. 30th, 2006. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 13, 2010 Report Share Posted November 13, 2010 Here's my status update: My father was diagnosed at Upstate Medical Center in Syracuse, NY around 2004 with LBD after having REM sleep issues and hallucinations of " little people " at night which did not concern him. He also was feeling fatigued. He has been on Aricept since that time. My parents moved to a Senior living community near me in northeast Ohio in 2005. Since then, Dad has seen physicians at the Cleveland Clinic. He is now (since a hospitalization in July)needing aides all day to help with walking, transfers and toileting. He is doing quite well mentally a lot of the time and was put on Namenda in 2005 in addition to the Aricept. He started on low Seroquel a year ago when the nightmares worsened and that does a wonderful job so far. He is amazingly peaceful and accepting of his condition. We haven't had any acting out yet and he usually knows who we are, but struggles to find the right words. I am grateful his decline has been less precipitous than we feared, but we are realistic that things can change quickly at any time. I am also so thankful for this group. I have learned so much. --Carol, daughter of . > > Everybody - a suggestion was made that we each post a 'status update' on where we are in our respective journies and I think that's a great idea. > > Start a new post or reply to this one - whichever is easier... > > I'll get us started ... > > As you know my mom is gone since 2006. But I think/breath/live Lewy on daily basis by providing information for LBDCaregivers & the famous Links section, facilitating a support group in my neck of the woods (had a meeting last night) and managing the LBDA page on Facebook. > > We had a very successful LBD Awareness Week last month. In Mass. alone we had 4 events, all different, from a lecture by Gomperts, MD of Mass. General Hospital, to art therapy for caregivers, to a book signing by Graboys, MD, to a race - which made history again by bringing in more donations for one event to LBDA. Many people made the above possible - I'm proud to have been one of many... > > Where are YOU in this journey? > > ; loving daughter of Maureen of Boston, MA; dx'd with LBD in 2/2006 (confirmed via brain biopsy;) fell victim to rapid decline from Risperidone; Mom fell into the 50% category of those who could not handle antipsychotics; Was successful on Celexa, Exelon, ALA & B1; Mom became my Guardian Angel on Sept. 30th, 2006. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 13, 2010 Report Share Posted November 13, 2010 OK, I will play . I'm Sherry and my mother was diagnosed with LBD in April of last year but she had been exhibiting symptoms for quite a few years (maybe as many as 10) before that. Her diagnosis came as the result of history, response to meds (ativan made her insanely wild, haldol turned her into an unresponsive zombie), and brain scans (including PET). She had had a dx of AD a couple of years earlier and had been on aricept and namenda already; seroquel was added to the mix as her hallucinations and delusions caused her to act out violently. My mother has distanced herself from my sister and I for many years, and we would go for months without any communications, and sometimes a year or more without seeing each other. With my mom's diagnosis she lost her live-in guy, and I placed her in a nursing home about 1/2 mile from my house. I was awarded guardianship, my sister has her DPOA; I deal with medical and personal issues, my sister takes care of her business and finances. It all works out very well. My mom has needed a couple of short psych hospitalizations to adjust her meds but other than that she is thriving at the NH after the first 6 months of her own personal hell, suicide threats, cutting herself, etc - anything to escape her fate. Now she has many friends there, we donated her baby grand piano so that is with her, and she knows we are just 4 minutes away. She spends every Sunday afternoon at my home, and we also try to get out once or twice a week, even if she just accompanies us on errands or for a burger or whatever. When she is here she actively takes part in family life, cooking, and housekeeping, but she especially loves playing with my 3 dogs and her 19MO great-grandson who lives with us. Her cognition fluctuates, as expected, and some days she is clueless as to where she is, where she lives, and even who I am - although she has become very dependent upon me when not at King's and gets very anxious when I'm out of sight, especially in public. Other times she appears perfectly normal and people are shocked to learn that she has dementia. But no matter her cognitive level, her personality is still intact. Because I haven't known her very well for my adult life, I can only compare her to the mother that raised me, plus brief periods now and again for a holiday or something. She's not been interested in her daughters' lives in so long that it is odd she is such a large part of mine now. (My sister lives several hours away and only sees her once a month or so.) Physically she isn't as strong as she was, and has had a few " falling " episodes. Because her BP is so erratic that doesn't surprise me. But she does all of her own care, dressing, etc. and her gait is quick and strong. She is often mistaken for a visitor, and has been " let out " of the alarmed door on several occasions by well-meaning visitors who held it open for her as they were leaving . Once outside, however, she is lost and anxious. She suffers from chronic UTI's and is given cranberry daily which is helping somewhat. So all is pretty much status quo. It is strange that our relationship is closer now than it has been for over 30 years but I am happy for it and taking advantage of every minute - I know how quickly it can all change. I have been pleased to read the updates from the others, and am also thankful for the people here, who also " get it " . His, Sherry daughter/guardian of , dx 4/09 with LBD, living in a nearby NH > Everybody - a suggestion was made that we each post a 'status update' on where we are in our respective journies and I think that's a great idea. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 13, 2010 Report Share Posted November 13, 2010 Here is our status update:  My mother ita was diagnosed in January 2010.For the past 3 or 4 years she started doing things that were not characteristic of her. We finally got a consult with a neurologist in November 2009 and she suspicioned LBD. Mom was having hallucinations, mostly ones that she enjoyed because she was seeing people that had passed on, esp. her dad. She has rheumatoid arthritis and was already a fall risk. She fell in the basement in Feb. and then fell in the bath tub in early March and broke her arm. We were trying to take care of her 24 hours a day and it was getting increasingly difficult because most of us work. She decided that she shouldn't be alone and said she wanted to go into assisted living. So we found a beautiful place with a small apartment, not just a room and she enjoys being there. Every day there seems to be new developments.  She has recurring UTI's and upper respiratory infections. She has compromised lung function of the right lung due to the arthritis. She can't function in the morning, she is very confused as to what time it is , morning or night and will argue about it being time for breakfast. She has no concept of time when getting ready to go anywhere. She is having trouble controlling her bladder and has resorted to Depends. She is not real good with hygiene, but will argue if you tell her she needs to keep herself dry and clean. She now has issues with her eyes, not sure if that is Lewy or not, she has had pneumonia earlier this year. She gets very angry when talking about her medications. Mom was an LPN and she wants to have control over her medicine and she is getting to the place of being confused and not taking it when she needs to. She can be very nasty and critical, but we know that is Lewy. It is one of the worst things I have been through. It is so hard to see Mom become like this and it takes alot of patience to deal with some of her issues. We had to let the house go back to the bank in order to be able for her to be in assisted living, as she had a mortgage on it and she still wants to go back there and get things. She wanted to go make cookies there and she doesn't understand that her cookies sheets and things are not like they were when she was there. I know that we are in the earlier stages, maybe stage 3, according to the LBD caregivers stages and know that things will continue to decline. She is on Namenda, Galantamine and Zoloft. So far she seems to be okay with it. Only time will tell............ Sharon, in Ohio Subject: Re: ROLL CALL! To: LBDcaregivers Date: Saturday, November 13, 2010, 3:52 PM  Here's my status update: My father was diagnosed at Upstate Medical Center in Syracuse, NY around 2004 with LBD after having REM sleep issues and hallucinations of " little people " at night which did not concern him. He also was feeling fatigued. He has been on Aricept since that time. My parents moved to a Senior living community near me in northeast Ohio in 2005. Since then, Dad has seen physicians at the Cleveland Clinic. He is now (since a hospitalization in July)needing aides all day to help with walking, transfers and toileting. He is doing quite well mentally a lot of the time and was put on Namenda in 2005 in addition to the Aricept. He started on low Seroquel a year ago when the nightmares worsened and that does a wonderful job so far. He is amazingly peaceful and accepting of his condition. We haven't had any acting out yet and he usually knows who we are, but struggles to find the right words. I am grateful his decline has been less precipitous than we feared, but we are realistic that things can change quickly at any time. I am also so thankful for this group. I have learned so much. --Carol, daughter of . > > Everybody - a suggestion was made that we each post a 'status update' on where we are in our respective journies and I think that's a great idea. > > Start a new post or reply to this one - whichever is easier... > > I'll get us started ... > > As you know my mom is gone since 2006. But I think/breath/live Lewy on daily basis by providing information for LBDCaregivers & the famous Links section, facilitating a support group in my neck of the woods (had a meeting last night) and managing the LBDA page on Facebook. > > We had a very successful LBD Awareness Week last month. In Mass. alone we had 4 events, all different, from a lecture by Gomperts, MD of Mass. General Hospital, to art therapy for caregivers, to a book signing by Graboys, MD, to a race - which made history again by bringing in more donations for one event to LBDA. Many people made the above possible - I'm proud to have been one of many... > > Where are YOU in this journey? > > ; loving daughter of Maureen of Boston, MA; dx'd with LBD in 2/2006 (confirmed via brain biopsy;) fell victim to rapid decline from Risperidone; Mom fell into the 50% category of those who could not handle antipsychotics; Was successful on Celexa, Exelon, ALA & B1; Mom became my Guardian Angel on Sept. 30th, 2006. