 So I'd like to welcome everybody to our meeting today and we had a little bit of a glitch this morning. I'm getting our captions to start but here we are and we're all set to go. We'd like to welcome you to our last meeting of the year and we will not be having a meeting on January 1st because obviously it's January 1st so we won't be seeing anybody until February. I'd like to introduce myself. My name is Ann Thomas. I'm the president of the HLA Diablo Valley chapter and I'd also like to introduce my fellow board members and just have them say hello so that you'll know who they are. Zoher Chiba is our vice president. Hello, welcome. Jill McFadden is our secretary. Good morning. And Walt Bateman is our treasurer. So Walt you're going to have to unmute yourself to say hi. Well, Walt is here. If you look later you'll be able to see him when with a and what happens when people talk there's a circle a colored box that goes around everybody's who's speaking thumbnail. So before we get started we'd like to go through our normal directions for viewing Zoom on a desktop. We know that there are some people who are by this time old pros and very skilled at this and there are also people who are still coming on new and we want to make sure that everybody becomes skilled and comfortable using Zoom because it's a wonderful benefit for us with hearing loss. We're able to view people closer and read lips and we all can only talk one at a time. So the first thing and the most important thing for all of us is that we have access to closed captions. So if you're not familiar with how to do that these next pieces that I'm going to be describing to you are at the bottom of your screen and you're going to see a toolbar and right now we have a live captioner and the captions should be streaming for you. If by some chance it's not open up that CC window and the top option will be click on subtitles. You have two other settings that are available to you and one is to adjust the size of the font and the other is you can view a full transcript and I don't know if you're like me I'm going to I'm assuming that many of you are I frequently don't realize that I didn't understand a word or didn't understand something until the captions are already passed. So if I have the full transcript open I can scroll back quickly to see what was said so that then I catch that and then I can come back to the meeting and the captions and keep going. The next thing we'd like everybody to do is to in Q&A or whatever you want to talk is to raise your hand. It makes it much easier to ensure that people are called in order of when they would like to speak. So what happens on our side is that we see a hand in the participants window and also shows up in your thumbnail. The participants window orders the manner in which you raised your hand. So at the bottom of your screen you have all of your zoom controls. So if you see the microphone all the way to the left by clicking that you can turn your audio on and off and we've turned everyone's audio off until it's time for you to speak so that we don't get feedback because what happens when the audio option is open it hears the sound from everybody's space and it creates a warble and distraction for our sound. You can also turn your video on and off. If something happens and what happened at one of the early zoom meetings was somebody got undressed and didn't realize that they still had their video on so everybody saw this person getting undressed. So if you're going to do something that you don't want people to see you just remember to turn your video off. You also have a chat option and we encourage everybody to chat with each other. We'd like to ask that you can ask questions you can say hello to friends. Once again click reactions to raise your hand and you can turn your captions on and off. We'd also like to mention that you can move the caption window anywhere you would like on your screen all you need to do is hold it down and move it out of the way. Usually we also ask that people rename themselves because since we have zoom now we have people from all over the United States. I already saw today I know that we have Arlene is from New Jersey, Geneva Ralph is from Oregon and that way it allows everybody else to see where people are coming from. This is maybe one of the most important things when we have presentations other than the captions. So you have an option if you look in your upper right hand corner when you click on that item that says view you can select speaker, gallery or immersive is kind of like a matrix. So the two that are the most important for everybody are speaker and gallery and I always turn mind to speaker so that I see what's on the screen below with Zohair and the importance of this is that while the presenter is talking I can adjust the thumbnail of the presenter and also the presentation. So see that red circle there are lines in the middle there when you click on that you can drag the windows back and forth. I like to be able to see a large enough picture of the presenter to aid in lip reading for me. Someone else may have low vision and they really want to see what's on the slide so maybe for a slide that's really important to them they would make that slide bigger. This is something especially for me when I get nervous or excited I tend to talk faster. So I would like to remind everybody to speak a little slower than normal. It makes it easier for all of us and it also makes it easier for the captioner. If by some chance you have an external microphone if you didn't connect it for this meeting we'd like to remind you to dig it up for future meetings because it is the deregure gold standard for audio using zoom and so if you see today in the past Alan my old microphone was dying I have a new microphone now and I have an adapter that takes any microphone that you might have and converts it to a USB microphone for use with your computer if anybody's interested in that let me know I'll be happy to provide that. So it's my great pleasure now to introduce my colleague friend and fellow advocate from New Jersey. She's a well-renowned national advocate HLAA leader and author. Her communication tips from Arlene was originally published in what is now called the hearing life magazine in 2008 and for a long time I wish there was some way we could have Arlene come and talk to us about the great tips on how to make our holiday experience easier for us or more positive. So Arlene I'm turning it over to you and so everybody knows I'm going to be advancing the slides today and Arlene is just going to say next and then I'll move to the next one. It's all yours Arlene. Thank you Anne and it's really I just can't believe I'm here this is like a dream come true. If you can listen to me I'm originally from New York okay and I don't sound California at all just I'm listening to myself just to tell you I'm in New Jersey about five miles to west