American Tinnitus Association's Board Chair on NBC TODAY: Is This the Right Message to Send Out?

Discussion in 'Awareness & Fundraising' started by Ed209, Nov 3, 2018.

    1. TuxedoCat
      No Mood

      TuxedoCat Member Benefactor Ambassador

      Location:
      US
      Tinnitus Since:
      April 2017
      Cause of Tinnitus:
      high frequency hearing loss
      Do you or anyone you know have the substantiation for this?

      There indeed may be 2 populations - one that experienced fleeting or temporary tinnitus for a couple of days after a concert. The other with chronic, permanent tinnitus. I'm fairly certain the definition for tinnitus used for NHANES is that symptoms (ringing) lasting 5 minutes qualifies as having tinnitus. So the distinction is a blur.

      Its those with chronic tinnitus that seek out the help of the ATA and BTA, join those organizations, pay dues etc. They should be the primary focus for those organizations.

      Those who have experienced temporary tinnitus need to heed the warning. The problem is hearing health is not given the same priority as vision and dental care. Most of us have an annual vision test and eye exam and many go to the dentist every 6 months for a cleaning and exam. We learn about that in the primary grades in school. But no-one does anything about maintaining their ears. And I've been told by an audiologist here in the US, that change will have to start with a grass roots movement because there are turf wars among the 4 agencies that regulate audiology and many levels of audiologists and hearing aid dispensers.

      Furthermore, it would be beneficial to talk about avoiding loud noise, etc. to prevent hearing loss and tinnitus. Not just to prevent hearing loss. If that education started at a young age, we probably wouldn't be facing the current uphill battle trying to raise awareness to tinnitus.

      ATA are an enigma.

      TC
       
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    2. Halsy

      Halsy Member

      Location:
      Toronto
      Tinnitus Since:
      Sept. 2017
      Cause of Tinnitus:
      Abscess tooth
      Yeah, just go and and start reading medical papers on tinnitus. Those numbers aren't absolute fact but they're well substantiated and considered the ballpark for the condition itself and those who have intrusive/debilitating tinnitus. If 10% of humanity had really bad tinnitus it would get more attention and money than anything else in this world. Again, unfortunately for us, we fall into an absolute minority.

      Regardless of how your tinnitus came about or persists, the degree of it, or anything else, for most people who have it, it's a minor a problem at best. And because the pathogenesis of the condition is neurological - again, regardless of cause - when you resolve the condition(s) that cause it you resolve the tinnitus - as soon as your brain allows the neural pathways - that maintain tinnitus - to decay. And that's how it works. Barry Keates of Arches suffered from tinnitus for 35 years before it stopped - he's been in remission for over 10 years. Sooner or later it runs out of gas for everyone, it really does.
       
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    3. Halsy

      Halsy Member

      Location:
      Toronto
      Tinnitus Since:
      Sept. 2017
      Cause of Tinnitus:
      Abscess tooth
      Well I wasn't that far off, Greg. And I'd say that 15% really only applies to the first world with our loud cities, concerts, headphones, etc. And yeah, I meant of tinnitus sufferers for whom it's intrusive/disabling it's generally estimated at 1%-2% - which, as I said, is still a metric shit ton of people if consider that to be even 1 percent of humanity - that's still what? 70 million people give or take with severe tinnitus?

      Yet against 7 billion people - most of which are worried about shit like cancer and heat disease, Alzheimer's and Parkison's that tinnitus is just a blip on the radar.

      It's why the old expression in the tinnitus community exists, "You have to get it, to get it." In the grand scheme of things 1%-2% means it's very uncommon.
       
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    4. lymebite
      Vegged out

      lymebite Member Benefactor

      Location:
      United States
      Tinnitus Since:
      2013
      Cause of Tinnitus:
      Unknown
      I would love to see a link or two if you can provide. Not trying to be argumentative, but I have read materials that say the exact opposite, so I would be interested in reading source references to understand this better. For example, there is an article in the current issue of the Hearing Health Foundation magazine (Fall 2018 issue, page 10) that says:

      “Primary tinnitus, or tinnitus with an unknown cause, of a duration of at least six months is a usually permanent condition with no cure currently available.”

      https://view.publitas.com/p222-4764/hearing-health-fall-2018-issue/page/10-11
       
    5. Starthrower
      Wtf

      Starthrower Member Benefactor Ambassador

      Tinnitus Since:
      January 2002
      Cause of Tinnitus:
      Dental Surgery
      We watched A Star Is Born last night. The movie reminded me of this thread by @Ed209. I am beyond dismayed this morning thinking back on what the ATA did to all of us living with tinnitus.

      The opportunity to be heard was muffled out of sight and understanding making the person who is suffering from tinnitus feel more isolated and alone because like in my situation it did not fade away.

      And as usual the incident is forgotten.

      Not by me.

      I am going for a morning run.
       
