Who Would You Like to Meet from Tinnitus Talk?

#61
attheedgeofscience said:
for instance a Skype group for TT...
Click to expand...
I agree with your post regarding the practicalities of things.

Skype group? That is already going on - people here on TT have set up their own skype groups which inevitably end up going very quiet to non active whatsoever.....there is also already the chat area on here.

Far more important.....we need help and we need to help each other.
I appreciate ATEOS that your leaning is through a medical route for help with T but there are many who say that speaking therapies help them a lot.

Sadly all these methods come with a huge price tag - except for IWLM method.

On the back of @Zimichael post I would like to suggest the following....
a way to meet up and try group therapy for dealing with T.....

@I who love music has started a thread with a method that appears to be helping people. Perhaps a live interactive webinar can be done with IWLM showing and going through his method with the viewers/participants doing it at the same time. (can this be done on skype?)

There could be a Q&A afterwards....the video can be recorded and able to view by those who cannot join the live webinar (not sure re the cost of doing such a thing) and the video can be replayed again and again for those wishing to practice this method. This would be a first for any T forum anywhere in the world and would certainly attract a lot of traffic to TT.

There can be a follow up webinar ........

Would this be a way for us to meet each other whilst trying to practice a way to get through this and out the other side back to normal life again? May help more than we know? A criteria perhaps - guests cannot join in - they must register as members first and if there is expense involved to get this together then maybe each person can donate a dollar or pound UK or euro etc.....

Just an idea and trying to think outside of the box......

I am readying myself to be shot down in flames by my crazy post.

Of course IWLM would need to be able and willing to do something like this and I have not asked him - this came off the top of my head so apologies upfront to @I who love music

Just kinda ties in with who would you like to meet on TT with trying a free method to try and obtain relief whilst giving a potential huge boost to TT.....

I am just a member who wants us all to get better and am not promoting anything except that.

Probably totally barmy idea......
 
#62
amandine said:
I agree with your post regarding the practicalities of things.

Skype group? That is already going on - people here on TT have set up their own skype groups which inevitably end up going very quiet to non active whatsoever.....there is also already the chat area on here.

Far more important.....we need help and we need to help each other.
I appreciate ATEOS that your leaning is through a medical route for help with T but there are many who say that speaking therapies help them a lot.

Sadly all these methods come with a huge price tag - except for IWLM method.

On the back of @Zimichael post I would like to suggest the following....
a way to meet up and try group therapy for dealing with T.....

@I who love music has started a thread with a method that appears to be helping people. Perhaps a live interactive webinar can be done with IWLM showing and going through his method with the viewers/participants doing it at the same time. (can this be done on skype?)

There could be a Q&A afterwards....the video can be recorded and able to view by those who cannot join the live webinar (not sure re the cost of doing such a thing) and the video can be replayed again and again for those wishing to practice this method. This would be a first for any T forum anywhere in the world and would certainly attract a lot of traffic to TT.

There can be a follow up webinar ........

Would this be a way for us to meet each other whilst trying to practice a way to get through this and out the other side back to normal life again? May help more than we know? A criteria perhaps - guests cannot join in - they must register as members first and if there is expense involved to get this together then maybe each person can donate a dollar or pound UK or euro etc.....

Just an idea and trying to think outside of the box......

I am readying myself to be shot down in flames by my crazy post.

Of course IWLM would need to be able and willing to do something like this and I have not asked him - this came off the top of my head so apologies upfront to @I who love music

Just kinda ties in with who would you like to meet on TT with trying a free method to try and obtain relief whilst giving a potential huge boost to TT.....

I am just a member who wants us all to get better and am not promoting anything except that.

Probably totally barmy idea......
Click to expand...
Hi @amandine
@I who love music did mention in one of his support messages about a video. I am doing this method, and have been very grateful for his help. Phil
 
#66
I am going a bit slow at present re the usual T/H "hammerings" of life (CBBS = "Complex Battered Being Syndrome" known to those who followed the Keppra thread). So just a brief comment-analysis...

