Guest guest Posted December 19, 2008 Report Share Posted December 19, 2008 Hello Ingrid, Thanks for your comments, although it seems I may have caused some confusion. The database was to be built, at the moment, for our own purposes inside this group. As there is a lot of information on there that is personal having it floating about the WWW is most likely not a good idea, where it was going to go from there maybe it would be then possible to extract information from this and post it on the web site. I did not mean set up a third website but make some additions or alterations to the current web site, http://www.soundsensitive.org .. I agree with your comments below as it would be good to have the integration but maybe I am jumping ahead of myself, one of my biggest pros and cons at the same. My web skill is minimal, like my database skill but I am a very fast learner and have some free time over the Christmas break, I can learn database then. I do have a twin brother who is a freelance graphic designer and web designer, but from what I read below it looks like you have the skill set covered J I am going to have a look at your website soon. On a side note, has anyone else noticed that the emails we are sending is taking days to come through? Or is it just my computer?? Warm Regards From: Soundsensitivity [mailto:Soundsensitivity ] On Behalf Of Ingrid Spielman Sent: Saturday, 20 December 2008 11:40 AM To: Soundsensitivity Subject: 4s website thoughts Hey , I'm picking up on your comments in the other thread. I can never find anything on this Yahoo site either. It really bugs me and like you I've got some web skills and wanted to make this site better. Before you build the database we very much need and want, I do have some info and thoughts on this. My partner and I set up ABC Online - (equivalent to the PBS website in the USA) - our company has been consulting in this area for 15 years. 1. There is a website for 4S already, aside from this yahoo site. That's the site: - http://www.soundsensitive.org/ 2. You can't do much more with the Yahoo technology than we are already doing with it. 3. Setting up another site, (a third site) IS NOT A GOOD IDEA - because of how google works. It is better to have ONE busy site NOT LOTS of sites. It is important to keep everything in one domain name / " url " . The Hyperacusis Forum has this sussed, but we don't. ( This is probably why they don't allow use of the name 4S there - that's very Google aware) Other's have pointed out to me, that we are lucky to have Dr. as our advocate/researcher, and our best chance of getting some help with 4S is to stick with her. I would like to see DR. get more Google wise, but I don't want to distract her from the report she is writing at the moment. 4. So if you want to do any work it would probably be best to contact the people who are working on the current 4S site. I tried that, see how you go with it. http://www.soundsensitive.org/ By the way, I've been trying to find a post I read that I thought was really funny. It was a tongue in cheek piece about the sort of occupations that a person with 4S could be really good at. Unfortunately I have a terrible memory and can't even think of suitable key words for a likely search. Cheers Ingrid. No there was another one we were gong to run through this forum. Information such as ago sex culture when it first appeared triggers sounds control methods and methods that have helped etc, location treatments tried and a few others things. We have so much information but I cant see anywhere where we have stored this, please let me know if I am wrongl i know a while ago we were talking about putting it into access and . This is something I can do over the Christmas break if every one is comfortable. Maybe we can tag this type of poll onto the forum, that way it will b e easy to access. Does everyone agree with this? There were some posts before about “a few questions” that showed some interesting information maybe we could expand on that. I was thinking of a database holding all of our information in one central (possible forum or computer) place and then we could go from there, but it all depends if everyone is interested / comfortable with this idea. Please let me know your thoughts. Kindest Regards From: Soundsensitivity [mailto:Soundsensitivity ] On Behalf Of Ingrid Spielman Sent: Wednesday, 17 December 2008 6:59 PM To: Soundsensitivity Subject: Re: Re: Dr moller Hi , Which survey are you thinking of? I set one survey up, (In a flurry of hope about the NIH study). It is here. http://ingridspielman.blogspot.com/ But you might be thinking of a different survey. I might be able to help out if that's any use. Ingrid. On 17/12/2008, at 5:20 PM, McKenna wrote: Maybe once the forum develops a little more it will allow a lot of people to access the information which at present they cant see on here..... Maybe this is something we could look into . at least then it would be possible for the body