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    6. david c

      david c Member

      Tinnitus Since:
      01/2012
      The whole "fades over time" argument has been ongoing. The BTA are flatly refusing to withdraw claims about tinnitus fading over time - despite the only evidence they have been able to produce being that a majority of sufferers habituate to tinnitus over time - which isn't the same thing at all - one can habituate to a sound without that sound itself "fading".

      https://www.tinnitustalk.com/thread...say-charities-5-news.33566/page-4#post-416481

      I'd definitely welcome any support to re-challenge both the BTA and the ATA over these unsubstantiated claims.
       
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    7. Starthrower
      Wtf

      Starthrower Member Benefactor Ambassador

      Tinnitus Since:
      January 2002
      Cause of Tinnitus:
      Dental Surgery
      I had a very difficult time watching this movie knowing the ending. It was brutal especially when I am a survivor of suicide and I know every single emotion we go through. I still go through this after several years. And the movie still haunts me this morning. All morning.

      I searched for a clip of when the character Jackson was in rehab and sitting on a bench talking with another man. The character mentions the name tinnitus and pronounced it tin-NIght-tis. The other man correctly pronounces it at tin-ni-tis. And states we cannot fix that Jack.

      And then the character Jackson goes on to explain he probably did it to himself because as a young boy his father had a large radio and he would put his head inside of it and blast it away.

      My point is that I am fucking irate. It was clearly a golden opportunity to have open and honest discussions by the ATA about the severity of tinnitus on millions of people. And those in the minority of tinnitus severity - need our voice to be heard.

      Where is the evidence and facts to support the lies? No one should donate a cent to tinnitus research or the organization. Why? This is something that simply fades away and does not bother the majority of sufferers.

      Shit. I know what goes on from my past experiences. A good old boys club focused not on the members but on some personal agendas to make board member's resumes look better or have some sort of false personal achievements.

      And furthermore @david c, @David has repeatably stated he is looking into the necessary changes and it does not happen over night. It is a process. At the least he stays involved and even gives your questions and statements more time than he probably should.

      We deserve so much better. And when I recently addressed my concerns to the ATA via email I was ignored.

      The ATA ignored and removed posts regarding this issue from members here on Facebook. I don't think the concerns were given any type of attention. Instead the usual candy coating non replies were given and this issue now just put away.

      Blah blah blah blah blahs.

      I am not sure if I should walk away from everything tinnitus or stand up and speak out.

      I remember. I remember what happened to my friend's life and my life. I remember what we tried to do to stop needless suffering but even back then it became unpopular and insignificant and forgotten.

      Please do not respond to me @david c. I know your agenda.
       
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    8. david c

      david c Member

      Tinnitus Since:
      01/2012
      Oh and I know your agenda which is that Americans should be perfectly free to criticise their tinnitus association but British people shouldn't be expected to criticise their tinnitus association. Sorry it doesn't work like that. Check the facts by the way. @TuxedoCat has shown on another thread that the BTA were saying this stuff about "tinnitus noise fading" long before the ATA started using it.

      I have had plenty of experience over many years of the BTA letting us down on research, funding a group of cronies without doing any due diligence on their commercial conflicts of interest while failing to do any - yes that's right any biomedical research.

      Oh and the BTA helping to draft the current NHS definition of tinnitus which states - that "tinnitus is not normally a serious health condition". So @Starthrower you may have every right to be angry with the ATA but actually British users of Tinnitus Talk have a right to be angry with the BTA.
       
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    9. Jazzer

      Jazzer Member Benefactor Hall of Fame

      Location:
      UK
      Tinnitus Since:
      1/1995
      Cause of Tinnitus:
      Noise
      Ridiculous crap - just my opinion!!
       
    10. TuxedoCat
      No Mood

      TuxedoCat Member Benefactor Ambassador

      Location:
      US
      Tinnitus Since:
      April 2017
      Cause of Tinnitus:
      high frequency hearing loss
      @Starthrower

      @David did provide a response to the request for substantiation for the claim that 'in the VAST majority of cases, people's tinnitus significantly reduces or disappears over time.'

      His entire message is in the thread called Tinnitus Sufferers at Risk of Isolation Say Charities | 5 News and it's the one dated Feb 18.

      TC
       
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    11. Samantha R

      Samantha R Member Benefactor Ambassador

      Location:
      Geelong Australia
      Tinnitus Since:
      07/2016
      Cause of Tinnitus:
      Unknown
      We need you to stand up and speak out, I am on your side and in complete agreeance with everything you say!

      I watched A Star Is Born last week for the first time too, and what a golden opportunity for tinnitus organisations to use this to promote the devastation that tinnitus causes.

      We absolutely deserve better than what the ATA is currently delivering, no doubt about it.

      It's an uphill battle, but we have to fight.

      Sam xx
       
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    12. Samantha R

      Samantha R Member Benefactor Ambassador

      Location:
      Geelong Australia
      Tinnitus Since:
      07/2016
      Cause of Tinnitus:
      Unknown
      Spot on. I think sometimes even sufferers themselves misunderstand the habituation process. Just because they have tuned it out, it may seem quieter, but it's actually not. I've seen posts to this effect in other forums.
       
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    13. GregCA
      Jaded

      GregCA Member Benefactor Hall of Fame

      Tinnitus Since:
      03/2016
      Cause of Tinnitus:
      Otosclerosis
      We are trapped by the ambiguity of phrases such as "it gets better with time", as it can be interpreted as "the volume decreases" or "the psychological impact decreases".
       
