Guest guest Posted September 24, 2001 Report Share Posted September 24, 2001 Hello Everyone, Angie started this group a while back for the purpose of learning more about RP and supporting each other through encouragement and support in any way we could find to do so. We've had several discussion in the past on this very subject and tried so many things to help everyone, but it always ends up going back to the way it is now and the way it was then, for that matter. I will say that Roy and I are talking about a group that Lyle (God rest his soul), started a long time ago for just the medical part of RP. No chit chat, no jokes, no hugs and prayers for anyone, just medical info on RP. We were talking about deleting it, but now, we are talking about maybe keeping it going just for people who don't want anything else but medical info on RP. A tribute to Lyle, if you will. I will let Roy explain all about this group to everyone. I do want to stress again that we have tried several things in the past and they work for a week or two, but then go back to how it was originally when the group was started. There are alternatives. Digest, where you only get one or two posts daily with all the posts in one email, or no mail, like Connie suggested, and you can pick and chose the posts, which is also an excellent suggestion. Our group will stay the way it is. I'm very sorry everyone isn't happy with this, but we just can't please everyone. The only suggestions that I want to stress is: Please remember to change the subject line when you post. Especially on Digest. Digest # 1234, doesn't tell us a thing about what the post is about. Also, please make sure to just copy and paste a snippet of the previous post you are responding to. Not the whole email, and the one following that one, and the one following that one.......etc...... That is very frustrating for people, especially people on digest. I am as guilty of doing these things as anybody. Other than that, I have only the suggestion about the PolyMed group I was previously talking about that Roy is considering continuing. It could be the answer for everyone, I hope. We sure don't want to lose anyone, but there is no solution that will please everyone either. This group is full of medical info, but so much more than that. We are full of love for each other and that is just as important as the medical side of RP. Again, if you're looking for just the medical facts of RP, talk to Roy at: Rlr1999@... I hope this helps everyone understand this group better and I really hope we can all stick together and find a way to resolve this issue. Thank you everyone, W Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 24, 2001 Report Share Posted September 24, 2001 Hello Everyone, Angie started this group a while back for the purpose of learning more about RP and supporting each other through encouragement and support in any way we could find to do so. We've had several discussion in the past on this very subject and tried so many things to help everyone, but it always ends up going back to the way it is now and the way it was then, for that matter. I will say that Roy and I are talking about a group that Lyle (God rest his soul), started a long time ago for just the medical part of RP. No chit chat, no jokes, no hugs and prayers for anyone, just medical info on RP. We were talking about deleting it, but now, we are talking about maybe keeping it going just for people who don't want anything else but medical info on RP. A tribute to Lyle, if you will. I will let Roy explain all about this group to everyone. I do want to stress again that we have tried several things in the past and they work for a week or two, but then go back to how it was originally when the group was started. There are alternatives. Digest, where you only get one or two posts daily with all the posts in one email, or no mail, like Connie suggested, and you can pick and chose the posts, which is also an excellent suggestion. Our group will stay the way it is. I'm very sorry everyone isn't happy with this, but we just can't please everyone. The only suggestions that I want to stress is: Please remember to change the subject line when you post. Especially on Digest. Digest # 1234, doesn't tell us a thing about what the post is about. Also, please make sure to just copy and paste a snippet of the previous post you are responding to. Not the whole email, and the one following that one, and the one following that one.......etc...... That is very frustrating for people, especially people on digest. I am as guilty of doing these things as anybody. Other than that, I have only the suggestion about the PolyMed group I was previously talking about that Roy is considering continuing. It could be the answer for everyone, I hope. We sure don't want to lose anyone, but there is no solution that will please everyone either. This group is full of medical info, but so much more than that. We are full of love for each other and that is just as important as the medical side of RP. Again, if you're looking for just the medical facts of RP, talk to Roy at: Rlr1999@... I hope this helps everyone understand this group better and I really hope we can all stick together and find a way to resolve this issue. Thank you everyone, W Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 24, 2001 Report Share Posted September 24, 2001 Hi , Maybe the foundation email group could be used for medical only stuff. Just a thought as not too many people use it. Elaine The RP Support Group Hello Everyone, Angie started this group a while back for the purpose of learning more about RP and supporting each other through encouragement and support in any way we could find to do so. We've had several discussion in the past on this very subject and tried so many things to help everyone, but it always ends up