Guest guest Posted January 16, 2012 Report Share Posted January 16, 2012 Hi Judy, Re the local group. I live in Bucks County, Pa and we have a wonderful local group. I will e-mail her and see if I can have her get in touch with you. In the beginning when mom was diagnosed with LBD I found both the local group and this online group at once. Our group leader is wonderful- always full of information and seems to know exactly where to turn for every question asked. She knows so much about LBD and all the right doctors, etc. She was a caregiver of a sweet woman with LBD who I think had no one to care for her except her caregiver and it is in her honor and memory that our leader started this group. One down side of the group is that the members are all in different stages of LBD. Many members bring their spouses, some who are quite young actually. We all take a turn going around the table sharing our experiences. But from day one I did not share much because I did not want to upset those members present who weren't as far along in the disease as my mom is. Some get up and leave when certain subjects are mentioned, because it makes them too uncomfortable. I would do the same if I were them. Others have mentioned having two tables in two separate rooms for those in the beginning stages and those in the later stages. But then you would need two group discussion leaders. Just thought this information might be helpful. And yes it would be fun to actually meet someday - great idea! Marcie _____ From: LBDcaregivers [mailto:LBDcaregivers ] On Behalf Of Judy Strauss Sent: Sunday, January 15, 2012 10:23 PM To: LBDcaregivers Subject: Re: Welcome New Members Hi Jan, You are lucky you have has the occasion to have friends close by to socialize with who are part of the group. I would imagine that as you say that it is meaningful to match faces with names who have been so much a part of your journey through lewy land with a loved one. I'm actually amazed there are not more people for The NYC area who are part of this forum - If there are other members from the NY, NJ and the tristate area here I would love to know who you are- the only one I have I know this far is helene ..... Thanks, Judy Judy R Strauss, LMSW, PhD Area Chair | College of Social Sciences University of Phoenix Jersey City Campus | 100 Town Square Place | Suite 305 Jersey City, NJ 07310 Cell: Email: Jrstr@... <mailto:Jrstr%40email.phoenix.edu> On Jan 15, 2012, at 10:11 PM, Janet Colello <janetcolello@... <mailto:janetcolello%40yahoo.com> > wrote: > Hi Judy, > I am not talking about a support group, but just people from this site online that live in my area. We meet occasionally for coffee or lunch. > It's nice to get together with them and to have met them. I have met several people from this online site in my area over the years, some still involved with their LOs and some, as I am, have lost their LO. If there are any that are not far from you from this online site, it is fun to get together and meet them. > > ________________________________ > From: Judy Strauss <jrstraussb@... <mailto:jrstraussb%40aol.com> > > To: " LBDcaregivers <mailto:LBDcaregivers%40yahoogroups.com> " <LBDcaregivers <mailto:LBDcaregivers%40yahoogroups.com> > > Sent: Sunday, January 15, 2012 7:04 PM > Subject: Re: Welcome New Members > > Hi Jan, > > Funny you talk about a support group and seeing people face to face -The only group I am aware of through this forum in NYC is in long island - a far way off from where I live to attend on a regular basis - > > With my professional training and now first Hans experience with LBD as a caregiver I am interested in starting a group in the NYC area - if anyone has any ideas of how to get this off the ground please let me know ! > > Judy > > Judy R Strauss, LMSW, PhD > Area Chair | College of Social Sciences > > University of Phoenix > Jersey City Campus | 100 Town Square Place | Suite 305 > Jersey City, NJ 07310 > Cell: > Email: Jrstr@... <mailto:Jrstr%40email.phoenix.edu> > > On Jan 15, 2012, at 9:47 PM, Janet Colello <janetcolello@... <mailto:janetcolello%40yahoo.com> > wrote: > > > Thank you Judy for your kind words. I am kind of in contact with Jim's kids. Although, we were all close at one time, when Jim became ill they disappeared and showed up occasionally. They seemed more interested in how much they could make off of the house and were talking about it even while Jim was in the process of dying. I told them to be quiet, because hearing is one of the last senses to go and I am sure Jim could hear them. They made me angry when they put the house up for sale so soon after Jim died. I never gave them my new address, they can e-mail me or text message me, but I don't want them to come visiting. I heard from them over the holidays on e-mail and that was good