Dave’s Tinnitus Story

Discussion in 'Awareness & Fundraising' started by Jazzer, Feb 3, 2019.

    1. Lane

      Lane Member

      Tinnitus Since:
      February, 2018
      Cause of Tinnitus:
      Ototoxic Drug
      Hey Dave, I very much appreciate your video, AND your decision to make it widely available. Thanks for posting it; I feel it will almost assuredly touch many people's lives in a positive way (quite apparently, already has). I agree with others who said it took courage to share your story with the world.

      If I may--I could see the joy in your face of a life well lived. I also could see the sorrow and pain of tinnitus, and the losses in has inflicted on your life. But, I also saw a dignified grace as you choose to "live the best way" you can, which I truly admire. Takes courage to do that my friend (and lots of supportive love as you often allude to). -- Thanks again!
       
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    2. AUTHOR
      AUTHOR
      Jazzer

      Jazzer Member Benefactor Hall of Fame

      Location:
      UK
      Tinnitus Since:
      1/1995
      Cause of Tinnitus:
      Noise
      Thank you Lane.

      I was determined to ‘tell the truth’ of just how horrible this ‘thing’ is.
      At the same time I felt quite a responsibility to every sufferer to show that, even though we have lost so much - for me, my peace and quiet, my entire way of life, my total income, my beautiful jazz making passion - the best way forward, in fact the only way forward, is too find a personal adjustment to it, and to embrace other things, family.....er......have I mentioned pussycats yet?.....and the huge challenge of still making something of our lives.
      I always took tremendous pride in my artistry;
      I now need to take pride in my ability to survive this ‘thing’ well.

      I really appreciate your response my friend,
      Dave x
      Jazzer
       
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    3. AUTHOR
      AUTHOR
      Jazzer

      Jazzer Member Benefactor Hall of Fame

      Location:
      UK
      Tinnitus Since:
      1/1995
      Cause of Tinnitus:
      Noise
      As promised a handful of Facebook responses to ‘Dave’s Tinnitus Story’ video.
      7E360A6E-995B-4384-8699-279E0B88BA0C.jpeg
      I have copied and pasted these responses verbatim and just removed the names.

      Truly an informative vid. It not only showcased that wonderful sense of humor, amazing musical talent and kind heart but an educated response to a much misunderstood ailment. (Pics of fur babies were great too) Thank you for sharing your wisdom.

      Dave, I have just now had the opportunity to watch your Tinnitus video. My heart breaks for you - to give up something in your life that was SO important - your music. I can't begin to imagine what my life would be like without my music....My husband suffers from tinnitus. When he was in the Army, they fired the "Little John" rockets. The army's idea of ear protection back then (in the 60's) was a cotton ball swabbed in petroleum jelly. DUH!!! Then, after the Army, he became a policeman. Did a lot of shooting - handgun, rifle, shotgun. Also, he got into police combat shooting. Again, no ear protection back then. So, the damage was done. His tinnitus is a constant high pitch ringing in his ears.
      Thank you for making the video..I know it was difficult for you to get through it at times.

      Thank you. I'm sorry and I'm grateful for your story. We know many will benefit from your story. You two touch our hearts again with your love and caring. Forward with research!

      I'm a retired nurse and found this video very helpful for teaching those who are initially diagnosed with tinnitus. I'll be sharing it with my nurse friends. You obviously did your homework!

      Dave x
      Jazzer
       
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    4. annV
      Fine

      annV Member

      Tinnitus Since:
      2005
      Cause of Tinnitus:
      unknown - possibly hereditary
      My heart skipped a beat reading the lovely feedback you received. YOU deserved it. Go Dave!
       
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    5. AUTHOR
      AUTHOR
      Jazzer

      Jazzer Member Benefactor Hall of Fame

      Location:
      UK
      Tinnitus Since:
      1/1995
      Cause of Tinnitus:
      Noise
      A few more responses to our video.
      These are from abroad - wherever that is
      - and I love the broken English.

