A Hearing Loss & Late Deafened Blog

Posts Tagged ‘Cochlear Implants’

How to Ride a Bike with Hearing Loss!

In Cochlear Implants, deaf, Deafness, Hearing Loss, Partially Deaf, SWC convention, Travel, Uncategorized on March 21, 2017 at 11:13 pm

By Robyn Carter

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I was implanted back in 1993.  I was the 8th adult in New Zealand to receive the implant. As there were not many others and no support group back then, I started looking online for some hearing loss/cochlear implant support group to join.  I also was the editor of our NZ Cochlear Implant Newsletter so I was looking for articles to share to our recipients and would-be recipients here in New Zealand.

And so I found the SWC – in fact, I found Bob’s email first. Bob had written an article for the ALDA about faking it, when you don’t really hear something, but are too embarrassed to admit it, or too tired so you nod your head, laugh and pretend you knew anyway. This article resonated with me as I was such a good faker. So when I found Bob’s email address, I flicked him an email to tell him how much I enjoyed his article.   The result of this was that he just subscribed me to the SWC.  That was in 1995. And I’m still here.

There was only one email list back then – SWCForum. It was a busy list full of controversial conversation, often heated, often hilarious, and from there I forged many friends – many whom are still my friends today. Some of them are long gone from SWC, but there’s a good many still on the listserv with me today.

The list enabled us to converse like we never had before. We could write our feelings, what was happening, we were lifted when we were down, and in turn shared our experiences so that others may grow. There were fights, indignation, jokes, laughter and sometimes even tears, but most of all there was acceptance.  It’s the feeling that we have finally found a niche where we could be what we were without fear of ridicule for being hard of hearing.

I was the only one with a cochlear implant back then, and I was careful not to emphasise it too much as many people were still very anti implants.  Gradually I watched people accept the technology and embrace it, and I’ve seen many who swore they never would get one, actually have one.  I chuckle quietly, but secretly I’m thrilled they have the gift of hearing somewhat restored so they can enjoy life again. And I’m overjoyed, that this hasn’t meant that they left SWC, in fact most stayed and the list is richer for their experiences that they share.

I’ve watched the list grow – from a single list – SWCForum, to Six lists, 3 Facebook pages, a blog, and we even have a twitter account somewhere!  Each list, although similar because we all share the trait of hard of hearing, is different because of the personalities on each list.

SayWhatClub is now an incorporated society run by volunteers. At the top we have the Board of Directors who meet monthly and take responsibility for the club’s growth, putting in place improvements and try and keep up with the ever changing technology over the years.

We have a number of committees that ensure the smooth daily running of the organisation, from the website, to welcoming new members, and to ensuring the lists don’t stagnate, and for organising our yearly conventions.

We have a convention every year in a different part of America each time. These involve workshops, socialising, and loads of fun. You get to meet in person the people you’ve been talking to for years. I’ve been very lucky to attend three of these – one in Philadelphia, one in San Antonio, and one in Boise, Idaho. The friendships that I had forged over the years, were now cemented in person.

SWCers come from all over the world. We have USA and Canadian members, but also Australia, Netherlands, Finland, the UK, and India to name but a few.  We are a diverse group, from different backgrounds, different religions,  but our hearing loss binds us together.

SWC for me has helped me grow as a person. It’s given me opportunities that I never have been given otherwise. It’s helped my confidence, it’s made me more patient, it’s taught me about American Politics (although I’m not sure I’m richer for that!), it’s taught me about different cultures, but most of all it has taught me that valuable friendships can be made across oceans, across cultural divides, across political divides, and no matter what we say – we’re still friends.

It’s now 2017.  I’ve now been a member of the SWC for 22 years.  I’m still here. My implant is now 24 years old and I’m starting to feel old!

Check out the SWC Website, and if it’s what you’re looking for, click “Join”. You won’t be disappointed.

You can also join our Facebook Groups, we have two – one for people between 18 and 40, SWC Gen-Y. The other  for everyone, Say What Club, Friends With Hearing Loss.  We also have a public Facebook page, SayWhatClub, A Worldwide Forum for People with Hearing Loss where we share many hearing loss-related articles, videos, news items, and useable information.

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Attendee Shares Her SWC Convention Experience

In SWC convention on September 1, 2014 at 5:27 pm

By Nancy Fenstermaker

Nancy  (picture by Chelle)

Nancy (picture by Chelle)

Lorne Smith, the President of the Say What Club opened the seventeenth SWC Convention which took place in Madison, Wisconsin at the Madison Concourse Hotel on July 2014. He welcomed the 32 registrants, families and friends to 2 days of workshops. The importance of this hearing loss convention is to encourage participation between SWC nine email lists members through social contact and educational workshops.

Lorne's Welcome (picture by Chelle)

Lorne’s Welcome (picture by Chelle)

Dr. Samuel P. Gubbels, he researches regenerative therapies to study hair cell loss in the human ear which causes 80% of hearing loss. The ear is fully grown at birth and it has been assumed that the hearing loss is irreversible. In his laboratory he uses acoustic energy pathology of animals to compare the development of the human ear’s cochlea receptor before birth. This research is based on gene therapy involving the organ of the Corti in mammalian animals. The gene Atoh1 is inoculated into the cochlea of their inner ear to regenerate hair cells or auditory sensory cells. To quote Dr. Gubbels.. “Hair cells have to be attached to the brain or they won’t work.”

