Guest guest Posted December 29, 2011 Report Share Posted December 29, 2011 We have all fought the good fight with Lewy, and while our LO's show some temporary lightening of the symptoms, eventually we all come to the realization that we can go the distance with Lewy, but he wins in the end. Until medical research comes up with something, there are only meds that help for awhile. None of us have laid down and just given up...we have all fought. But keep your hope...and keep your fight. It will help you to know that you have done everything possible for your LO. Nan > > Dear people, > > I deeply commiserate with all on the list who lost their loved ones, but > where are the messages about trying to improve? Or do you feel this is all > about deterioration and praying much (I'm an atheist). > > Olga > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 30, 2011 Report Share Posted December 30, 2011 There has, unfortunately, been a lot of loss lately. And holiday seasons, especially the December holidays, seem to bring more than other times and, for those whose loss was a while back, make their loss particularly fresh. I, too, offer my condolences to all who have lost loved ones. Regardless of how much we want to ease our loved ones' pain and let them go, it is still very difficult to lose someone. Many of our correspondents find comfort in their faith, any faith. They wish to offer comfort in the way that is most familiar and helpful to them - through thoughts and prayers. I invite anyone who does not wish to be prayed for to state so when it is their turn to notify others of their own loss. Yet, I believe that the kind and gracious thing to do is to thank others for their prayers, concern, thoughts or whatever you want to call their expression of sympathy. I have yet to see a question asked or concern raised that hasn't prompted the advice and/or sharing of another's experience. I'm not all that sure this is listserv is about trying to improve so much as it is about helping each other through this experience in any way we can. If someone does have a question or concern, I hope that they are comfortable raising it, as I am sure there will be an appropriate response. Perhaps the lack of other subject matter is a reflection of a temporary lessening of need in that area, just as much as the increase in expressed sympathy may be a response to the increase in loss or the feeling of loss. Yes, I have noticed that emails seem to weigh heavily in the expression of loss or sympathy lately. But if one wants to change the subject matter, one should raise other issues or concerns. If you don't like the conversation, change the subject. Neither am I the most religious person in the world. But time has taught me that a thought can be a prayer and a prayer can be a thought. Raging at God can be just as much of a prayer as pleading with God, or offering " Thy will be done. " For past losses and for the one to come, I am grateful for all expressions of concern, sympathy, empathy or whatever else, no matter how it is expressed. It is ungracious to complain of the frequency or manner of these expressions. Kathy On Thu, Dec 29, 2011 at 6:19 PM, Olga Shaumyan wrote: > ** > > > Dear people, > > I deeply commiserate with all on the list who lost their loved ones, but > where are the messages about trying to improve? Or do you feel this is all > about deterioration and praying much (I'm an atheist). > > Olga > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 30, 2011 Report Share Posted December 30, 2011 Very well written Kathy. I second what you wrote. I have family that doesn't pray but says wishes which I support. Whatever the wording, whatever the thought I believe it's nice having support from others. Sandie Des Moines, IA dad, Merle, passed from LBD 9-20-02, age 65 ----- Re: this list Date: Fri, 30 Dec 2011 07:11:32 -0600 There has, unfortunately, been a lot of loss lately. And holiday seasons, especially the December holidays, seem to bring more than other times and, for those whose loss was a while back, make their loss particularly fresh. I, too, offer my condolences to all who have lost loved ones. Regardless of how much we want to ease our loved ones' pain and let them go, it is still very difficult to lose someone. Many of our correspondents find comfort in their faith, any faith. They wish to offer comfort in the way that is most familiar and helpful to them - through thoughts and prayers. I invite anyone who does not wish to be prayed for to state so when it is their turn to notify others of their own loss. Yet, I believe that the kind and gracious thing to do is to thank others for their prayers, concern, thoughts or whatever you want to call their expression of sympathy. I have yet to see a question asked or concern raised that hasn't prompted the advice and/or sharing of another's experience. I'm not all that sure this is listserv is about trying to improve so much as it is about helping each other through this experience in any way we can. If someone does have a question or concern, I hope that they are comfortable raising it, as I am