      “With a lot of attention I have been listening to your story. I think it’s very handsome that you can explain it all. A lot of strength I hope you can give it a place, and also find it very unfortunate that you can’t play music anymore.
      You’re a Champ!”

      “I usually write in Dutch because my English is not sufficient. Dave I have great admiration for the way you tell what Tinnitus has impacted on your life.
      The tears were all over my cheeks.
      I wish you a lot of strength and then more strength.”

      “Thank you for sharing my husband suffer for it . I will tell him about the awesomeness group don't think he knows of it. his is work in a factory related and I'm always telling the younger ones where I work to wear ear protection . I will share the clip thank you for trying to making people aware keep up the good work Dave ”

      @Markku - did you appreciate my plug for
      Tinnitus Talk - now known as ‘The Awesomeness Group?”
       
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    6. PDodge
      Cowboy

      PDodge Member Benefactor

      Location:
      Woods of Alberta
      Tinnitus Since:
      01/2017
      Cause of Tinnitus:
      Bear ate my Cochlea
      Thanks for sharing this @Jazzer. I'd love to play music again...

      Bass-Clef-Decal-Sticker__22552.1511156076.jpg
       
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    7. Markku
      Inspired

      Markku Founder Staff Podcast Patron Benefactor Hall of Fame Advocate

      Tinnitus Since:
      04/2010
      Cause of Tinnitus:
      Syringing
      I absolutely - and humbly - did!

      But hey, without folk like you Dave enriching it, it wouldn't be The Awesomeness Group! And let it be stated that you not only make the online group better, but you also have extended your presence at important events! You do know everyone told me you were awesome at the BTA Expo! While of course wearing the Tinnitus Hub t-shirt! :rockingbanana:

      No question about it, as others have said, you present yourself on video so breathtakingly well. Not everyone is able to do that. What a massive tragedy it would have been if you hadn't published this! The comments you have received speak for themselves.

      :thankyousign:

      jazzer-dave-1.jpg

      jazzer-dave-2.jpg
       
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    8. AUTHOR
      AUTHOR
      Jazzer

      Jazzer Member Benefactor Hall of Fame

      Location:
      UK
      Tinnitus Since:
      1/1995
      Cause of Tinnitus:
      Noise
      Hi bud
      - a crying shame for us both.
      But what can we do.
      All I can think of is still to make
      something of the rest of my life.
      Best wishes PD,
      Dave x
      Jazzer
       
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    9. AUTHOR
      AUTHOR
      Jazzer

      Jazzer Member Benefactor Hall of Fame

      Location:
      UK
      Tinnitus Since:
      1/1995
      Cause of Tinnitus:
      Noise
      @Markku,

      Thanks Markku - I’m just so pleased that with the help of my great mate, photographer and director, Phil Swallow, and his lovely misus Sue, who was in charge of the Kleenex tissues, we produced something worthwhile.

      Dave x
      Jazzer
       
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    10. TuxedoCat
      No Mood

      TuxedoCat Member Benefactor Ambassador Advocate

      Location:
      US
      Tinnitus Since:
      April 2017
      Cause of Tinnitus:
      high frequency hearing loss
      Wow, that is very touching. It was very nice of her to let you know about it.

      Messages like this really drive home the point that stories like yours need to be told.

      Hat's off to you, Phil and Sue Swallow for getting the message out.
       
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    11. AUTHOR
      AUTHOR
      Jazzer

      Jazzer Member Benefactor Hall of Fame

      Location:
      UK
      Tinnitus Since:
      1/1995
      Cause of Tinnitus:
      Noise
      Just a few more responses from people who have found this video helpful...

      *If you have a spare few minutes sit down with a cuppa and watch this. I feel blessed to have shared the bandstand with Dave Hewett on a few occasions. (Wish it had been more)
      He is one of the many in the jazz world who have been very encouraging on my journey in this great music. A top guy and player who’s jazz career has been finished far too early due to Tinnitus.
      Touching video and also hits home why we should take a little more care with our lugholes!