enough. > > > > " I was thinking when this is over for a way to visit all of you - wouldn't it be moving to see the faces that match your names on the emails....sharing this with all of you is a savior to my bruised soul..... " > > > > Judy, I have met some of the group people. There are several in my area where I live and we meet for coffee or lunch once in awhile. > > Do you have any in your area to meet with? I also met some at the Washington DC Conference for LBD several years ago. It was wonderful meeting the faces of the people that seem like family here. Every once in awhile they do have group meetings or reunions in different states. They had one in Michigan a few years ago, and Sandie started the first one ever with this group in the early 2000s or maybe even late 90s, I wasn't even in this group yet. If you hear of one that isn't too far for you to travel they are fun to go to and meet people from the group site. Every now and then someone will decide to set it up in a state where they live or a state near them. I didn't attend the one in Michigan, but they sent photos of it, and I talked to all the gang on the phone. I wish I could have attended, but I had Jim to care for, it looked like fun. You can see the photos in the LBD album of the group get-togethers. Anyone that wants to set up a group > > get-together can do it, but it's a lot of work. They need to get group rates at a hotel and set everything up for the gathering, maybe some tours, and make sure everyone gets the information, so there is a turn out of people. If anyone is interested in doing something like that they are welcome to it. There is no committee that does this on an annual basis, it's done by whoever wants to do it. The ones that have gone before and done it, can help with info. on how to get it started I am sure. > > > > > > > > ________________________________ > > From: Judy Strauss <jrstraussb@... <mailto:jrstraussb%40aol.com> > > > To: " LBDcaregivers <mailto:LBDcaregivers%40yahoogroups.com> " <LBDcaregivers <mailto:LBDcaregivers%40yahoogroups.com> > > > Sent: Saturday, January 14, 2012 11:25 AM > > Subject: Re: Welcome New Members > > > > Hi Jan, > > > > It must have been such a shock to your system for Jim's kids to have sold the house within months of his passing...,I vaguely remember your writing about this last year here in the forum....do u have anything to do with the kids anymore ? I would think it may be a comfort to be in touch with someone who shares Jim's DNA....only that is of they are kind to you. > > > > I guess there is no use to sit and wonder why this is all happening...and although i am not there yet I have no doubt in the truth about not having your Loved one's presence anymore is mixed with the emotion that they are not suffering but you still miss them rings true for me.... > > > > I was thinking when this is over for a way to visit all of you - wouldn't it be moving to see the faces that match your names on the emails....sharing this with all of you is a savior to my bruised soul..... > > > > Jan, keep healing and thank you for staying here on the board to help us who are waking the road right behind you ....it's a noble deed and I hope you get some solace in knowing that you are a great support.... > > > > Xoxox > > > > Judy > > > > Judy R Strauss, LMSW, PhD > > Area Chair | College of Social Sciences > > > > University of Phoenix > > Jersey City Campus | 100 Town Square Place | Suite 305 > > Jersey City, NJ 07310 > > Cell: > > Email: Jrstr@... <mailto:Jrstr%40email.phoenix.edu> > > > > On Jan 14, 2012, at 1:46 PM, Janet Colello <janetcolello@... <mailto:janetcolello%40yahoo.com> > wrote: > > > > > Hi Judy, > > > It was odd not to see any posts here for a few days. I have been on this site since 2003 and there are lulls, but there has never been a lull where there is not one person here that I have seen. I'm so sorry to hear about your emotional happenings. I too am experiencing a lot of tearful moments that just seem to pop up out of nowhere. This coming week is the year anniversary of Jim's passing. My birthday is on the 21st and Jim passed in the early morning of the 22nd. I prayed he would not pass on my birthday. Hospice said that was the day that they had determined he would go. In Jim's weak shape I know he did not know it was my birthday, but he managed to hold on one day and left me on the 22nd. I was numb the day he died, and things moved so fast after his death, since he left the house in a Trust to his kids. He lived in that house before we were married. His kids put the house up for sale 2 months after he passed, and I had to pack and move out > > > since the house sold fast. I had no time to go through Jim's things. I had to scale way down, since I moved to a much smaller place. I gave them all to a church and they