‘Rock singer’s hearing loss is an important moment for change’ by Stu Nunnery

Here is one of the many vital reasons why each and every one of us needs to look after and protect our hearing, written by Stu Nunnery for the Hearing Like Me blog.

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The lead singer of rock group AC/DC, Brian Johnson, was told recently by his doctors that he risked total hearing loss if he continued to tour and perform with the band. What seemed like an individual musician’s tragic heartbreak has turned into a cause célèbre and is resonating throughout the music industry. And that’s a good thing.

Specifically, Johnson was advised that if he continued to perform at large venues, he risked total deafness. He later told Rolling Stone magazine, “While I was horrified at the reality of the news that day, I had for a time become aware that my partial hearing loss was beginning to interfere with my performance on stage. I am not a quitter and I like to finish what I start, nevertheless, the doctors made it clear to me and my bandmates that I had no choice but to stop performing on stage for the remaining shows and possibly beyond.”

But many things have been said since then, that has brought into view a slew of issues that all musicians, those who listen to music, and those who attend concerts might keep in mind – for the “times, they are a changin’.”

Denials, disclaimers, accusations, medical claims, offers of help and proactive moves have flowed in as a response to the rock singer’s hearing loss predicament. There’s even been some fun thrown his way when it was satirically announced that AC/DC would “replace a singer who could not hear with a singer who could not sing.” (Axl Rose of Guns and Roses)

Later, in an interview with a friend, Johnson claimed that his hearing issues were being blown out of proportion and that he was being unfairly released by the band. Another doctor told him that his hearing damage wasn’t as bad as he was initially led to believe and that he can continue to record in studios and he intends to do that. But the band has said no more. Johnson remains hopeful.

There was also apparently more to the rock singer’s hearing loss story than originally divulged. In a 2014 interview with celebrity interviewer Howard Stern, Johnson dismissed the loud music and the use of cannons as stage props as the cause of his hearing loss. He said that he believed that it was the result of “sitting in a race car too long without earplugs. I heard me eardrum burst, because I forgot to put me plugs in under my helmet. That’s how it happened. Music had nothing to do with it.” When asked about the tinnitus he was experiencing, he told Stern, “Ah, you know, you forget about it after a week.”

What is clear from all this are several things. One, knowing the cause(s) of your hearing loss is important. It’s also important to have a professional diagnose your problem. Have you gotten additional opinions from specialists in the field? Whose opinion will you listen to? Additionally, what methods of treatment are being recommended? How do you know what treatments will work best for you and who should administer them? In short, what is the best strategy to avoid hearing loss and what is the best way to deal with the situation after experiencing hearing loss?

It’s not a simple thing and many musicians, myself included, have experienced their own catastrophic hearing losses at pivotal moments in their careers – whether from loud music, canons on stage, race cars,  or the sudden hearing losses that can appear from any number of maladies. I knew I was in trouble during a jingle recording session in 1978 when the hearing in my left ear started cutting out and I began losing correct pitch. It was a quick downhill from there. A year-and-a-half later I had to quit music altogether – with hearing loss in both ears and severe tinnitus. It happened not only at the worst possible time for my musical aspirations, but it was still the “dark ages” in hearing-music research and advances, and I had little help to guide me through the woods.

Today’s circumstances are far better and Johnson may have hope and the help he needs.

And fortunately for all of us, more influential musicians are being proactive to protect themselves and others from the effects of loud music. The band Pearl Jam has joined MusiCares to provide earplugs to all attendees of their upcoming tour. Foundations such as Hear the World also distributes earplugs at live music venues and festivals around the word.

“Don’t be careless and lazy at loud rock shows or cranking tunes through an old Walkman like I was thirty years ago,” said Pearl Jam bassist Jeff Ament in a statement. “Wear hearing protection or you’ll end up with a 1.5k ring in both ears every night when you go to bed or worse when you are trying to enjoy the serene quiet of an empty desert or forest, again like me.”

Producers and DJ’s who have long understood the benefits of ear protection are also becoming more forthcoming about their own strategies and are helping to identify the wide variety of hearing protection now available.

Out of Johnson’s tragedy may come some very important information we can all pay attention to. As we follow his story it would be a good thing to see ourselves in his position. You don’t have to be a rock star to suffer his fate or the confusion that often follows.