from the George Washington Bridge right now I can see Manhattan from my window so welcome to my territory. I started off in New York and a lot of advocacy is between New York and New Jersey. Now I wanted to tell you how I came to be here today how that article got to be written and to understand that you really have to know a little about a little bit about me and my hearing history. Let me just first ask am I speaking slow enough clearly enough microphone enough just as a communications check okay okay because I know that some people are reluctant to cut in and say no and I've had that experience somebody came up to me at the very end of a presentation and said she wished she had sat and this is what this is about this is what HLAA is about you have to know what your needs are and you also have to know how to make those requests so it's all part of this presentation. I am a late deaf and adult I started losing my hearing as a teenager waitings I got through college okay but I got my first hearing aid at age 23 one hearing aid I'm not a teenager anymore this was back in 1972 so they only had people wear one hearing aid they didn't do two hearing aids at that time so as my hearing loss progressed slowly I changed that hearing aid one hearing aid in my right ear forever so it took 25 years for me to go from normal hearing to profoundly deaf and gee am I lucky because when I was at the profound level the telephone relay service came into being my friend actually said I was lucky because I could use the phone then I got even luckier I found HLAA 1991 and I learned through the exhibit halls in the conventions that there were cochlear implants and I tracked those cochlear implants every year at those HLAA conventions in 1997 I got my first cochlear implant and 2008 my second so I went from normal hearing to deaf in 25 years and back but first 10 years with one ear so single-sided deafness and then that broke so I was totally deaf for a month and then I went bilateral so I got two so I've been there and done that okay I know everything pretty much but I was not content to just have it my story when I started losing my hearing I said and it became apparent this was going to be going on and on if this is going to happen to me and something good should come of it so there's always some way to make some good come of it so that's lesson number one before we even start attitude because you know what was me I wish we chuck it okay because you can do many things with the hearing loss if you have a good attitude it's not Pollyanna and I'm going to take you on this path now to the actual meat of this presentation today communication tips from Arlene seven tips seven tips to better communication during the holiday season okay now just imagine that holiday season with your family and friends and group parties maybe not so much this year with pandemic but that big dining room table the people close by and you get overwhelmed so I'm going to give you the quote that started this article that I wrote in 2008 the holiday season can be very stressful for someone with the hearing loss with large family groups gathering laughing and conversing it's easy for someone with a hearing loss to feel left out isolated bewildered and sad now just recently I mentioned this to a committee I on that was formed when the pandemic started it's called the New Jersey Disability Action Committee all people with disabilities I was the only one with a hearing loss they sent out an email wishing everybody a wonderful holiday season it's great time of year we love it and not one of those people had a hearing loss I sent them an article I wrote on real they had no idea that for people with hearing loss the holidays it's not really the wonderful thing that they were looking forward to and let me tell you had all disabilities in this group paraplegic and I mean you just every sort of thing wheelchairs cognitive just everything but hearing loss they thought everybody just loved the holidays I said no not quite so let's begin on how do we tackle these holidays okay the first thing I told you was power positive thinking and not in a polyanna way just realizing being eyes wide open that this holiday season and the social the social events you are going to be involved in are difficult for every person with hearing loss ones from mild to profound everybody with a hearing loss is affected by these types of festivities they're hard for everybody so it's not just you and it's not something you're doing wrong your audiologist did wrong everybody has impacted this so once you realize you're not alone in that boat I think that's that gives you some perspective on what you're dealing with okay and the second point I want to tell you is be kind to yourself you can say gee I wish I did this or I wish I were in here and oh I wish I didn't have this hearing loss and all sorts of things just now put those negative thoughts out of your head think of what you can do your positive effects that you can do and not on the negatives that you can't do all right and I'm going to take you through all things that you can do without even me knowing what your what your level of hearing loss is or what you use hearing aids cochlear implants everybody can do something okay and from that words of wisdom think that the glass is half full and not half empty next slide please and okay what's the easiest thing to do when you're you're somebody with a hearing loss the easiest thing to do is talk with somebody one on one face to face that is our easiest way to have a conversation in whatever all situation we find ourselves in so you're at a family gathering and the living room is really crowded the noise level is really crowded so you go back to this single word of advice one on one one on one how can we make this one on one well maybe you find a friend or a relative you love to speak to and seek them out but don't stand in the middle of living bring them to a quiet location or maybe they're a little children grandchildren or whatever you haven't seen in a while take one and also bring it to another room a quiet room now what I'm describing is in a underservedness and you really have to like want to do it if you're in a well with me state you're not going to do this don't get out of that well with me state you're going to say this is what I can do this is playing to my strengths okay it's it's really sports one I just thought of that okay what else could you do um mosey into the kitchen the kitchen is generally acquired a place and you may even find some nibbles that's good you know like have love feed yourself okay kitchen is good nibble um you might find you're good at cutting up carrots or something just find something that is positive that you could do and maybe not think about conversation so here are those were some ideas and I'm sure you'd come up with your own but depending on your situation thinking positive my hearing is not