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 13, 2010 Report Share Posted November 13, 2010 God bless you, Jan, for your tireless efforts. My Mom is 76, about 10 years into the Lewy rollercoaster.... some things are last stage, and some are not.... she needs help with all daily living skills.... walking, feeding, toileting, bathing.... and when she comes out with a sentences, it is a celebration. But, she knows who we are, she loves us unconditionally, and she is grateful for our care. AND she has NEVER complained...... Interesting read about the cinnamon.... I take the cranberry pills regularly, and have cinnamon with my cappucino almost every night, but I get UTI's about twice a year - usually as a result of some kind of stress.... Sending you hugs from NY, Helene > > Jim is progressing into LBD at a faster pace now. I'm still on a roller coaster > with good and not so good days, never knowing what each day will be like when I > arrive. > Jim, my husband, gets frequent UTIs. I try hard to keep them at a minimum by > being at the nursing home where he has resided for 4 1/2 years by toileting > him while I am there to keep him dry. I visit daily for several hours. Jim is > not fond of cranberry juice and it is hard to get him to take it. For some > reason the doctor will not prescribe cranberry tablets. > Recently, about a month ago, I got a FWD on the computer about Cinnamon > preventing UTIs > http://www.ehow.com/facts_5579258_cinnamon-urinary-tract-infections.html and I > started giving Jim the honey/cinnamon mixture in heated water as a warm drink > and he likes it, I have given it to him everyday for a month and his urine is > clear again, so I believe it is working. It would be great if he has one less > battle to fight and the cinnamon actually does work. Jim seems to be losing > weight, even with eating his meals and I am bringing in cake and things high in > calories to help him to gain weight, he also has a " Magic Cup " everynight, > similar to ice cream, but for people that eat pureed food and have trouble > swallowing. The cup is about 300 calories. He still is not gaining. Jim used to > stay up for activities and other events at the nursing home, but he seems to get > tired faster now and sleeps more often in his wheelchair. Sometimes they attempt > to bring him to his bed for a nap, but he fights going to bed, so they let him > sleep in his chair during the day. > Other than losing weight, he seems to be in good spirits when it is a good day. > The good days come and go, but when they are there, they are very good and he > communicates with me and smiles. Another thing, I am not sure if it is my > imagination, but the honey/cinnamon drink seems to have helped Jim speak more > clearly and a little louder. It is not his constant whispery voice. > Jan Colello, San Francisco Bay Area, CA > Husband, Jim, dx w/ LBD 2003 > >  > > > > ________________________________ > > To: LBDcaregivers > Sent: Fri, November 12, 2010 7:28:51 AM > Subject: ROLL CALL! > >  > Everybody - a suggestion was made that we each post a 'status update' on where > we are in our respective journies and I think that's a great idea. > > > Start a new post or reply to this one - whichever is easier... > > I'll get us started ... > > As you know my mom is gone since 2006. But I think/breath/live Lewy on daily > basis by providing information for LBDCaregivers & the famous Links section, > facilitating a support group in my neck of the woods (had a meeting last night) > and managing the LBDA page on Facebook. > > > We had a very successful LBD Awareness Week last month. In Mass. alone we had 4 > events, all different, from a lecture by Gomperts, MD of Mass. General > Hospital, to art therapy for caregivers, to a book signing by Graboys, > MD, to a race - which made history again by bringing in more donations for one > event to LBDA. Many people made the above possible - I'm proud to have been one > of many... > > Where are YOU in this journey? > > ; loving daughter of Maureen of Boston, MA; dx'd with LBD in 2/2006 > (confirmed via brain biopsy;) fell victim to rapid decline from Risperidone; Mom > fell into the 50% category of those who could not handle antipsychotics; Was > successful on Celexa, Exelon, ALA & B1; Mom became my Guardian Angel on Sept. > 30th, 2006. > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 14, 2010 Report Share Posted November 14, 2010 Ron - don't get discouraged - took about 4 months before my group got rolling... So happy about your personal life - you deserve the best > > As many of you may know, I was my mother's caregiver. Mom was diagnosed with > Parkinson's several years prior to being diagnosed with LBD. It was only when > my father died in 2005, that her decline became rapid and we knew it was obvious > that there was something more wrong with her than Parkinson's. She got the > official diagnosis in 2005. I moved back home to take care of her at that time > because I was working as a Certified Nurse's Assistant (CNA.) In 2008, I moved > us both into a senior living apartment to make care giving for her a little > easier on us both. She won her battle in March, 2009. Since her passing, I > have decided to no longer work as a CNA and I have also moved to NC from > Michigan. I currently work for The City of Fayetteville and have met the most > wonderful woman, whom I have now known for approximately 2 years. I should > mention that 's grandmother also had Lewy Body Dementia. a daughter > who is almost 13 and I have