Living WELL with Hearing Loss

Yes -- learning how other people live well with hearing loss would be wonderful and most welcome, especially for those who are still fairly new to losing our hearing
There is a large percentage of us in the US who do not have/use smart technology for Zoom virtual presentations. A great many of us are elderly; among our top list of concerns are very valid and rational personal invasive privacy and security issues. Are all of these HLLA meetings & presentations equally available on YouTube? (it's been awhile since I checked the HLLA website) Are written transcriptions also available for all of them as well?

@julieo4 I couldn't agree more with what Julie says here, especially her first sentence here. I just want to underscore the importance for everyone of the resources HLAA offers - the information, education, and support. When I first joined, I'd had about 60 years of of my life with normal hearing. I was most interested in the support and information it offers. As far as the education aspect, my attitude was I wanted to continue with my life as a normal hearing person as much as possible and did not want to get all invested in learning about the world of hearing lost. But...I found out the world of hearing loss, especially via HLAA, has a lot to offer and that getting myself educated about it really helped me cope that much more effectively.

I don't know if they are available on youTube. They are usually recorded and posted on the website, but it takes a while for HLAA to get them up on the site. HLAA has bent over backwards to assure security. If you check the website for the link rather than using the one I provided, you will see the notice about security. Many hard of hearing people are elderly, yet many are pretty savvy about technology including videoconferencing. I encourage people who live in senior complexes to ask staff to sign in to these meetings. Perhaps on a big screen. We are not pleased that meetings cannot be held in person, but videoconferencing is the next best thing to being there....and it appears to be the way of the future. The best part is that it is all inclusive. You don't have to be a member and you don't have to travel to participate.

@julieo4 There should be more than one vehicle/platform available to meet the communication needs of everyone, not just those who are tech savvy or have specific types of smart technology
available in their homes (not all elderly reside in senior complexes as the majority of us still maintain our own homes). Our multiple concerns of the very real risks to and of our personal privacy, being leery of having such invasive and intrusive technology in our private homes and spaces, are more than warranted and justified. How difficult can it be to also provide alternative platforms and formats for those who cannot access Zoom? Not everything that is widely used
is necessarily "good" ....there are consequences that can/do overwhelmingly outweigh the
'benefits' (short vs long term) of the "good".

Here is a link to the HLAA sessions on YouTube. I hope that will be helpful to you. https://www.youtube.com/user/hearinglossaa/videos Thank you to John Bishop who pointed out they were out there. HLAA is very understaffed, so it takes a village to get things done. Some of these You Tubes are old, but the newer ones are meetings that took place in June at what would have been the annual national HLAA convention. They were posted recently.

For the most part, the best 'platform' HLAA has, is through the meetings that are held by chapters in various places in the country. There is nothing better than getting together to learn and converse in a room where communication rules are followed and technology is used to create communication access. Meetings have real time captioning, which is referred to as 'CART'. That is the acronym for computer assisted realtime transliteration. It is done verbatim by a stenographer. All of the YouTube meetings include those captions.

Communication rules suggest that only one person speaks at a time, those who speak area asked to use the microphone that is connected to the assisted listening system and public address system in the room, etc.

I encourage you to attend a live HLAA meeting when we get past the pandemic. We are all very isolated right now. Zoom and Google Meet have given us an opportunity to stay connected. The upcoming meeting mentioned in my earlier post will likely be on the website or on YouTube within a month after it's recorded. I hope that helps you.

@julieo4 Thank you so much for all the helpful information. When I joined HLLA last year I immediately searched for a local chapter. Unbelievably there are absolutely none in my area
( I learned a former chapter disbanded years ago, with no mention since of any possible replacement chapter forming in the near future). The 'closest' and only one in the western half of Washington is close to northern border with Canada, well over an hour's drive (which is too far for safe night time driving). About a half hour+ drive there was a solitary support group that hosted a monthly gathering (their time/dates did not work for me). I will immediately explore all the YouTube HLLA videos in the link. As are many who are still adjusting to our new hearing loss lives, I am the only one in my circle experiencing this new life. I know and still remember all too well how difficult it is for my friends, neighbors and acquaintances here to understand my circumstances. I had no idea what my late mother was truly experiencing with her hearing loss each and every day in the last few years of her long life. We all tried to be empathetic, helpful and understanding. Of course we could never truly know or appreciate what she was facing 24/7.

HLAA Chapters are all run by volunteers. Many who work in the national office are also volunteers. Burn out happens and chapters shut down when the energetic people burn out. People won't step up to help. I know this is true with other organizations too. You might want to contact those chapters in your state that are active. Perhaps they have a mailing list that can include you on special events that might be worth the travel. Aside, our hearing loss affects everyone with whom we associate. Coping with it is a two way street.

As a young person with hearing loss I felt so alone and out of it. I knew I was frustrating friends and co-workers. Before HLAA I was so embarrassed by it that I stopped doing the things I had always enjoyed. Imagine someone apologizing for not being at your home on time because they were 'at their neighbor's wake', and responding by saying 'It was such a nice day, I hope you had a chance to go out on their boat.' Wake/lake easy to mix up, just like mother/brother, buried/married. It happens so easily. Now, many of my old friends and family members are telling me they had no idea why or how I struggled with this. They are now in their 70s and are experiencing the same thing.

I hope you find those YouTube videos worth watching. Please share what you learn with your friends.

Here are links to the HLAA Wisconsin summer newsletter and the HLAA Fox Valley September newsletter. Both issues have a lot of good information about hearing loss, masks, research and more. I thought that some of you might enjoy reading them. I'd love to hear your thoughts. Julie O.
https://www.hlaawi.org/uploads/6/6/8/0/66803257/2020_september_nl_color.pdf
https://www.hlaawi.org/uploads/6/6/8/0/66803257/2020_hlaawi_nl_summer.pdf

I sure understand your concern about the invasive ness of technology! I’ve found a solution that gives me security, well two really. One solution is to use the browser DuckDuckGo.com. DuckDuckGo is a secure browser you go to when you want privacy. The site scrambles your home address (Internet protocol address belonging to your computer, laptop, tablet or phone. The site you go to then has zero idea of who you are or where you live - they just see DuckDuckGo. The other solution I use is even better. I use a VPN. Virtual Privacy Network. There are lots of free ones for those of us who don’t work from home. A VPN protects your privacy - we do banking online because we live in our RV and are virtually secure and private in those transactions. When I go on Zoom, I turn on my VPN and it protects me. When I buy something online, I turn on the VPN. Hope this helps!

@lizzy102 Lizzy, what VPN do you use?