great in this noisy environment let me try to do something positive okay thank you and next slide please now we get to the heavy stuff okay because it doesn't really say so on this slide but now we are approaching the dining room okay with all those chairs and you are going to have to strategize in that dining room because where you sit um who you sit next to the location is going to impact how you survive this dinner okay it says be pleasant and polite but assertive all right you are going to be assertive now I know from long experience that even though people with normal hearing can be gracious and want to help it really can depend on how you do the ask because they can become not so gracious and wonderful and lose patience so you are going to play them all all right I you know I'm saying things that are coming from the last 10 years where I have nuanced this information okay the first thing you're going to look at where should I sit who should I sit next to which part of the the table should I sit next to well now you have to figure out what's your situation I know people that have single-sided deafness okay if their their right ear is deaf they better not sit on the all the way left on the table they are going to have to sit where their ear can hear the most people same deal if we have one hearing aid or a better ear put yourself where most of the people on the side you're going to hear the most you know it's not rocket science but it requires thoughtfulness and you know maybe somebody is sitting in the seat that you feel is your best location you can be assertive and say this really would be the best seat for me to use okay you can do that smile you want to have everybody happy just keep your keep your wits about you and calm half full not half empty all right um you may know the people there some people have voices that you hear better than others some people have all beards mustaches all right you know perhaps from experience who you're best suited to hear so position yourself to sit next to that person or between two people um that's location now there are also all concerns about we are physical concerns so if there's a window in the room this is usually talked about in uh hla a uh meetings that you should position yourself position yourself facing the window because the glare from the window can impact your ability to see people's faces also if there's a tv on or music playing and like you know football games just ask the host politely i don't think you should do this yourself don't turn it off yourself but ask the host to turn off the sound they're going to say oh we'll lower the sound i had this happened thanksgiving my son was going to lower the sound i said no off off and you know people with normal hearing they don't really quite get it no off and again smile this is what i need it's going to make me function better so this may be things that you do or just do automatically but knowing that you're doing it can give you a sense of empowerment that you are in control of your situation okay now i mentioned that hearing people or they have their own little quirk so far as dealing with people with hearing loss keep smiling if you are angry or impatient or why don't you understand now believe me they will turn on you it doesn't make sense but just smile and gracious even though internally you want to say come on get with this now just calm and smile and why am i telling you this because i've experienced it that uh if i lost patience with a hearing person they would turn on me and and all hearing people would turn me i i only did this once so don't get don't get uh worried about it but this is important to do half full not half empty and assertive with a pleasant look on your face it sounds sounds a little weird but i'm telling you it impacts the way people treat you and that's the point of this next slide please and thank you all right now you're sitting at the table and you have a choice you don't really necessarily have to make conversation although it seems like a nice thing to do you know if there's a hearing person on either side of you and you decide you just really don't want to deal with you know what i know my daughter would say can't you talk all right so you can try you can try if you've been hesitant because you're not sure if you're going to hear it okay but give it a try so if you're sitting next to somebody you chose then if you start the conversation then you know what you are everybody is talking about if you wait for them to start the conversation now what are they talking about how many and the whole vocabulary set you are at a disadvantage now so okay the advice is start the conversation but i know and you know that many people with hearing loss can be motor mouths they could talk like i am forever on any topic because if they talk they do not have to listen do not be that person in this social situation okay so pick a topic anything that you would like to discuss and you can ask a question and nothing matter what the answer is you know what the question is and i am saying all this you may think it's like that's not real this is real it allows you to socialize on a level that you can handle now it's up to you because you're hearing and whatever and we'll get to some assistive devices you may be able to handle more normal type things but this is in a kind of worst case scenario okay now um if you don't hear something and this is just conventional wisdom hlaa don't just say what hearing people really respond poorly to what because they don't know which what all right this was it the last hour they were talking or the last word they said what gets them nowhere so if you can supply any information at all that um can give them a clue as to what you missed do that anything i you could tell them i heard you say the word sunshine uh what were you talking about and now they can grab on to that but if you just say what uh uh uh and as you are listening to me i hope you're catching that you are creating an environment that is friendly to your hearing loss you are managing the situation but you're also making it easier for the people around you to deal with your hearing loss without blatantly you know saying speak a little closer this way you could do that too but you're tilting the odds to make this pleasant for everyone careful can we advance aside please thank you all right this is the one that i this is my favorite worst of all the topics and i'll tell you in a second have you ever been in a room where somebody told a joke or something funny and everybody is laughing because it is so funny except you who have no idea what was so funny okay now would you like to know why this happens and i told you i've been dealing with hearing loss of 50 years i have rarely gotten a punchline on a joke and that's with state of the art cochlear implants all the technology and all the the techniques the punchline is funny because it's not what people