sure there will be an appropriate response. Perhaps the lack of other subject matter is a reflection of a temporary lessening of need in that area, just as much as the increase in expressed sympathy may be a response to the increase in loss or the feeling of loss. Yes, I have noticed that emails seem to weigh heavily in the expression of loss or sympathy lately. But if one wants to change the subject matter, one should raise other issues or concerns. If you don't like the conversation, change the subject. Neither am I the most religious person in the world. But time has taught me that a thought can be a prayer and a prayer can be a thought. Raging at God can be just as much of a prayer as pleading with God, or offering " Thy will be done. " For past losses and for the one to come, I am grateful for all expressions of concern, sympathy, empathy or whatever else, no matter how it is expressed. It is ungracious to complain of the frequency or manner of these expressions. Kathy On Thu, Dec 29, 2011 at 6:19 PM, Olga Shaumyan wrote: > ** > > > Dear people, > > I deeply commiserate with all on the list who lost their loved ones, but > where are the messages about trying to improve? Or do you feel this is all > about deterioration and praying much (I'm an atheist). > > Olga > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 30, 2011 Report Share Posted December 30, 2011 Olga, This list is about many things--sharing of comfort, support, advice, information...I could go on. Personally, this list has been a lifelline. When my mom was diagnosed, I was floundering and hopeless. Connecting with the people here helped me to come back from that. I have learned a great deal about Lewy Body Disease from this group which has helped my understanding regarding what my mom is experiencing. I don't know how long you have been part of this group, but I'm sure you will find much help here if you give it a chance. If you have specific concerns or questions, feel free to post them. I have also benefited by looking through the files section and searching subject matter in older posts. With regard to current postings, there seems to be cycles; periods in which many questions are asked and information shared and other periods in which things are quiet. As to sending condolences and offering prayer...many find this comforting, both the giver and the receiver. If this is offensive to you, don't read those posts. There is not one person, I'm sure, who wishes to offend. We hope you stay with us, Olga. There is much to give and receive through this group. Katy; daughter to Jill, age 72; dx 2008 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 30, 2011 Report Share Posted December 30, 2011 Olga, You wrote, " where are the messages about trying to improve? " Perhaps your LO is only recently diagnosed with LBD and you are unaware that it is an incurable, progressively deteriorating disease. The medications used are not an exact science and work differently on different people, most are only effective for a few months of holding back the disease process, not years. There can be no lasting " improvement " at this time. It is all downhill and you need to be prepared for the downward spiral. This group provides information and moral/emotional support for the caregivers dealing with the inevitable decline. Best Wishes, Pat M. 58, Wife/caregiver of Bob, 75, dx PD 2003, LBD 2009 > ** > > > Very well written Kathy. I second what you wrote. I have family that > doesn't pray but says wishes which I support. Whatever the wording, > whatever the thought I believe it's nice having support from others. Sandie > Des Moines, IA dad, Merle, passed from LBD 9-20-02, age 65 > > > ----- Re: this list > Date: Fri, 30 Dec 2011 07:11:32 -0600 > > There has, unfortunately, been a lot of loss lately. And holiday seasons, > especially the December holidays, seem to bring more than other times and, > for those whose loss was a while back, make their loss particularly fresh. > I, too, offer my condolences to all who have lost loved ones. Regardless > of how much we want to ease our loved ones' pain and let them go, it is > still very difficult to lose someone. > > Many of our correspondents find comfort in their faith, any faith. They > wish to offer comfort in the way that is most familiar and helpful to them > - through thoughts and prayers. I invite anyone who does not wish to be > prayed for to state so when it is their turn to notify others of their own > loss. Yet, I believe that the kind and gracious thing to do is to thank > others for their prayers, concern, thoughts or whatever you want to call > their expression of sympathy. > > I have yet to see a question asked or concern raised that hasn't prompted > the advice and/or sharing of another's experience. I'm not all that sure > this is listserv is about trying to improve so much as it is about helping > each other through this experience in any way we can. If someone does have > a question or concern, I hope that they are comfortable raising it, as I am > sure there will be an appropriate response. Perhaps the lack of other > subject matter is a reflection of a temporary lessening of need in that > area, just as much as the increase in expressed sympathy may be a response > to the increase in loss or the feeling of loss. > > Yes, I have noticed that emails seem to weigh heavily in the expression of > loss or sympathy lately. But if one wants to change the subject matter, > one should raise other issues or concerns. If you don't like the > conversation, change the subject. > > Neither am I the most religious person in the world. But time has taught > me that a thought can be a prayer and a prayer can be a thought. Raging at > God can be just as much of a prayer as pleading with God, or offering " Thy > will be done. " For past losses and for the one to come, I am grateful for > all expressions of concern, sympathy, empathy or whatever else, no matter > how it is expressed. It is ungracious to complain of the frequency or > manner of these expressions. > > Kathy > > On Thu, Dec 29, 2011 at 6:19 PM, Olga Shaumyan <olga.shaumyan@... > >wrote: > > > ** > > > > > > Dear people, > > > > I deeply commiserate with all on the list who lost their loved ones, but > > where are the messages about trying to improve? Or do you feel this is > all > > about deterioration and praying much (I'm an atheist). > > > > Olga > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 30, 2011 Report Share Posted December 30, 2011 Dear Sandie, As usual, beautifully said! Helene in NY > > > ** > > > > > > Dear people, > > > > I deeply commiserate with all on the list who lost their loved ones, but > > where are the messages about trying to improve? Or do you feel this is all > > about deterioration and praying much (I'm an atheist). > > > > Olga > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 4, 2012 Report Share Posted January 4, 2012 Dear Vivian, Great attitude. Admire your courage and optimism. Myself, I'm not managing so well. My husband doesn't want to walk... for no reason... out of the blue. When he wandered off plenty before. The bedroom involves stairs, the bathroom involves stairs, the bath involves climbing into it. He's no baby, he's heavy. We live in a rented accommodation. I can perhaps ship him off to a home (how much? plus his family are stalling for incomprehensible reasons), in which case I cannot remain in ours (too expensive). I'm now more or less running out of excuses to send him to hospital. Before I could say he used to be mobile but it's now over 2 months that by the end of the week he lies down in the bed and refuses to do anything. And any disturbance is met with hostility. And I very much doubt he knows who I am. I'm often " the nasty boy " . It's an unfortunate combination of some unfunny charade against the background of poor financial planning. So, yes, I'm mightily discouraged and depressed, but I am trying to find some type of solution. I actually do not think the way things are, they benefit either me or (my husband). I would still insist that prayers are great but practical advice/experience is better. And I don't know how mature I am, is the second demented person in my life, but I certainly dislike being that uncertain (especially on behalf of another human being), whoever Finley is. Olga > > > > > >> > > > > > >> Dear people, > > > > > >> > > > > > >> I deeply commiserate with all on the list who lost their loved ones, but > > > > > >> where are the messages about trying to improve? Or do you feel this is > > all > > > > > >> about deterioration and praying much (I'm an atheist). > > > > > >> > > > > > >> Olga > > > > > >> > > > > > >> > > > > > >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 7, 2012 Report Share Posted January 7, 2012 Thank you, Vivian. Keep your spirit up. I'll see what I can do about mine. Olga. > > > > > > > > > >> > > > > > > > > > >> Dear people, > > > > > > > > > >> > > > > > > > > > >> I deeply commiserate with all on the list who lost their loved > > ones, but > > > > > > > > > >> where are the messages about trying to improve? Or do you feel this > > is > > > > all > > > > > > > > > >> about deterioration and praying much (I'm an atheist). > > > > > > > > > >> > > > > > > > > > >> Olga > > > > > > > > > >> > > > > > > > > > >> > > > > > > > > > >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 9, 2012 Report Share Posted January 9, 2012 Janet - you're referring to the Lewy Body Society in the UK -- their website is this: http://www.lewybody.co.uk/ > > >> > > > > > >> > > >> > > >> > > > > > >> > > >> Dear people, > > >> > > > > > >> > > >> > > >> > > > > > >> > > >> I deeply commiserate with all on the list who lost their loved > > >> ones, but > > >> > > > > > >> > > >> where are the messages about trying to improve? Or do you feel > > this > > >> is > > >> > > all > > >> > > > > > >> > > >> about deterioration and praying much (I'm an atheist). > > >> > > > > > >> > > >> > > >> > > > > > >> > > >> Olga > > >> > > > > > >> > > >> > > >> > > > > > >> > > >> > > >> > > > > > >> > > >> Quote Link to comment Share on other sites More sharing options...
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