brought his equipment; wheelchair etc...... and things all over the world and blessed the world with them. It lifted my heart to hear that Jim still did so much for others when he was gone. > > > Things moved so fast then there was barely time to grieve and I am really feeling it this year without him. > > > No matter how you cut it, Lewy is a horrible disease, their being is there with you when they are living, but they are not the same person > > > you knew and grieving starts then, but their presence means so much. When they are gone you rejoice that they no longer suffer, but you miss their presence. > > > I hope you find some solace in this day that you are not alone. > > > Jan Colello > > > Husband, Jim, dx w/LBD 2003 > > > Deceased, January 2011 > > > > > > ________________________________ > > > From: Judy Strauss <jrstraussb@... <mailto:jrstraussb%40aol.com> > > > > To: " LBDcaregivers <mailto:LBDcaregivers%40yahoogroups.com> " <LBDcaregivers <mailto:LBDcaregivers%40yahoogroups.com> > > > > Sent: Friday, January 13, 2012 6:05 PM > > > Subject: Re: Welcome New Members > > > > > > Hi Jan, > > > > > > OMG - I was thinking the same thing Jan. I have been so down this last week- feeling scared and alone with my sadness about my mom. I drove to the university last night for a workshop:training and cried the whole way down. It takes me app 1 hour to get there. > > > > > > I suppose it's the beginning of a new year that is bringing me down as of late. I cling to my husband who is quite a bit older than me....all the while scared of losing him too..... > > > > > > My mom has been unable to speak, walk, been incontinent and not recognizing me for almost a year now... Do others here feel that after going through all these losses while their loved one is alive over the years they decline prepare them for their eventual demise ?? > > > > > > Not seeing posts for several days made me recognize once more how important you all are to me and my wellbeing. > > > > > > Thank you, > > > > > > Judy > > > > > > Judy R Strauss, LMSW, PhD > > > Area Chair | College of Social Sciences > > > > > > University of Phoenix > > > Jersey City Campus | 100 Town Square Place | Suite 305 > > > Jersey City, NJ 07310 > > > Cell: > > > Email: Jrstr@... <mailto:Jrstr%40email.phoenix.edu> > > > > > > On Jan 13, 2012, at 8:39 PM, Janet Colello <janetcolello@... <mailto:janetcolello%40yahoo.com> > wrote: > > > > > > > > > > > > > > > Where is everyone? For two days I have not one LBD Post. Am I not getting them or is it a down time? > > > > Jan Colello > > > > > > > > ________________________________ > > > > From: <octoryrose@... <mailto:octoryrose%40yahoo.com> > > > > > To: LBDcaregivers <mailto:LBDcaregivers%40yahoogroups.com> > > > > Sent: Thursday, January 12, 2012 3:17 AM > > > > Subject: Welcome New Members > > > > > > > > I'm glad you found us. > > > > > > > > First & foremost: > > > > > > > > NO TRADITIONAL ANTIPSYCHOTICS (e.g. Haldol, Chlorpromazine), > > > > NO ANTICHOLINERGIC DRUGS (e.g. Benadryl, Tylenol PM, Detrol, Enablex) > > > > > > > > EXTREME CAUTION with MOST BENZODIAZEPINES (e.g. Ativan) > > > > EXTREME CAUTION with some ATYPICAL ANTIPSYCHOTICS (e.g. Risperidone, Zyprexa) - but some are used w/ success (e.g. Seroquel, Clozaril) " Start Low, Go Slow " > > > > > > > > Take a moment to post a possible med. before trying - this board has an archives section w/ tons & tons of warnings about meds that don't work for those w/ LBD - they are extremely sensitive to meds! > > > > > > > > Read here: > > > > Risperdal & Haldol > > > > Message w/ collection of articles re: above > > > > http://health.groups.yahoo.com/group/LBDcaregivers/message/70932 > > > > > > > > 2006, July 2 -- ADVERSE EFFECTS OF ANTIPSYCHOTICS ARE 'TIP OF THE ICEBERG' > > > > Letter to the Editor - by Louis R. Caplan, MD > > > > http://health.groups.yahoo.com/group/LBDcaregivers/message/73781 > > > > > > > > Dementia With Lewy Bodies: A Review Of Clinical > > > > Benzodiazepines (e.g. Ativan) may negatively affect cognition and produce sedation, paradoxic agitation and increased risk of falls in the elderly > > > > http://tinyurl.com/2n54qj > > > > > > > > Why such strong feelings about benzos? > > > > Message by , also includes info re: an exception to the no benzo warning, Klonopin, that has been used with success for RBD (REM Behavior Disorder) by Dr. Boeve. > > > > http://health.groups.yahoo.com/group/LBDcaregivers/message/61849 > > > > > > > > A Lewy Body patient > > > > Lewy Body symptoms make my life one of constant frustration. > > > > by Shirley Lay > > > > http://www.care-givers.com/DBArticles/pages/viewarticle.php?id=730 > > > > > > > > Evaluating Meds > > > > Advice from a PharmaD via Lin > > > > http://health.groups.yahoo.com/group/LBDcaregivers/message/75551 > > > > > > > > Legal Stuff - get it done NOW > > > > http://health.groups.yahoo.com/group/LBDcaregivers/files/ > > > > scroll down to this document: > > > > The Business of Dementia.doc > > > > The 'legal' things you need to know about > > > > > > > > Top links to important LBD resources (IMHO) > > > > > > > > A Must Read by Dr. Bradley Boeve > > > > A Comprehensive Approach to Treatment can Significantly Improve the > > > > Quality of Life of Patients with the Lewy body dementias. > > > > http://tinyurl.com/c2m5l6 > > > > > > > > Diagnostic Review & Medicine Management > > > > by Bradley F. Boeve, MD (October 2004) Physicians guide to diagnosing > > > > and treating DLB/LBD. Includes recommended dosages. > > > > http://tinyurl.com/bhppca > > > > > > > > An Introduction to Lewy Body Dementia - for newly diagnosed patients and their family > > > > http://www.lbda.org/index.cfm?fuseaction=product.print <http://www.lbda.org/index.cfm?fuseaction=product.print & product_id=10255> & product_id=10255 > > > > > > > > *** 2006, September 08 -- Lewy body dementia > > > > From MayoClinic.com, Special to CNN.com. Norma says, " ...this is the most detailed, accurate information I've ever read about LBD. I think it should be sent to all new caregivers AND doctors who aren't clear. Thoughts everyone? " Keli says, " Definately yes!!! This is very informative yet not overwhelming. It can easily be shared with others. I intend to have my husband and children read it, and hopefully my moms dr's as well. Very good information. " > > > > http://www.cnn.com/HEALTH/library/lewy-body-dementia/DS00795.html?iref=newss earch > > > > > > > > LBD Brochure > > > > (to print use legal size paper) > > > > http://www.lbda.org/feature/1925/facts-about-lbd-brochure.htm > > > > > > > > " Difficulties in Diagnosing Lewy Body Dementia " > > > > by T. MD > > > > http://www.youtube.com/LBDAtv > > > > > > > > Live Chat Event with Gomperts, MD > > > > Dr. Gomperts answered your questions in this Q & A session from March 2007 > > > > http://www.lbda.org/node/597 > > > > > > > > If your LO hasn't been diagnosed yet, make sure they get a FDG-PET assessment. > > > > http://interactive.snm.org/index.cfm?PageID=7405 <http://interactive.snm.org/index.cfm?PageID=7405 & RPID=627> & RPID=627 > > > > > > > > And a summary of what's on this board: > > > > Main board: > > > > http://groups.yahoo.com/group/LBDcaregivers/ > > > > (Read your emails via the board vs. your `in box'. And get into all > > > > the different sections that are available on the website. Search > > > > archived messages here.) > > > > > > > > Links Section: > > > > http://health.groups.yahoo.com/group/LBDcaregivers/links > > > > (Tons of links that is continuously a `work in progress' - all these > > > > links are useful to the caregiver. A variety of categories neatly > > > > organized into folders - what topic are you interested in? Find the > > > > folder and within it find numerous links to other websites for > > > > additional information.) > > > > > > > > Files Section: > > > > http://health.groups.yahoo.com/group/LBDcaregivers/files/ > > > > (Read other caregiver's stories, read about the good & bad drugs > > > > here, print a " companion card " from here (cards to hand out in public > > > > areas about your LO's behavior), find the locations of other > > > > caregivers who are possibility living in your immediate area, FAQ > > > > document, LBD Phases by LBD Caring Spouses, etc.) > > > > > > > > Database Section: > > > > http://health.groups.yahoo.com/group/LBDcaregivers/database > > > > (Suggested reading, learn the common denominators about our loved > > > > ones, medical referrals, nursing home referrals, bibliography of LBD > > > > in literature and film, etc.) > > > > > > > > Photos Section: > > > > http://health.ph.groups.yahoo.com/group/LBDcaregivers/photos > > > > (Put a face to a name.) > > > > > > > > Polls Section: > > > > http://health.groups.yahoo.com/group/LBDcaregivers/polls > > > > (Several polls running re: LBD) > > > > > > > > ; 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. > > > > > > > > ------------------------------------ > > > > > > > > Welcome to LBDcaregivers. > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 16, 2012 Report Share Posted January 16, 2012 HI Marcie: I am glad that you had a local support group. There is no LBD groups in my area. This on-line forum is very helpful to me. Vivian (49) (spouse of husband dx with PD, then LBD in 2010) > ** > > > Hi Judy, > > Re the local group. I live in Bucks County, Pa and we have a wonderful > local group. I will e-mail her and see if I can have her get in touch with > you. In the beginning when mom was diagnosed with LBD I found both the > local group and this online group at once. > > Our group leader is wonderful- always