are expecting okay and any lip reading and comprehension that you are dealing with that is not a hundred percent hearing you know context and expectations by definition the punchline is not going to be anything that you were expecting so you're going to miss it all right and so your blood pressure starts to rise that you're the only one in that room that is not laughing and what do you do all right you could say it's not important but in in your horror hearts everybody's laughing wouldn't you really want to know what was funny so you have a couple of options good ones if you are next to that person that you're comfortable sitting with ask them what was so funny and you know if it's one on one you could ask for repeat to whatever know whatever works that you will get that joke however sometimes there are more funny stuff coming along and the hearing person says wait wait wait so you know you can be a little bit savvy and say remember that joke and tell me later okay so now you've solved that you're at peace with that thing you didn't hear and you have a plan to be happy afterwards all right and that could work now if you really had a couple of drinks and you want to be a little assertive you could stop the whole table depending on you know if you were the whole bunch of college buddies fraternity brothers wait I can't hear that I didn't hear that stop and tell me the whole joke again so I can I'm just mentioning this option because you'll know what's appropriate in some ways that will be horribly inappropriate but you never know you could like laugh at it all so that's jokes that's jokes um I think we'll go to the next slide thank you okay you've survived the dinner table got it now there are strategies for after because there's more social lasing after it's very similar to when you first walked in now um I thought about this and I have these strategies going back into the kitchen and there is lots in that kitchen where you can do things that don't even require talking or people it's not so noisy there's no tv so you could think of a few things and I'm thinking if you want to just face a wall and and part of with things you'll be fine it depends on your state of mind to do that the other option now I'm I'm considering is that you don't always have to be doing something you don't always have to be conversing you don't always have to be with people you can take a time out you can just go somewhere quiet and I would say you can and snoop around just what works for you but not that oh I've had it with my hearing and this is terrible no I'm up to this part or abused all my strategies and it's fine for me to take a break I do not have to hear everything like every hearing person thinks they should you know and I've had people say you should have asked me what we were talking about when they realized that I didn't well I chose not to not to because I had had it was up to here so that's an option too you can just chill out a little bit chill out a little bit so it really depends you can go back to all those strategies I mentioned in the beginning pick out a child pick out a friend that too but the point is if you go in with a strategy and you're saying I know this is difficult I know I am like every other person with hearing loss so knowing that means that my expectations to function like a hearing person are that's not realistic so I'm going to do what's good for me and Arlene and Anne and Bob and all the other people here that this is how we're going to survive next slide in okay the issue of drinking or not drinking uh it's really kind of funny thing because um if you're relaxed some people report that they're better lip readers when uh drinking and then some people report that they're worse lip readers when they're drinking so this is a very individual choice about alcohol um yeah I just keep thinking there are pros and cons of drinking itself that have nothing to do with hearing and of course never drink and drive but I put the slide in here because uh drinking is a typical part of holiday festivities and so you should be aware of how it impacts your hearing either positive or negative so this is uh see all the question marks and I don't know I could give you that what that means it means this is something you should consider but it's going to be different for every person so consider it and make your own choice so thank you for that one and next please okay now I mentioned that uh there were assistive listening devices or assistive devices that are good for social events and other events too um and these definitely should be considered if you have not tried them or seen them or even known about them usually HLA people are pretty good about knowing about these devices especially if you get the magazine he tried and true oldest one is the pocket talker and while you're thinking we're thinking in terms of how are we going to function better with these devices I'd like to give you a little perspective on the pocket talker we know that there are older people who may not have hearing aids who hear whose hearing is deteriorating you know in their 90s or more and uh could benefit just from a simple pocket talker if that's a handheld device with a microphone the microphone uh and headphones are a way to interface with hearing aids so somebody speaks into the microphone and it goes straight to somebody's ear very low tech the interesting thing with pocket talkers back here in New Jersey uh those pocket talkers were given to patients in our local hospital if they were discovered to have hearing loss and the patients when they used them as a patient in the hospital did not want to give them back when they were discharged so they took it upon themselves to actually buy a little cheaper version but still worked and send the patient home with the effectively a pocket talker and I got a letter from I was involved with this hospital access uh so I got a letter from a woman who got one of these and she was at a holiday party and was able to hear her grandchildren for the first time she would always just sit there and that meant a lot and and a little too late for me my grandmother could have used that it was working better for her than the hearing aid she was given so give that some thought not just for yourself but others in the family who might benefit from that so the other devices that are listed here are similar in nature effectively getting a microphone close to the mouth of the person speaking I have the Roger select which is a wireless uh it's about a silver dollar sized electronic thing that with lights and everything has six microphones if you put it in the center or a table it will pick up the voices of people and send it to your hearing aid or cochlear implant I have not tried it yet but it can be used to pick up a specific voice as well so I leave it to the HLA chapters with the resources of the magazine and getting word out about these assistive devices