of research and information we are poking around in to be sent to one place that they could look at Also on a aside note, what ended up happening with the survey we were going to put together? R From: Soundsensitivity [mailto:Soundsensitivity ] On Behalf Of Ingrid Spielman Sent: Wednesday, 17 December 2008 1:18 PM To: Soundsen sitivity Subject: Re: Re: Dr moller Darlene and , I'm wondering if you know, or if anyone here knows... has Dr. Jabestroff has ever commented on Dr. J's clinical findings. I've been looking around on the web for that, but have not come across anything. I've noticed else where on this forum that patients who have contacte d Jabestroff have been told that they have Misophonia and that there are treatments for that which might help. This advise doesn't help most of us right now, but in terms of the professional 'received wisdom' , it is true. I am one of those people who thinks Dr. is noticing exactly what I have got, AND I SO APPRECIATE THAT. But her work needs to get noticed more widely and tested to the point where it becomes the received wisdom, from which treatment options can be explored; I guess there is a chance that the observations made by Dr. won't instantly lead to a treatment, so I'm jus t saying that for the sake of people with our symptoms it needs to be explored. So my questions isn' t about Dr. s work, or about Dr. Jabestroff's advice to patient enquirers, it is just about whether Dr. Jabestroff has been made aware of Dr. 's work and whether he has made and comments on that? Any not just Dr. Jabestroff, but other leaders in this area, how are they responding to the findings. And my next question would be are they open minded about these findings, or dismissing them. What I am angling at is do we think Dr. Jabestroff, and other could become advocate for people like us? Would it be helpful if he did? I acknowledge I am ne w to all this, and probably naive especially to all the politics around this stuff, but like everyone else here, I am looking for ways forward, especially for people who are not getting any recovery from their sympt oms. Ingrid. you are awesome! You must be the energizer bunny! LOL. I too am not banking on the NIH which is why I think it's very important for all of us to continually search out new avenues and things to try. I think it would be benificial if the NIH study does go through to have people like Dr. J and Professor Moller on board. Do keep us posted what you find out from your psychiatrist. > > ---I am not really sure why he replied to my emails!! I know he is on > vacation. I guess what I stated must have intrigued him and he had > some times on his hands. I will talk to my psychiatrist about the > Dilantin and show him Dr. Mo ller's notes to see if he thinks it would > be helpful. My psych knows nothing about 4S but he does know how > medications work and a lot about the brain function, etc. so maybe he > will be helpful > > I am used to just being like the Energizer Bunny, I keep going and > going until I get what I want. I have called and emailed and faxed > Univ of Fl, I keep calling them every day until I got somebody on the > phone. she PROMISED me the " big shot " doctor there wo uld email me. If > I see them I need information on what my referral needs to say, what > tests I need, if my insurance covers it, etc.. THey are very busy and > have a lot of call volume but I just keep on until I get a response. > > I have experience dealing with NIH, trust me, it is SLOW going. > Research takes forever, it takes a ton of money and it takes years > and years before it yields anything. Then you have to keep an eye on > them, they have complete control over the research, who does it, how > the money is spent or even misspent. Lots of red tape and I ain't > holdin my breath waiting for the NIH to find us a good therapy. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 20, 2008 Report Share Posted December 20, 2008 , I also noticed that the posts I made last night were delayed in being posted. One I commented on last night didn't post until today. Seems to be normal now though. > > > > ---I am not really sure why he replied to my emails!! I know he is > on > > vacation. I guess what I stated must have intrigued him and he had > > some times on his hands. I will talk to my psychiatrist about the > > Dilantin and show him Dr. Mo ller's notes to see if he thinks it > would > > be helpful. My psych knows nothing about 4S but he does know how > > medications work and a lot about the brain function, etc. so maybe > he > > will be helpful > > > > I am used to just being like the Energizer Bunny, I keep going and > > going until I get what I want. I have called and emailed and faxed > > Univ of Fl, I keep calling them every day until I got somebody on > the > > phone. she PROMISED me the " big shot " doctor there wo uld email me. > If > > I see them I need information on what my referral needs to say, > what > > tests I need, if my insurance