      *Listened to it all. So sad that your stellar career was lain low, but at least I did have the joy of knowing you while you were still playing. An inspired solo at the end of the video. We miss your playing.

      *I must admit I knew little about Tinnitus but was aware that it ended the career of one of the best jazz trombonists around. This remarkable video explains this debilitating condition. Thanks for raising awareness Dave Hewett.

      *What a good explain. From Tinnitus... I know I am going sometimes crazy of the noise.. piping and zooming and blinking when I am going to sleep.. I am always tired . Not only because the fibromyalgia. Also from this...sound.. god bless you. Dave ❤

      *What a wonderful person you are to do this video! It is very helpful to understand what you and others endure. I have a friend in Chicago that was just diagnosed with this condition. When I was told about it, I knew what it was because of your previous communications. But this video really puts some perspective on what you and others endure. I have shared your video with him and friends for better understanding. Thank you so much for doing this. I know so much more about you now and consider you a dear friend. Just know that your video will definitely help others! Well done! I love that the kitties are there to help... just like when we were kids.
      Love to you and Sylvia.
       
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    12. Starthrower
      Wtf

      Starthrower Member Benefactor Ambassador Hall of Fame

      Tinnitus Since:
      January 2002
      Cause of Tinnitus:
      Dental Surgery
      @Jazzer :huganimation:

      You have touched people's lives because of your courage to step forward and speak out. Thank you.

      Not to forget your smile. :rolleyes:
       
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    13. AUTHOR
      AUTHOR
      Jazzer

      Jazzer Member Benefactor Hall of Fame

      Location:
      UK
      Tinnitus Since:
      1/1995
      Cause of Tinnitus:
      Noise
      @Starthrower,
      when my mate did a photo shoot he said,
      “Dave - I need a ‘smiley’ picture.”
      I said “I’m sorry Phil - I never could smile to order - I can’t do it.”

      He set up the camera and just looked at me for a good couple of minutes.
      When he got tired of waiting, he said,
      “.....er.....some teeth would be nice...”

      That statement was so clever, I laughed like a drain....and he got his smile on the way down!

      B7EF4793-B5EB-4228-90F5-5BC4B6EEF6AC.jpeg 1BDFE396-0835-4E8F-94BF-055C3413939C.jpeg
       
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    14. AUTHOR
      AUTHOR
      Jazzer

      Jazzer Member Benefactor Hall of Fame

      Location:
      UK
      Tinnitus Since:
      1/1995
      Cause of Tinnitus:
      Noise
      One more batch of responses to our video,
      then I’ll call it a day.
      Don’t want to bore the pants of anybody....x

      *Dave has made me realize how important it is to protect my hearing. If I go anywhere with hard music, I have my earplugs. Most people find it weird and exaggerated - but that doesn't interest me at all.
      Thank God tinnitus has been spared me so far and I have often exposed my hearing enough to loud music, especially in the time, that I was in a music shop.
      Please check out the video of Dave and share it! Thank you....

      *Of all the shares I’ve posted on here, few, if any, are more important than this one. I’ve had low-level tinnitus for years now and it hasn’t got any worse, thankfully. It’s made me much more careful about my lugholes and watching Dave’s video here serves to emphasise the danger we face as musicians .

      *This is great for awareness building Dave. We jazz musicians are not looking after our ears properly. I left the army with tinnitus and now try to manage it ongoing to stop it from becoming a worse problem. Your story needs to be out there to help musos understand the issue.

      *I have it from being hit by a car and landing on my chin. It shoved my jaw back and I got TMJ also. Mine is the high pitched eeeeee Dave said. No fun. Sorry you suffer from this Dave.