I agree with @attheedgeofscience that expectations are almost universally "under-met" with getting things done via online forums like this, v. just posting and sharing information. Nature of the beast.
However, for one, this particular thread is in my opinion NOT the one to arrange an actual meetup on. There should be a dedicated thread to that in its own right. I saw this title as a more whimsical thing, thus not real deep in terms of laying out the likelihood or groundwork for an actual get together.

Our plan to meet in Paris is still "hot" in my mind, except the premise for that meeting was to celebrate a cure for tinnitus...and thus, being cured we would not have to worry about a 'noisy city' (though I find Paris much more tolerable than NYC - or did, I should say). I would be there in a flash if that were the case. Who wouldn't be?! We had high hopes from Autifony when that was first posted, and we all know how that has gone "Boom!"

OK, if going back to my original thread (and 'source' for this one) about trying to get more "into reality" for long term T sufferers...A meetup was just one of the ideas, and as such I see it as a spin-off, needing a plan and outline at the outset, before a kind of global wild goose chase happens with people throwing out their locations, or a favorite locations willy nilly.
I have been meaning to get together with @Markku on just that, but have just been too trashed to do it right now. To me though, it is the only way this has any chance of success, over and above maybe a few folks in close locations figuring out a way to get together, etc. Which actually should not be that hard I don't think?!
Hell all you NYC people should be doing that as a matter of course! Why not? Easy re hassle quotient!...Same for others in metropolitan areas with likelihood of a half dozen TT members around. Do it! Great!

For me, to reiterate my initial impetus...I have no interest in webinars, video conferencing, or more "internet" gizmos meeting methods. I'm sick of that. It does not do it for me any more. Nor for those others I referred to. Meeting in person is what we humans have done for eons. And I think we TT folks who are really serious about this can pull it off no matter where we live in the world...Emphasis on "serious". That is going to eliminate 99.9% right there (sorry being a hard arse like ATEOS), but if I would travel half way around the world to meet some other TT folks I believed were serious about what such a meetup could mean, maybe others would be too.

I can outline what I envision such a meeting could be, and how or where that may take place, but in a totally separate thread. That way it would be pretty much only attract those that "get it" and are working towards making it happen. It would automatically eliminate locations like NYC, as anyone who thinks that serious T sufferers would choose to go there for a "break/recuperation/timeout/healing space with others who suffer what they do, etc." are not seeing what I am seeing, or experiencing what I am experiencing.

Ummmmm...yeah, this may sound a bit intense and heavy perhaps, but it does not mean what I am suggesting as a get-together be so. Not at all. But for sure, those who would want what I am envisioning, are going to be motivated to get there or do it because of how intense their T experience is affecting them and their quality of life...and how meeting, in person, may well lead to ideas and changes for improvement in that quality of life. [And maybe on TT and what it can offer too].

Hard core? Yeah maybe...But so be it. This level of T is hard core. That's why it will flush out the candidates that most need or want to meet, despite the obstacles and pain that can cause...just getting there! Thus the "there" will have to be "basically quiet", or have enough secure quiet, just to bloody well recover from the travel. Wherever the hell there is!

So anyhow, I will attempt to muster some basics with @Markku as can think of numerous ways to "cut to the chase" if anyone out there is serious about a more in depth, non fly-by-night, non "quickie", gathering.

Best, Zimichael.
 
#70
I wrote more than 8 month's with Larry, a wonderful person, I met him here on TT.
We wrote eachother and also planned to meet eachother as soon as we should be habituated....

But .... he passed away on January 31th. Could not handle it anymore.

RIP Larry
 
#71
Gabrielle said:
I wrote more than 8 month's with Larry, a wonderful person, I met him here on TT.
We wrote eachother and also planned to meet eachother as soon as we should be habituated....

But .... he passed away on January 31th. Could not handle it anymore.

RIP Larry
Click to expand...
For some people there's no respite from the all-consuming, debilitating effect of tinnitus. I can understand why some people choose to end their lives. We should use these people as examples of the tragedy that tinnitus is, and to raise awareness.
 
