Hard of hearing

From Blog to Blog: Rikie and Renee

Rikie lives in the Netherlands, Renee lives in Switzerland since 2009. We both are hearing impaired. We both blog about it.
Every now and then, when we talk to each other live, we ask each other questions like ‘How do you do that?’ or ‘How did that go with you?’. That’s how we came up with the idea to take a topic by the head and share our experiences. Because we are probably not the only deaf or hearing impaired person who runs into this.

About dentists, doctors and hospitals

Renee: I remember very well that after we moved to Switzerland, I had to look for a new dentist and general practitioner here. That was my job because my husband was working and didn’t have time for this.
Our hometown was much less populated then than it is now, but there were enough dentists and general practitioners there, just not all of them in our neighbourhood. My first attempts to register with a general practitioner were disappointing.
When I entered, the assistants were sitting behind a high, wide counter. Communication was difficult, not only because I spoke high German, but also because I could hardly understand the assistants behind that counter and they seemed uninterested. Finally, I was told that they were not taking on any new patients. End of story.
My next attempt was similar. Concerned, I started my third attempt. Luckily this time I found a lower counter, more accessible assistants and, as it turned out later, a great GP.
At the dentist I already saw the next high and inaccessible counter looming up … Luckily the assistants were accessible there and the dentist and dental hygienist as well and even better, we could come and the dental hygienist even takes her mouth cap off when she talks to me. Do you recognize this Rikie?

Rikie: My deafness has crept in. People know me as hearing, so does the doctor and the dentist. They didn’t believe me when I said I couldn’t call to make an appointment. It gave me the feeling that they didn’t take me seriously, as if they had never had to deal with hearing impaired people before. I really had to come up with all the alternatives myself and make agreements about how it could be done. At that moment the dentist was the most flexible, the assistant immediately said yes when I asked for email contact. The general practice was a completely different case. Unfortunately it is still not properly arranged there. I can e-mail, but if I don’t add that I am deaf, I can forget it. If I want an appointment soon, I’d better go there. I do hold my heart for the moment that there is an emergency. Luckily the counters are low enough, the processing of data in the PC by medical staff sometimes requires adjustment, so that I can see the faces to understand them. Luckily the dental hygienist and dentist know that they have to take off the cap when they talk to me, that’s really great.

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Renee: In hindsight, the difficult communication was also a bit up to me. At the time (10 years ago) I wasn’t very open about my hearing impairment, which of course I should have been and didn’t say, or only later, that I am hearing impaired …
Nowadays I really take a different approach! Because there are (usually high) counters everywhere at dentists, doctors and in hospitals and the assistants behind them often at a distance, I almost immediately indicate everywhere that I am hearing impaired and ask if they can speak clearly and calmly. I also sit down in the waiting rooms in a visible place, from where I can oversee my surroundings. It happens too often that your name is called and then of course it’s just a question of whether I understand or hear that. Depending on the situation, I ask at the counter if they don’t just want to call my name, but want to come to me as well. Sometimes it is forgotten, but in most cases this works fine and I get some understanding. Have you experienced that as well?

Rikie: Yes, I really had to learn to stand up for myself. In the beginning I assumed that agreements about communication would be kept. Now I know better unfortunately. It doesn’t matter if you make appointments, after 5 minutes people have forgotten and you have to repeat what you asked for. And you really have to look after everything yourself, because a mail, chat, or whatsapp message is less hurried, is less important than a phone call. It’s usually not personal, no unwillingness, people just don’t have the faintest idea what it means to be hearing impaired. And changing your behaviour in the daily routine is something that is very difficult. Also the administrative systems are not set up to report that someone is not reachable by phone. The field for telephone numbers is often mandatory and cannot refer to another form of communication. In the meantime I have trained everyone in my area in how to reach me 😉 A tip here: close your voicemail and only play a message that you can be reached via email or whatsapp/sms. It helps.

Renee: Yeah, I recognize that! During doctor visits I sometimes use my assisting device (RogerPen), this triggers different reactions from doctors. Usually I ask them politely if they don’t mind and explain what it’s for. In general they don’t find it a problem at all. Only once a doctor asked if the RogerPen didn’t record anything, because he wouldn’t like that. After I had clearly explained the RogerPen again, it was okay.
Another doctor, where I come once or twice in a year, just asked me about the RogerPen, which I accidentally forgot to bring that time … She thought it was a fantastic tool, which it is.
But even with tools, the visit to entists, doctors and hospitals remains quite strenuous for me, as I have to be constantly on the lookout and on “sharp”.

