The Tinnitus Euthanasia Story of Gaby Olthuis — Questions for Interview with Her Mother

[Hazel]

Hi folks, I'm going to close this thread on the 20th.

If you still have any questions, ask them now!

 

[1000]

How were her last days?

Are you willing to advocate for people who are facing the same kind of agony she was?

How fast was the euthanasia approved?

 

[alex01]

Did Gaby hear her tinnitus outdoors?

 

[TheDanishGirl]

Any news on when this interview will take place and when it is released on here?

 

[Markku]

Any news on when this interview will take place and when it is released on here?

The interview takes place on the 29th of December, but it will take a while to get the footage to me (as it's all done on professional gear with two cameras and huge video sizes), then add the editing time to that (which will take quite a while since it's not a short interview).

Finally, we also have to create English subtitles for it (as the interview will be in Dutch).

It will be a very complex and time consuming project.

The plan is to release the interview during Tinnitus Week 2019 on Feb 4-10.

 

[TheDanishGirl]

Thanks for the info @Markku! A couple of months until release, seems a reasonable time for something so extensive

I will be looking forward to it, that's for sure.

 

[Markku]

Let's all spare a thought for @Hazel tomorrow as she's undertaking a full day's work interviewing Joan van Baarle.

Very proud of our Hazel and her dedication!

 

[Starthrower]

Let's all spare a thought for @Hazel tomorrow as she's undertaking a full day's work interviewing Joan van Baarle.

Very proud of our Hazel and her dedication!

Totally amazing work. Thank you @Hazel and @Markku. The difference you are making for our tinnitus cause is going to help on every single level of awareness.

 

[GregCA]

Let's all spare a thought for @Hazel tomorrow as she's undertaking a full day's work interviewing Joan van Baarle.

Very proud of our Hazel and her dedication!

I'm very grateful & impressed by both of them for conducting this. It's extraordinary, in its literal sense.

 

[TuxedoCat]

@Hazel, it's incredibly brave of you and Joan to do this. At the same time it seems incredibly important that Gaby's suffering and ultimate decision not be forgotten or overlooked.

Without Tinnitus Hub, this would not be possible. Thanks, @Markku.

TC

 

[Hazel]

Hey folks, that was a very long and intense day! I spent 5 hours at Joan's!

We went through the questions while the cameramen set up their equipment. By the way, these were two cameramen who both have had tinnitus for over 20 years and are quite bothered by it; one also has hyperacusis that is getting worse. They did not receive any remuneration, just expenses, and they were quite professional, so we were happy and lucky to find them!

After the equipment was all set up, we started the interview. It went well, I think. Joan came across well and expressed herself clearly (in Dutch, we'll need to translate later). She talked a lot about how Gaby had to constantly defend herself and the lack of support and/or understanding from others about her suffering. But we also touched on awareness raising and many other topics.

We went on for about 50 minutes or so. Then we still recorded some other footage to include in the final product, and Joan did a short video for us in English as well.

All in all, I think it went well, considering that I had never done anything like this before. I had no idea how difficult doing an interview on camera would be. I am worried in retrospect that I made rookie mistakes like saying "uhuh" too much while the interviewee is talking. But the problem was there was no one there as set director; I had to do all of that myself as well, i.e. give instructions to the camera folks, decide when to pause or retake, decide on the right setting, what angles to shoot, etc. So essentially, I was doing two jobs, neither of which I have any experience at, all at once, whilst feeling quite stressed about the whole thing, to be honest.

So ... I just hope the footage turns out half-way decent. I'm reasonably confident there's enough there to create something nice from. But still feeling super critical at the moment of myself, and I just hope all the time and effort we put into this (and more to come: editing, translation, subtitles, etc.) will pay off. Pfew....

 

[Starthrower]

But still feeling super critical at the moment of myself, and I just hope all the time and effort we put into this (and more to come: editing, translation, subtitles, etc.) will pay off. Pfew....

@Hazel what you have accomplished here is beyond wonderful. And I personally thank you. I am very sure this interview will be excellent. Never doubt this. It must have been emotionally draining in many ways for you to actually be in Joan's presence interviewing her over something so...sad.

The story is not an easy one to talk about and I am sure you left feeling very heavy at heart.

So impressed with the professionalism of the crew you put together for this. And that they donated their time.

The photos are so great.

I hope everyone realizes what you have done here. And thank you so much...

Jen

 

[TuxedoCat]

So ... I just hope the footage turns out half-way decent. I'm reasonably confident there's enough there to create something nice from. But still feeling super critical at the moment of myself, and I just hope all the time and effort we put into this (and more to come: editing, translation, subtitles, etc.) will pay off. Pfew....

@Hazel, you did fine, don't stress about it. By time you and Markku, the perfectionists, get finished it will be a masterpiece.

It was really nice of Joan to grant the interview. You all must be so exhausted!

Take care, TC

 

[Layla23]

I am like Gaby and losing hope.

I've read a lot on her story. Her tinnitus and hyperacusis is very similar to mine. But exact in severity. I'm 23. Though I also have visual snow and brain zaps.

I just want to know if she ever tried any form of TRT or sound therapy. I know it's a joke therapy for us in category 4......yet I'm still hopefully it might at least help me a little.

I know the video comes out in February but that's so long from now.

 

[JohnAdams]

I am like Gaby and losing hope.

I've read a lot on her story. Her tinnitus and hyperacusis is very similar to mine. But exact in severity. I'm 23. Though I also have visual snow and brain zaps.

I just want to know if she ever tried any form of TRT or sound therapy. I know it's a joke therapy for us in category 4......yet I'm still hopefully it might at least help me a little.

I know the video comes out in February but that's so long from now.

