Hearing Loss: Come introduce yourself and connect with others

You sound like a very special grampa! Do you ever take the grandkids; one at a time, to do something unique to them? I do that whenever I can, but I only have 4 of them. It's so special to just have some one on one time. It's also amazing what you learn. Good to look at all the things we can do instead of focusing on what we can't do or have lost. We need not be defined by our hearing loss unless we choose to be. Blessings to you!

@rosemh I wonder how long you've been feeling such frustration? And which things make for frustration. I'll mention a little about myself because it might give some perspective. My hearing loss is worse than yours as it's labeled severe to profound. (Just a few years ago I replaced my hearing aid with a CI which was a good move.) It forced me to retire from my profession, which I was very invested, in at the age of almost 60 because it involved a lot of listening. Had I not had the hearing loss I would probably still be working 20 years later! When I had to retire, I very soon linked up with HLAA which then provided a whole new world of interest, challenge, new people and satisfaction. That certainly helped to significantly lessen the feelings of frustration besides developing skills with regard to coping with hearing loss.

Barb, I’m inspired by your story. You seem to have fully accepted your disability. I’m still working on that. I get frustrated because I can’t watch a lot if tv programs because I can hear, but not understand, what is being said. I use captioning when possible, but that’s not always available. I attend meetings and have trouble understanding. Although, now with COVID-19, there are mostly Zoom meetings and I love those because I can understand! I read a lot so that’s good. But I want to figure out some technology , which I know is out there, that might make it easier for me. And I’ll have to make an attitude adjustment. Thanks for “listening”.

Hi Rosemh,

Are you using hearing aids with telecoils or BlueTooth capability? If so, there is technology available to connect you directly to the sound system of your TV. Your hearing aid provider should be able to help you learn about those options.

Captioning is wonderful. Most programs are captioned. If that isn't the case in your area, especially with local news, etc., do contact the stations to let them know it's important to you. Captioning can also be provided at meetings. It's referred to as CART, which stands for computer assisted realtime transliteration. It done by a stenographer. It is equally as important as a form of 'communication access' as providing a sign language interpreter for deaf people is. You have to ask for it in advance, and insist on it if you are attending a public meeting. Churches and other non profit groups are exempt from providing communication access, but many do because they care.

There are other ways of getting access to communication, including automatic speech to text translation apps on cell phones. I'm still trying to find out if those apps can be transmitted to a screen for many to view. It would help a lot at meetings.

I hope you will find ways to adapt to your adult onset hearing loss. There are so many of us. It helps to talk about it.

In response to Rosemh's post, it IS difficult to accept that you cannot hear the way norms do! Almost 40 years ago, I lost hearing (and balance) on my right side due to Meniere's. Sound was distorted, and I had lots of recruitment, so I was forced to quit playing in amateur classical groups. Because I believe that creative people simply must have an outlet, I began to spend some time painting, and learned to knit involved Aran pattern pieces. The knitting really helps during meetings, as it can keep my mind busy and help me slide past when I can't hear well enough to participate. Recently, after a year of being virtually deaf because Meniere's went bilateral, I achieved a remission and regained the level of hearing I'd had over a year ago. Amazing how what used to seem inadequate is now amazingly wonderful! After I've done more of the intense work needed to gain more stability, I intend to go back to Costco and see about getting an aid for my supposedly unaidable ear. Before I went deaf, the fitter at Costco had suggested that I might want to try that, but it didn't seem like it was worth the effort and money at the time. However, now I'd like to give it a shot. During the year that I was nearly totally deaf, I learned that I really can hear a little on the right, so it may be worth it. Over the years I've finally gotten to the point where I can at least listen to music (even though it doesn't sound right), but I don't like to attempt anything I don't know at all as I can't imagine the parts I'm missing. Still, I had been going to a few classical and jazz concerts the past three or four years. Baby steps!

Hi..... Loved your comment "What used to seem inadequate is now amazingly wonderful". I recently had another significant hearing loss. Left ear pretty useless already, now right ear went from 95% word recognition during testing to 45%, enough so I could no longer understand what my husband was saying 6 inches away from me. We were writing notes and using texting to communicate. Just finished a 10 day course of oral steroids and regained 10% in that ear. It is enough so that I can hear and understand him if we are out on the porch early in the morning. So now we have our "porch time" date each morning at 7am to discuss and plan the day.
Now I am doing a course of three once a week steroid injections into my eardrum. Done it before..... not fun but worth it if it helps more. I'm hopeful but meantime am so grateful to have the 10% gain!

Hi all, Today's member spotlight features @julieo4, a member well known to members of the Hearing Loss group. Read her interview with @hopeful33250 to learn more about Julie: her involvement in HLAA and how that led to her becoming a member and mentor for Mayo Clinic Connect, and her unrelenting advocacy for people with hearing loss.

– Staying Connected with Assistive Technology for Hearing Loss: Meet @juieo4 https://connect.mayoclinic.org/page/about-connect/newsfeed-post/staying-connected-with-assistive-technology-for-hearing-loss-meet-juieo4/

+Follow the About Connect page to see all the Member Spotlights and be notified when new spotlights are published: https://connect.mayoclinic.org/page/about-connect/tab/newsfeed/

@judyca7 your recent hearing loss sounds similar to mine. My hearing of sounds/volume hasn’t changed much but my speech recognition has degraded badly. One ear is now profound and the other severe.

Do you know what caused your hearing loss? I know it can happen with aging, but I believe that both cirrhosis and immunosuppressants can also cause that, but rarely. I think they exacerbated my loss which started in 2004. As my husband has aged his voice is less clear so it’s almost impossible for me to hear him the first time he says something.

Having hearing problems really is isolating. I had been going to water classes prior to the pandemic. It was a large friendly class but I was definitely an outsider because it was impossible for me to communicate over the sounds in the pool area and I have to pay a lot of attention to the class leader. This despite wearing my HAs into the pool - my head does not go under.

Phone calls with customer service people are impossible! Frequently they have strong accents and they always speak fast. My doctors are pretty accommodating.
JK

@judyca7 Judy - you mentionproblems hearing on the phone. Are you using Caption Call or Captel which I find helps immensely with hearing?

Hi JK..... I have Takayahu's Arteritis, an autoimmune disease diagnosed 20 years ago. It can cause all kinds of problems over time. Did very well until 4 years ago. At that time I had to be treated for a lung infection caused by the Takayahus and had to go off the immune suppressants while on a combo of three antibiotics. After 4 months on these antibiotics I developed vertigo which I have 24 hours a day. A week later a significant loss of hearing which has gradually gotten worse. It's all about keeping the immune system suppressed enough do that inflammation does not cause all kinds of problems. When inflammation from the Takayahu's gets high, there is more hearing loss.