tag:blogger.com,1999:blog-26666124.post1393441335434221855..comments2024-03-18T03:28:36.581-04:00Comments on Shrink Rap: What a Great IdeaUnknownnoreply@blogger.comBlogger5125tag:blogger.com,1999:blog-26666124.post-22400481852274000722008-03-25T15:18:00.000-04:002008-03-25T15:18:00.000-04:00I might just join. I eat up information on my con...I might just join. I eat up information on my conditions like it's candy, and maybe I'll learn something new. Thanks for sharing!NeoNurseChichttps://www.blogger.com/profile/16120931307124798416noreply@blogger.comtag:blogger.com,1999:blog-26666124.post-36632420692517267392008-03-25T14:21:00.000-04:002008-03-25T14:21:00.000-04:00What's exciting about this endeavor is fourfold:1....What's exciting about this endeavor is fourfold:<BR/><BR/>1. Although patient self-report is notoriously unreliable, there is no real incentive to deviate from the truth in an anonymous forum.<BR/><BR/>2. Potentially valuable information can be gleaned from "real world" patients.<BR/><BR/>3. The process of writing forces an individual to (hopefully) reflect more thoughtfully on what he/she has to say. This could promote more accurate reporting and perhaps lead the patient to a deeper level of insight regarding his/her condition.<BR/><BR/>4. There is likely a measure of social support to be gleaned from the experience, maybe even therapeutic.Dr. Pink Freudhttps://www.blogger.com/profile/12090769288313695919noreply@blogger.comtag:blogger.com,1999:blog-26666124.post-66671898836287399672008-03-25T14:19:00.001-04:002008-03-25T14:19:00.001-04:00This comment has been removed by the author.Dr. Pink Freudhttps://www.blogger.com/profile/12090769288313695919noreply@blogger.comtag:blogger.com,1999:blog-26666124.post-12443571263685264272008-03-25T14:19:00.000-04:002008-03-25T14:19:00.000-04:00What's exciting about this endeavor is fourfold:1....What's exciting about this endeavor is fourfold:<BR/><BR/>1. Although patient self-report is notoriously unreliable, there is no real incentive to deviate from the truth in an anonymous form.<BR/><BR/>2. Potentially valuable information can be gleaned from "real world" patients.<BR/><BR/>3. The process of writing forces an individual to (hopefully) reflect more thoughtfully on what he/she has to say. This could promote more accurate reporting and perhaps lead the patient to a deeper level of insight regarding his/her condition.<BR/><BR/>4. There is likely a measure of social support to be gleaned from the experience, maybe even therapeutic.Dr. Pink Freudhttps://www.blogger.com/profile/12090769288313695919noreply@blogger.comtag:blogger.com,1999:blog-26666124.post-82089957245063047012008-03-24T13:53:00.000-04:002008-03-24T13:53:00.000-04:00I am one of about 100 ALS patients that have taken...I am one of about 100 ALS patients that have taken the results from an admittedly small trial in Italy as the only good news we have had for potentially treating ALS. Hundreds of million of dollars have been spent on ALS research and nothing but one pharmaceutical was approved way back in the late 90's, riluzole, and it is thought to extend life by two to three months. It also costs $1,000 a month.<BR/><BR/>There have been all sorts of clinical trials and nothing has come out of them. The Italian trial followed animal model trials that gave promising results. Their human trial also gave promising results. <BR/><BR/>Those of us with ALS generally have only two to five years of life after diagnosis. We don't have the luxury of waiting for the research community to produce for us. We must take whatever promising results that are reported by credible researchers.gamboachuckhttps://www.blogger.com/profile/04421484668366646115noreply@blogger.com