Guest guest Posted March 24, 2011 Report Share Posted March 24, 2011 From what I am reading 1) One goal is to found a NPO to help with this condition in many different ways 2) Another goal is to collect funds to pay for someone to go to Dr. Amen's Clinic? These are very different goals. I would suggest those who have insurance contact Dr. Amen's clinic to discover what is eligible for coverage and then proceed to visit. I am also happy to call them and find out what would be offered. My work with the Drs. Amen has been through the California clinic and from what I can recall here at home, they offer very sophisticated brain scans and based on those scans, recommend various medications that can be tried to combat the symptoms. I believe this is related to the belief that Brain Chemistry dictates more about 'us' than we realize, and by adjusting brain chemistry, we can significantly improve certain symptoms, etc. etc. I have not consulted with the Drs. Amen much about 4S or misophonia. But I have consulted with many of you, many of whom have taken many different types of drugs, etc. etc. This data has not been compiled and would certainly fall into a good research project. So, to clarify, these are 2 separate goals and if number 2 is going to become a primary goal, there are many tricky aspects to figure out, i.e.,....say this group donates $. Who gets it? And why? And how? I do not intend to discourage but I also do not want to get the horse in front of the cart. I think we should focus on the big picture, create the NPO, and then see what comes forward as primary goals of the new ISSA. What do you think? Remember, the medical providers are busy on the other end, defining, categorizing, assessing, creating tools for more. Marsha , AuD Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 24, 2011 Report Share Posted March 24, 2011 I agree with Dr. . Although, the idea of sending a few people to Dr. Amen's clinic sounds like we are proactively delving to find solutions ourselves, I still think there are some practical reprecussions. As suggested by Dr. : Why certain people? Why random volunteers? Should we select those who have the worst symptoms? Mix the 3 people to go as in a study? What assurances are given to the people giving money? Will those people/the group have access to each of the volunteers results, even though there is a legal patient/doctor privacy laws? Or are we just depending on each of the volunteers written summary on this group site? Also, asking for and giving money has a lot of legal implications and responsibilities. This is a lot of money to ask for too. This country is in a hard economic crisis and a lot of people are out of work or working at way below standand salary. I for one, cannot afford or even contemplate giving to my past favorite charities much less this proposition which seems more of a gamble than an investment. I myself do not believe sending a few people to Dr. Amen's clinic will give us the answers we seek, because even though we all share the similar sound triggers/irritations, we do not share the same reactions, anxieties and responses to " cures. " My experience with Dr. Margaret Jastroboff is proof of that. Plus I am distrustful of any person who " advertises " their service on TV, albeit PBS. Has anyone done a BB search or law suit search on how his past clients may not have been satisfied? All in all, more contemplation, research and planning needs to be done before money exchanges hands. For those who just want to contribute out of the kindness of their hearts, they may want to put that in writing. As you may be able to deduce, I've been in the legal industry for 25 years as a senior paralegal. So I have seen the worst of where good intentions combined with unaccounted for money can get people. I would hate to see this support group become burdened with resentment and legal issues. > > From what I am reading > > 1) One goal is to found a NPO to help with this condition in many different ways > > 2) Another goal is to collect funds to pay for someone to go to Dr. Amen's Clinic? > > These are very different goals. > > I would suggest those who have insurance contact Dr. Amen's clinic to discover what is eligible for coverage and then proceed to visit. I am also happy to call them and find out what would be offered. > > My work with the Drs. Amen has been through the California clinic and from what I can recall here at home, they offer very sophisticated brain scans and based on those scans, recommend various medications that can be tried to combat the symptoms. > > I believe this is related to the belief that Brain Chemistry dictates more about 'us' than we realize, and by adjusting brain chemistry, we can significantly improve certain symptoms, etc. etc. > > I have not consulted with the Drs. Amen much about 4S or misophonia. > > But I have consulted with many of you, many of whom have taken many different types of drugs, etc. etc. This data has not been compiled and would certainly fall into a good research project. > > So, to clarify, these are 2 separate goals and if number 2 is going to become a primary goal, there are many tricky aspects to figure out, i.e.,....say this group donates $. > > Who gets it? And why? And how? > > I do not intend to discourage but I also do not want to get the horse in front of the cart. > > I think we should focus on the big picture, create the NPO, and then see what comes forward as primary goals of the new ISSA. > > What do you think? > > Remember, the medical providers are busy on the other end, defining, categorizing, assessing, creating tools for more. > > Marsha , AuD > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 24, 2011 Report Share Posted March 24, 2011 I would have to agree as well. We don't want the cart before the horse and we want for all to gain from this rather than end up with further hurt and pain from the results, whether intentional or not. We are all desperate for resolution, but I know for me, when I'm impatient for resolution, I can miss part of the journey or miss something that could have made the journey easier or more helpful. Let's weigh the details out before going too far. I have contacted the Amen Clinincs on a few occassions personally. I am impressed with their diligence, responsiveness and detail to finding answers. However, I