achieved my life long dream of having my own > family. and I plan to get married and spend the rest of our lives > together and we don't take a single day for granted. I have become a volunteer > for the Lewy Body Dementia Association and started a support group here in > Fayetteville for caregivers, which I am trying to get off and running. and > I are always looking for more ways to help the cause and spread awareness. LBD > will always be a cause that I hold close to my heart and I will probably always > be involved in the fight to spread awareness and help other caregivers. > > > Heartfelt hugs to all, > Ron > > > > > > ________________________________ > > To: LBDcaregivers > Sent: Fri, November 12, 2010 10:28:51 AM > Subject: ROLL CALL! > > > Everybody - a suggestion was made that we each post a 'status update' on where > we are in our respective journies and I think that's a great idea. > > > Start a new post or reply to this one - whichever is easier... > > I'll get us started ... > > As you know my mom is gone since 2006. But I think/breath/live Lewy on daily > basis by providing information for LBDCaregivers & the famous Links section, > facilitating a support group in my neck of the woods (had a meeting last night) > and managing the LBDA page on Facebook. > > > We had a very successful LBD Awareness Week last month. In Mass. alone we had 4 > events, all different, from a lecture by Gomperts, MD of Mass. General > Hospital, to art therapy for caregivers, to a book signing by Graboys, > MD, to a race - which made history again by bringing in more donations for one > event to LBDA. Many people made the above possible - I'm proud to have been one > of many... > > Where are YOU in this journey? > > ; loving daughter of Maureen of Boston, MA; dx'd with LBD in 2/2006 > (confirmed via brain biopsy;) fell victim to rapid decline from Risperidone; Mom > fell into the 50% category of those who could not handle antipsychotics; Was > successful on Celexa, Exelon, ALA & B1; Mom became my Guardian Angel on Sept. > 30th, 2006. > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 14, 2010 Report Share Posted November 14, 2010 Janet - shouldn't that magazine article with you be coming out soon? > > Jim is progressing into LBD at a faster pace now. I'm still on a roller coaster > with good and not so good days, never knowing what each day will be like when I > arrive. > Jim, my husband, gets frequent UTIs. I try hard to keep them at a minimum by > being at the nursing home where he has resided for 4 1/2 years by toileting > him while I am there to keep him dry. I visit daily for several hours. Jim is > not fond of cranberry juice and it is hard to get him to take it. For some > reason the doctor will not prescribe cranberry tablets. > Recently, about a month ago, I got a FWD on the computer about Cinnamon > preventing UTIs > http://www.ehow.com/facts_5579258_cinnamon-urinary-tract-infections.html and I > started giving Jim the honey/cinnamon mixture in heated water as a warm drink > and he likes it, I have given it to him everyday for a month and his urine is > clear again, so I believe it is working. It would be great if he has one less > battle to fight and the cinnamon actually does work. Jim seems to be losing > weight, even with eating his meals and I am bringing in cake and things high in > calories to help him to gain weight, he also has a " Magic Cup " everynight, > similar to ice cream, but for people that eat pureed food and have trouble > swallowing. The cup is about 300 calories. He still is not gaining. Jim used to > stay up for activities and other events at the nursing home, but he seems to get > tired faster now and sleeps more often in his wheelchair. Sometimes they attempt > to bring him to his bed for a nap, but he fights going to bed, so they let him > sleep in his chair during the day. > Other than losing weight, he seems to be in good spirits when it is a good day. > The good days come and go, but when they are there, they are very good and he > communicates with me and smiles. Another thing, I am not sure if it is my > imagination, but the honey/cinnamon drink seems to have helped Jim speak more > clearly and a little louder. It is not his constant whispery voice. > Jan Colello, San Francisco Bay Area, CA > Husband, Jim, dx w/ LBD 2003 > >  > > > > ________________________________ > > To: LBDcaregivers > Sent: Fri, November 12, 2010 7:28:51 AM > Subject: ROLL CALL! > >  > Everybody - a suggestion was made that we each post a 'status update' on where > we are in our respective journies and I think that's a great idea. > > > Start a new post or reply to this one - whichever is easier... > > I'll get us started ... > > As you know my mom is gone since 2006. But I think/breath/live Lewy on daily > basis by providing information for LBDCaregivers & the famous Links section, > facilitating a support group in my neck of the woods (had a meeting last night) > and managing the LBDA page on Facebook. > > > We had a very successful LBD Awareness Week last month. In Mass. alone we had 4 > events, all different, from a lecture by Gomperts, MD of Mass. General > Hospital, to art therapy for caregivers, to a book signing by Graboys, > MD, to a race - which made history again by bringing in more donations for one > event to LBDA. Many people made the above possible - I'm proud to have been one > of many... > > Where are YOU in this journey? > > ; loving daughter of Maureen of Boston, MA; dx'd with LBD in 2/2006 > (confirmed via brain biopsy;) fell victim to rapid decline from Risperidone; Mom > fell into the 50% category of those who could not handle antipsychotics; Was > successful on Celexa, Exelon, ALA & B1; Mom became my Guardian Angel on Sept. > 30th, 2006. > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 14, 2010 Report Share Posted November 14, 2010 Hi , Yes, I heard from the interviewer. It will be out in Mid-December. I guess it is a quarterly magazine. I will definately let you know when it is out. Jan : ) ________________________________ To: LBDcaregivers Sent: Sun, November 14, 2010 8:33:19 AM Subject: Re: ROLL CALL!  