      *Thank you for sharing your story with us Dave, very moving. We have fond memories of your fantastic performances on the jazz nights at Sylvie's Place. Big hugs Barbara x

      *Im glad you made this video. I have had to deal with Tinnitus for over 20 years. I am 62 years old. I have tried a couple of different hearing aids, but they didn't block out the noise. It started out quiet one day and over the years its gotten louder. I have the high pitch noise constantly. Doctors have told me I will have this all my life. I may eventually go deaf. It's hard to hear people especially when I am in a crowded place like a restaurant. I had to learn how to live with it.

      *Thanks for sharing this video Dave & “company”. So much I never knew about this condition. I’m so sorry you’re going through this and had to give up something you love so much, but the way you’ve handled it is an inspiration to all.

      *Thank you. I'm sorry and I'm grateful for your story. We know many will benefit from your story. You two touch our hearts again with your love and caring. Forward with research!

      *Dave, I never knew about tinnitus before, thank you for sharing your incredible story. You have had a wonderful life, and I didn't know what a celebrity we have been texting too. And we were giving all the credit to Percy!!! Thank you again.
       
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    15. Jcb
      No Mood

      Jcb Member Benefactor Hall of Fame

      Location:
      UK
      Tinnitus Since:
      December 2017
      Cause of Tinnitus:
      possible TMJ, came on after severe cold and chest infection,
      @Jazzer much respect my friend, got me a bit emotional. It hits home especially when you think you may never hear silence again. You are a gent my friend.

      Then of course you have to post your “catalogue modelling” pictures ;)

      In all seriousness I enjoyed that, I’m happy you decided to post it.
       
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    16. AUTHOR
      AUTHOR
      Jazzer

      Jazzer Member Benefactor Hall of Fame

      Location:
      UK
      Tinnitus Since:
      1/1995
      Cause of Tinnitus:
      Noise
      It is only by raising awareness that civilians (those not conscripted into the tinnitus brigade) will have any real idea of what it is we suffer and how we have to live, and consequently how we should be treated and respected.

      I do not believe in hiding the truth.
      It is only the truth of this condition that will raise awareness and stimulate preventative attitudes in those at risk - i.e. everybody.
       
    17. AUTHOR
      AUTHOR
      Jazzer

      Jazzer Member Benefactor Hall of Fame

      Location:
      UK
      Tinnitus Since:
      1/1995
      Cause of Tinnitus:
      Noise
      @CrystalB
      Dear Crystal
      I saw your comment about relationships.
      I made this video to explain to partners and others what we are going through.
      I wonder if watching it might help.
      Best wishes
      Dave x
      Jazzer
       
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    18. CrystalB

      CrystalB Member

      Tinnitus Since:
      11/2017
      Cause of Tinnitus:
      Unknown
      Thank you for sharing this! It does help!
       
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    19. AUTHOR
      AUTHOR
      Jazzer

      Jazzer Member Benefactor Hall of Fame

      Location:
      UK
      Tinnitus Since:
      1/1995
      Cause of Tinnitus:
      Noise
      Because I use my iPhone and my iPad almost exclusively - my misus being permanently on the computer, for business reasons - I was not aware of the reviews that the video had received on YouTube, as these gadgets don’t give that information.

      There are two or three unfavourable reviews stating that ‘a totally negative video helps nobody.’

      That comment is fair enough - and I obviously understand what the reviewer means.

      However - when I made it I was quite determined to be honest about this very nasty condition, and to ‘say it like it is.’
      I could hardly come out and say,”Hey guys - I’ve got tinnitus - but no sweat - nothing to worry about folks - I’ve lost my career - I live permanently in noise - but so what - everything’s gonna be Hunky-Dory guys!”

      My own feeling is that it is not ‘a completely negative video.’
      It is essentially a sad story of course, but it portrayed a sufferer who is clearly surviving, coping, and coming through.
      I did mention certain therapy possibilities, and directed viewers to Tinnitus Talk for support, and donation opportunities.

      It is only in stating the possible severity that there can be any deterrent effect.