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    14. Starthrower
      Wtf

      Starthrower Member Benefactor Ambassador

      Tinnitus Since:
      January 2002
      Cause of Tinnitus:
      Dental Surgery
      For me personally this thread is about the movie remake A Star Is Born and how the tinnitus subject was ignored and basically misrepresented by the ATA and the missed golden chance of a life time to address our situations and bring true awareness about tinnitus and WHY research funds are so desperately needed today.

      I am sorry but I have been extremely depressed since watching the movie for two reasons. And I cannot shake the depression in my soul. Yet.

      If something positive had come out of this - and it should have - I would not be so depressed.

      I usually go off alone when I am in this mental space. No one understands the despair of living with the memory of suicide loss. And this movie hit me hard.

      Thank you @Samantha R!! Did the movie hit you the same way? Most people would respond with hate for the character Jack ending his life. They don't understand the underlying reasons. And mental illness is in part the message for most. More focus on tinnitus and hearing loss is needed.

      How? I have tried for the past decade in many different ways. How do we keep up the fight? That is why I came to Tinnitus Talk and found so much going on because of @Markku and @Hazel and @Steve and @glynis and @Ed209 and so many more.
       
    15. Samantha R

      Samantha R Member Benefactor Ambassador

      Location:
      Geelong Australia
      Tinnitus Since:
      07/2016
      Cause of Tinnitus:
      Unknown
      It certainly did hit me in the same way. I don't hate Jack for ending his life, in fact I hate Ally's manager more - talk about kicking someone while they are down...
      Jack had a few problems - his hearing issues and also his alcohol and substance abuse and his ultimate spiral into depression and suicide.

      I can understand why this hits you hard, and I am so sorry for your loss. I do understand to some degree. Very early on in my relationship with my now husband, after he had another binge drinking session, we had a fight. After the fight, he hung himself. I was going to leave the house, but went to check on him. I found him hanging. It can't have been long, but I had to cut him down, get him breathing and get help. I'll never forget seeing him like that, unconscious, blue and I had no idea if he was dead or not when I first saw him. Thank goodness I went to check on him, fate intervened and allowed me to save his life.

      So many of my friends and family were angry with him and called him "selfish" for attempting suicide. I don't see it that way either, so no way was I angry that Jack killed himself. Just so very sad for him and Ally and all those that loved him.
       
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    16. Samantha R

      Samantha R Member Benefactor Ambassador

      Location:
      Geelong Australia
      Tinnitus Since:
      07/2016
      Cause of Tinnitus:
      Unknown
      I've found connecting with like minded people here the best way to start.
      We all get it, we all know what the situation is and what needs to be done.
      I think I've given up fighting battles with those that don't understand.

      For me, it's little things like the video I made, making donations to the various research projects and connecting with people going through the same thing.
       
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    17. Samantha R

      Samantha R Member Benefactor Ambassador

      Location:
      Geelong Australia
      Tinnitus Since:
      07/2016
      Cause of Tinnitus:
      Unknown
      I'm interested in your opinion. I was surprised by how little his hearing loss and tinnitus was included in the movie. In fact, I felt like the biggest issue was his alcoholism and substance abuse. It wasn't clear to me how much the hearing issues affected his life.
      Maybe I need to watch it again, but I thought it played a bigger role in the plot.

      However, I totally agree that the ATA missed a golden opportunity - one that may never come around again - to use this movie to gain some traction in awareness and fundraising. So very disappointing. There is so much hype around this movie, around Cooper and Gaga... but nothing.
       
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    18. Starthrower
      Wtf

      Starthrower Member Benefactor Ambassador

      Tinnitus Since:
      January 2002
      Cause of Tinnitus:
      Dental Surgery
      First @Samantha R I want to just give you a huge hug of understanding. I am so sorry you also experienced this first hand. I am sure the movie really hit you like it did me. And I also was raging mad about the manager that pushed Jack over the edge right when he was making life work out in some way.

      Sometimes I hate to write this but I believe in a spirit guide that has often taken me where I am needed. And you saved your husband's life Samantha and I know how mentally torn down going through this is for us.

      This makes me even more proud of your courage to make your video. And the understanding I have now makes me know why your words seemed to resonate within my soul.

      I agree. My husband and I watched the movie together and he made the comment if he was not aware of my tinnitus and hyperacusis he would not get "that" from the move as a factor in Jack's life.

      And yes, as I wrote above that manager pushed Jack over the edge with his anger about losing money on Ally cancelling shows to spend the summer with Jack. Totally pissed me off because I saw and understood how that took everything he had overcome - away from him.

      I witnessed this happen to my friend at a most crucial time in his life. And that is what pushed him into taking his life. People told him he was worthless and kicked him out of his home to live in a horrible run down hotel room without heat in the winter.

      The ATA really missed that "golden opportunity" to bring about better awareness of tinnitus and hyperacusis and that opportunity will never be available again.
       
      Last edited: Mar 2, 2019
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