Janet - shouldn't that magazine article with you be coming out soon? > > Jim is progressing into LBD at a faster pace now. I'm still on a roller coaster > > with good and not so good days, never knowing what each day will be like when I > > arrive. > Jim, my husband, gets frequent UTIs. I try hard to keep them at a minimum by > being at the nursing home where he has resided for 4 1/2 years by toileting > > him while I am there to keep him dry. I visit daily for several hours. Jim is > not fond of cranberry juice and it is hard to get him to take it. For some > reason the doctor will not prescribe cranberry tablets. > Recently, about a month ago, I got a FWD on the computer about Cinnamon > preventing UTIs > http://www.ehow.com/facts_5579258_cinnamon-urinary-tract-infections.html and I > > started giving Jim the honey/cinnamon mixture in heated water as a warm drink > and he likes it, I have given it to him everyday for a month and his urine is > clear again, so I believe it is working. It would be great if he has one less > battle to fight and the cinnamon actually does work. Jim seems to be losing > weight, even with eating his meals and I am bringing in cake and things high in > > calories to help him to gain weight, he also has a " Magic Cup " everynight, > similar to ice cream, but for people that eat pureed food and have trouble > swallowing. The cup is about 300 calories. He still is not gaining. Jim used to > > stay up for activities and other events at the nursing home, but he seems to >get > > tired faster now and sleeps more often in his wheelchair. Sometimes they >attempt > > to bring him to his bed for a nap, but he fights going to bed, so they let him > sleep in his chair during the day. > Other than losing weight, he seems to be in good spirits when it is a good day. > > The good days come and go, but when they are there, they are very good and he > communicates with me and smiles. Another thing, I am not sure if it is my > imagination, but the honey/cinnamon drink seems to have helped Jim speak more > clearly and a little louder. It is not his constant whispery voice. > Jan Colello, San Francisco Bay Area, CA > Husband, Jim, dx w/ LBD 2003 > >  > > > > ________________________________ > > To: LBDcaregivers > Sent: Fri, November 12, 2010 7:28:51 AM > Subject: ROLL CALL! > >  > Everybody - a suggestion was made that we each post a 'status update' on where > we are in our respective journies and I think that's a great idea. > > > Start a new post or reply to this one - whichever is easier... > > I'll get us started ... > > As you know my mom is gone since 2006. But I think/breath/live Lewy on daily > basis by providing information for LBDCaregivers & the famous Links section, > facilitating a support group in my neck of the woods (had a meeting last night) > > and managing the LBDA page on Facebook. > > > We had a very successful LBD Awareness Week last month. In Mass. alone we had 4 > > events, all different, from a lecture by Gomperts, MD of Mass. General > Hospital, to art therapy for caregivers, to a book signing by Graboys, > MD, to a race - which made history again by bringing in more donations for one > event to LBDA. Many people made the above possible - I'm proud to have been one > > of many... > > Where are YOU in this journey? > > ; loving daughter of Maureen of Boston, MA; dx'd with LBD in 2/2006 > (confirmed via brain biopsy;) fell victim to rapid decline from Risperidone; >Mom > > fell into the 50% category of those who could not handle antipsychotics; Was > successful on Celexa, Exelon, ALA & B1; Mom became my Guardian Angel on Sept. > 30th, 2006. > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 16, 2010 Report Share Posted November 16, 2010 Janet - interesting about the cinnamon - saved to the Links. Maybe it's the hot water with honey that's helped with Jim's voice. (?) > > Jim is progressing into LBD at a faster pace now. I'm still on a roller coaster > with good and not so good days, never knowing what each day will be like when I > arrive. > Jim, my husband, gets frequent UTIs. I try hard to keep them at a minimum by > being at the nursing home where he has resided for 4 1/2 years by toileting > him while I am there to keep him dry. I visit daily for several hours. Jim is > not fond of cranberry juice and it is hard to get him to take it. For some > reason the doctor will not prescribe cranberry tablets. > Recently, about a month ago, I got a FWD on the computer about Cinnamon > preventing UTIs > http://www.ehow.com/facts_5579258_cinnamon-urinary-tract-infections.html and I > started giving Jim the honey/cinnamon mixture in heated water as a warm drink > and he likes it, I have given it to him everyday for a month and his urine is > clear again, so I believe it is working. It would be great if he has one less > battle to fight and the cinnamon actually does work. Jim seems to be losing > weight, even with eating his meals and I am bringing in cake and things high in > calories to help him to gain weight, he also has a " Magic Cup " everynight, > similar to ice cream, but