      The reviewers recommended Julian Cowan Hill’s video, also stating that sufferers can get completely better, the noise goes away, and there are plenty of good treatments out there.

      My opinion is that these reviewers do not have tinnitus, certainly have no idea what severe tinnitus is, and consequently would not have any clue as to whether any treatments are efficacious or not.

      When videos on motor neurone disease are made, the truth of the matter can not be avoided the damage is only too obvious for the entire world to see.

      Because we all look pretty well completely normal perhaps we should comfort the rest of society, and keep our inconvenient traps shut?
      Gloss the whole bloody thing over, and pretend ‘it’s nothing much to worry about folks.’
      I do not condone that - no way.
      Society needs to know!

      If any members on here care to give me some feedback, I would very much appreciate it folks.
      Please be totally frank with me.
      I’m a big boy now - ‘I’ve been kicked up the Cods before.’

      Thanks
      Dave x
      Jazzer
      ACE3EC05-E131-4932-B9D3-0152ECF1EF77.jpeg
       
      Last edited: Mar 6, 2019
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    20. TuxedoCat
      No Mood

      TuxedoCat Member Benefactor Ambassador Advocate

      Location:
      US
      Tinnitus Since:
      April 2017
      Cause of Tinnitus:
      high frequency hearing loss
      3 unfavorable vs numerous favorable.

      10% of the population are assholes, they were bound to show up sooner or later?
       
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    21. Markku
      Inspired

      Markku Founder Staff Podcast Patron Benefactor Hall of Fame Advocate

      Tinnitus Since:
      04/2010
      Cause of Tinnitus:
      Syringing
      To be totally frank with you, Dave - don't give a hoot!

      Every single time we try to raise awareness of tinnitus (like on Facebook where we have published many videos showing the gruesome nature of tinnitus), we get a small percentage of comments saying we're doing more harm than good by sharing these kinds of stories.

      I shrug my head in confusion and think to myself, should we then try to raise awareness by showcasing only positive happy-go-lucky habituation stories?

      You did very well with your video. Pay no attention to naysayers. Don't let it get under your skin.

      I can almost guarantee you those people have done nothing for our shared cause, unlike you who put yourself out there, in your vulnerable state.
       
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    22. AUTHOR
      AUTHOR
      Jazzer

      Jazzer Member Benefactor Hall of Fame

      Location:
      UK
      Tinnitus Since:
      1/1995
      Cause of Tinnitus:
      Noise
      Markku - you have no idea how much I needed to hear somebody say that to me.

      I said I’m a big boy now,
      - but you know what I mean buddy.

      Dave x
      Jazzer
       
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    23. DaveN
      Stressed

      DaveN Member

      Tinnitus Since:
      9/2018
      Cause of Tinnitus:
      Ramsay Hunt Syndrome
      Awesome video. This hits close to me, I've been an active musician since I was roughly 18 or 19 (35 now for reference).

      I have said to so many people how much I miss just being able to sit in silence.
      Thank you for posting this, I'm sure it wasn't the easiest thing in the world to do.
       
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    24. Jcb
      No Mood

      Jcb Member Benefactor Hall of Fame

      Location:
      UK
      Tinnitus Since:
      December 2017
      Cause of Tinnitus:
      possible TMJ, came on after severe cold and chest infection,
      I pretty much agree with what Markku said mate, I wouldn’t give a flying bleep bleep bleep.... bleeeeeep

      You put yourself out there and came across really well. You will always get people who don’t agree with you or just simply don’t understand, as you know that’s part of life so don’t let that affect you.

      I think what you did was brave Dave (oh that rhymed I’m a poet and I didn’t even know it) some people just like to troll especially the land of the internet. It had a good message and was put across without any BS, well done my man.
       
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    25. Ed209

      Ed209 Member Podcast Patron Benefactor Ambassador Hall of Fame

      Tinnitus Since:
      07/2015
      @Jazzer, these comments show a lack of understanding and as others have said it should be like water off a duck’s back. When I did a promotional thing a few months back, I had comments that mirrored these so I tried to educate them. Ultimately, people will always think they know best as humans are inherently stubborn.

