Who I am

[Guest guest]

I have been posting here for quite some time and want to let you know who I am, why I am here, what my mission is and why I created the google discussion group where we can focus on all treatment options and invite practitioners and researchers into the discussion. My name is Heidi Salerno. I started out with Hyperacusis when I was very young, florescent lights caused me intense pain, drop on the floor and cry pain. Around 8 or so I developed Misophonia, unable to properly process the sounds of chewing of both food and gum. As time went out it included bass sounds from stereos,TVs in adjoining rooms, people walking above my ceiling to eventually basketballs bouncing and many other things.One day about 4 years ago my mom found and gave to me an article in a newspaper on Hyperacusis. I immediately went on online and searched the term and read the discussion board and realized that what I had was what they were complaining that other people had, 4S. I quickly found this discussion group and was amazing, as every person here has experienced, that there were others. At last, I found my people. People who could relate, understand and maybe figure out how to cope. A year ago February I agreed to be interviewed by Joyce Cohen of the New York Times. I realized how powerful this piece could be in bringing awareness as I had not been able to unearth any real mainstream coverage on 4S. While I am a private person by nature, I have been quite public the last 12 years and so I knew I what it would be like to go public with something I really shared only with my immediate family and the people I've dated/married.To help you understand, I am a Deputy Attorney General with the California Department of Justice. I practiced civil defense litigation for 18 years, which means I defended the State and its agencies when it got sued for monetary damages, including a myriad of medical cases. For the last 3 years I have done criminal prosecution. I am also an International Swing Dance Instructor. I spent the last 12 years traveling around the world teaching swing dancing to 1000's of people. Everyone who took my classes knew it was a no-gum zone but no one knew why. My personal life had been disceted the swing world from the time I became a champion and started traveling and through divorcing my partner and continuing to teach with him. I was no stranger to gossip and nastiness.So with that in mind, I did the NY Times piece. The next day the Today show asked me to be on and I readily accepted, again knowing what was in store. When 20/20 contacted me, I jumped in with both feet, and spend almost 100 hours with the producers helping them put the show in motion. Why? Because I knew and know that the ONLY way our condition is going to get the scientific research we must have in order to figure out what our problem is and how to FIX it, not mask it, manage it or cope with it, but cure it, is to bring awareness to the general population in order to grow our numbers and with that make it alluring to researchers to want to get their hands on it. That is my mission, my driving force. I have learned to cope quite well with Misophonia, I'd say I have been highly functioning but I don't want to just cope, I want us to know what is the source and how to fix it.When Clyle posted last year about Nuerofeedback, I was intrigued. I decided to save up my money and research the heck out of NFB, given my job I know how to research medical issues and treatments. I became increasingly interested in it and decided to give it a try. As time went on I was impress with the changes, at first better sleep, relief in my left hand's essential tremor, better mood (although I'm most always pretty peppy), more motivation, and then it started, I noticed the noises less and didn't immediately respond with fight or flight to my normal triggers. I was no longer have to cope with it, manage it or mask it. That is huge. That is extraordinary. That is worth shouting from the rooftops over. I know NFB is expensive, especially if not covered by your insurance, I know not every one is willing to do it, but it is extremely promising, and everyone here should be entitled to hear all the details of it and decide for themselves whether it's right for them. I need to say that I have nothing but the utmost respect for Clyle and his doctor. My NFB doctor has spent time speaking to his doctor, as well as everybody's here who is trying it and contacted her. I am forever going to be grateful for his sharing his NFB story with us. I have been speaking to him off this board for over a year now and am very impressed with the lengths to which he attempted at trying to cope, manage and mask his Misophonia. He tried everything for he and his son and never gave up, even when life got very hard and now he and his son are living a Misophonia free life. Clyle and I don't even see eye to eye on NFB, he and his doctor believe it's OCD related, my doctor and I do not believe it is, and yet, we respect each other and see the importance of talking about NFB. Our disagreement over the source only serves to further illustrate just how much we need the research, which is vital to understanding this condition.I could easily continue on with NFB until I reach the point of no longer suffering from any Misophonia (which is where based on my progress so far I see NFB taking me) and walk away from this group in an amazing place in life. But that would not fulfill my mission. My mission is to get every type of practitioner who can help us with this problem involved, get researchers desirous of conducting studies on us to locate the source of our problem in our brain and help the appropriate medical field eradicate it. Only we can do this. Only we can come together and get the scientists and researchers involved. Think of the amazing strides we have made since before the NY Times piece came out? It's absolutely amazing and there's no reason to stop. This is why I created the google discussion group. To create a place where we can talk about ALL forms of treatments because I believe all brainstorming is good, you must throw it all in to the pot, to find the good stuff. And to create a place where we can invite practitioners and researchers to observe, ask questions, discuss whatever it takes to get them interested in us, interested in delving into our condition and eventually become desirous of research. The new google group is Not in competition with this group. Rather it will serve a purpose that, with the membership restrictions here, this group cannot. That is not a slam on this group, it's a simple fact. So please do not be upset with the new discussion group, you can participate in both, or just one, or whatever you like. But the mission is simple: free open discussion of all treatment options with researchers and practitioners admitted to observe, ask questions or discuss at http://groups.google.com/group/misophonia-support. You don't need a gmail email to join, you can join with any email address. I chose google groups because it has less kinks than yahoo and I prefer the way the discussion threads are laid out.I hope knowing who I am and why I'm here and what my mission is, will put those of you at ease who think there's a problem, when really there is none. I intend to co-exist at both groups and move forward toward a cure, yes a cure, I will not settle for less.Heidi

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