covers it, etc.. THey are very busy > and > > have a lot of call volume but I just keep on until I get a response. > > > > I have experience dealing with NIH, trust me, it is SLOW going. > > Research takes forever, it takes a ton of money and it takes years > > and years before it yields anything. Then you have to keep an eye > on > > them, they have complete control over the research, who does it, > how > > the money is spent or even misspent. Lots of red tape and I ain't > > holdin my breath waiting for the NIH to find us a good therapy. > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 21, 2008 Report Share Posted December 21, 2008 Hi I'm all for the database, but, as you say, we need to be sure that people's privacy will be respected. At the moment, if I google my name, my membership of Sound Sensitive and personal details are revealed. I wouldn't want details of my condition being available to anybody who happened to google my name. ) BTW, I had noticed the time lag for posts too. Guy Re: Re: Dr moller Hi , Which survey are you thinking of? I set one survey up, (In a flurry of hope about the NIH study). It is here. http://ingridspielman.blogspot.com/ But you might be thinking of a different survey. I might be able to help out if that's any use. Ingrid. Maybe once the forum develops a little more it will allow a lot of people to access the information which at present they cant see on here..... Maybe this is something we could look into . at least then it would be possible for the body of research and information we are poking around in to be sent to one place that they could look at Also on a aside note, what ended up happening with the survey we were going to put together? R From: Soundsensitivity [mailto:Soundsensitivity ] On Behalf Of Ingrid SpielmanSent: Wednesday, 17 December 2008 1:18 PMTo: Soundsen sitivity Subject: Re: Re: Dr moller Darlene and , I'm wondering if you know, or if anyone here knows... has Dr. Jabestroff has ever commented on Dr. J's clinical findings. I've been looking around on the web for that, but have not come across anything. I've noticed else where on this forum that patients who have contacte d Jabestroff have been told that they have Misophonia and that there are treatments for that which might help. This advise doesn't help most of us right now, but in terms of the professional 'received wisdom' , it is true. I am one of those people who thinks Dr. is noticing exactly what I have got, AND I SO APPRECIATE THAT. But her work needs to get noticed more widely and tested to the point where it becomes the received wisdom, from which treatment options can be explored; I guess there is a chance that the observations made by Dr. won't instantly lead to a treatment, so I'm jus t saying that for the sake of people with our symptoms it needs to be explored. So my questions isn' t about Dr. s work, or about Dr. Jabestroff's advice to patient enquirers, it is just about whether Dr. Jabestroff has been made aware of Dr. 's work and whether he has made and comments on that? Any not just Dr. Jabestroff, but other leaders in this area, how are they responding to the findings. And my next question would be are they open minded about these findings, or dismissing them. What I am angling at is do we think Dr. Jabestroff, and other could become advocate for people like us? Would it be helpful if he did? I acknowledge I am ne w to all this, and probably naive especially to all the politics around this stuff, but like everyone else here, I am looking for ways forward, especially for people who are not getting any recovery from their sympt oms. Ingrid. you are awesome! You must be the energizer bunny! LOL. I too am not banking on the NIH which is why I think it's very important for all of us to continually search out new avenues and things to try. I think it would be benificial if the NIH study does go through to have people like Dr. J and Professor Moller on board. Do keep us posted what you find out from your psychiatrist. >> ---I am not really sure why he replied to my emails!! I know he is on > vacation. I guess what I stated must have intrigued him and he had > some times on his hands. I will talk to my psychiatrist about the > Dilantin and show him Dr. Mo ller's notes to see if he thinks it would > be helpful. My psych knows nothing about 4S but he does know how > medications work and a lot about the brain function, etc. so maybe he > will be helpful> > I am used to just being like the Energizer Bunny, I keep going and > going until I get what I want. I have called and emailed and faxed > Univ of Fl, I keep calling them every day until I got somebody on the > phone. she PROMISED me the "big shot" doctor there wo uld email me. If > I see them I need information on what my referral needs to say, what > tests I need, if my insurance covers it, etc.. THey are very busy and > have a lot of call volume but I just keep on until I get a response.