Stay tuned.

by Stu Nunnery.

Is Notched Sound Therapy a Cure for Tinnitus? by Stu Nunnery

Here is yet another informative piece regarding tinnitus by the lovely Stu Nunnery, originally written for the awesome Hearing Like Me website.

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Those of us with hearing loss and tinnitus may be living at a good time in “hearstory.”

Lately, there has been exciting news about the brain’s ability to adapt (called neuroplasticity) and what that might mean for rehabilitating lost hearing. News is also exploding about the effects of music on the brain, how the brain hears, and the importance of feeding the brain sounds and stimulation – for many good reasons – among them the prevention of dementia and other cognitive disorders.

Now comes news about tinnitus, its connection to brain activity and how understanding and treating that connection might be charting a path to the resolution or cure of the condition.

Research confirms that tinnitus affects the ears, but originates in the brain. Some believe it is mainly triggered by age-related hearing loss and prolonged exposure to excessively loud noise. Other studies target tinnitus as a symptom of abnormal hyperactivity in the brain’s auditory cortex. While there are maskers and more traditional sound therapies for tinnitus. new apps are hitting the market to offer their versions of what is called “notched sound therapy.” One such app that is winning awards and getting a lot of attention is called Tinnitracks  – currently available only in Germany.

Tinnitracks claims to to offer a clinically proven therapy for chronic tinnitus. It’s based on research in the fields of neurophysiology and neuroacoustics performed at the Institute for Biosignal Analysis and Biomagnetism by the medical faculty of the University of Muenster, Germany.

“Tinnitus can be triggered by sudden sensorineural hearing loss or noise-induced hearing loss,” according to the company’s website. “Such hearing loss reduces the ability to hear sounds in the frequency ranges in which damage has occurred, but also causes a reduced flow of information to the brain’s auditory center. This change in input can cause the brain to shift its healthy balance between nerve signals. This then leads to over activity in certain nerve cells, which manifests itself as tinnitus.”

Tinnitracks claims to treat the cause of the problem through filtered audio therapy (music therapy). The co-founder of the company,Sonormed, Joerg Land, says that Tinnitracks is unique in its musical cure.“We are treating Tinnitus directly in the human brain – you don’t have to go to a clinic, you don’t need special hardware or a hearing aid,” “Tinnitracks is just listening to music: it’s convenient, it’s easy to integrate into your daily life.”

How it works

Tinnitracks claims it “filters the tinnitus tones out of the music that the patient listens to. You are prescribed the correct frequency for your tinnitus, and you use the app for 90 minutes a day, over at least 4 months. The auditory cortex in human brain is like a piano,” Land explains. “Every frequency sits next to the other, and we just cut out the tones that are the tones of the patient’s tinnitus to have silence in this area. Over time the neighboring nerve cells will lower the hyperactivity of the tinnitus frequencies, and the perceived loudness of the disturbing sound. Essentially, it takes three steps: select music files from your personal collection, filter tinnitus frequencies then upload a personalized track to an MP3 player to start therapy.”

Tinnitracks further claims that it is most effective for those 18-60 who have a tinnitus frequency no higher than 8,500 Hertz (8,5 kHz) and a hearing loss less than 65 dB HL.  The online app is sold with a year license that runs $584US, but the company expects to launch a new version that will be about $20US a month.

OK, just what is notched sound therapy? Here an excellent link but note that the source, Audio Notch, is one of the notched sound therapy apps currently on the market as well.

Does notched sound therapy work?

Our friends at Hearing Tracker have directed me here to a review on the Hearing Blog.

To repeat the summary: “given the positive evidence at hand, while promising, more research needs to be done on Notched Sound Therapy to determine its efficacy and recommend it as a standard clinical treatment for tinnitus: There is not yet enough evidence to support that such a form of treatment is ready for clinical implication.”

Meanwhile there are other sound treatment options on the market you can try, some more affordable than others.

Tiinnitus Pro 

AudioNotch – makes similar claims to those of Tinnitracks and is available for $8-$20 per month.

