Guest guest Posted September 18, 2011 Report Share Posted September 18, 2011 that is a good idea.  I have another web site for people to go to. www.achalasia.us  that is a place to start for people looking for answers and help.  When I get the web site up and running for the foundation I will link this and other web sites together. We need as much help and publicity as we can get.  The more the word gets out the better we can help others and raise money for research. Mueller IV  <FONT face= " comic sans ms " color=#ff0000 size=5> in Georgia </FONT><IMG src= " http://us.i1.yimg.com/us.yimg.com/i/mesg/tsmileys2/04.gif " > ________________________________ From: pletchsr <pletchsr@...> achalasia Sent: Sunday, September 18, 2011 12:53 PM Subject: achalasia group  Hi achalasia people, I would like to recommend something to us as a group. This is also something for the new non-profit that is starting. It would be very helpful to our new members to get a " Welcome Packet " - a document that lists a link to a description of the disease, a description of what we call " spasms " , a brief list of the top 10 doctors (200+ surgeries), a list of medications that people use (not to recommend anything, just to say that this is what people do,) and a list of remedies we all use for spasms (once again, with a disclaimer at the top that what works for one person may actually cause problems for another). It would be like a 5 page document. This packet would not give advice as to treatment. Then at the end a list of links of our many support groups - the group, the four or five facebook groups, the healthcares group, and the info for 's non-profit. What do you all think of this? I'd be willing to do it, but give me about 3 months. I could set it up on google docs so people could see it and help revise. I have belonged to other health oriented groups where you automatically get a welcome " packet " or " email " when you join the group, so it wouldn't be difficult to administer. Please give feedback. Maybe someone is already working on this. Gunn Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 18, 2011 Report Share Posted September 18, 2011 This would be incredible!!!!! When nurse practitioners, doctors and even GI's (mine-past tense tho) dont have a clue as to what is going on.......we must educate ourselves and get the answers. .....What a gift of an offer....GO FOR IT! and THANK YOU!! in Santa Barbara In a message dated 9/18/2011 9:53:48 A.M. Pacific Daylight Time, pletchsr@... writes: Hi achalasia people, I would like to recommend something to us as a group. This is also something for the new non-profit that is starting. It would be very helpful to our new members to get a " Welcome Packet " - a document that lists a link to a description of the disease, a description of what we call " spasms " , a brief list of the top 10 doctors (200+ surgeries), a list of medications that people use (not to recommend anything, just to say that this is what people do,) and a list of remedies we all use for spasms (once again, with a disclaimer at the top that what works for one person may actually cause problems for another). It would be like a 5 page document. This packet would not give advice as to treatment. Then at the end a list of links of our many support groups - the group, the four or five facebook groups, the healthcares group, and the info for 's non-profit. What do you all think of this? I'd be willing to do it, but give me about 3 months. I coul d set it up on google docs so people could see it and help revise. I have belonged to other health oriented groups where you automatically get a welcome " packet " or " email " when you join the group, so it wouldn't be difficult to administer. Please give feedback. Maybe someone is already working on this. Gunn Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 18, 2011 Report Share Posted September 18, 2011 @ Gunn, I think that is a wonderful idea. Â Sharon Cline From: pletchsr <pletchsr@...> Subject: achalasia group achalasia Date: Sunday, September 18, 2011, 11:53 AM Â Hi achalasia people, I would like to recommend something to us as a group. This is also something for the new non-profit that is starting. It would be very helpful to our new members to get a " Welcome Packet " - a document that lists a link to a description of the disease, a description of what we call " spasms " , a brief list of the top 10 doctors (200+ surgeries), a list of medications that people use (not to recommend anything, just to say that this is what people do,) and a list of remedies we all use for spasms (once again, with a disclaimer at the top that what works for one person may actually cause problems for another). It would be like a 5 page document. This packet would not give advice as to treatment. Then at the end a list of links of our many support groups - the group, the four or five facebook groups, the healthcares group, and the info for 's non-profit. What do you all think of this? I'd be willing to do it, but give me about 3 months. I could set it up on google docs so people could see it and help revise. I have belonged to other health oriented groups where you automatically get a welcome " packet " or " email " when you join the group, so it wouldn't be difficult to administer. Please give feedback. Maybe someone is already working on this. Gunn Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 18, 2011 Report Share Posted September 18, 2011 Wonderful Idea! Could have used this when I started searching! ________________________________ From: Sharon Cline <sharon_cline@...> achalasia Sent: Sunday, September 18, 2011 2:12 PM Subject: Re: achalasia group  @ Gunn, I think that is a wonderful idea.  Sharon Cline From: pletchsr <pletchsr@...