for people that eat pureed food and have trouble > swallowing. The cup is about 300 calories. He still is not gaining. Jim used to > stay up for activities and other events at the nursing home, but he seems to get > tired faster now and sleeps more often in his wheelchair. Sometimes they attempt > to bring him to his bed for a nap, but he fights going to bed, so they let him > sleep in his chair during the day. > Other than losing weight, he seems to be in good spirits when it is a good day. > The good days come and go, but when they are there, they are very good and he > communicates with me and smiles. Another thing, I am not sure if it is my > imagination, but the honey/cinnamon drink seems to have helped Jim speak more > clearly and a little louder. It is not his constant whispery voice. > Jan Colello, San Francisco Bay Area, CA > Husband, Jim, dx w/ LBD 2003 > >  > > > > ________________________________ > > To: LBDcaregivers > Sent: Fri, November 12, 2010 7:28:51 AM > Subject: ROLL CALL! > >  > Everybody - a suggestion was made that we each post a 'status update' on where > we are in our respective journies and I think that's a great idea. > > > Start a new post or reply to this one - whichever is easier... > > I'll get us started ... > > As you know my mom is gone since 2006. But I think/breath/live Lewy on daily > basis by providing information for LBDCaregivers & the famous Links section, > facilitating a support group in my neck of the woods (had a meeting last night) > and managing the LBDA page on Facebook. > > > We had a very successful LBD Awareness Week last month. In Mass. alone we had 4 > events, all different, from a lecture by Gomperts, MD of Mass. General > Hospital, to art therapy for caregivers, to a book signing by Graboys, > MD, to a race - which made history again by bringing in more donations for one > event to LBDA. Many people made the above possible - I'm proud to have been one > of many... > > Where are YOU in this journey? > > ; loving daughter of Maureen of Boston, MA; dx'd with LBD in 2/2006 > (confirmed via brain biopsy;) fell victim to rapid decline from Risperidone; Mom > fell into the 50% category of those who could not handle antipsychotics; Was > successful on Celexa, Exelon, ALA & B1; Mom became my Guardian Angel on Sept. > 30th, 2006. > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 16, 2010 Report Share Posted November 16, 2010 Barbara - you seem to be juggling a lot - how wonderful of you to get both your parents to live closer to you so you can provide the needed visits. You're doing a wonderful job > > I have been following this group for about a year now (maybe longer, I can't > remember). My mother was diagnosed with LBD in 2006. She and my Dad lived in New > Hampshire, and I am in Connecticut. With neither of them able to drive, they had > to rely on friends and neighbors. However, if there was an " emergency " they > called me, 2 1/2 hours away! They could not count on my brother who lives only > 20 minutes away. So, I finally convinced them to move to Connecticut to an > assited living facility. They started in Independent Living but it did not take > long before I had to move Mom to a dementia unit--she was seeing children in the > apartment, tore down the curtains one day because there were people trying to > get in or trying to tear the curtains down, she would yell at non-existant > people, etc. My Dad was afraid to leave her alone, so he was trapped. Now Dad in > is assisted living physically close to Mom, but there is a locked door between > them. Mom was starting to feel comfortable with the new living arrangements when > Dad fell and broke his left hip this August. Mom cannot leave the unit without > someone to accompany her, and that means she can only visit Dad when I am not > busy (I work full time and have commitments on Tuesdays and Thursdays). I wish I > could do more, but I am exhausted as it is. Mom's Parkinson's seems worse at > times--her legs seem to lock up on her. We increased the Sinimet and that took > care of it for about two months, but the freezing seems to be coming back. And > the Sinimet made the hallucinations a bit worse, but not scary. She is on > Excelon, Sinimet, Toprol (for her blood pressure) and an anti-depressant. We are > at least holding our own, or so I thought. Last night when I called to check on > her, she was in New Hampshire! Thank goodness one of the aides sat with her and > calmed her down a bit--Mom did not know how she was going to get back. This > disease is very stressful, and I feel badly complaining because I am not giving > direct care. However, it doesn't mean the course of the diseasse is any easier > to take. Thank goodness for this group. I have learned a lot and can speak to > her neurologist so he knows that I know what I am talking about. Thank you all. > > Barbara, daughter of Betsy, diagnosed 2006. > > > > ------------------------------------ > > Welcome to LBDcaregivers. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 16, 2010 Report Share Posted November 16, 2010 Great advice about not forgetting one's own health. Thank you. Here's hoping you find strength in the memories of your husband as we enter Thanksgiving - I'm sure it will be a tough time for you - hopefully your happy memories will get you through. > > > > Everybody - a suggestion was made that we each post a 'status update' on where we are in our respective journies and I think that's a great idea. > > > > Start a new post or reply to this one - whichever is easier... > > > > I'll get us started ... > > > > As you know my mom is gone since 2006. But I think/breath/live Lewy on daily basis by providing information for LBDCaregivers & the famous Links section, facilitating a support group in my neck of the woods (had a meeting last night) and managing the LBDA page on Facebook. > > > > We had a very successful LBD Awareness Week last month. In Mass. alone we had 4 events, all different, from a lecture by Gomperts, MD of Mass. General Hospital, to art therapy for caregivers, to a book signing by Graboys, MD, to a race - which made history again by bringing in more donations for one event to LBDA. Many people made the above possible - I'm proud to have been one of many... > > > > Where are YOU in this journey? > > > > ; loving daughter of Maureen of Boston, MA; dx'd with LBD in 2/2006 (confirmed via brain biopsy;) fell victim to rapid decline from Risperidone; Mom fell into the 50% category of those who could not handle antipsychotics; Was successful on Celexa, Exelon, ALA & B1; Mom became my Guardian Angel on Sept. 30th, 2006. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 16, 2010 Report Share Posted November 16, 2010 Struggling to find the right words... that must be so frustrating for our loved ones... they have the words, they know them - it's just finding them to speak them... I remember my mother would answer a question days after it was asked b/c she finally remembered the words to answer them - this was before the rapid decline she experienced after receiving Risperidone... We didn't know LBD then though... > > > > Everybody - a suggestion was made that we each post a 'status update' on where we are in our respective journies and I think that's a great idea. > > > > Start a new post or reply to this one - whichever is easier... > > > > I'll get us started ... > > > > As you know my mom is gone since 2006. But I think/breath/live Lewy on daily basis by providing information for LBDCaregivers & the famous Links section, facilitating a support group in my neck of the woods (had a meeting last night) and managing the LBDA page on Facebook. > > > > We had a very successful LBD Awareness Week last month. In Mass. alone we had 4 events, all different, from a lecture by Gomperts, MD of Mass. General Hospital, to art therapy for caregivers, to a book signing by Graboys, MD, to a race - which made history again by bringing in more donations for one event to LBDA. Many people made the above possible - I'm proud to have been one of many... > > > > Where are YOU in this journey? > > > > ; loving daughter of Maureen of Boston, MA; dx'd with LBD in 2/2006 (confirmed via brain biopsy;) fell victim to rapid decline from Risperidone; Mom fell into the 50% category of those who could not handle antipsychotics; Was successful on Celexa, Exelon, ALA & B1; Mom became my Guardian Angel on Sept. 30th, 2006. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 16, 2010 Report Share Posted November 16, 2010 Sherry - you will always be thankful for the closeness you experience during this journey. My mother & I were close before the journey, yet got even closer towards the end - I'm grateful for that. I feel bad for my brother who didn't get to experience that (his choosing) - > > Everybody - a suggestion was made that we each post a 'status update' on where we are in our respective journies and I think that's a great idea. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 16, 2010 Report Share Posted November 16, 2010 And you were wonderful & loving to your precious True Texas Gentleman he was lucky to have you... > > > > Everybody - a suggestion was made that we each post a 'status update' on where we are in our respective journies and I think that's a great idea. > > > > Start a new post or reply to this one - whichever is easier... > > > > I'll get us started ... > > > > As you know my mom is gone since 2006. But I think/breath/live Lewy on daily basis by providing information for LBDCaregivers & the famous Links section, facilitating a support group in my neck of the woods (had a meeting last night) and managing the LBDA page on Facebook. > > > > We had a very successful LBD Awareness Week last month. In Mass. alone we had 4 events, all different, from a lecture by Gomperts, MD of Mass. General Hospital, to art therapy for caregivers, to a book signing by Graboys, MD, to a race - which made history again by bringing in more donations for one event to LBDA. Many people made the above possible - I'm proud to have been one of many... > > > > Where are YOU in this journey? > > > > ; loving daughter of Maureen of Boston, MA; dx'd with LBD in 2/2006 (confirmed via brain biopsy;) fell victim to rapid decline from Risperidone; Mom fell into the 50% category of those who could not handle antipsychotics; Was successful on Celexa, Exelon, ALA & B1; Mom became my Guardian Angel on Sept. 30th, 2006. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 16, 2010 Report Share Posted November 16, 2010 Dear and Everyone, I have been a member for a long time, but stayed silent till now. I read every message every day and you all have given me support without being aware of it in this journey of ours. My name is Ferhan Ziyal. I live in Istanbul/Turkey. My mom Neriman has LBD and she is 85 now. It all started 10 years ago. At first years the doctors couldn't find a thing, but I sensed that something was wrong. Then she started to fall down frequently. She was living by herself at that time. When she started repeating and forgetting things and hallucinating, they said it was Alzheimer's. Then she broke her ankle and was hospitalized and they made an angiography and had a pace maker placed in. The medication used during these two operations affected her in a terrible way. This took place 6 years ago and she started going on a decline since then. She was diagnosed LBD 4 years ago thanks to our new neurologist. She is on Seroquel, Ebixa, Cipram and Madopar. She suffered from hallucinations a lot. When she saw herself in a mirror she used to think the image was a strange woman who came home to hurt her! I do not know which one to tell. We have so many heart hurting stories. Those years were so sad and tiring for me. I myself started taking medications to stay calm. We were very close friends and it was really very hard for me to accept whatever was happening to her. My uncle and my aunt passed away a few years ago and they were both diognosed Alzheimer's. Mom is quite stable now. She does not recognize any of us, but she smiles and seems happy. She sleeps most of the time. During the day time her eyes mostly closed. She lives in a different world of hers. It is very hard for her to walk and needs two people to help her get up and take a few steps. She mumbles but nothing comes out which makes sense. We feed her and put on diapers. She started swallowing issues and Madopar helped a lot. I moved her to a small apartment very close to where I live. I have a 26 year old son who lives in USA since 7 years. Whenever he comes home he visits grandma and feels very sorry. I visit my mom everyday and take her pictures and try to make a film whenever I catch her awake and with open eyes. This journey is very sad for all of us. I wish everyone courage and strength to take care of our loved ones. Thank you all, Ferhan Daughter of Neriman, 85, LBD ________________________________ To: LBDcaregivers Sent: Tue, November 16, 2010 12:30:45 PM Subject: Re: ROLL CALL! Janet - interesting about the cinnamon - saved to the Links. Maybe it's the hot water with honey that's helped with Jim's voice. (?) > > Jim is progressing into LBD at a faster pace now. I'm still on a roller coaster > > with good and not so good days, never knowing what each day will be like when I > > arrive. > Jim, my husband, gets frequent UTIs. I try hard to keep them at a minimum by > being at the nursing home where he has resided for 4 1/2 years by toileting > > him while I am there to keep him dry. I visit daily for several hours. Jim is > not fond of cranberry juice and it is hard to get him to take it. For some > reason the doctor will not prescribe cranberry tablets. > Recently, about a month ago, I got a FWD on the computer about Cinnamon > preventing UTIs > http://www.ehow.com/facts_5579258_cinnamon-urinary-tract-infections.html and I > > started giving Jim the honey/cinnamon mixture in heated water as a warm drink > and he likes it, I have given it to him everyday for a month and his urine is > clear again, so I believe it is working. It would be great if he has one less > battle to fight and the cinnamon actually does work. Jim seems to be losing > weight, even with eating his meals and I am bringing in cake and things high in > > calories to help him to gain weight, he also has a " Magic Cup " everynight, > similar to ice cream, but for people that eat pureed food and have trouble > swallowing. The cup is about 300 calories. He still is not gaining. Jim used to > > stay up for activities and other events at the nursing home, but he seems to >get > > tired faster now and sleeps more often in his wheelchair. Sometimes they >attempt > > to bring him to his bed for a nap, but he fights going to bed, so they let him > sleep in his chair during the day. > Other than losing weight, he seems to be in good spirits when it is a good day. > > The good days come and go, but when they are there, they are very good and he > communicates with me and smiles. Another thing, I am not sure if it is my > imagination, but the honey/cinnamon drink seems to have helped Jim speak more > clearly and a little louder. It is not his constant whispery voice. > Jan Colello, San Francisco Bay Area, CA > Husband, Jim, dx w/ LBD 2003 > >  > > > > ________________________________ > > To: LBDcaregivers > Sent: Fri, November 12, 2010 7:28:51 AM > Subject: ROLL CALL! > >  > Everybody - a suggestion was made that we each post a 'status update' on where > we are in our respective journies and I think that's a great idea. > > > Start a new post or reply to this one - whichever is easier... > > I'll get us started ... > > As you know my mom is gone since 2006. But I think/breath/live Lewy on daily > basis by providing information for LBDCaregivers & the famous Links section, > facilitating a support group in my neck of the woods (had a meeting last night) > > and managing the LBDA page on Facebook. > > > We had a very successful LBD Awareness Week last month. In Mass. alone we had 4 > > events, all different, from a lecture by Gomperts, MD of Mass. General > Hospital, to art therapy for caregivers, to a book signing by Graboys, > MD, to a race - which made history again by bringing in more donations for one > event to LBDA. Many people made the above possible - I'm proud to have been one > > of many... > > Where are YOU in this journey? > > ; loving daughter of Maureen of Boston, MA; dx'd with LBD in 2/2006 > (confirmed via brain biopsy;) fell victim to rapid decline from Risperidone; >Mom > > fell into the 50% category of those who could not handle antipsychotics; Was > successful on Celexa, Exelon, ALA & B1; Mom became my Guardian Angel on Sept. > 30th, 2006. > > > > > > > > Quote Link to comment Share on other sites More sharing options...
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