in New Jersey we have some from the state assistive device demonstration centers so people can make an appointment I don't think now with the pandemic but uh where they can actually try things out so those are the microphone based devices there are apps that caption and those have become very popular now with the pandemic and masks you know about that and so it's taking speech converting it to text on your phone so live stream live transcribe which is for android phones but otter and ava do automatic speech recognition and take voice to captioning so with ambient noise that might affect the clarity of the text it's generating so eyes wide open uh listed our personal amplifiers which I personally am not familiar with so I'll leave it to Ann for another meeting to describe all that and uh with that I would tell you that I like to take questions now but before I do I'd like to advance to the next slide and tell you a little bit more about me okay that's me a little while ago um and the picture is the cover of my book listening closely a journey to bilateral hearing I mentioned uh that uh that was my second book that came out in 2010 and it was the journey from the entire journey of my listening hearing experience from normal hearing to hearing aid to cochlear implant to device failure to bilateral and the thing is that people have told me that I'm including many many audiologists that this really opened their eyes to what hearing loss was about the importance of two ears the benefits of being bilateral all sorts of things um and that's why I wanted to mention it to you now because as I open the group up to questions uh I will take questions on the entire spectrum of hearing loss if you have things that might relate to cochlear implants it's it's all related so there's no question that's outside the box so I'll just turn it over to Ann to run this Q&A and I hope that this has been helpful to you my message to you all is that don't dread going to those uh social engagements just bring your toolbox with you and your attitude and that the glasses are full if you see it is half full and that's half the battle if I sound polyanna-ish it's because I learned that you can't train yourself to be positive and that's an important lesson which I hope you've learned today so thank you Eileen that was just wonderful I'm sure that we're going to have lots of people with questions especially since our chapter more and more is becoming a cochlear implant chapter um for those of you who are here today who don't know I've gotten actually my anniversary for my first implant is the 10th and then within six months I had two implants and my life is absolutely over the top completely dramatically altered in a positive way so Jill um you you ran the Q&A so we're open for questions everybody and don't forget raise your hand you mean Arlene did such a good job nobody has a question nobody has a thought so Arlene you know what see that that happens when you do such a good job Jennifer is releasing her hand well and if I may thank you this was um I don't have hearing loss but I'd love to translate back everything that folks who are experiencing this do to my friends with hearing you know more normal hearing so I always say I don't have hearing loss yet I want to learn everything I can as we go forward with this a couple questions um one personal you sounds like you got one of the very earliest cochlear implants can you talk a little bit about um technology have you upgraded that I'm curious how uh how that's changed for you how you've done new mapping new learning I mean and I think your progress with the new CI's is just amazing from what I'm hearing from people um I'm curious about holiday music my business is is putting on live concerts and live performances and having pre-concert dinners where I put up a um a portable hearing loop at all of the tables where I at least know somebody has hearing loss so that everybody you don't have to have a something that's um Bluetooth compatible or you know a Roger Select pen or something like that I I think there's so much more and I do think we in the hearing community really are trying to do our half of the conversation but I love some of the tips that you you've done like put the captions on the football game who needs to hear those guys oh you asked a lot of questions I have a lot of no that's great um okay the my blog when I started writing a blog was ask Arlene okay that was the name of the blog my team at the New Jersey Walkthrough hearing for the past 14 years has been ask Arlene okay and I will wear a cap ask Arlene okay I as I mentioned uh I started tracking cochlear implants in 1991 okay they started implanting them in 1989 there was one company that was implanting in 1991 and a second company came on uh into the uh was approved in 1994-95 okay personally I had to wait until 1997 I had some family issues that you can't do a cochlear implant with other stuff going on so uh 1997 was when I did my due diligence I had to have a cochlear implant at that point and the second company that you had come on their capabilities as compared to the other company at that point in time was significant so when I was uh activated I put out an email okay Facebook wasn't really there yet uh I put out an email because there were audiologists who were very interested in my experience because I could articulate what was going on and also they were implanting children so the kids couldn't report so day one I put out an email day two an email and then the chief audiologist at a local uh and a very I don't know if you know the New York League for the Heart of Hearing it's a very well known uh hearing center in New York they are now called the Center for Hearing and Communication I am on the board there I've been on the board for uh a lot of years uh their chief audiologist more they wrote me more they wanted me to write more so I was keeping uh an email journal for all these people including audiologists back in 1997 that first year and they wanted that turned into a book I said it should be a whole year and so after a year that was the first book and it showed what a cochlear implant could do at that point in time with it was higher speed uh uh stimulation that made that differ from the original company and I was able to do do music right away and also on the phone within a week so that was high speed that that uh internal uh failed after 11 years okay and the irony of this and you would appreciate it it's your question people said people who were my colleagues with cochlear implants said lucky they said lucky because I could get the internal from 1997 replaced with the new internal 2008 and it was faster speed could do more had greater capability and they built in uh space for new improvements okay so at that point in time there were people fighting for Medicare and insurance companies to cover two implants because in 2007 that's when they first started