Guest guest Posted March 31, 2004 Report Share Posted March 31, 2004 Dear Lucy: Welcome to this site. We are here to give you support and information. Please tell us about your loved one with LBD, the symtoms that are present and how you are coping. I will add you and your family to my LBD prayers, God bless you, hugs, Josie Miami, Florida, U.S.A. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 31, 2004 Report Share Posted March 31, 2004 Hello everybody and nice to join you. All the best Lucy (italy) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 1, 2004 Report Share Posted April 1, 2004 Hi Josie, thanks to contact me. I AM REAL and I am from Italy, so sometimes I have some probles of language, expecially when you write down abbreviations like pg, mi etc. Anyhow I am sure you can help me on the run! Unfortunately I am here for bad problems in my family: my Mom (77 in May) has LBD, very hardly diagnosticated late last year. At the moment she can not speak, not walk, not eat alone and sleeps almost all the time. I really really sad, as you can imagine as I live far from her and I miss a lot her voice by phone. In the past decade there wre only some ciao and simplest sentence but now she has fallen in silence that probably is out of code in this illness. Can you help me in explaining? Can I do something? I miss my Mom a lot. All my love Lucy On Wed, 31 Mar 2004 08:29:17 EST regattabh@... wrote: Luciana Mirenghi Luciana Mirenghi Luciana Mirenghi Luciana Mirenghi Luciana MirenghiDear Lucy: Luciana Mirenghi Luciana MirenghiWelcome to this site. & nbsp; We are here to Luciana Mirenghigive you support and information. & nbsp; Luciana MirenghiPlease tell us about your loved one with Luciana MirenghiLBD, the symtoms that are present and how Luciana Mirenghiyou are coping. & nbsp; I will add you and Luciana Mirenghiyour family to my LBD prayers, God bless Luciana Mirenghiyou, hugs, Luciana Mirenghi Luciana MirenghiJosie Luciana MirenghiMiami, Florida, U.S.A. Luciana Mirenghi Luciana Mirenghi Luciana Mirenghi[Non-text portions of this message have Luciana Mirenghibeen removed] Luciana Mirenghi Luciana Mirenghi Luciana Mirenghi Luciana Mirenghi Luciana Mirenghi Luciana MirenghiWelcome to LBDcaregivers. & nbsp; & nbsp; Luciana Mirenghi Luciana Mirenghi Luciana Mirenghi Luciana Mirenghi Luciana Mirenghi Luciana Mirenghi Luciana Mirenghi Luciana Mirenghi Luciana Mirenghi Luciana Mirenghi Luciana Mirenghi Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 1, 2004 Report Share Posted April 1, 2004 Welcome Lucy, Sorry that you and your family have been stricken by this disease. M > >Reply-To: LBDcaregivers >To: LBDcaregivers >Subject: new subscription >Date: Wed, 31 Mar 2004 15:05:32 +0200 >MIME-Version: 1.0 >X-Sender: luciana.mirenghi@... >Received: from n24.grp.scd.yahoo.com ([66.218.66.80]) by >mc12-f42.hotmail.com with Microsoft SMTPSVC(5.0.2195.6824); Wed, 31 Mar >2004 05:08:06 -0800 >Received: from [66.218.67.195] by n24.grp.scd.yahoo.com with NNFMP; 31 Mar >2004 13:04:50 -0000 >Received: (qmail 8863 invoked from network); 31 Mar 2004 13:04:45 -0000 >Received: from unknown (66.218.66.217) by m2.grp.scd.yahoo.com with QMQP; >31 Mar 2004 13:04:45 -0000 >Received: from unknown (HELO brindisi.enea.it) (192.107.88.253) by >mta2.grp.scd.yahoo.com with SMTP; 31 Mar 2004 13:04:45 -0000 >Received: from [192.107.88.162] (account luciana.mirenghi@...) > by brindisi.enea.it (CommuniGate Pro WebUser 4.1.8) with HTTP id 1952634 >for LBDcaregiversegroups; Wed, 31 Mar 2004 15:05:32 +0200 >X-Message-Info: JGTYoYF78jGbbLsJ1Ctaw7EWb+qJwEG6 >X-eGroups-Return: >sentto-2141318-27749-1080738289-cat86443=hotmail.com@... >X-Apparently-To: LBDcaregiversegroups >X-Mailer: CommuniGate Pro WebUser Interface v.4.1.8 >Message-ID: >X-eGroups-Remote-IP: 192.107.88.253 >X-Yahoo-Profile: lucymirenghi >Mailing-List: list LBDcaregivers ; contact >LBDcaregivers-owner >Delivered-To: mailing list LBDcaregivers >Precedence: bulk >List-Unsubscribe: <mailto:LBDcaregivers-unsubscribe > >Return-Path: >sentto-2141318-27749-1080738289-cat86443=hotmail.com@... >X-OriginalArrivalTime: 31 Mar 2004 13:08:06.0500 (UTC) >FILETIME=[3512CA40:01C41721] > >Hello everybody and nice to join you. >All the best >Lucy (italy) _________________________________________________________________ Is your PC infected? Get a FREE online computer virus scan from McAfee® Security. http://clinic.mcafee.com/clinic/ibuy/campaign.asp?cid=3963 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 5, 2004 Report Share Posted April 5, 2004 Dear Lucy: I think they can hear and understand everything. My father was physically very well, he tried to speak to us, but the words would not come. He became very, very frustrated. If we tried to guess, we were usually wrong because he wanted to talk about something else than what was happening. He got angry with himself. I feel like it is the mind trapped inside the body. They do reason when they are not having a dementia attack. Ironically, when they are having dementia, they can talk and insult everyone. I think they can reason, not in an elementary way, but as their mature selves. sometimes the DRs say that to make the family feel better and to hide the fact that they cannot do anything about it. You can do something. You and your family can talk to your mom as always. You can tell her what is happening in your lives outside of the hospital. You can tell her about your hopes and dreams