Rikie: With my CI (cochlear implant) I am currently not using assistive devices. Personal conversations, short appointments in quiet surroundings, fortunately succeed again. At the moment a text interpreter (they type what is said and I read with them on tablet, say live subtitles) is the best help I can wish for. Especially because in a noisy environment I don’t understand anything, I don’t hear anything behind me, and I don’t hear where sound is coming from. And yes, I often have to explain that with the presence of an interpreter that they have a duty of secrecy and that everything that is said stays between us. Luckily, I’ve never seen them refused.
Even hearing with a CI, even with the help of a text interpreter, remains a tiring undertaking. The tempo is gone. The normal speech speed gets too fast soon. Hearing, understanding, processing and reacting takes much more time and effort than for the ‘normal’ hearing person.
Actually we do the same, both in our own way :-), to make things easier for ourselves. Right at the start of a conversation we say what we need to understand the other person: 1) look at me, 2) speak calmly and clearly 3) a quiet environment.

Rikie Boevinkhttps://deciderata.blogspot.com (in Dutch language)

Renee Iseli – Smitshttps://hardofhearingweb.wordpress.com

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Hard of hearing

Merry Christmas

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Source: Frauke Riether (Pixabay)

I would like to thank all my readers for reading this blog and for all their feedback over the past year!
Also a very big thank you to the Blogger Team and all guest bloggers for sharing their experiences!

Although a little less regularly, I have dedicated myself to this blog with much joy and enthusiasm this year and will do so again next year.
As always, your questions and discussions are very welcome.

I wish you all a Merry Christmas and a Happy New Year 2020.

Best regards, your Renee Iseli – Smits

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acoustically heard, auditory challenge, Hard of hearing

“Heard from the acoustician”

In this section, the Acoustician Team keeps you up to date on technology, advice, handling hearing aids and personal experience in the profession of an acoustician.
The Acoustician Team consists of 2 Acousticians and Oscar, their Mental Coach on 4 paws.

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Family celebration at Christmas, Christmas dinner with the company, a cosy Raclette evening with the club, a contemplative evening in silence completely alone or a common Advent singing in the quarter.

There are innumerable possibilities and preferences to spend the Christmas season. And with it completely and closely connected are the most different discussion and hearing situations. These can present our clients with smaller, larger and greater challenges.

These festive days it is advisable to check your hearing aids or have them checked. The following questions can serve as guidelines: Does my hearing system work? Do I have enough batteries or is the accu charged? Are the speaker and microphone filters okay? Is the ear canal free of earwax (plug)? Does the accessory work as usual? Are the sound tube and earpiece functional?

If, for example, conversations are conducted with a normal loud voice, clearly, in the immediate vicinity, looking into the face and with reduced ambient noise, the chance of understanding increases. Pauses in conversation, naming the topic and short keywords can also be valuable for the hearing aid user.

And for those who say to themselves, “If I only had worn my hearing aid more often this year,” it’s hopefully encouraging to hear that a whole new year lies ahead of us all.

The Acoustician Team wishes all of you a merry and relaxed Christmas Time.

 

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Hard of hearing, Hyperacusis

Hyperacusis with an experimental muffling – Part 2

Today a second guest contribution from Mirjam van Soest. Mirjam has had severe Hyperacusis since brain surgery a long time ago, but has not resigned herself to it. She has continued to look for a solution and participates in an experimental research. Read the rest of her story.

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It is an exciting period, when my ENT specialist does several experimental studies. And all this to prove the usefulness of Dr. Silverstein’s operation in America as a treatment for my Hyperacusis and to bring this treatment to the Netherlands.
The tests with temporary silicone membranes to attenuate my eardrum are successful. Striking detail: my hearing was even better with the attenuation, possibly due to improved concentration and less over-stimulation in the brain in terms of sound.

Although the studies support the usefulness of an operation for me, it is slowly becoming clearer and clearer that the hospital does not give permission for it to be performed. Nevertheless, my ENT physician is very enthusiastic and even says: “You are the perfect candidate for this simple operation, with very few risks”.