full of information and seems to know > exactly where to turn for every question asked. She knows so much about > LBD and all the right doctors, etc. She was a caregiver of a sweet woman > with LBD who I think had no one to care for her except her caregiver and it > is in her honor and memory that our leader started this group. > > One down side of the group is that the members are all in different stages > of LBD. Many members bring their spouses, some who are quite young > actually. We all take a turn going around the table sharing our > experiences. But from day one I did not share much because I did not want > to upset those members present who weren't as far along in the disease as > my > mom is. Some get up and leave when certain subjects are mentioned, > because it makes them too uncomfortable. I would do the same if I were > them. > > Others have mentioned having two tables in two separate rooms for those in > the beginning stages and those in the later stages. But then you would > need two group discussion leaders. > > Just thought this information might be helpful. And yes it would be fun to > actually meet someday - great idea! > > Marcie > > _____ > > From: LBDcaregivers [mailto:LBDcaregivers ] > On Behalf Of Judy Strauss > Sent: Sunday, January 15, 2012 10:23 PM > To: LBDcaregivers > Subject: Re: Welcome New Members > > Hi Jan, > > You are lucky you have has the occasion to have friends close by to > socialize with who are part of the group. I would imagine that as you say > that it is meaningful to match faces with names who have been so much a > part > of your journey through lewy land with a loved one. > > I'm actually amazed there are not more people for The NYC area who are part > of this forum - If there are other members from the NY, NJ and the tristate > area here I would love to know who you are- the only one I have I know this > far is helene ..... > > Thanks, > > Judy > > Judy R Strauss, LMSW, PhD > Area Chair | College of Social Sciences > > University of Phoenix > Jersey City Campus | 100 Town Square Place | Suite 305 > Jersey City, NJ 07310 > Cell: > Email: Jrstr@... <mailto:Jrstr%40email.phoenix.edu> > > On Jan 15, 2012, at 10:11 PM, Janet Colello <janetcolello@... > <mailto:janetcolello%40yahoo.com> > wrote: > > > Hi Judy, > > I am not talking about a support group, but just people from this site > online that live in my area. We meet occasionally for coffee or lunch. > > It's nice to get together with them and to have met them. I have met > several people from this online site in my area over the years, some still > involved with their LOs and some, as I am, have lost their LO. If there are > any that are not far from you from this online site, it is fun to get > together and meet them. > > > > ________________________________ > > From: Judy Strauss <jrstraussb@... <mailto:jrstraussb%40aol.com> > > > To: " LBDcaregivers > <mailto:LBDcaregivers%40yahoogroups.com> " <LBDcaregivers > <mailto:LBDcaregivers%40yahoogroups.com> > > > Sent: Sunday, January 15, 2012 7:04 PM > > Subject: Re: Welcome New Members > > > > Hi Jan, > > > > Funny you talk about a support group and seeing people face to face -The > only group I am aware of through this forum in NYC is in long island - a > far > way off from where I live to attend on a regular basis - > > > > With my professional training and now first Hans experience with LBD as a > caregiver I am interested in starting a group in the NYC area - if anyone > has any ideas of how to get this off the ground please let me know ! > > > > Judy > > > > Judy R Strauss, LMSW, PhD > > Area Chair | College of Social Sciences > > > > University of Phoenix > > Jersey City Campus | 100 Town Square Place | Suite 305 > > Jersey City, NJ 07310 > > Cell: > > Email: Jrstr@... <mailto:Jrstr%40email.phoenix.edu> > > > > On Jan 15, 2012, at 9:47 PM, Janet Colello <janetcolello@... > <mailto:janetcolello%40yahoo.com> > wrote: > > > > > Thank you Judy for your kind words. I am kind of in contact with Jim's > kids. Although, we were all close at one time, when Jim became ill they > disappeared and showed up occasionally. They seemed more interested in how > much they could make off of the house and were talking about it even while > Jim was in the process of dying. I told them to be quiet, because hearing > is > one of the last senses to go and I am sure Jim could hear them. They made > me > angry when they put the house up for sale so soon after Jim died. I never > gave them my new address, they can e-mail me or text message me, but I > don't > want them to come visiting. I heard from them over the holidays on e-mail > and that was good enough. > > > > > > " I was thinking when this is over for a way to visit all of you - > wouldn't it be moving to see the faces that match your names on the > emails....sharing this with all of you is a savior to my bruised soul..... " > > > > > > Judy, I have met some of the group people. There are several in my area > where I live and we meet for coffee or lunch once in awhile. > > > Do you have any in your area to meet with? I also met some at the > Washington DC Conference for LBD several years ago. It was wonderful > meeting > the faces of the people that seem like family here. Every once in awhile > they do have group meetings or reunions in different states. They had one > in > Michigan a few years ago, and Sandie started the first one ever with this > group in the early 2000s or maybe even late 90s, I wasn't even in this > group > yet. If you hear of one that isn't too far for you to travel they are fun > to > go to and meet people from the group site. Every now and then someone will > decide to set it up in a state where they live or a state near them. I > didn't attend the one in Michigan, but they sent photos of it, and I talked > to all the gang on the phone. I wish I could have attended, but I had Jim > to > care for, it looked like fun. You can see the photos in the LBD album of > the > group get-togethers. Anyone that wants to set up a group > > > get-together can do it, but it's a lot of work. They need to get group > rates at a hotel and set everything up for the gathering, maybe some tours, > and make sure everyone gets the information, so there is a turn out of > people. If anyone is interested in doing something like that they are > welcome to it. There is no committee that does this on an annual basis, > it's > done by whoever wants to do it. The ones that have gone before and done it, > can help with info. on how to get it started I am sure. > > > > > > > > > > > > ________________________________ > > > From: Judy Strauss <jrstraussb@... <mailto:jrstraussb%40aol.com> > > > > To: " LBDcaregivers > <mailto:LBDcaregivers%40yahoogroups.com> " <LBDcaregivers > <mailto:LBDcaregivers%40yahoogroups.com> > > > > Sent: Saturday, January 14, 2012 11:25 AM > > > Subject: Re: Welcome New Members > > > > > > Hi Jan, > > > > > > It must have been such a shock to your system for Jim's kids to have > sold the house within months of his passing...,I vaguely remember your > writing about this last year here in the forum....do u have anything to do > with the kids anymore ? I would think it may be a comfort to be in touch > with someone who shares Jim's DNA....only that is of they are kind to you. > > > > > > I guess there is no use to sit and wonder why this is all > happening...and although i am not there yet I have no doubt in the truth > about not having your Loved one's presence anymore is mixed with the > emotion > that they are not suffering but you still miss them rings true for me.... > > > > > > I was thinking when this is over for a way to visit all of you - > wouldn't it be moving to see the faces that match your names on the > emails....sharing this with all of you is a savior to my bruised soul..... > > > > > > Jan, keep healing and thank you for staying here on the board to help > us > who are waking the road right behind you ....it's a noble deed and I hope > you get some solace in knowing that you are a great support.... > > > > > > Xoxox > > > > > > Judy > > > > > > Judy R Strauss, LMSW, PhD > > > Area Chair | College of Social Sciences > > > > > > University of Phoenix > > > Jersey City Campus | 100 Town Square Place | Suite 305 > > > Jersey City, NJ 07310 > > > Cell: > > > Email: Jrstr@... <mailto:Jrstr%40email.phoenix.edu> > > > > > > On Jan 14, 2012, at 1:46 PM, Janet Colello <janetcolello@... > <mailto:janetcolello%40yahoo.com> > wrote: > > > > > > > Hi Judy, > > > > It was odd not to see any posts here for a few days. I have been on > this site since 2003 and there are lulls, but there has never been a lull > where there is not one person here that I have seen. I'm so sorry to hear > about your emotional happenings. I too am experiencing a lot of tearful > moments that just seem to pop up out of nowhere. This coming week is the > year anniversary of Jim's passing. My birthday is on the 21st and Jim > passed > in the early morning of the 22nd. I prayed he would not pass on my > birthday. > Hospice said that was the day that they had determined he would go. In > Jim's > weak shape I know he did not know it was my birthday, but he managed to > hold > on one day and left me on the 22nd. I was numb the day he died, and things > moved so fast after his death, since he left the house in a Trust to his > kids. He lived in that house before we were married. His kids put the house > up for sale 2 months after he passed, and I had to pack and move out > > > > since the house sold fast. I had no time to go through Jim's things. > I > had to scale way down, since I moved