> Subject: achalasia group achalasia Date: Sunday, September 18, 2011, 11:53 AM  Hi achalasia people, I would like to recommend something to us as a group. This is also something for the new non-profit that is starting. It would be very helpful to our new members to get a " Welcome Packet " - a document that lists a link to a description of the disease, a description of what we call " spasms " , a brief list of the top 10 doctors (200+ surgeries), a list of medications that people use (not to recommend anything, just to say that this is what people do,) and a list of remedies we all use for spasms (once again, with a disclaimer at the top that what works for one person may actually cause problems for another). It would be like a 5 page document. This packet would not give advice as to treatment. Then at the end a list of links of our many support groups - the group, the four or five facebook groups, the healthcares group, and the info for 's non-profit. What do you all think of this? I'd be willing to do it, but give me about 3 months. I could set it up on google docs so people could see it and help revise. I have belonged to other health oriented groups where you automatically get a welcome " packet " or " email " when you join the group, so it wouldn't be difficult to administer. Please give feedback. Maybe someone is already working on this. Gunn Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 18, 2011 Report Share Posted September 18, 2011 Sounds great, . I like the Google Docs idea so people can edit/add/revise. On Sep 18, 2011, at 12:12 PM, Sharon Cline wrote: > set it up on google docs so people could see it and help revise Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 18, 2011 Report Share Posted September 18, 2011 , I think this is a great idea! I will be more than happy to help with information I find about this agravating disease. Caroll > > Hi achalasia people, > > I would like to recommend something to us as a group. This is also something for the new non-profit that is starting. It would be very helpful to our new members to get a " Welcome Packet " - a document that lists a link to a description of the disease, a description of what we call " spasms " , a brief list of the top 10 doctors (200+ surgeries), a list of medications that people use (not to recommend anything, just to say that this is what people do,) and a list of remedies we all use for spasms (once again, with a disclaimer at the top that what works for one person may actually cause problems for another). It would be like a 5 page document. This packet would not give advice as to treatment. Then at the end a list of links of our many support groups - the group, the four or five facebook groups, the healthcares group, and the info for 's non-profit. What do you all think of this? I'd be willing to do it, but give me about 3 months. I could set it up on google docs so people could see it and help revise. I have belonged to other health oriented groups where you automatically get a welcome " packet " or " email " when you join the group, so it wouldn't be difficult to administer. Please give feedback. Maybe someone is already working on this. > > Gunn > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 18, 2011 Report Share Posted September 18, 2011 Wonderful idea!! It would be good to include the top surgeons and GI specialists. Thanks for your time on this project!! BC > > Hi achalasia people, > > I would like to recommend something to us as a group. This is also something for the new non-profit that is starting. It would be very helpful to our new members to get a " Welcome Packet " - a document that lists a link to a description of the disease, a description of what we call " spasms " , a brief list of the top 10 doctors (200+ surgeries), a list of medications that people use (not to recommend anything, just to say that this is what people do,) and a list of remedies we all use for spasms (once again, with a disclaimer at the top that what works for one person may actually cause problems for another). It would be like a 5 page document. This packet would not give advice as to treatment. Then at the end a list of links of our many support groups - the group, the four or five facebook groups, the healthcares group, and the info for 's non-profit. What do you all think of this? I'd be willing to do it, but give me about 3 months. I could set it up on google docs so people could see it and help revise. I have belonged to other health oriented groups where you automatically get a welcome " packet " or " email " when you join the group, so it wouldn't be difficult to administer. Please give feedback. Maybe someone is already working on this. > > Gunn > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 19, 2011 Report Share Posted September 19, 2011 Hi - I also think this is a great idea! This group itself is a Godsend. My son has achalasia and it's a very difficult thing to navigate when you're looking for competent medical care. I also LOVE the non-profit idea! Before I lost my job, I was trying my best to explain to my boss what my son has. His response? " I would love to be able to eat and not gain any weight " . This disease needs more awareness! I'm glad to see so many people passionate about helping others. I'm not sure if there is anything I can help with but I am happy to volunteer if needed! Thanks again to all, Cruz Sent from my iPhone On Sep 18, 2011, at 12:53 PM, " pletchsr " <pletchsr@...> wrote: > Hi achalasia people, > > I would like to recommend something to us as a group. This is also something for the new non-profit that is starting. It would be very helpful to our new members to get a " Welcome Packet " - a document that lists a link to a description of the disease, a description of what we call " spasms " , a brief list of the top 10 doctors (200+ surgeries), a list of medications that people use (not to recommend anything, just to say that this is what people do,) and a list of remedies we all use for spasms (once again, with a disclaimer at the top that what works for one person may actually cause problems for another). It would be like a 5 page document. This packet would not give advice as to treatment. Then at the end a list of links of our many support groups - the group, the four or five facebook groups, the healthcares group, and the info for 's non-profit. What do you all think of this? I'd be willing to do it, but give me about 3 months. I could set it up on google docs so people could see it and help revise. I have belonged to other health oriented groups where you automatically get a welcome " packet " or " email " when you join the group, so it wouldn't be difficult to administer. Please give feedback. Maybe someone is already working on this. > > Gunn > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 19, 2011 Report Share Posted September 19, 2011 Sent from on Android Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 19, 2011 Report Share Posted September 19, 2011 Hi - Great idea!! I would be more than happy to help. Wish things had been that easy for me when I started doing research! Haydee Quote Link to comment Share on other sites More sharing options...
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