My ENT doctor thinks along and we decide to approach another doctor in a university hospital, where the financial side does not have to be a problem anyway.
It takes weeks before I get an answer. But unfortunately, this doctor is not open to this experiment. And according to my E.N.T. doctor, this makes the chance of success in the Netherlands almost impossible.
It’s a big disappointment that I have to deal with! But… my ENT specialist also strongly advises me to try it in Belgium. Not in the least because they are more open to new treatments there.
But also because treatments in Belgium are often reimbursed by the insurance company. He recommended a specific hospital. And if I need his help in the future, he is open to it.

I had taken into account beforehand that if it didn’t work out in the Netherlands, I would try it in Belgium. And possibly England or America, where it is done anyway, are also an option. But the cost of an operation, with every option that is lost, does increase. That’s why this order of processing.
It is a pity that the Netherlands is so rigid in this area, especially for many patients. But I still have hope, because there are other possibilities.
I’m just thinking: there are a lot of roads leading to this operation. And I also hope that my experimental treatment has brought the operation a little closer.

To be continued even further.

 

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Hard of hearing

Retrospective

9qvObrlLSv6ZCnmwm2bF_zurich-4500200_1280.jpgPicture: Zürich, Switzerland

On 1 October of this year, I am living in Switzerland for exactly ten years. This was a conscious decision for us. As a child with annual summer holidays in Austria, my love for the mountains began. Later, when I met my husband, we spent our holidays in Switzerland and visited my husband’s family. We felt very comfortable in Switzerland and so the idea came up: “What would it be like if we lived here?
When we had the chance to move to Switzerland, we used it and voilà … there you are, ten years later.
For me this step was a great challenge. Not only did I have to give up my job in the Netherlands, but with my hearing impairment I also found it very exciting whether I could get used to the language.
Fortunately, I have no problems with the German language because I learned it when my hearing was relatively good. I had also studied in Germany for a year. Swiss German, however, is very different from German. Now I would no longer be able to learn a new language. At home, with my husband, we talk Dutch at his request, otherwise the language is (Swiss) German.
When I had to go to hospital for a few days for an operation at the beginning of this year, I warned the doctors and the staff during the preliminary examination that I might be speaking Dutch after the anaesthesia. They all understood, but apparently the German language is so deeply rooted in me that this did not happen.

Soon after our move, I began to live actively in my new environment. I went to yoga, became a member of the local recreation club, volunteered and enrolled in associations for deaf and hearing impaired people.
Gradually I got to know people, built a network, engaged in all kinds of activities and even became a member of a women’s discussion group whose members all have hearing disabilities. It’s something special, because usually this group doesn’t take on new members very quickly (no one came after me).
I am now chairman of an association for people with hearing impairment, I volunteer at the local retirement home, write columns and a blog, give lectures, give tours of a museum in the near future and also run awareness-raising workshops for businesses and schools. In short, I am very busy again and have definitely found my job and my way here.

It was a long and intensive process that certainly took several years. The Swiss are very friendly and polite, but not very accessible – my in-laws are definitely a pleasant exception. For example, drinking a cup of coffee with the neighbours is not common. If you are invited to your home by Swiss people, that is something special. And to break through that, you have to do something about it.

Looking back on the last ten years, a lot has changed in every respect. It’s not just that our living environment has now been built up and there are shops next door, I really feel integrated here, and although I’ll never be a “original” Swiss, people here accept and respect who I am and what I do.

 

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Hard of hearing, Tinnitus

Autumn

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Autumn has started again. This often means rain, wind, fog, falling leaves, shorter and grey days.

Nevertheless, I love spring and autumn. In both seasons there can be nice weather, without extreme heat or cold. And both seasons have, as a bonus, that in nature green or colours are competing. Here in Switzerland, the mountains with their green, red, yellow and rust-coloured walls are particularly impressive and magical.
Yes, for me autumn not only announces winter and autumn not only has disadvantages, but also offers a kind of visual compensation. Although I am still very auditory through the remainder of my hearing, colours also determine a large part of my life.
In autumn, Mother Nature shows herself from a colourful side and my eyes are happy about the colourful spectacle, while my ears take a “break”.

Autumn also means holiday time for me, because my husband normally has his holidays in autumn, and we can usually watch this natural spectacle from close up. During the holidays we like to go for longer walks in the mountains. Since we choose our holidays outside the high season, our resorts are also less crowded with tourists and/or other holidaymakers. In the nature it is calmer and we can enjoy it fully.
For us the nature, the silence and the views have a very relaxing effect, even if the wind and my tinnitus think they have to overcompensate the silence and quiet. As usual I can ignore both disturbances and still enjoy my surroundings.