covering two implants so I didn't even have to fight 2008 too and the second book was the difference between one and two and it's enormous for things that were not apparent not apparent by audiologists not apparent to people with normal hearing you really had to walk the walk so uh the there was a third company that uh is now you know they're all competitors and we benefit because they're all competing with each other to get the latest and the greatest so yes I have bluetooth now it is the weirdest experience answering a phone by tapping it here and talking to nobody I mean I I just tell everybody hello I'm a bot you know it's like crazy but um what's significant and I'm talking to all you guys I have spanned 1972 when there was no way you could wish for something that that would allow you to hear again you just wouldn't let yourself go there it was impossible okay biblically impossible allow the deaf to hear that and then lo and behold 30 years later it's you know ffc fda approved so it's a wild ride and I felt obligated to uh document it so that's what's significant in those books as well and the um the audiologists would review all of my entries as I wrote them I'm just wanting to make sure I was making sense and their their comment was always the same more more they wanted more because they can do what's clinically they can test and and adjust but they want to know what it's like and what the significance is and so the presentation I just gave there are ways the programs on your processor to tilt the odds that you will not have to hear all that background noise and focus on one person and that's very individual to the device and to the person who's using it so you asked a very good question and that's so I hope that's helpful to you the fact that you are here as a hearing person to me is enormous I mean just that you have that interest in caring for other people with hearing loss I really thank you for that did I answer your question yeah and and of course like any good researcher and writer you opened another bunch of them can you tell me when the last update on your book was or have you because 2010 now is is a while ago well you know I've thought about that um the publisher on that book he wanted to retire it you know and I said you can't do that because the information is still current in other words the differences in the processors now or bluetooth it's not it's not changing what I wrote so what they did I mean there I'll tell you first what they did do was make a ebook okay and they turned it into an ebook and so that can be available with nobody storing you know stock they don't have to take up warehouse space and it's always available and that was the compromise but I will tell you that the company that made my processors they initially purchased a large number to distribute among their patients so there are a lot of copies out there so if you look at amazon or everything uh there are always copies that are available new used whatever the thing that I learned was I did not make a fortune on this book with royalties but um I do know that I was contacted by some audiologists who told me they would lend the book out to their clients their patients and one audiologist just recently you know the book was published 2010 just recently like you know in the past year she said Arlene you will you will have no idea you have no idea how many people you've helped with this book so I don't know what that means with numbers but uh writing a book is is not an easy thing to do but I was uh I felt I had to do this because I was a very unique position to know what was before compare contrast and you know I I'm just welcome everybody to read it it's not just about cochlear implants it's really about what hearing does to your life what one hearing one ear does to and even with your loved ones turning around to your name all of these things turning to sounds of danger crazy things you don't think about that are built in would you believe that before that second year was turned on my brain could not do that for me I had had to know there was a second one there that second one was dormant for like 40 years and you turned it on and immediately I I turned to to danger sounds that's crazy I'm like whoa why did you really put the parts in I just couldn't use that so I just mentioned that that there's a lot in that book every oh there are no wasted words let's just say that I think you can for your question I'd like everybody to know that Geneva is with the Shedd Institute in Eugene and they have won the HLAA get in the hearing loop award was that 2018 let's see uh it was when we were all excited to get to Orlando or no Louis uh New Orleans so whatever year I'm still I still gonna collect on that and we'll just do a party in New Orleans together well let me tell you I would love to party with you in New Jersey all right this is relevant um I had TQOS on hearing aids since 1970 okay but uh in New Jersey there aren't very many loop uh facilities so I really didn't get a chance we do always put a temporary loop high quality and it worked extremely well I always made sure to have my t-coil program available so I could try anything right before the pandemic I went to a disability conference in Washington DC and it was in the Rayburn building they were providing me with captioning they sat me up front there was panelists with microphones there was a an ear logo sign outside but no T I didn't want to bother with anything so I sat there with the captions and then this little light bulb went over my head let me put on my t-coil holy moly all of a sudden all the speakers that were talking were straight into my head like you cannot believe I mean unbelievable crystal clear the thing with cochlear implants is from the microphone to the t-coil it doesn't turn back into sound it goes straight to your brain okay with a with a hearing aid it turns to sound and then you have your ear with the cochlear implant it does this signal to signals so there's no nothing degenerates and my brain knew it and then right around the same time Temple Emanuel in Manhattan was having a huge Holocaust commemoration program and I knew that sanctuary was looped it's my friend as an advocate turned on my t-coil totally blown away totally blown away because it was and it was Yitzhak Perlman there there was Tova Felcher there was Joel Gray there was unreal and I was hearing better than anybody there because they were hearing from live speakers all right but I was hearing from the microphone to my t-coil so what happened next HLAA advocate we advocated for legislation and that's what we're doing now legislation to require induction loops in places of public accommodation and countertops in new construction and renovations and so now I'm a lobbyist and but I'm talking to you because it's we're all connected so if we could discuss how we can help each other I would be very much interested in that I think