going back to the way it is now and the way it was then, for that matter. I will say that Roy and I are talking about a group that Lyle (God rest his soul), started a long time ago for just the medical part of RP. No chit chat, no jokes, no hugs and prayers for anyone, just medical info on RP. We were talking about deleting it, but now, we are talking about maybe keeping it going just for people who don't want anything else but medical info on RP. A tribute to Lyle, if you will. I will let Roy explain all about this group to everyone. I do want to stress again that we have tried several things in the past and they work for a week or two, but then go back to how it was originally when the group was started. There are alternatives. Digest, where you only get one or two posts daily with all the posts in one email, or no mail, like Connie suggested, and you can pick and chose the posts, which is also an excellent suggestion. Our group will stay the way it is. I'm very sorry everyone isn't happy with this, but we just can't please everyone. The only suggestions that I want to stress is: Please remember to change the subject line when you post. Especially on Digest. Digest # 1234, doesn't tell us a thing about what the post is about. Also, please make sure to just copy and paste a snippet of the previous post you are responding to. Not the whole email, and the one following that one, and the one following that one.......etc...... That is very frustrating for people, especially people on digest. I am as guilty of doing these things as anybody. Other than that, I have only the suggestion about the PolyMed group I was previously talking about that Roy is considering continuing. It could be the answer for everyone, I hope. We sure don't want to lose anyone, but there is no solution that will please everyone either. This group is full of medical info, but so much more than that. We are full of love for each other and that is just as important as the medical side of RP. Again, if you're looking for just the medical facts of RP, talk to Roy at: Rlr1999@... I hope this helps everyone understand this group better and I really hope we can all stick together and find a way to resolve this issue. Thank you everyone, W DISCLAIMER!!WE ARE NOT MEDICAL PROFESSIONALS, THEREFORE ANY INFORMATION THAT IS RECEIVED HERE IS FROM EXPERIENCE ONLY. PLEASE CONSULT WITH YOUR DOCTOR BEFORE TRYING ANYTHING THAT IS SUGGESTED. WE ARE NOT A SUBSTITUTE FOR YOUR PHYSICIAN AND ARE NOT TRYING TO BE. REMEMBER EVERYONE IS DIFFERENT AND TREATMENT MAYBE DIFFERENT FOR MANY OF US. THANK YOU Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 24, 2001 Report Share Posted September 24, 2001 Hi , Maybe the foundation email group could be used for medical only stuff. Just a thought as not too many people use it. Elaine The RP Support Group Hello Everyone, Angie started this group a while back for the purpose of learning more about RP and supporting each other through encouragement and support in any way we could find to do so. We've had several discussion in the past on this very subject and tried so many things to help everyone, but it always ends up going back to the way it is now and the way it was then, for that matter. I will say that Roy and I are talking about a group that Lyle (God rest his soul), started a long time ago for just the medical part of RP. No chit chat, no jokes, no hugs and prayers for anyone, just medical info on RP. We were talking about deleting it, but now, we are talking about maybe keeping it going just for people who don't want anything else but medical info on RP. A tribute to Lyle, if you will. I will let Roy explain all about this group to everyone. I do want to stress again that we have tried several things in the past and they work for a week or two, but then go back to how it was originally when the group was started. There are alternatives. Digest, where you only get one or two posts daily with all the posts in one email, or no mail, like Connie suggested, and you can pick and chose the posts, which is also an excellent suggestion. Our group will stay the way it is. I'm very sorry everyone isn't happy with this, but we just can't please everyone. The only suggestions that I want to stress is: Please remember to change the subject line when you post. Especially on Digest. Digest # 1234, doesn't tell us a thing about what the post is about. Also, please make sure to just copy and paste a snippet of the previous post you are responding to. Not the whole email, and the one following that one, and the one following that one.......etc...... That is very frustrating for people, especially people on digest. I am as guilty of doing these things as anybody. Other than that, I have only the suggestion about the PolyMed group I was previously talking about that Roy is considering continuing. It could be the answer for everyone, I hope. We sure don't want to lose anyone, but there is no solution that will please everyone either. This group is full of medical info, but so much more than that. We are full of love for each other and that is just as important as the medical side of RP. Again, if you're looking for just the medical facts of RP, talk to Roy at: Rlr1999@... I hope this helps everyone understand this group better and I really hope we can all stick together and find a way to resolve this issue. Thank you everyone, W DISCLAIMER!!WE ARE NOT MEDICAL PROFESSIONALS, THEREFORE ANY INFORMATION THAT IS RECEIVED HERE IS FROM EXPERIENCE ONLY. PLEASE CONSULT WITH YOUR DOCTOR BEFORE TRYING ANYTHING THAT IS SUGGESTED. WE ARE NOT A SUBSTITUTE FOR YOUR PHYSICIAN AND ARE NOT TRYING TO BE. REMEMBER EVERYONE IS DIFFERENT AND TREATMENT MAYBE DIFFERENT FOR MANY OF US. THANK YOU Quote Link to comment Share on other sites More sharing options...
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