Dr. Gubbles

Dr. Gubbels (picture by Chelle)

In the laboratory, mice and guinea pigs are tested for reactions to Atoh1. Atoh1 generated hair cells are functional. Other ways to regenerate hair cells are to use endogenous inner ear stem cells in the human ear. Mouse stem cells are like Adult inner ear. This invivo model can be improved with his lab’s work in a variety of pluripotent stem cell types introduced to their invitro model. The University of Wisconsin Stem Cell & Regenerative Medicine Center uses the pluripotent stem cell in collaboration with the laboratory of Dr. Su-Chen Zhang. This stem cell research looks at the inner ear’s sensory epithelia that detect the mouse’s head motion, balance, and sound. The laboratory tries to create mechanosensitive hair cell-like cells from the mouse’s embryonic and pluripotent stem cells. This invitro research has to be recapitulated into the invivo development of the mouse’s inner ear. The scientific markers and progenitors from this stem cell research open up a future of evaluation into the results of their laboratory findings. They review Stem Cell Clinical Trials around the world not just in the USA. The further research will lead to more important uses of the pluripotent stem cell into cell-based therapies for hearing loss. One model used now in humans is the cochlear implant which spark hair cells to talk to the brain. Dr. Gubbels concluded his presentation and the fielded the audience for questions.

Workshop attendees.

Workshop attendees. (Picture by Chelle)

Lorne Smith, president of the SWC during the workshops. (picture from Chelle)

Workshops (picture by Chelle)

Tina Hallis, is a Ph.D. speaker and trainer for her company The Positive Edge. She spoke of positive psychology through positive thoughts and feelings. She started with a discussion on why it’s hard to focus on the good. Our brains are wired to survive so we are by nature of cautious. If we are outside and walk by a field on the horizon do we see a cow or a bull? We think it might be a bull…a negative thought but a survival technique. So we need to think it might be a cow first. The Positive Edge trains our mind to change our brain. We can do that by adding positive moments to our day. Sing a song or talk to a friend. Do a kind deed. Anything to make us smile. A smile trains our minds even though it’s subtle. A smile can communicate with your brain on through a neural connection. We have to rewire our brains. She wants us to realize we can be happier in life. List some positive moments in our day. Think of good memories. Tell someone a positive about them. Use happy and positive thoughts to feed your “mental nutrition.”

Cochlear Implant workshop (picture by Chelle)

Cochlear Implant workshop (picture by Chelle)

Julia Biederstein, Advanced Bionics, their Cochlear Implant offers close to a normal-hearing ear. She presented a drawing and a handout of the ear, labeling all the parts of where hair cell loss occurs. This loss creates hearing impairment. There is the outer ear, inner ear and three small bones in the eardrum. The eardrum creates a chain reaction with auditory nerve with hair cells. In a hearing loss person these hair cells are missing.

First though their company wants to know if an adult is a candidate for a CI. She covered a few questions the listener should answer…do you have difficulty following conversations without lip reading; hear pretty well in quiet environments but struggle in noisy and in a group; cannot follow telephone conversations. Does the listener feel socially isolated in everyday life or at work, etc. ? Then get a Advanced Bionics Cochlear Implant.

Dr. Juliette Sterkens on hearing loops. (picture by Lorne)

Dr. Juliette Sterkens on hearing loops. (picture by Lorne)

Dr. Juliette Sterkens, AuD was Say What Convention’s Keynote Speaker at its banquet. She has a audiology practice in Oshkosh, WI. Through the years she has become a part of hearing loop history. Standard hearing loops was set in Europe with the IEC (International Electrotechnical Comission). During her presentation she asked who was wearing Cochlear Implants or hearing aids. These two devices need to have telecoils to listen in a hearing loop room. She has demo device with earbuds to let all the audience members experience what hearing loops do for one’s hearing. The magnetic field and flux lines in a hearing loop room are regulated by the IEC. It is a universal collaboration between listeners and the looped community because along with the IEC standard, the British ADA mandates hearing loops. The United States has no regulatory organization because it follows the IEC. All hearing devices are now universally linked through loops so the same US or Canada or other country listener can travel to Europe and hear in the loops there too.

A hearing loop is a wired placed around the perimeter of a room connected to an amplifier. The loop receives an input signal at the same time creates a vertical magnetic field, fitting the IEC standard. The magnetic field reaches the telecoil in the cochlear implant or a hearing aid. Dr. Sterkens noted that audiologists have to know to position the telecoil vertically for hearing loop use. The telecoil is programmed and configured into the wearer’s cochlear implant or hearing aid. The benefits of telecoils in a hearing loop is the difference between sitting in a theatrical play and hearing all the distracting sounds or the performer’s voices brought directly to your ear and no distractions.

diagram of hearing loops (picture taken from ListenTech.com)

diagram of hearing loops (picture taken from ListenTech.com)

Dr. Sterkens, in addition to being an audiologist who understands the benefits of hearing loops also knows that advocacy for additional loops in the community is essential. She gave all audience members Hearing Loop Surveys to be filled out by the cochlear implant or hearing aid wearer. As advocates for hearing loop installation, the Say What Club members can relate their satisfaction on this survey. Their experiences with hearing loops and telecoils are important in the survey. Understanding how to tell the community about hearing loops is important in advocacy. Go home from the convention Dr. Sterkens says and tell audiologists about hearing loops. “Foster the Change” get out and complain, better yet tell the media. Take your Hello Card with you everywhere as it explains that a hearing loop would make a certain venue ADA compliant. Get the Community in the Loop.

Thank you Nancy for writing about the SWC convention.   We are glad you enjoyed it.