to a much smaller place. I gave them > all to a church and they brought his equipment; wheelchair etc...... and > things all over the world and blessed the world with them. It lifted my > heart to hear that Jim still did so much for others when he was gone. > > > > Things moved so fast then there was barely time to grieve and I am > really feeling it this year without him. > > > > No matter how you cut it, Lewy is a horrible disease, their being is > there with you when they are living, but they are not the same person > > > > you knew and grieving starts then, but their presence means so much. > When they are gone you rejoice that they no longer suffer, but you miss > their presence. > > > > I hope you find some solace in this day that you are not alone. > > > > Jan Colello > > > > Husband, Jim, dx w/LBD 2003 > > > > Deceased, January 2011 > > > > > > > > ________________________________ > > > > From: Judy Strauss <jrstraussb@... <mailto:jrstraussb%40aol.com> > > > > > > To: " LBDcaregivers > <mailto:LBDcaregivers%40yahoogroups.com> " <LBDcaregivers > <mailto:LBDcaregivers%40yahoogroups.com> > > > > > Sent: Friday, January 13, 2012 6:05 PM > > > > Subject: Re: Welcome New Members > > > > > > > > Hi Jan, > > > > > > > > OMG - I was thinking the same thing Jan. I have been so down this > last > week- feeling scared and alone with my sadness about my mom. I drove to the > university last night for a workshop:training and cried the whole way down. > It takes me app 1 hour to get there. > > > > > > > > I suppose it's the beginning of a new year that is bringing me down > as > of late. I cling to my husband who is quite a bit older than me....all the > while scared of losing him too..... > > > > > > > > My mom has been unable to speak, walk, been incontinent and not > recognizing me for almost a year now... Do others here feel that after > going > through all these losses while their loved one is alive over the years they > decline prepare them for their eventual demise ?? > > > > > > > > Not seeing posts for several days made me recognize once more how > important you all are to me and my wellbeing. > > > > > > > > Thank you, > > > > > > > > Judy > > > > > > > > Judy R Strauss, LMSW, PhD > > > > Area Chair | College of Social Sciences > > > > > > > > University of Phoenix > > > > Jersey City Campus | 100 Town Square Place | Suite 305 > > > > Jersey City, NJ 07310 > > > > Cell: > > > > Email: Jrstr@... <mailto:Jrstr%40email.phoenix.edu> > > > > > > > > On Jan 13, 2012, at 8:39 PM, Janet Colello <janetcolello@... > <mailto:janetcolello%40yahoo.com> > wrote: > > > > > > > > > > > > > > > > > > > Where is everyone? For two days I have not one LBD Post. Am I not > getting them or is it a down time? > > > > > Jan Colello > > > > > > > > > > ________________________________ > > > > > From: <octoryrose@... <mailto: > octoryrose%40yahoo.com> > > > > > > > To: LBDcaregivers > <mailto:LBDcaregivers%40yahoogroups.com> > > > > > Sent: Thursday, January 12, 2012 3:17 AM > > > > > Subject: Welcome New Members > > > > > > > > > > I'm glad you found us. > > > > > > > > > > First & foremost: > > > > > > > > > > NO TRADITIONAL ANTIPSYCHOTICS (e.g. Haldol, Chlorpromazine), > > > > > NO ANTICHOLINERGIC DRUGS (e.g. Benadryl, Tylenol PM, Detrol, > Enablex) > > > > > > > > > > EXTREME CAUTION with MOST BENZODIAZEPINES (e.g. Ativan) > > > > > EXTREME CAUTION with some ATYPICAL ANTIPSYCHOTICS (e.g. > Risperidone, > Zyprexa) - but some are used w/ success (e.g. Seroquel, Clozaril) " Start > Low, Go Slow " > > > > > > > > > > Take a moment to post a possible med. before trying - this board > has > an archives section w/ tons & tons of warnings about meds that don't work > for those w/ LBD - they are extremely sensitive to meds! > > > > > > > > > > Read here: > > > > > Risperdal & Haldol > > > > > Message w/ collection of articles re: above > > > > > http://health.groups.yahoo.com/group/LBDcaregivers/message/70932 > > > > > > > > > > 2006, July 2 -- ADVERSE EFFECTS OF ANTIPSYCHOTICS ARE 'TIP OF THE > ICEBERG' > > > > > Letter to the Editor - by Louis R. Caplan, MD > > > > > http://health.groups.yahoo.com/group/LBDcaregivers/message/73781 > > > > > > > > > > Dementia With Lewy Bodies: A Review Of Clinical > > > > > Benzodiazepines (e.g. Ativan) may negatively affect cognition and > produce sedation, paradoxic agitation and increased risk of falls in the > elderly > > > > > http://tinyurl.com/2n54qj > > > > > > > > > > Why such strong feelings about benzos? > > > > > Message by , also includes info re: an exception to the no > benzo > warning, Klonopin, that has been used with success for RBD (REM Behavior > Disorder) by Dr. Boeve. > > > > > http://health.groups.yahoo.com/group/LBDcaregivers/message/61849 > > > > > > > > > > A Lewy Body patient > > > > > Lewy Body