The Paxx100 by The Tinnitus Lab 

Whist Tinnitus Relief 

As for Tinnitracks, they have begun a partnership with a private healthcare company and plan to approach the FDA to make Tinnitracks available in the US. Good luck. “Getting into the health system, it’s a nightmare,” said Land. “The market is not made for digital solutions, there are a lot of regulations around data and security,” he explained. ”

I‘m excited by the notched sound therapy approach as well as other sound therapies but considering the dearth of reliable data, the varying prices, and the lack of patient reviews, I remain skeptical about many of the claims. For now. What do you think? Are you using one of these therapies now? Would you be willing to give one of them a try?

by Stu Nunnery.

(Original source)

 

‘That Long and Winding Road…’ by Mervyn James

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That Long and winding Road…

Has nothing to do with this article, I just like the tune…. 9 out of 10 people I meet have no idea I am profoundly deaf,  I could easily make them aware by using sign language, but people tend to put a label on you as a random member of some subculture based on not hearing anything if you do that, and I’d rather be seen as an individual who just happens to have a profound hearing loss.

People in my position and indeed, millions of others with various degrees of hearing loss, suffer huge issues of poor support and access where it counts, e.g. 999 areas and GP’s etc, even opticians and dentists don’t support you to have those all-important tests we all need.

Have you tried lip-reading your optician in the dark with one eye closed up half the time and with a test card written in Croatian? You take the point. Or the Dentist with their masks one, they don’t call me Gummy as a term of affection, they just keep taking them out till they get the right one.

Not even disability support areas and the Local Authorities provide what you need, either because the charity hasn’t the funds to pay for it, or the LA is unsure if you making an enquiry puts the onus on them to assist you, of course cuts affect everybody but we are always back of queue by default, because of the difficulty in defining the type of support you need, and, the actual availability of it.

By comparison, if you are a deaf person who relies entirely on sign language then you are 25 times more likely to get supported than I am, because my lip-reading is getting worse, and the access to text support is almost non-extant in Wales. Alternatively insist you are an illegal Migrant who speaks only an obscure dialect of Bantu and is a relative of Winston Churchill, then they queue up to help apparently.

I’ve lost count of asking areas for text support and then being offered sign language instead, it’s a bit like a Welsh speaker being offered a Spanish interpreter. As people with profound loss, we are easily identified as shoppers who only use supermarkets and always offer high denomination notes or coins in payment regardless of cost. That is because if we guess wrong how much the price is, we are up against it in communication terms. My biggest bugbear are shops that won’t just take your money for goods, but launch into lengthy discourse regarding BOGOF offers or what cards do I use or want, if you say you don’t have a  loyalty card they start thrusting papers at you to get one, I said you want my loyalty try to communicate properly.

I’m then in trouble because I cannot follow properly and there is some queue behind me, getting annoyed, and asking which planet I just arrived from. I usually say Neptune or Blaenau Ffestiniog and that seems to satisfy their curiosity…

My speech is OK, I’ve got a PhD in mumbling… although speech is an issue, because then people assume talking equals hearing and get angry when you cannot reply properly after.

No two people are the same, bit of a bugger but…. Sadly our Hard of hearing people suffer a great deal of denial, this is down to the fear of looking stupid to other people, ergo YOU.   Manufacturers of hearing aids hone in on that and we all see the adverts for ‘Hidden Hearing’ etc, which to my mind panders to that view. Why hide your hearing loss and then STILL look stupid if you miss something?  I’d be banning hidden hearing ads, I understand making them less obtrusive and even miniature, it’s an advance, but what you cannot see, you do not understand that’s the issue, and Hard of Hearing still insist they can hear everything so ask for it really.

This week is officially ‘Deaf Week’ but you won’t see me taking part in it, you will probably see a lot of deaf people signing who are an hyper-active but minor cultural promotion area, and of course charities promoting their wares, having assistive dog shows, and fund raising too.

Be aware lip-reading isn’t an exact science either, unless following less than 30% of anything spoken will do for you, or you have advanced A level in ESP studies. Mine goes from 24% to zero mostly. Then the ‘Nod’ kicks in, and everyone assumes you are either the worlds’ most attentive listener (and polite with it), or vying for pole position in the Village idiot category.

Lip-reading isn’t possible if you have your back to us, you are eating at the same time, or a poor speaker anyway. Goldfish impressions tend to look better on the fish to be honest. Don’t go with the Mime approach unless your name is Marcel Marceau…

On the roads, please spare a thought too, that person in front of you may be deaf we don’t have a label on our backs with ‘I’m Deaf please pass carefully.’ on it. So don’t just push us aside, or run your prams and buggies into us because we haven’t moved out of the way quickly enough. If you try, I’m liable to trip you up as you pass and blame the dog. Or if you have a wheelchair, I will almost certainly let your tyres down.