that's absolutely fantastic and every state should learn from what somebody like you is able to do and and and Arlene Albuquerque just had Carolyn Adamski ADAM-SKI on last month she's the gal that wrote for science magazine about being a researcher about zoom and she didn't know really anything about loops she's got a one one hearing aid one C.I. but she's a very powerful speaker it's the first time she really talked about this but I think there's a whole issue about what do we do for folks not only in higher ed and I and UVA just came out with a terrific policy statement that I've asked our university here to adopt but how do you travel to seminars to conferences to places and hotels that aren't looped that that aren't the Rayburn building and how do you deal with breakout rooms and tabling and that sort of thing so I think it's a combination of legislation but also proactive understanding what all those tools are Arlene that you brought to the table anyway another topic sorry but Adamski was a fabulous speaker and thanks Geneva and I just want everybody to know I mean all of you who are members of the Diablo Valley chapter know that I wear many many hats in our HLA family and one of the hats that I wear is I'm on the get in the hearing loop committee which is a program of HLA and I'm just finishing up the end of what turns out to probably be a four four plus year project of it's a get in the hearing loop handbook that's a hundred plus pages and there's a supplemental how to step by step advocacy document and the hope is that by having these two pieces of literature information it's going to be everything that everybody needs to have to be able to go forth and to advocate so all of the tools that everybody needs the the get in the hearing loop toolkit is on the HLA website it's been there since I think 2019 now but having everything all together including all of the laws examples of publicity pieces everything that you could want and then the supplement originally we were thinking we were going to put the advocacy piece as part of the handbook and as the handbook got so big you know all of a sudden it seemed really obvious that there needed to be a supplemental information tool and and the advocacy step by step we're now approaching 30 pages so recently when I was going through with some other with sherry paris only when we're working on this the if you have any problems planning anything in your life this advocacy guide will be a huge help for you because it's step by step planning and what kinds of things you need to think about and hopefully it's in lay terms so we'll be able to get your feedback about how well we did and I'm hoping it's going to be available the beginning of March so or mid-March there's a international federation of part of hearing people conference in Budapest and Juliet Sturkins and our executive director Barbara Kelly are both presenting co-presenting on hearing loops and we're hoping to be able to have this finished run printed to be able to take so it can become the foremost informational pieces on hearing loops in the world so I just want everybody to know that that's something that's coming and Arlene something that you might not know because you were only talking about three manufacturers of implants now we now have a fourth so within it was available in Europe for a couple years now Otacon has their implant which was approved by the FDA I think maybe in August or something like that so they're now for and Geneva always love seeing you thank you for joining us asking wonderful questions wow great group your advocacy is extraordinary and I love being I love zoom for this because I love to be able to see you all and learn from you just wanted to mention that the legislation actually was to not just do what the legislation does but to draw attention to induction loops so what we discovered was it was a two prong process because people don't know what we're calling hearing loops doesn't matter what you call them they won't know what it is so we discovered you had to educate first and then and then advocate for the legislation so what ends up happening is you discover that there are legislators who have hearing aids right and or one degree of separation thereof and also that you tell them that the ADA is ignored okay that this is our legislation um is is just saying this is our preferred method of the assistive accommodation that's required by the ADA and it's generally ignored and you tell them that and our message it's not a fast process but and we're we're in a very steep learning curve because I never did this before but we have you know made great progress and also getting people involved that we're not hearing loss advocates the entire spectrum of people with disabilities we have a committee now that covers everything and we are one for all and one for one so that spread the number of people who could write letters or could support the effort so I mentioned that to you because it really was significant all these years we were just hearing loss not working with the others and now we are because of the pandemic and that's how we ended up with legislation these people did legislation they've always done legislation we never did so I said sheepishly do you think that I said yeah and they pointed the way that's how it happened and may I say one more thing because Arlene touched on the education piece Arlene we put in a hearing loop in a beautiful concert hall said everybody come and you know turn on your telecoil come and listen and everybody said what including everybody with hearing aids that didn't happen when we put an elevator in nobody asked me what it was for what you know how to use it so then we you know we turned before that we were smart enough to know that we needed to work with the hearing specialists in town but you know they they still sometimes will say well nothing's looped so it's it's such a battle and it really takes everybody with hearing loss to say yes I want my Bluetooth and I want my telecoil exactly but one of the pieces in the get in the hearing loop toolkit that was created to address the issue that Geneva just mentioned is this oh and I have something else up on my desktop here I was going to show you so it's this here here card so the and this is an older version we have updated the language so that it includes the an option for people to know that they could request a receiver and a headset so this explains what a hearing loop is and this shows you how to use it and there's another document that goes with this that's take to your audio take to your audiologist a card so lots of the audiologists don't know how to program telecoils so this is for your audiologist and hearing aid provider telling them how to program the telecoil and then leaving the space on here to write directions for the patient I also just wanted to remind everybody here about the work that we've actually done in everybody I