symptoms make my life one of constant frustration. > > > > > by Shirley Lay > > > > > http://www.care-givers.com/DBArticles/pages/viewarticle.php?id=730 > > > > > > > > > > Evaluating Meds > > > > > Advice from a PharmaD via Lin > > > > > http://health.groups.yahoo.com/group/LBDcaregivers/message/75551 > > > > > > > > > > Legal Stuff - get it done NOW > > > > > http://health.groups.yahoo.com/group/LBDcaregivers/files/ > > > > > scroll down to this document: > > > > > The Business of Dementia.doc > > > > > The 'legal' things you need to know about > > > > > > > > > > Top links to important LBD resources (IMHO) > > > > > > > > > > A Must Read by Dr. Bradley Boeve > > > > > A Comprehensive Approach to Treatment can Significantly Improve the > > > > > Quality of Life of Patients with the Lewy body dementias. > > > > > http://tinyurl.com/c2m5l6 > > > > > > > > > > Diagnostic Review & Medicine Management > > > > > by Bradley F. Boeve, MD (October 2004) Physicians guide to > diagnosing > > > > > and treating DLB/LBD. Includes recommended dosages. > > > > > http://tinyurl.com/bhppca > > > > > > > > > > An Introduction to Lewy Body Dementia - for newly diagnosed > patients > and their family > > > > > http://www.lbda.org/index.cfm?fuseaction=product.print > <http://www.lbda.org/index.cfm?fuseaction=product.print & product_id=10255> > & product_id=10255 > > > > > > > > > > *** 2006, September 08 -- Lewy body dementia > > > > > From MayoClinic.com, Special to CNN.com. Norma says, " ...this is > the > most detailed, accurate information I've ever read about LBD. I think it > should be sent to all new caregivers AND doctors who aren't clear. Thoughts > everyone? " Keli says, " Definately yes!!! This is very informative yet not > overwhelming. It can easily be shared with others. I intend to have my > husband and children read it, and hopefully my moms dr's as well. Very good > information. " > > > > > > > http://www.cnn.com/HEALTH/library/lewy-body-dementia/DS00795.html?iref=newss > earch > > > > > > > > > > LBD Brochure > > > > > (to print use legal size paper) > > > > > http://www.lbda.org/feature/1925/facts-about-lbd-brochure.htm > > > > > > > > > > " Difficulties in Diagnosing Lewy Body Dementia " > > > > > by T. MD > > > > > http://www.youtube.com/LBDAtv > > > > > > > > > > Live Chat Event with Gomperts, MD > > > > > Dr. Gomperts answered your questions in this Q & A session from March > 2007 > > > > > http://www.lbda.org/node/597 > > > > > > > > > > If your LO hasn't been diagnosed yet, make sure they get a FDG-PET > assessment. > > > > > http://interactive.snm.org/index.cfm?PageID=7405 > <http://interactive.snm.org/index.cfm?PageID=7405 & RPID=627> & RPID=627 > > > > > > > > > > And a summary of what's on this board: > > > > > Main board: > > > > > http://groups.yahoo.com/group/LBDcaregivers/ > > > > > (Read your emails via the board vs. your `in box'. And get into all > > > > > the different sections that are available on the website. Search > > > > > archived messages here.) > > > > > > > > > > Links Section: > > > > > http://health.groups.yahoo.com/group/LBDcaregivers/links > > > > > (Tons of links that is continuously a `work in progress' - all > these > > > > > links are useful to the caregiver. A variety of categories neatly > > > > > organized into folders - what topic are you interested in? Find the > > > > > folder and within it find numerous links to other websites for > > > > > additional information.) > > > > > > > > > > Files Section: > > > > > http://health.groups.yahoo.com/group/LBDcaregivers/files/ > > > > > (Read other caregiver's stories, read about the good & bad drugs > > > > > here, print a " companion card " from here (cards to hand out in > public > > > > > areas about your LO's behavior), find the locations of other > > > > > caregivers who are possibility living in your immediate area, FAQ > > > > > document, LBD Phases by LBD Caring Spouses, etc.) > > > > > > > > > > Database Section: > > > > > http://health.groups.yahoo.com/group/LBDcaregivers/database > > > > > (Suggested reading, learn the common denominators about our loved > > > > > ones, medical referrals, nursing home referrals, bibliography of > LBD > > > > > in literature and film, etc.) > > > > > > > > > > Photos Section: > > > > > http://health.ph.groups.yahoo.com/group/LBDcaregivers/photos > > > > > (Put a face to a name.) > > > > > > > > > > Polls Section: > > > > > http://health.groups.yahoo.com/group/LBDcaregivers/polls > > > > > (Several polls running re: LBD) > > > > > > > > > > ; 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. > > > > > > > > > > ------------------------------------ > > > > > > > > > > Welcome to LBDcaregivers. > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
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