It's a shame you see things so personally. I've got absolutely nothing against you at all, but am trying to show you what you're up against. I'm on the side of anything that helps tinnitus sufferers, but I'm also a realist.
All I've tried to do is get to the bottom of what it is what you want us all to do, as you've never given a call to action. Did you want to set up a petition or something?
It's key that you contact Frequency and speak to them. Doing something outside of their control might not go down too well with them, and may create bad relations. You have to see it from their point of view; they know what they are doing and have a team of experts around them. By doing some kind of public campaign without their consent you may actually achieve the opposite to what you're intending.
I have no problem with you personally, but debates will happen on stuff like this. If you think I'm bad what do you think the FDA will be like?
I'm sorry man. I take that back. I'm just in a dark place. My life is 1000x harder than it should be. A year before I got tinnitus i had to fucking watch hospice euthanize my father with a weeks worth of morphine, and he wasnt even in any pain. He couldnt talk or really even move because my stepmother started poisoning him ten years prior and 3 years into it she put him in a nursing home and the she got caught red handed putting pills in his mouth by a nurse. He never was diagnosed with any known disease and the doctors couldnt determine the etiology of his nervous system problems. When my stepmother got caught putting pills in his mouth she even dropped them all over the floor and the nurse called adult protective services, they never even tried to determine what the pills were or test my father for any type of poisonous substance. They just put a court order on the bitch to not ever be allowed to be around him alone or feed him anything. After that he stopped getting worse, but he was already fucked, couldnt walk, couldnt talk, couldnt feed himself. She manipulated some of the nurses to let her be with him alone, and other nurses told me about it and I caught her on video violating the court order, she accused me of physically threatening her, which didnt happen, and I had it on video nevertheless she still dragged me into court to sue me for harassment. the video exonerated me and I turned around and got legal custody of him because she was obviously pulling shenanigans and the judge agreed with me. I instantly got all of his medical records and started trying to unravel what was going on with him. That's when I discovered he had no real diagnosis and everything my stepmom had been saying about his condition was a lie. She had been lying to me, my family, everyone. Telling them one thing, me another. The day I won custody of him she turned around and somehow had him put on hospice. She then was going to the nursing home and pinching and scratching wounds on him to make him grimace and then claim he was in pain and to call hospice and give him pain management, morphine. I know she was doing that because the head nurse told me she was doing that and because I had custody of him I even got a copy of the incident report they filed when they saw her doing that. So she somehow kept convincing the hospice nurse to give him morphine and he stopped eating and died right in front of me on Christmas day.
Never once did anyone involved except me, contact the police. She turned my fathers side of the family against me and accused me of making this all up, even though it was all documented. One time we were in court again and she was trying sue me for harassment and my family was there on her side complety unaware of what was really going and I asked my lawyer to bring up the existence of the court order against her from where she was caught by a nurse putting some mystery pills in his mouth and as soon as my lawyer tried to bring it up she started flipping out in the courtroom and her brother/lawyer somehow got the whole trial shutdown right there on the spot and I'm pretty sure her brother/lawyer and the judge were both members in the same fraternal organization.
I had the adult protective services report, I had a copy of the court order against her to not be allowed to be around him alone. I had the report from the nursing home that stated she was purposefully hurting him. I could never get the police to get involved. My family still thinks I made all of this up and that she is an angel.
So I know how stupid people are. I know how apathetic people are to human suffering. I know how evil some people are. I understand suffering. I spent years sitting with my dad in a nursing home, in the dementia alzheimers wing. It was so fucking sad and my dad was young too. The youngest person there. Several of his nurses even confided to me they also thought she was poisoning him. When I tried to tell is actual doctor about my stepmothers shenanigans he just looked at me like I was stupid even though he didnt know what was wrong with him.
So now i have fucking tinnitus, a young son, and a very complicated job. and theres a radical new drug that may cure that and give us our lives back, maybe. But it's going through a ridiculous regulatory process and dont you dare defend it because I'm not the only one that knows it's too slow.
A Nobel prize winning economist shares my opinion.
Congress shares my opinion.
The president shares my opinion.
That should be a given in this entire community. To defacto be FDA protesters.
We dont deserve this. Many of us stumbled blindly into it, others got it from their medications.
You seem to have more influence than most of us here so why arent you fucking blasting the ATA and BTA for not getting on the bandwagon to hurry up the drug development and approval process?
Instead they tweet promotional material for lady gaga movies and claim tinnitus just fades away. Theres alot more we could do.
There are 16 humans with this new drug in their heads and the 6 million dollar question is "does restoring hearing cure tinnitus"? I want to know that and so should you. The only reason it's a mystery, or will be one after this year is because of the FDA secrecy bullshit.
Who knows, they may actually report that at the end of this trial, but what I'm saying is, if they dont, we need a coordinated effort to step up and ask them.
I'm more than willing to lead an advocacy movement but I have zero influence. I dont have millions of dollars, I dont have any connections. I dont have Twitter followers. You on the other hand could promote this. The leaders of the tinnitus community will listen to you. If you decided to we could create some bad publicity for the ATA and BTA unless they do what we want. They are supposed to serve us anyway. Not us them.
That's my rant.
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