> > I have experience dealing with NIH, trust me, it is SLOW going. > Research takes forever, it takes a ton of money and it takes years > and years before it yields anything. Then you have to keep an eye on > them, they have complete control over the research, who does it, how > the money is spent or even misspent. Lots of red tape and I ain't > holdin my breath waiting for the NIH to find us a good therapy.> > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 21, 2008 Report Share Posted December 21, 2008 No time lag this time! Re: Re: Dr moller Hi , Which survey are you thinking of? I set one survey up, (In a flurry of hope about the NIH study). It is here. http://ingridspielman.blogspot.com/ But you might be thinking of a different survey. I might be able to help out if that's any use. Ingrid. Maybe once the forum develops a little more it will allow a lot of people to access the information which at present they cant see on here..... Maybe this is something we could look into . at least then it would be possible for the body of research and information we are poking around in to be sent to one place that they could look at Also on a aside note, what ended up happening with the survey we were going to put together? R From: Soundsensitivity [mailto:Soundsensitivity ] On Behalf Of Ingrid SpielmanSent: Wednesday, 17 December 2008 1:18 PMTo: Soundsen sitivity Subject: Re: Re: Dr moller Darlene and , I'm wondering if you know, or if anyone here knows... has Dr. Jabestroff has ever commented on Dr. J's clinical findings. I've been looking around on the web for that, but have not come across anything. I've noticed else where on this forum that patients who have contacte d Jabestroff have been told that they have Misophonia and that there are treatments for that which might help. This advise doesn't help most of us right now, but in terms of the professional 'received wisdom' , it is true. I am one of those people who thinks Dr. is noticing exactly what I have got, AND I SO APPRECIATE THAT. But her work needs to get noticed more widely and tested to the point where it becomes the received wisdom, from which treatment options can be explored; I guess there is a chance that the observations made by Dr. won't instantly lead to a treatment, so I'm jus t saying that for the sake of people with our symptoms it needs to be explored. So my questions isn' t about Dr. s work, or about Dr. Jabestroff's advice to patient enquirers, it is just about whether Dr. Jabestroff has been made aware of Dr. 's work and whether he has made and comments on that? Any not just Dr. Jabestroff, but other leaders in this area, how are they responding to the findings. And my next question would be are they open minded about these findings, or dismissing them. What I am angling at is do we think Dr. Jabestroff, and other could become advocate for people like us? Would it be helpful if he did? I acknowledge I am ne w to all this, and probably naive especially to all the politics around this stuff, but like everyone else here, I am looking for ways forward, especially for people who are not getting any recovery from their sympt oms. Ingrid. you are awesome! You must be the energizer bunny! LOL. I too am not banking on the NIH which is why I think it's very important for all of us to continually search out new avenues and things to try. I think it would be benificial if the NIH study does go through to have people like Dr. J and Professor Moller on board. Do keep us posted what you find out from your psychiatrist. >> ---I am not really sure why he replied to my emails!! I know he is on > vacation. I guess what I stated must have intrigued him and he had > some times on his hands. I will talk to my psychiatrist about the > Dilantin and show him Dr. Mo ller's notes to see if he thinks it would > be helpful. My psych knows nothing about 4S but he does know how > medications work and a lot about the brain function, etc. so maybe he > will be helpful> > I am used to just being like the Energizer Bunny, I keep going and > going until I get what I want. I have called and emailed and faxed > Univ of Fl, I keep calling them every day until I got somebody on the > phone. she PROMISED me the "big shot" doctor there wo uld email me. If > I see them I need information on what my referral needs to say, what > tests I need, if my insurance covers it, etc.. THey are very busy and > have a lot of call volume but I just keep on until I get a response.> > I have experience dealing with NIH, trust me, it is SLOW going. > Research takes forever, it takes a ton of money and it takes years > and years before it yields anything. Then you have to keep an eye on > them, they have complete control over the research, who does it, how > the money is spent or even misspent. Lots of red tape and I ain't > holdin my breath waiting for the NIH to find us a good therapy.> > Quote Link to comment Share on other sites More sharing options...
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