Please at least hold on long enough to try the Neuromod device, that may drastically help us.

 

[Layla23]

The one from Ireland? I live in the US so I don't think it's available to me.

@JohnAdams

 

[Jack Straw]

The one from Ireland? I live in the US so I don't think it's available to me.

@JohnAdams

It hopefully will be by the end of 2019 or at least beginning of 2020.

 

[JohnAdams]

The one from Ireland? I live in the US so I don't think it's available to me.

@JohnAdams

I know I don't know you personally, but I would help pay for someone to go over there and buy some and bring them back to the US. I would spend all of my money to help this community.

 

[Hazel]

I am like Gaby and losing hope.

I've read a lot on her story. Her tinnitus and hyperacusis is very similar to mine. But exact in severity. I'm 23. Though I also have visual snow and brain zaps.

I just want to know if she ever tried any form of TRT or sound therapy. I know it's a joke therapy for us in category 4......yet I'm still hopefully it might at least help me a little.

I know the video comes out in February but that's so long from now.

Layla, to answer your question: Yes, Gaby did try TRT, which didn't work for her, but no sound therapy because of her hyperacusis.

Perhaps it's good to remember that Gaby really was at the extreme end of the spectrum, and the vast majority of tinnitus stories do not end like hers. Of course, I don't know you, and I certainly don't want to minimize your suffering in any way, but it's very well possible that there is still hope for you, in spite of how bad things seem at the moment.

It will likely be later than February before we can release the video, sorry It's just that the editing and subtitling is still about 100h of work, and we are a very small group of volunteers doing this next to our day jobs. We also have other projects going on like Tinnitus Week. Anyway, we will of course do our best to get it out a.s.a.p. But in the meantime feel free to ask me if there's anything else you'd like to know about the interview.

 

[uae96]

Layla, to answer your question: Yes, Gaby did try TRT, which didn't work for her, but no sound therapy because of her hyperacusis.

Perhaps it's good to remember that Gaby really was at the extreme end of the spectrum, and the vast majority of tinnitus stories do not end like hers. Of course, I don't know you, and I certainly don't want to minimize your suffering in any way, but it's very well possible that there is still hope for you, in spite of how bad things seem at the moment.

It will likely be later than February before we can release the video, sorry It's just that the editing and subtitling is still about 100h of work, and we are a very small group of volunteers doing this next to our day jobs. We also have other projects going on like Tinnitus Week. Anyway, we will of course do our best to get it out a.s.a.p. But in the meantime feel free to ask me if there's anything else you'd like to know about the interview.

Did she have hyperacusis since the beginning of her tinnitus or did it develop later?

 

[Layla23]

Layla, to answer your question: Yes, Gaby did try TRT, which didn't work for her, but no sound therapy because of her hyperacusis.

Perhaps it's good to remember that Gaby really was at the extreme end of the spectrum, and the vast majority of tinnitus stories do not end like hers. Of course, I don't know you, and I certainly don't want to minimize your suffering in any way, but it's very well possible that there is still hope for you, in spite of how bad things seem at the moment.

It will likely be later than February before we can release the video, sorry It's just that the editing and subtitling is still about 100h of work, and we are a very small group of volunteers doing this next to our day jobs. We also have other projects going on like Tinnitus Week. Anyway, we will of course do our best to get it out a.s.a.p. But in the meantime feel free to ask me if there's anything else you'd like to know about the interview.

It's okay!
That answers my question.

Thank you.

 

[Bill Bauer]

The one from Ireland? I live in the US so I don't think it's available to me.

@JohnAdams

Assuming you won't be able to order it online, you (or one of your relatives) might be able to travel there in person and buy it.

 

[JohnAdams]

Assuming you won't be able to order it online, you (or one of your relatives) might be able to travel there in person and buy it.

I can volunteer to travel to Ireland to get some of these things. I'd have to break even though. I have extensive travelling coming up soon, 30+ hours of flying so there's that.

 

[jay777]

@Hazel,

Could you tell me if Gaby managed to sleep at night? And what meds she was on? And thank you for your hard work.

 

[JohnAdams]

Gaby's mother:

If you see this I just want to say my heart definitely goes out to you. Just know that there are many of us here that greatly understand the plight of Gaby and how she could have felt like giving up. Many of us have these thoughts very frequently. You have nothing but my sympathy and understanding.

 

[Hazel]

Could you tell me if Gaby managed to sleep at night? And what meds she was on? And thank you for your hard work.

Hmm, to be honest I don't recall if either of those issues came up. I was so "in the zone" while doing the interview that it's all a bit of a blur tbh.

How about this: After we publish the interview we'll collect any questions left unanswered, and I can pass them on to Joan? I'm sure she would be happy to answer any further questions.

 

[Contrast]

I am sure Gaby's mother would agree with the importance of bio-medical research towards repairing a damaged inner ear to deal with noise induced pain, tinnitus and hearing loss.

Hopefully future research puts an end to suicides caused by tinnitus and other otological issues.

 

[Hazel]

Did she have hyperacusis since the beginning of her tinnitus or did it develop later?

It developed later, after a few years I think.

 

[gorzakus]

@Hazel I bumped onto this thread and read the book written by her mother. One thing I always wondered about was if she thought about cutting her auditory nerve as a last restort? Is this question asked during the interview?

I know there was an experiment where 40 percent went deaf and still had tinnitus but in the other 60 percent the tinnitus was gone.

At least she would have been ridden from her horrible hyperacusis.

 

[Jazzer]

I am very impressed that Tinnitus Talk is openly demonstrating its willingness, ability and determination to address the most severe aspects of this condition.

There are many of us that suffer with extreme forms of this wretched thing, which we absolutely need to see admitted to, and addressed.

Well done to all concerned.