      I thought your video was perfect and couldn’t see anything wrong with it at all. I wish more would make a film like yours as it gives people a view behind the curtain so to speak, and it also shows an emotional aspect that connects with others on a much deeper level.
       
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    26. AUTHOR
      AUTHOR
      Jazzer

      Jazzer Member Benefactor Hall of Fame

      Location:
      UK
      Tinnitus Since:
      1/1995
      Cause of Tinnitus:
      Noise
      @Ed209
      Thank you Ed.
      I just believed it was right to ‘tell the truth.’
      So it is one of the truly nasty illnesses with an unpalatable aspect to it.
      Would it be right to lie about that?
      Every single person on this website knows that there is currently no cure.
      I tried to make a balance between,
      yes it is nasty,
      and yes you can live with it.
      Perhaps if Mike Barker knows there is a cure, he could be persuaded to let us all in on the secret.
      Thanks again Ed - I appreciate it.
       
    27. Lane

      Lane Member

      Tinnitus Since:
      February, 2018
      Cause of Tinnitus:
      Ototoxic Drug
      Hey @Jazzer

      I want to add my voice to those of others in support of your video. -- Something to always keep in mind is that there will always be naysayers. And often the greater the accomplishment--such as your life story, and you're subsequent video--the more likely it is those with no sense of accomplishment, or poor self-image will mindlessly attack it. The criticism has little correlation to the accomplishment itself, but is a pseudo-boost to somebody else's sense of themselves.

      I notice this all the time. I grew up in Wisconsin, US, and have always been a Green Bay Packer's fan. The current quarterback Aaron Rodgers is widely considered to be one of the best quarterbacks of all time. And yet former teammates and other NFL fans for some reason love to criticize him. If he was a lousy quarterback who never did anything, they would just leave him alone, as criticizing him wouldn't artifically boost their self-image nearly to the degree they can by criticizing someone who's often considered to be an all-time best.

      BTW, he does have teammates who feel the criticism is ridiculous. They note the media always seem to give negative (controversial) stories much more play than to positive stories. I think you get the picture. It's an almost a universal "human trait". No matter how great the accomplishment, the critics will come out. I once heard a humorous definition of a human being: "An ego-defending mechanism". Ain't it the truth? -- Ignore any pseudo critics. Though you may decide a certain amount of compassion for them and their foibles would be appropriate. -- All the Best!
       
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    28. Starthrower
      Wtf

      Starthrower Member Benefactor Ambassador Hall of Fame

      Tinnitus Since:
      January 2002
      Cause of Tinnitus:
      Dental Surgery
      @Jazzer I agree your video was not negative but rather informative for people. And it showed your smile:rolleyes:

      That person's reply was stupid.

      I think my story I submitted was way too depressing to be considered. And I would have most likely been given horrible responses rather than understanding.
       
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    29. AUTHOR
      AUTHOR
      Jazzer

      Jazzer Member Benefactor Hall of Fame

      Location:
      UK
      Tinnitus Since:
      1/1995
      Cause of Tinnitus:
      Noise
      Dear Star - you are always so supportive of me, which is lovely.
      Of course I do not know your story, except I have picked up that it was hell on earth.
      I know it might be harrowing to read, but you would always have my love and support, without question.

      Dave x
      Jazzer
       
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    30. OnceUponaTime
      Fine

      OnceUponaTime Member Benefactor Hall of Fame

      Location:
      New York
      Tinnitus Since:
      11/11
      Cause of Tinnitus:
      Allergies or Acoustic Trauma, Stress
      So proud of you Dave! Like I said before, the video is excellent.
      The feedback is wonderful.
      You will always find naysayers in this world.... pay no attention.
      They never accomplish anything.

      {{{Big Hug}}}
      Once
       
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