Guest guest Posted July 19, 2003 Report Share Posted July 19, 2003 Dear Ann, I just joined LBD caregivers this week. I am new to the internet and support groups. (As a result of that, I hope I am reaponding to this correctly!) I think your idea of changing the process is a good one. I joined the Pick's Disease Support Group before I found LBD caregivers. The moderator of PDSG sent me an e-mail asking me to explain why I wanted to join the group. He also said the incidence of spam had been increasing and he was trying to limit it. After thinking about it, I was rather glad to be contacted by someone. For someone like me who is unfamiliar with support groups, it was actually kind of reassuring to know someone was actually listening. Just so you will know a little about me, my father was diagnosed with Dementia with Lewy Body three years ago. My mother and I care for him at home. I have never spoken with anyone who has dealt with this disease before so it has been really therapeutic to read the postings the last week. Thank you for all of your wonderful work for this group. Piper Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 19, 2003 Report Share Posted July 19, 2003 I'm sorry, but I believe that will turn alot of people away that need our help and support. I know ,I was at the point when I found this list, that if anyone asked me to write an explanation, (after trying to get doctors, etc. to listen to me), I would not have joined. Sorry, but that is my feelings. Beth L. PS. I know I seem to be " right out there " with how I feel about things lately. Please don't think of me as a harsh person. Actually, I am so sensitive at times, I feel that I'm going to break. > I'm giving some thought to changing the way we approve people for membership > on this list, and I thought I'd run this by all of you. (One reason is that > I've heard from other list owners that there's been an increase in spammers > joining lists, sending messages with links to porn sites, and then getting > off.) > > I'm considering sending a message asking everyone who wants to join the list > to send a brief email to me telling where they heard about the list and why > they want to join, and waiting to approve them until I get a reply. > Spammers, who join hundreds of lists at a time, won't bother to reply. > > What do you think? > > Ann Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 19, 2003 Report Share Posted July 19, 2003 I think this sounds like a good idea. I think I would explain to them exactly WHY not that we're discriminating but that all here do not have the time for spam which we are trying to control as well as we can better share knowing something of the persons situation. --- In LBDcaregivers , " Ann Hilgeman " <eahilg@s...> wrote: > I'm giving some thought to changing the way we approve people for membership > on this list, and I thought I'd run this by all of you. (One reason is that > I've heard from other list owners that there's been an increase in spammers > joining lists, sending messages with links to porn sites, and then getting > off.) > > I'm considering sending a message asking everyone who wants to join the list > to send a brief email to me telling where they heard about the list and why > they want to join, and waiting to approve them until I get a reply. > Spammers, who join hundreds of lists at a time, won't bother to reply. > > What do you think? > > Ann Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 19, 2003 Report Share Posted July 19, 2003 Ann, this sounds like an excellent idea. This will also help us to determine who knows about LBD and the support/information available to families. Thanks, Courage Changing the process >I'm giving some thought to changing the way we approve people for membership >on this list, and I thought I'd run this by all of you. (One reason is that >I've heard from other list owners that there's been an increase in spammers >joining lists, sending messages with links to porn sites, and then getting >off.) > >I'm considering sending a message asking everyone who wants to join the list >to send a brief email to me telling where they heard about the list and why >they want to join, and waiting to approve them until I get a reply. >Spammers, who join hundreds of lists at a time, won't bother to reply. > >What do you think? > >Ann > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 19, 2003 Report Share Posted July 19, 2003 Welcome aboard Piper. I hope that any questions you have are being answered here. This is also a very safe place to express your feelings...even the frustration and fear that goes with this disease. Courage Re: Changing the process >Dear Ann, > > >I just joined LBD caregivers this week. I am new to the internet and support >groups. (As a result of that, I hope I am reaponding to this correctly!) I >think your idea of changing the process is a good one. I joined the Pick's >Disease Support Group before I found LBD caregivers. The moderator of PDSG sent >me an e-mail asking me to explain why I wanted to join the group. He also >said the incidence of spam had been increasing and he was trying to limit it. > >After thinking about it, I was rather glad to be contacted by someone. For >someone like me who is unfamiliar with support groups, it was actually kind of >reassuring to know someone was actually listening. > >Just so you will know a little about me, my father was diagnosed with >Dementia with Lewy Body three years ago. My mother and I care for him at home. I >have never spoken with anyone who has dealt with this disease before so it has >been really therapeutic to read the postings the last week. > >Thank you for all of your wonderful work for this group. > >Piper > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 20, 2003 Report Share Posted July 20, 2003 Welcome Piper. Hope the group can support you and your Mom as caregivers. You are ahead of the game already. You have a diagnosis of LBD. I never did and my Mom passed away in Oct, '02 after 3 years with me and a year in the nh. Donna Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 20, 2003 Report Share Posted July 20, 2003 Dear Stella, I am the one in the group. who depending on how long you have been the site, you may have realised keeps on harping on to this group to seriously take as look at whether adding glycoutrients to the diets of those suffering with LBD may or may not help. I am sorry to pounce on you immediately but the reason is that this week there are a series of talks held by a Dr Fouts in NZ ( as below) If you could manage to go and (maybe