don't know anyone personally who has been treated there. For me, it would take flying across the US and hotel costs plus the expense of the visit. I have considered including the visit into a family vacation, yet have not been able to make that work yet. I would be willing to go as well and am willing to pay what it takes, yet want whatever we do to benefit everyone. Another option I can put on the table is this: I started meeting a group that involves a neurologist, psychiatrist, counselor, audiologist and neurofeedback specialist. They are all working together on the neuroscience perspective of brain research, brain trauma, etc. They are working with me (partly as the guniea pig) to see if we can make a difference with my 4S symptoms. I will ask their opinion about how we can best move forward. To: Soundsensitivity Sent: Thu, March 24, 2011 11:42:22 AMSubject: Re: Two Goals ? I agree with Dr. . Although, the idea of sending a few people to Dr. Amen's clinic sounds like we are proactively delving to find solutions ourselves, I still think there are some practical reprecussions. As suggested by Dr. :Why certain people? Why random volunteers? Should we select those who have the worst symptoms? Mix the 3 people to go as in a study? What assurances are given to the people giving money? Will those people/the group have access to each of the volunteers results, even though there is a legal patient/doctor privacy laws? Or are we just depending on each of the volunteers written summary on this group site?Also, asking for and giving money has a lot of legal implications and responsibilities. This is a lot of money to ask for too. This country is in a hard economic crisis and a lot of people are out of work or working at way below standand salary. I for one, cannot afford or even contemplate giving to my past favorite charities much less this proposition which seems more of a gamble than an investment.I myself do not believe sending a few people to Dr. Amen's clinic will give us the answers we seek, because even though we all share the similar sound triggers/irritations, we do not share the same reactions, anxieties and responses to "cures." My experience with Dr. Margaret Jastroboff is proof of that.Plus I am distrustful of any person who "advertises" their service on TV, albeit PBS. Has anyone done a BB search or law suit search on how his past clients may not have been satisfied?All in all, more contemplation, research and planning needs to be done before money exchanges hands. For those who just want to contribute out of the kindness of their hearts, they may want to put that in writing.As you may be able to deduce, I've been in the legal industry for 25 years as a senior paralegal. So I have seen the worst of where good intentions combined with unaccounted for money can get people. I would hate to see this support group become burdened with resentment and legal issues.>> From what I am reading > > 1) One goal is to found a NPO to help with this condition in many different ways> > 2) Another goal is to collect funds to pay for someone to go to Dr. Amen's Clinic? > > These are very different goals.> > I would suggest those who have insurance contact Dr. Amen's clinic to discover what is eligible for coverage and then proceed to visit. I am also happy to call them and find out what would be offered.> > My work with the Drs. Amen has been through the California clinic and from what I can recall here at home, they offer very sophisticated brain scans and based on those scans, recommend various medications that can be tried to combat the symptoms.> > I believe this is related to the belief that Brain Chemistry dictates more about 'us' than we realize, and by adjusting brain chemistry, we can significantly improve certain symptoms, etc. etc.> > I have not consulted with the Drs. Amen much about 4S or misophonia.> > But I have consulted with many of you, many of whom have taken many different types of drugs, etc. etc. This data has not been compiled and would certainly fall into a good research project.> > So, to clarify, these are 2 separate goals and if number 2 is going to become a primary goal, there are many tricky aspects to figure out, i.e.,....say this group donates $.> > Who gets it? And why? And how?> > I do not intend to discourage but I also do not want to get the horse in front of the cart.> > I think we should focus on the big picture, create the NPO, and then see what comes forward as primary goals of the new ISSA.> > What do you think?> > Remember, the medical providers are busy on the other end, defining, categorizing, assessing, creating tools for more.> > Marsha , AuD> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 24, 2011 Report Share Posted March 24, 2011 Marsha, I just spoke with Dr. Amen’s clinic. They said they don’t take any kind of insurance. So whoever goes would have to pay it all up front. That’s why I want to raise the money to send 3 people so that no one is out such a large sum—I think it’s the only way to start with some sort of research. I want to get an NPO going also, but that looks like it’s going to take a while and has a lot of stipulations right now. My main goal right now is getting the SPECT scans which might show some valuable information that we can use as a stepping stone for more research. I would love to have an NPO and be able to eventually do mailings to raise research money and awareness. But we still have a lot of work before that phase. From: Soundsensitivity [mailto:Soundsensitivity ] On Behalf Of MSent: Thursday, March 24, 2011 12:11 PMTo: Soundsensitivity Subject: Two Goals ? From what I am reading 1) One goal is to found a NPO to help with this condition in many different ways2) Another goal is to collect funds to pay for someone to go to Dr. Amen's Clinic? These are very different goals.I would suggest those who have insurance contact Dr. Amen's clinic to discover what is eligible for coverage and then proceed to visit. I am also happy to call them and find out what would be offered.My work with the Drs. Amen has been through the California clinic and from what I can recall here at home, they offer very sophisticated brain scans and based on those scans, recommend various medications that can be tried to combat the symptoms.I believe this is related to the belief that Brain