Statistics suggest one day it will be you too…  then remember what goes around comes back at you! What we need most is your patience, and a little extra time to ensure we know what is being said, thank you. I’m not ignoring you, (at least not today, I may well do tomorrow), but I really cannot hear you…

By Mervyn James….

 

‘Start With A Smile’ by Emily Owen

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On May 11th 2016, Emily Owen’s book called “Still Emily: Seeing Rainbows in the Silence” will be published.

Emily, who is deafened, was asked to give some tips to hearing people for when they meet someone who can’t hear. See what you think and let us know if you agree or not? 🙂

Start with a Smile

I could hear.

Then I couldn’t.

Overnight, I’d lost my hearing.

All of it.

I was deaf (still am).

I joined the 11 million people in the UK who have less than perfect hearing.

When I eventually began to emerge from the shock and depression and scariness of sudden silence, I picked up my ‘surviving hearing loss in a hearing world’ guidebook.

Or I would have done, had such a book existed….

The first time I told an assistant in a shop, “I’m deaf”, she looked terrified.

It was like looking in a mirror: I was terrified, too.

Where did we go after “I’m deaf”?

Neither of us knew.

I knew I could verbally tell her, “I’m deaf,” because I grew up with hearing and speech.

She knew she could hear me say, “I’m deaf,” because, well, she could hear.

What we didn’t know was how to bridge the hearing/deaf divide.

How to meet in the middle.

How to co-exist.

Since that day, I’ve had two choices.

  1. Become a hermit.
  2. Compile a bit of a guidebook of my own.

Tempting though option 1 often is, I went for option 2 (most of the time).

The first entry in my guidebook says, ‘remove the full stop after “I’m deaf.”’

Here are three tips for (hearing) people when they are met with the terror of hearing, “I’m deaf.”

Three tips for removing that full stop.

  1. Remember to relax.

Unless you happen to have a PHD or equivalent in communication, no one expects you to be an expert in dialoguing with deaf people.

We get that you are probably out of your comfort zone when you meet us.

Believe it or not, so are we when we meet you!

We don’t automatically know how to bridge that divide either.

But let’s start with a smile.

  1. Remember that communicating is about getting a message across.

If you and I can work out how you and I can bridge that deaf/hearing divide, that’s enough.

I speak a bit of sign language. My god-daughter doesn’t.

One day, in an effort to get me to understand the thrilling-to-a-three year old tale I kept misunderstanding, she resorted to waving her arms around.

She was trying to copy sign language.

She looked more like an over worked windmill.

But the combination of seeing her lips and seeing the windmill actually helped me.

To my shame, I can’t now recall this story that so obviously rocked her little world.

But I know I understood it at the time.

I’m also pretty sure that not many people use the windmill method.

And that’s ok.

In our own way, message was received and understood.

  1. Remember that we’re all different.

So you met someone last week who was deaf? And they could lipread what you said to them? Well that’s great. But, guess what?

We can’t all lipread.

A bit like just because some people can sing Opera, it doesn’t mean everyone can.

Some of us who can’t hear prefer to lipread, some prefer things written down, some prefer sign language, some prefer typing, some prefer….

Obviously, unless possibly you have the aforementioned PHD, no one expects you to be fluent in sign language but we’re pretty sure you can write things down. Or type them into your phone.

A good way to get started is to write/type, “how do you prefer to communicate?”

*note the question mark, not full stop*

And don’t forget your smile……

by Emily Owen.

 

If you wish to view Emily’s book via Amazon, please follow this link: https://www.amazon.co.uk/Still-Emily-Owen/dp/1910786438?ie=UTF8&qid=1462190333&ref_=tmm_pap_swatch_0&sr=1-1

Or alternatively, via Wordery, please follow this link: https://wordery.com/still-emily-emily-owen-9781910786437

‘So you have hearing loss too? Soundz Off can help’ by Tania Le Marinel

Welcome to a very large club – 11 million of us in the UK have hearing loss (that’s one in six people) predicted to rise to more than 14.5 million by 2031 (Action on Hearing Loss 2015).  Add this to the 360 million people worldwide with hearing loss and that’s a very big club!