convince to go) you may find it very interesting. The first hour is probably enough and should be free. Hope you can make it. It would shut me up if you wrote back to everyone on the site that it was a waste of time, but I am 100 % sure that you wont after you have heard Dr Fouts. Kindest regards Ilse Meeting: Millennium Christchurch CHRISTCHURCH – Friday 25 July 2003 Time: 7.00 pm to 10.00 pm Meeting: Millennium Christchurch Address: 14 Cathedral Square, Time: 7.00 pm to 10.00 pm Christchurch Address: 14 Cathedral Square, Christchurch WELLINGTON – Monday 28 July 2003 Meeting: Duxton Hotel Wellington Time: 7.00 pm to 10.00 pm Address: 170 Wakefield Street, Wellington AUCKLAND – Tuesday 29 July 2003 Meeting: Crowne Plaza Auckland Time: 7.00 p.m. to 10.00 p.m. Address: 128 Albert Street, Auckland Begin forwarded message: > > Date: Mon Jul 21, 2003 3:25:11 PM Australia/Melbourne > To: <LBDcaregivers > > Subject: Re: Re: Changing the process > Reply-To: LBDcaregivers > > Hi > I am the daughter of a mother in New Zealand who has been dia with > LBD, in > fact I know in Wanganui and he very kindly gave me this site > which I > have followed but not written to before. We my husband and I are > owners of a busy business, 7 days 14 hours a day, 10 staff, and 2 > children. > Life is extremely hectic and > has been turned upside down in a matter of 6 months, > with parents who are now a major priority. > Father is a dear and almost 80, never been sick and mother who is at > present > residing in a rest home 3 kms > away from her home of 46 years, due to the fact that > Dad would not be alive if she were not in a home, due to her failing > health. > Mother is fine, apart from we as her family having to come to terms > with an > illness that I was sure I knew what it was long before the Drs were > able to > dia it. A family of 5 children with lots of dimentions, some > who are able to be there on the spot and others who > due to location have been able to provide the > moral daily support by way of any means possible, eg > parcels of food, phone calls, and the orgainisation of > services that make life easier for them both, esp dad. > I am amazed at the progression of this disease and > also the management of drugs, which were originally > handled by our GP, then by way of determined > requests for a second opinion we have been so > fortunate to have the services of the same specialists > as in Wanganui, 30kms from my mothers > home. Few Drs are aware of LBD, and even fewer > prepared to dia it.My mother like s is fortunate that they have > medical care which is close and immediate. > I through the group identify with many of you the > process of LBD and every day is different. As is > the case mother is absolutely fine, those that are > the caregivers, such as my dear dad are the ones that > we need to turn our attention to first. > Th e reason I have e-mailed tonight is that for many weeks I have just > read > and digested the many scripts, and have felt that some time I would > write, > but when I felt > comfortable, dont discourage those that are not as > forward as I by judging whether they should be > part of the group. Everyone has needs, I am one that > copes and have done so with many things in the progression of our > lives, > mole hills become ant hills, others > arnt as confident or forward as I am and to prevent what > sometimes is the only lifeline such as a group like this, is > enough to push them off the cliff. What I am saying is > that I was one that was behind the curtain but have > come out to ensure not that my needs are cared for, > but that lots of others, who would never stand up and be counted > shouldnt be > questioned about their right to > what is sometimes the only group of people who actually > understand what they are enduring as caregivers of LBD > family sufferers. > Kindest regards stella, Hi ! > Re: Changing the process > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 20, 2003 Report Share Posted July 20, 2003 Hello Stella, And aren't you the " lucky one " , knowing ! He seems like a very sweet,caring man. I thank you for expressing your thoughts about this also. I thought that I had lost my mind AGAIN!! And I'm thankful that you have a caring family to support each other. Beth L. > > > I'm giving some thought to changing the way we approve people for > > membership > > > on this list, and I thought I'd run this by all of you. (One > > reason is that > > > I've heard from other list owners that there's been an increase in > > spammers > > > joining lists, sending messages with links to porn sites, and then > > getting > > > off.) > > > > > > I'm considering sending a message asking everyone who wants to > > join the list > > > to send a brief email to me telling where they heard about the > > list and why > > > they want to join, and waiting to approve them until I get a reply. > > > Spammers, who join hundreds of lists at a time, won't bother to > > reply. > > > > > > What do you think? > > > > > > Ann > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 22, 2003 Report Share Posted July 22, 2003 , I wish I could meet with you all at La Crosse, but have no one to stay with mom for that long, and that far away form home. My mom would worry herself to pieces, and my daughters(they keep an eye out if we go for a weekend close to home), would do the same. But, my thoughts and prayers will be with you all. I hope you are able to share and gather all sorts of information. And lots and lots and lots of huggggs. Beth L. PS. And yes, you do deserve the compliments. Anyone who has given up a time in their lives to care for a LO, desreves to be recongnized for it! If I wasn't married........how far is England from Ohio?? ha ha ha ha! > Beth L and Sandie > > I wanted to thank you both for the kind words. I feel as if I don't deserve them, only doing what I can. I feel each person in this group deserves a medal. Hope to catch up with as many of you as are at La Crosse. Will be travelling with Sandie there. > > > Re: Re: Changing the process > > > Stella > Thank you for posting, and for introducing yourself. I am sure you will > find support in the group as well as answers to questions. Please post > anytime, for anything. I am so pleased that you know , so that > both of you have someone near if you need to talk, and/or meet. Hoping > to see more posts from you soon. > I shall add you to my prayers. > Hugs from Des Moines, Iowa - USA > Sandie > > > Quote Link to comment Share on other sites More sharing options...
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