and make her feel that your lives will go on and now you can take care of things. Tell her you love her on the phone. She may be wondering where you are. Have someone put the phone to her and you say hello and tell her about your life. I send you my support. Love, Josie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 5, 2004 Report Share Posted April 5, 2004 Josie, thanks for the message. I can write to all of you, meanwhile working. It is not nice, but the only way to communicate with you. I decided to join the group as I felt this kind of illness frighten too much and I was starting to feel rather alone, with a bigget " hole " since three weeks ago when Mom stopped speaking at the phone. I am living far from her, and my original family as I work and I am married here 100 km far. So the phone was very important to " feel " her. I can hardly believe that she cannot say a " yes " or a sound anymore. I am sure she can ear, in fact at first I was speaking with her without any answer, but maybe it was helping only myself to " denie " what was happening. Now I am aware she is quickly going down. Since last year, she has lot a lot and bocomed passive at all. How much does it last? I have an older sister and we both are asking if she suffers inside eventhough we can not see any sigh on her face. The doctor says she forgets as easily she can feels elementary things. But I am not sure. The last time I was to her when I told her I was going with my familiy she started to cry in a strange way. It was really breaking my heart as this confirms that all LBD people can feel exactly as we do. Probably there is, in some cases, no strenght to speach or to move eyes and face. But I believe they all can feel and not in a elementary way. What's your opinion? Love to you and everybody Lucy On Wed, 31 Mar 2004 08:29:17 EST regattabh@... wrote: Luciana Mirenghi Luciana Mirenghi Luciana Mirenghi Luciana Mirenghi Luciana MirenghiDear Lucy: Luciana Mirenghi Luciana MirenghiWelcome to this site. & nbsp; We are here to Luciana Mirenghigive you support and information. & nbsp; Luciana MirenghiPlease tell us about your loved one with Luciana MirenghiLBD, the symtoms that are present and how Luciana Mirenghiyou are coping. & nbsp; I will add you and Luciana Mirenghiyour family to my LBD prayers, God bless Luciana Mirenghiyou, hugs, Luciana Mirenghi Luciana MirenghiJosie Luciana MirenghiMiami, Florida, U.S.A. Luciana Mirenghi Luciana Mirenghi Luciana Mirenghi[Non-text portions of this message have Luciana Mirenghibeen removed] Luciana Mirenghi Luciana Mirenghi Luciana Mirenghi Luciana Mirenghi Luciana Mirenghi Luciana MirenghiWelcome to LBDcaregivers. & nbsp; & nbsp; Luciana Mirenghi Luciana Mirenghi Luciana Mirenghi Luciana Mirenghi Luciana Mirenghi Luciana Mirenghi Luciana Mirenghi Luciana Mirenghi Luciana Mirenghi Luciana Mirenghi Luciana Mirenghi Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 5, 2004 Report Share Posted April 5, 2004 Dear Lucy I am glad you 'found' this group. This terrible disease can make you feel very isolated and depressed. That's why we're here - to give you the support you need. You ask if LBD sufferers have deep feelings and recognise what is happening to them? My answer is 'yes' - sadly they do know and can feel very afraid and depressed. My dad died 21st Oct 2002. He was 67 years of age. I think he had LBD for about 7-9 years overall, but had it much worse in the final 2 years. He would get VERY distressed about the way he looked, what he couldn't do, how he felt. He knew that something was terribly wrong even though he couldn't explain it. He would get paranoid, extremely fearful and very depressed. Unlike dementia such as Alzheimer's - there is no escape. LBD patients don't retreat into make-believe, fantasy world of blissful delusion. I believe that LBD patients have a dreadful premonition of impending disaster - they know something bad is happening and that it's out of their control. THAT'S why proper nursing care is so critical- these poor souls need immeasurable care, love, understanding and reassurance. That's also why this bastard is so hard to watch as it destroys their lives...you feel so helpless and overwhelmed! BUT you sound like you are doing a great job. You are aware that your mum is very sensitive and vulnerable- so you can respond with the appropriate kindness and gentleness. In my opinion the doctor was wrong - LBD people do NOT forget as easily as they feel. That's rubbish! They may forget some things but my dad was totally aware of the misery of his condition. Maybe he said that to make you feel better? LBD is a heartbreaker - that's the cruel truth as so many here can testify. Sorry if that is blunt but I think you have better insight and understanding than that doctor! Love to you too Sally (UK)x Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 5, 2004 Report Share Posted April 5, 2004 Lucy, Please accept my warm welcome to the group although it may be a little late. How brave you are to write in a language which is not your own but if I must say so, you are doing a great job. Please know that no matter how you write, the folks here somehow know what is in the heart. Together we do what we are unable to do alone. Hugs, Betty > Hello everybody and nice to join you. > All the best > Lucy (italy) Quote Link to comment Share on other sites More sharing options...
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