‘Twas Truly A Pleasure’ By Lesley Kiddell-Spencer.

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Oh dear, sometimes in life we realise the page has turned to a new chapter and another phase in our life has started. This has happened with “The Treehouse” group, it is now time to take down the curtains, remove the furniture and dismantle the structure of our treehouse to move to pastures new.

Sara gave a huge amount of her time setting up this group, she did us proud and we should remember her for that. The story below will give you an idea of the kind of person she is, she wrote this herself some 3 years ago and it sums her up perfectly.

“I have a sweet recollection to share, of a particular time long ago when a father wished to purchase for his daughter, a bag she so coveted. Mine. Was this you or perhaps, do you know them? If so, please do let us know.

I had jumped onto the train, all ready to meet friends with my roller-blades tucked away in my brand new sporting bag, that I had purchased especially.

As the tube rattled along and made its course, everyone was either reading the newspaper or dozing off encouraged by the monotonous vibrations of the train. I for one usually contemplated to pass the time.

Someone suddenly but gently tapped me on my knee, I was mildly astonished that someone wanted my attention. He explained that his daughter admired my bag and wanted to enquire as to where he could buy her, the exact same bag. I looked besides him to find his daughter being ever so shy. I remember being as shy as she once. Bless.

I seized the opportunity to draw a detailed map for them, alighting from a specific tube station, directions and the name of the shop. Even, where the bag was in the shop… His daughter seemed silently appreciative whilst her father seemed a little daunted, perhaps at the thought of making his way through crowds of people within the busy streets of London, with his daughter in tow.

My instincts told me he had at least, a little bit of experience with deaf people, knowing how to speak and listen in return. Therefore, I asked him, if he knew anyone that happened to be deaf. Much to his surprise at my evaluation, he then confessed his wife was deaf who remained in the United States whilst he was holidaying here, with their daughter.

Not forgetting the desired bag, their stop was the next one coming up. Mine was not for several stops after. He had shown me patience and kindness as a stranger, “What shall I do? I cannot leave them stranded at the mercy of body pushers” I thought… I decided to listen to my instincts and got off the train with them instead. He seemed to be somewhat surprised yet relieved that I was able to join and guide them through the bustling streets of London, which was heaving with tourists. He was no longer nervous and seemed more at ease; this meant his daughter was relatively more at peace.

Upon arriving at the shop, I showed his daughter through to where there was an identical bag to mine, waiting to be owned, by her. Different shades of gorgeous purple – who could resist? At last, two people were happy, having been looked after, satisfactorily. I explained that I now had to go because I was meeting friends, wisely omitting that I was late. After all, it was my choice.

I bode them well, to take care and to enjoy the rest of their holiday before turning around and leaving them to continue their retail therapy. As soon as they could no longer see me, I ran like the wind to make up for lost time.

My friends at the time was wondering where I was but they could not get annoyed with me once I explained, what I had been up to. Bless their cottons!

Who knows if the ‘six degrees of separation’ reasoning is viable yet my faith and trust in fate will remain. If this somehow reaches you and this has made you smile in reminiscence, being the daughter and/or the father – ‘Twas truly, my pleasure.”

We could never get annoyed with you Sara, and this time ‘Twas truly OUR pleasure”

Lets say “bye for now” but not “farewell

Lesley.

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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)

 

‘Ishaare. Gestures and Signs in Mumbai’ by Annelies Kusters

“Ishaare” has a double meaning: it means “gestures” in Hindi and Marathi, but it also means “signs”, as such indicating that there cannot be made a strict distinction between them. However, whilst there seems to be overlap between gestures and sign language, they differ too, as the protagonists of the movie show and tell us. The film “Ishaare” documents how six deaf signers communicate with familiar and unfamiliar hearing shopkeepers, street vendors, customers, waiters, ticket conductors and fellow travellers in Mumbai. Reena and Pradip, who is deaf blind, go grocery shopping along local streets, in markets and in shops. Sujit, our guide throughout the movie, communicates in public transport. Mahesh is a retail businessman who sells stocks of pens to stationery shops. Komal runs an accessory shop with her husband Sanjay, where most customers are schoolgirls. Durga is the manager of a branch of Café Coffee Day, an upmarket coffee chain. When enquiring, selling, bargaining and chitchatting, these deaf and hearing people use gestures and signs, and they also lipread, mouthe, read and write in different spoken languages. In the film, they share how they experience these ways of communication.”

A film directed by Annalies Kusters.

‘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….

 

‘A Few Snapshots Of My Life As A CODA’ by Sara Huang

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As far as CODAs go, I was a pretty straight-laced kid. I never snuck out and tried my best to follow household rules. But there were definitely times when I used my parents’ deafness to my advantage. I loved to listen to music LOUD. I’d crank it up at home and my parents were none the wiser. Other neighbors apparently griped and called us as THAT house. The loud house.

Going to backtrack. For the first seven years of my life, I was home-schooled by my mom and pretty much existed in a deaf bubble. During those years, I developed some “deaf habits”. I spoke VERY loudly, never really cared about how loud I was being, copied the way my parents pronounced words (musk-el instead of muscle) and always read books out loud. I never learned to read silently. I’d pass gas whenever I wanted, not knowing it was embarrassing to do it in public. When I finally went to public school, carrying on with all these habits, I got a rude awakening. My peers thought I was very odd and I was often excluded. I had a very lovely teacher though. She got me though some very tough times.

I also went through a period when I thought my parents weren’t really deaf. I was young; maybe six. At the dinner table, I asked my mom, “Are you really totally deaf?” She answered “Yes”, but suspicious six year old me demanded proof. I screamed at the top of my lungs and asked if she heard me. She said “No.” Unsatisfied, I shrieked even louder and asked again. Answer was still no. Stubbornly, I took a deep breath and screeched as loudly possible. I asked if she could hear that. She said, “Barely,” and told me to cut it out. I stopped questioning her after that.

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Mom

I was also one of those CODAs that couldn’t sign well. I developed odd habits. At first, I’d sign with just one hand. Then I became completely reliant on fingerspelling everything. My parents tried to break my habits, but I wouldn’t stop. Communication issues became a major issue later on, especially when I was getting bullied at school. My mom would ask me what the matter was because she could see I looked depressed, and I’d just clam up because I didn’t know how to express my feelings to her.

I can sign pretty fluently now. I think it happened after I moved to Taiwan. I realized how precious my family was and really wanted to interact with my parents on a deeper level. I studied books, watched YouTube videos, and Skyped frequently with my mom. We can talk about almost anything now, and I’m still learning. I came open up to my parents about just anything.

Unsure how to wrap this up, but I hope you have enjoyed these few snapshots of my life as a CODA. It is a major part of my identity and I am proud to be one.

Fin.

By Sara Huang.

Sara Huang with a grasshopper made out of grass.

Sara Huang, with a grasshopper made out of grass.

‘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