Chemistry dictates more about 'us' than we realize, and by adjusting brain chemistry, we can significantly improve certain symptoms, etc. etc.I have not consulted with the Drs. Amen much about 4S or misophonia.But I have consulted with many of you, many of whom have taken many different types of drugs, etc. etc. This data has not been compiled and would certainly fall into a good research project.So, to clarify, these are 2 separate goals and if number 2 is going to become a primary goal, there are many tricky aspects to figure out, i.e.,....say this group donates $.Who gets it? And why? And how?I do not intend to discourage but I also do not want to get the horse in front of the cart.I think we should focus on the big picture, create the NPO, and then see what comes forward as primary goals of the new ISSA.What do you think?Remember, the medical providers are busy on the other end, defining, categorizing, assessing, creating tools for more.Marsha , AuD Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 24, 2011 Report Share Posted March 24, 2011 I guess I thought that $50-$100 is not that much money. I spoke to Dr. Amen’s clinic and told them we want to send 3 people to see them who have similar symptoms and we want to see if there is a common link that would show up on the SPECT scans. I just don’t feel like $50 would be that much to “risk” for possible answers. If it is a lot to someone because of their economic hardship, then they definitely shouldn’t contribute. I bought $20 in Girl Scout Cookies the other day, and I figure this would be more important of a contribution than buying some cookies… I know that even when I go to a specialist I have to pay a $40 copay—this could be better than all the specialists I wasted a ton of copays on. As far as the accounting part of it, that’s why Tara would keep a record of who sent money in and I would put it in an account. I would send her a Bank Statement to show the money was in there and not being misused. I can understand someone’s concern that I would be pocketing it or something but that is why we would have someone separate keeping record of it. I have gone to so many doctors trying to figure this thing out, I didn’t think $50 is too much to check this avenue out. The worse case scenario is we all wasted $50. From: Soundsensitivity [mailto:Soundsensitivity ] On Behalf Of spencermary20Sent: Thursday, March 24, 2011 12:42 PMTo: Soundsensitivity Subject: Re: Two Goals ? I agree with Dr. . Although, the idea of sending a few people to Dr. Amen's clinic sounds like we are proactively delving to find solutions ourselves, I still think there are some practical reprecussions. As suggested by Dr. :Why certain people? Why random volunteers? Should we select those who have the worst symptoms? Mix the 3 people to go as in a study? What assurances are given to the people giving money? Will those people/the group have access to each of the volunteers results, even though there is a legal patient/doctor privacy laws? Or are we just depending on each of the volunteers written summary on this group site?Also, asking for and giving money has a lot of legal implications and responsibilities. This is a lot of money to ask for too. This country is in a hard economic crisis and a lot of people are out of work or working at way below standand salary. I for one, cannot afford or even contemplate giving to my past favorite charities much less this proposition which seems more of a gamble than an investment.I myself do not believe sending a few people to Dr. Amen's clinic will give us the answers we seek, because even though we all share the similar sound triggers/irritations, we do not share the same reactions, anxieties and responses to " cures. " My experience with Dr. Margaret Jastroboff is proof of that.Plus I am distrustful of any person who " advertises " their service on TV, albeit PBS. Has anyone done a BB search or law suit search on how his past clients may not have been satisfied?All in all, more contemplation, research and planning needs to be done before money exchanges hands. For those who just want to contribute out of the kindness of their hearts, they may want to put that in writing.As you may be able to deduce, I've been in the legal industry for 25 years as a senior paralegal. So I have seen the worst of where good intentions combined with unaccounted for money can get people. I would hate to see this support group become burdened with resentment and legal issues.>> From what I am reading > > 1) One goal is to found a NPO to help with this condition in many different ways> > 2) Another goal is to collect funds to pay for someone to go to Dr. Amen's Clinic? > > These are very different goals.> > I would suggest those who have insurance contact Dr. Amen's clinic to discover what is eligible for coverage and then proceed to visit. I am also happy to call them and find out what would be offered.> > My work with the Drs. Amen has been through the California clinic and from what I can recall here at home, they offer very sophisticated brain scans and based on those scans, recommend various medications that can be tried to combat the symptoms.> > I believe this is related to the belief that Brain Chemistry dictates more about 'us' than we realize, and by adjusting brain chemistry, we can significantly improve certain symptoms, etc. etc.> > I have not consulted with the Drs. Amen much about 4S or misophonia.> > But I have consulted with many of you, many of whom have taken many different types of drugs, etc. etc. This data has not been compiled and would certainly fall into a good research project.> > So, to clarify, these are 2 separate goals and if number 2 is going to become a primary goal, there are many tricky aspects to figure out, i.e.,....say this group donates $.> > Who gets it? And why? And how?> > I do not intend to discourage but I also do not want to get the horse in front of the cart.> > I think we should focus on the big picture, create the NPO, and then see what comes forward as primary goals of the new ISSA.> > What do you think?> > Remember, the medical providers are busy on the other end, defining, categorizing, assessing, creating tools for more.> > Marsha , AuD> Quote Link to comment Share on other sites More sharing options...
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