#72
Atlantis said:
I can understand why some people choose to end their lives. We should use these people as examples of the tragedy that tinnitus is, and to raise awareness.
Click to expand...

I think the same and I said that many times, not on a public thread though, only in PMs. That's not what we "should do" , but something we are "obligated" to do. For the people who will continue to choose "the permanent silence" while T is not given the attention it must be given.
 
#73
Gabrielle said:
I wrote more than 8 month's with Larry, a wonderful person, I met him here on TT.
We wrote eachother and also planned to meet eachother as soon as we should be habituated....

But .... he passed away on January 31th. Could not handle it anymore.

RIP Larry
Click to expand...
With all due respect I also was and am really upset by what happened with Larry.....he had many friends who knew him personally and posted on his fb page - at least that way we knew it was genuine! Not forgetting his boys who he left behind and now have to live with this for the rest of their lives.
However how is raising the subject of Larry and what happened relevant to this thread and anything other than depressing and reminding of why and how to give up on life once one has bad T? Only makes it worse in my opinion....
 
#74
amandine said:
With all due respect I also was and am really upset by what happened with Larry.....he had many friends who knew him personally and posted on his fb page - at least that way we knew it was genuine! Not forgetting his boys who he left behind and now have to live with this for the rest of their lives.
However how is raising the subject of Larry and what happened relevant to this thread and anything other than depressing and reminding of why and how to give up on life once one has bad T? Only makes it worse in my opinion....
Click to expand...

Please allow me to answer this question for Gabrielle, if she doesn't mind. I find her post very relevant to this thread. From her message
Gabrielle said:
I wrote more than 8 month's with Larry, a wonderful person, I met him here on TT.
We wrote eachother and also planned to meet eachother as soon as we should be habituated....

But .... he passed away on January 31th. Could not handle it anymore.

RIP Larry
Click to expand...

I understand that she was good friend with Larry, so inherently when the question "who would you like to meet" was put and people started to enumerate their friends, she thought that she would have liked to meet Larry. Just the fact that her friend passed away doesn't mean that she cannot say something that implies that if Larry was alive, it would have been him that she would have liked to meet. I think it was a very nice gesture of her to remember him in this list of remarkable TT members.
I do not find her gesture of remembering him as depressing, on the contrary, the idea of excluding him from our discussion about notable members just because he passed away, that I find very upsetting. He is alive in her memory and heart and a member of TT who happens to be on the other side, where we will ALL go, sooner or later.
It was a nice occasion to remember him and I am personally glad that she did it, especially that Larry wasn't properly remembered anywhere on this forum (I only saw a post in some other thread, where he was also an off-topic subject, I suppose)
Eight months of corresponding mean something.
My respect for your sorrow, Gabrielle, and I am sorry you can't meet with the person you would have liked to see at such a meet-up.
 
#75
Dana said:
It was a nice occasion to remember him and I am personally glad that she did it, especially that Larry wasn't properly remembered anywhere on this forum, I only saw a post in some other thread, where he was also an off-topic subject, I suppose.
Click to expand...
Actually I discussed with markku whether it may be possible to have a remembrance or commemoration for Larry on TT and he said that we need the agreement of Larry's family first. I posted on his facebook page plus sent a message to his sister (dont know if she ever saw it (tried sending a friend request to her fb page too but it was not acknowledged) neither was my message to her.
Thus was nothing formal on TT for Larry.
Perhaps any GOOD CLOSE friend of Larry such as Gabrielle or anyone else (as I have tried already) can approach his family and get permission for us to have a remembrance on here? Otherwise you have the answer as to why there was nothing formal for him here.
 