Thanks to my hearing aids, I can still hear the crackling of the leaves and the crackling of the snow. Nature has its own very quiet sounds and it is wonderful to spend such a day without the noise of everyday life.
And not much tops a hot chocolate when you have reached the mountain hut after a hike, knowing that after the effort you have reached your goal and deserve the reward.
Or if one is blown away by the wind and arrives back at the hotel a little rosy to have a short rest before dinner, or alternatively to have an aperitif.

Of course, the autumn also has its moods and it is always to be hoped that the weather is not too bad during our holidays. This year, we were lucky with the weather again. We were allowed to experience all kinds of weather, could still hike and had breathtaking views.
The highlight of our holidays was for sure a breakfast at 2500 m altitude. When we woke up in the morning and looked out of our hotel room window, we could see that it had snowed in the night even on 1600 m height, where our hotel was. Early that morning we went up the mountain with the cable car to be one of the first to admire the white splendour with its silence and tranquillity, the view and afterwards to enjoy the breakfast with view.

But also the fog was fascinating. On the mountaintop, we stood a few meters away from a high tower. One moment this tower was clearly visible, the next moment not at all. And that alternated the whole day. Snow and fog dampened also the noises of the increasing visitors …
When we arrived back at the hotel in the afternoon, the snow had already disappeared and it got louder again.

Now the holidays are over and we can only hope that autumn will bring us a few more “golden days” before winter begins.

 

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Hard of hearing, Hyperacusis, Tinnitus

“Marga hears too much!”

Hyperacusis, hypersensitivity to noise, is less well known than tinnitus, but there are many people who suffer more or less severely from it.
In this section “Marga hears too much” Marga van Hintum blogs about her experiences with Hyperacusis regularly.

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Coffee with noise – Conclusion –
Well, my fully automatic espresso machine was broken. I wrote about it before. No more delicious freshly ground coffee. No more fun. No more noise in the house of hyperacusis*. The hellish noisemaker kept quiet. And so I ground it firmly with the bean grinder and the crank. I already told you about it. It made a lot less noise than the fully automatic machine. That was nice; then I wouldn’t have to put my fingers in my ears anymore. I couldn’t do that at all now; after all, I needed my hands to grind. Twice a day. With the hand grinder between the knees. And I became completely zen from the minfull moment.
The coffee from the filter was also delicious. I have to admit that. Ground and homemade. Really good. But the moment soon came when I started to reflect. What would I do with the broken machine? Have it repaired? Of course it was just out of warranty, you can always wait for that. Or get rid of it and buy a new machine? A more expensive one perhaps, with which I could hopefully do many years? Saying goodbye to my cherished coffee maker. I wasn’t really ready for that yet.

Black coffee
The Internet, as always, brought help. I Googled like crazy. What about a new machine? What brand would I take, and what were the annual maintenance costs? Because that can be considerable! I soon found out.
Eventually I came to a choice. I would get another machine with which I could only make black coffee. Almost the same as my old machine. Without a steam pipe or milk pipe. Because you don’t have to clean what isn’t there, do you? It was a lot more expensive than the old one, though. And the maintenance would be more expensive than with my old one, too. But then I had that really good coffee. That’s for sure!

Help and hope
In the meantime I had contacted the shop where I had bought the old machine by e-mail. Then I waited and waited; they just didn’t respond. I sent a second mail. And then I had a lightbulb coming on. And after some google work I found out. The shop was bankrupt. As a consumer there was nothing left to get there.
The next step was to contact the manufacturer of my old machine. I called in their help via e-mail. And got a long mail back, about possible repairs. But also with an explanation; I could try it myself first! Maybe there was still hope for my broken darling. Fine !

And … ?
I am proud of myself. I got my machine working again. For how long? I don’t dare say that. Let me not think about it any further. I put the hand bean grinder with the crank back on the cupboard, for decoration. I cherish the memory of the grinder, which was the answer to a coffee lull in distress.
And … now I’m drinking coffee again from the hellish noisemaker. Tasty coffee! Mmmmm…..

* Hyperacusis, literally “I hear too much”, is a condition where you are hypersensitive to ordinary everyday sounds. Everything sounds too loud. “The volume knob of ambient sounds stands for someone with hyperacusis permanently at too high a setting” (source: foundation Hoormij)
Hyperacusis occurs in many forms. For me, especially higher frequencies are very annoying and hurt my head. I also have tinnitus. Concentration is more difficult and focusing on a sound source is more difficult.

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