Like all clubs we have something in common – similar interests, ideas, problems and difficulties to overcome. Like all clubs, there’s lots of information out there relating to our speciality interest, yet only 1% of medical research spending goes on hearing loss and it’s surprisingly difficult to find the information we need.  So where do you find that information?

Many people deny they have hearing loss for up to 10 years and, for most of us, our only experience with a hearing professional is being referred to audiology for a hearing test and hearing aids.  Then we get waved off from the hospital and left to our own devices – not helpful when we’re usually reeling with shock at the diagnosis, baffled by the technology and unaware of how to help ourselves (and others) to cope better with this invisible disability.

That’s why I created Soundz Off in 2014 http://www.soundzoff.org – an independent website which brings together hundreds of links to useful websites related to hearing loss: equipment, support organisations, technology, social media, forums, apps, research, events … the list goes on.

As someone with hearing loss myself (I have moderate sensorineural hearing loss in both ears and wear two digital hearing aids), I was amazed to discover this didn’t exist before. Over the years I found hundreds of organisations which exist to support people with hearing loss but nobody ever told me about them – I had to support myself and find them myself one by one. Nobody ever brought that information together in one place … until now.  Soundz Off does the legwork so you don’t have to!  We also have an active Facebook page updated daily with the latest information and news on hearing loss http://www.facebook.com/soundzoff  – how I wish this had existed 20 years ago when I was just starting out on my own hearing loss journey.

Hearing loss affects people in different ways and most of us struggle with this challenging disability.  You’ll probably recognise where you are in your own journey represented by this graph of the different stages of grief:

stages of grief

As someone who’s travelled right though every stage of the curve and eventually adjusted to my own hearing loss – even to the stage where I’m now working as an advocate and welfare officer for people with hearing loss – Soundz Off is my gift to you, whether you’re new to hearing loss or you’ve been coping with hearing loss for a long time.  Discover new information, make new contacts and friends, learn about what’s being doing to cure hearing loss and tell us about organisations you think we should add to our Directory http://www.soundzoff.org/directory

The good news (there’s always good news!) is that for every stage of your journey there are organisations and people out there who can help you.  Soundz Off ensures you don’t have to travel that journey alone and we can all learn to cope better with hearing loss in a hearing world.

So, as I said at the beginning, welcome to the club!  Good to meet you.

Tania Le Marinel – http://www.soundzoff.org

‘Whole New Take On Glue Ear’ by Carl Gammon

Last year on the 10th August, I accidentally got superglue in my right ear, after trying to remove it myself with acetone (nail varnish remover) I went over to my local hospital to explain and for them to remove it. After they finished laughing, the nurse had a look in my ear and told me I would need to go to the main hospital, as she could not get the glue out. So I went there and they couldn’t remove it either, I was going to need surgery.

Back at the main hospital, I was seen and sent up to a ward where an ENT consultant had a good look. He tried to remove it but seeing as this is superglue; it had stuck good and proper. He scheduled an appointment for me to go back on the 13th August for surgery under a general anaesthetic to remove it.

All this time I still had a bit of usable hearing (although it was very muffled) so I signed the consent form and told them to do whatever it takes to get it all out, and went down to the theatre. The wife says I was down there for about 2 hours or so. Anyway, once I was back up on the ward and coherent enough the consultant told me they did not get all the glue out because they didn’t want to damage my ear drum. And that the remaining bit of glue will dislodge itself. Seemed fair enough, or so I thought.

A week later, I had the post op follow up and after my ears being pulled about I was told that they had damaged the eardrum during surgery. They could have removed it all?!

This is where the problems started – Nine ear infections since then!

Oh… They have given me Tinnitus as well which is a high pitch screech in the right ear 24-7. Thanks guys!

So now, I am waiting to have more surgery to see what’s what down there. I have got to have what they call an E.U.A (Examination Under Anaesthetic) because I am considered a high risk of fainting, seeing I fainted at our local hospital ENT clinic and this frightened the entire department. One nurse said in all her 38yrs of nursing, she had never had someone faint by looking in their ears.

My next appointment is on the 17th April for a pre admission assessment, then, provided there are no complications, surgery is booked for the 10th May.

I will update of course.

By Carl Gammon.

To be continued… 🙂