#76
I knew since February that Markku considers that a permission from his sister would be necessary, and since no commemoration was held I kind of figured out that such a permission wasn't obtained, and I also know that Markku wanted a proper commemoration of Larry.
I personally do not understand why such a permission was necessary, but I won't comment about that, as I know how different the views about something may be in different cultures. What may be normal in my culture may be unacceptable in others.
But putting aside my regret that such a commemoration wasn't held, I can't even conceive that Larry's death may become a taboo subject in any thread, or a discussion during a meeting, on grounds that this is "depressing", therefore some kind of a mood spoiler. Any discussion about T within which sad cases are not "suited" to be brought up is not an open, true, sincere, complete and free discussion about T (with all the forms it can take, from mild to brutal). I do not vote for a meeting where only the worst will be discussed either, but for a meeting where EVERY aspect of T can be discussed freely (from the sad cases to the best cases of people who defeated T and live life like they didn't get T)
 
#77
Dana said:
I also know that Markku wanted a proper commemoration of Larry
Click to expand...
Yes I do, and as fate would have it, @valeri is actually trying - as we speak - to make something happen in this regard.

This topic divides opinion greatly. A proportion of members feel that suicide stories don't belong on a support forum. They think that newbies would potentially be distraught by such threads. Others think that not having such discussion on the forum equals to sweeping the darker side of tinnitus under the carpet.

I'm somewhere in the middle; I definitely don't want to upset newbies and in any such threads I feel it should visibly be stated how rare it is for that to happen (nothing in the literature seems to suggest that the incidence of suicide is greater in persons with tinnitus) and what options there are (talking with a professional, contacting suicide hot line, etc), but I also would like to have remembrance threads for those that have left us.

If in a remembrance thread suicide is mentioned, then it should be 100% confirmed before stating that. It's much more likely that if a member of Tinnitus Talk dies, it is for reasons other than self-harm. Assumptions cannot be made. If my loved one died and it was falsely assumed and treated as a suicide, I would be distressed by it.

I also think that suicide as a cause of death is a very sensitive subject to many families. I may be wrong here. But I feel it would be "the right thing" to do to ask a person's family if they felt it was okay to talk about it in public here. Maybe I'm overly sensitive about this - I don't know.

Now, if Larry's family were okay with it, I would love for us to create a little commemorative video about him and his life. It wouldn't need to be long and it could be shared here and on Facebook, YouTube, etc. Maybe include a short interview with his sibling. His family might want to give us pictures and/or video footage of him, which would make it really personal. As far as I know, Larry was a pretty successful professional in his field, and apparently led a happy life before the struggles with tinnitus.

Depending on his family's wishes, that piece could also be a vehicle for tinnitus awareness. We definitely don't want to engage in anything tasteless or sensationalist, it would need to be planned carefully to properly commemorate Larry's memory, first and foremost.

Or just a thread here. That would be better than nothing, absolutely.

May you rest in peace, Larry.

Just my thoughts - doesn't reflect the opinion of the rest of [USERGROUP=4]@Moderators[/USERGROUP].
 
#79
I did also tried to get in contact with Larry's sister, his wife and his two beloved sons. But I quess they did not read it (pm in facebook).

Larry did not want flowers on his funeral.
He asked everyone to donate money to the American Tinnitus Association.
 
#80
I never posted to Lary but my thoughts are with his family and friends.
God Bless ....lots of love glynis
 
#81
I would love to meet @Markku .. Andan thank him for his initiative to make TT possible... It has been a blessing for me and manny... I also would like to @erik .. I'm very thankful for his support and prompt help when I was in distress!!' And most of all @Danny Boy .. Who has been of great emotional support even beyond TT ... I really hope we can all meet one day !!
 
#82
I'm so sorry to hear about Larry. I never posted anything to him, but my thoughts are with his family right now.

@Markku, I do agree that if his family consents, some type of memorial on Tinnitus Talk would be a good idea. Not that we intend to upset people, but it is important to remember those of our members who are no longer with us on this journey.
 
#83
Markku said:
As far as I know, Larry was a pretty successful professional in his field, and apparently led a happy life before the struggles with tinnitus.
Click to expand...
@Markku this is exactly the bit that I find so difficult to cope with.......I mean if Larry with his loving family and successful home and working life couldn't make it .....makes one wonder what chance do those who have less than him (for example not such a strong family or support unit round them) have to get through? Brings with it feelings of desperation and hopelessness and fear. Sorry for being so negative but just expressing human feelings .......
Can it be explained that Larry suffered from deep depression having taken lots of meds which may have had an effect on him. This point has been made to me by other members when we discussed the sad news many months ago.
However, if it is possible to commemorate Larry who, from what I knew of him, was a delightful charming gentle intelligent and loving person, that would be great.
Yes absolutely only something of which his family approves.
How do we go about getting such permission - can we approach his sister (again) or his sons (grown) or anyone else such as a close friend of his to approach the family in the first instance.
Or will we be bringing fresh sorrow to the surface - this is now going on ten months and I am wondering whether we may be causing more grief or whether they may be ready to do this now ....... no easy answers.

Gabrielle said:
I did also tried to get in contact with Larry's sister, his wife and his two beloved sons. But I quess they did not read it (pm in facebook).
Click to expand...
Same as what happened to my messages.....

Gabrielle said:
Larry did not want flowers on his funeral.
He asked everyone to donate money to the American Tinnitus Association.
Click to expand...
I believe that Larry was of Jewish heritage and as such and in usual Jewish custom, flowers are not laid at the grave but stones. Of course this is fluid as some Jewish families are now laying flowers. Larry may not have been a practicing Jew himself but the whole family and older generations may very well not want flowers at a Jewish burial (again cremation is not custom in the Jewish culture)...Saying that Larry wanted donations to the ATA means that his death and funeral arrangements were well planned. You see it is just too upsetting. Sorry.......I am not as brave as you all.....
 
#84
Yes, it was 'planned'. He wrote me he was not happy.

That means, he did not actually want to leave his sons. He loved them so much.
In fact he did not want to die, but he did want an other life.
But he wanted to live without T and depressions.
And when you're gone.... there will be no T and depressions anymore.

I will always cherish his letters and poems he wrote to me, which I received in my inbox.
 
#87
I wish people who have passed to the other side could tell us if it feels better there.

People die of cancer all the time and many of those people are highlighted by the media. I think tinnitus is a taboo in people's own minds! How many have told their friends and colleagues about this condition? And how many cancer patients have told? A lot more!

I would love to meet @I who love music who is really encouraging with his Back to Silence program even if it doesn't work for me.
 
#89
@Markku
Back in February when we talked about this I didn't understand why you considered the permission of the family is needed, now I do. I totally understand your point of view
Markku said:
If in a remembrance thread suicide is mentioned, then it should be 100% confirmed before stating that. It's much more likely that if a member of Tinnitus Talk dies, it is for reasons other than self-harm. Assumptions cannot be made. If my loved one died and it was falsely assumed and treated as a suicide, I would be distressed by it.

I also think that suicide as a cause of death is a very sensitive subject to many families. I may be wrong here. But I feel it would be "the right thing" to do to ask a person's family if they felt it was okay to talk about it in public here. Maybe I'm overly sensitive about this - I don't know.
Click to expand...
and I totally agree with it. I apologise for my not realising that talking here is literraly "talking in public". I think that the need for a private section not available to public and newbies is felt more and more. People can talk privately in PMs but only up to 4 participants. A section where private discussions can take place among more than 4 people, like a separate private section of the forum, I think it's a good idea. It's not my idea, but I adhere to it completely.
 
#90
@amandine
I didn't realise why you are afraid to read anything about Larry, but your last post made me understand.
amandine said:
if Larry with his loving family and successful home and working life couldn't make it .....makes one wonder what chance do those who have less than him (for example not such a strong family or support unit round them) have to get through?
Click to expand...

amandine said:
.Saying that Larry wanted donations to the ATA means that his death and funeral arrangements were well planned. You see it is just too upsetting. Sorry.......I am not as brave as you all.....
Click to expand...

I owe apologies for not understanding you either.
You were not afraid that a sad subject like Larry will spoil some better mood, but afraid that it will destabilize an already fragile state of equilibrium. Please forgive me that the high number of your posts made me mistake you for a veteran, when in fact you are a newbie. I am way more weather beaten than you, developed a thicker skin in the process, and maybe I got used to deal better with things that in previous times, when I was still delicate like you, would have horryfied me and thrown me over the edge. I am sorry.
 

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