kept telling everybody ask ask ask for communication access and everybody kept saying well I don't know what to ask for I don't know what to do and as a result of that from listening to all of our members and all of the people who we encountered for at outreach events and we generally in the past held at least you know participated in five a year have we have a brochure for ask for communication access and then people kept saying well kept saying in California all of the cities have parks and recreation departments that run all of the educational components from the city and every and so they're a title to under the ADA and they weren't providing access for us and so that came a well who do we ask could we ask and so the person who you needed to ask was the ADA mandated coordinator for the city and then when we started looking around we realized lots of cities didn't have them and how could we make it easy for everybody to find out who that is and as a result of that and thank you very much to my colleague friend I don't know how to say how wonderful he is Alan Katsura we for now a couple months now have and it was a long term effort we have hearing access on our website you click on ADA coordinators sometimes when you share our windows zoom doesn't work very well and what started out to be the ADA coordinators for our county I thought well after we got it set up and everything let's see if we can do all of California and theoretically this could be for everywhere in the country and then you have to do the work so it's a living document if you and obviously maintaining this kind of information is daunting so that's why we rely on all of you if you live in one of these cities and you see here here's the plus you crack up plus on the plus and you have a drop down window with all of the information you need the phone numbers even hot if you see information here that's no longer accurate you need to let us know so we can update it I'm really super super proud of this it was over five years of work we also have there's a project that you all don't know about we've been working with Google and sometime soon I hope very soon hearing loops are going to be on Google maps and that's just because of us oh I heard about it yes so what we have for our location and to make it easy and it's also different than the map I mean you have the map but that's with you but let's say you're at home and you want to think about something the at the the Google maps isn't going to give you a full list so Alan and I thought that lists are easier and you've been searched by city these are the known hearing loops that we have in California that have been vetted there are some loops that are not on this list because we haven't been able to confirm that they exist so both of these things are available to everybody we want to make sure that everybody spreads the word and please go in and check to make sure that the information we have is correct because basically on this it's been Alan and me right so we can use everybody's help we have does anybody have any more questions comments ideas desires for programs so we're really going to ask for your help next year we need a program committee we need a handful of people to really sit down and plan out what kinds of things that we want people to know about and Susan Beck I just saw you raised your hand can you please unmute yourself I just have a comment the one big takeaway I got from Arlene's talk was about asking what it's so frustrating when I say what and people go through the whole spiel and I only missed one word and it's my fault because I didn't say specifically what I wanted to know and of course them and they're repeating it you miss half of what they repeat anyway so thank you that's I will try to remember to be specific when I say what and that was really good information for me wild unmute yourself I just want to make a humorous comment to Arlene I'm originally from New York and I haven't lived there for umpteen centuries but anyway I was taking a walk and I met two men and we stopped to talk and within my speaking two or three sentences he said you must be from New York and I haven't I haven't been there in over 60 years so you don't lose your accent the crazy thing is my children grew up in New Jersey and they don't sound like me oh interesting yeah it's very funny we have a few more announcements and things first of all historically when we meet in person and I actually don't know when this is going to happen um I think it's really ludicrous for us to think about meeting in person with face masks because none of us can understand each other even easily with clear ones so I don't know when that's going to happen so here's here's our Bob makes handmade muffins for all of our meetings and this is an extension a continuation of what we have in person so we can sort of have the feeling of love that he extends to all of us we have some announcements first of all UCSF the Department of Otolaryngology is looking for people to participate in a mapping music perception study for anybody who's interested in a med-el cochlear implant and I'm in the process of putting together a newsletter for us for December but hopefully we'll have all of these pieces in it it's just not completed to send to all of you Stanford is also looking for recruiting for patients for research study for cochlear implants um they are going to pay a $50 gift card to everybody in appreciation of their time and they're looking for screeners and they have a uh excuse me they have a screener that you take online when you click this and they're evaluating who to participate in their study this is something so important for all of us I just want to stand from the stand up and yell from the rooftops we've come halfway and now the biggest part is in front of us so the House of Representatives passed including hearing aid coverage for uh Medicare so now it's in the Senate and of course it's a Republican controlled Senate I'm keeping my fingers crossed that could there could be enough of them with hearing loss that it may compel them to cross over and vote with people vote for this hearing aid coverage we've all wanted this and complained and bitched and moaned about not having this and if you I want to say this again if you do not take the time to go to the HLA website put in the search engine Medicare and then what comes up is easy directions and now you only have to contact the Senate you have nobody but yourself to blame it's not just me it's not Arlene it's not just people who generally through life take action this is your chance to stand up for yourself and for everybody else with hearing loss so give yourself a Christmas present and do this we also like to remind everybody that hearing loss is a disability covered under the ADA you need to ask for communication access it's 31 years old this year and we haven't gotten a lot of traction I know some of the work that I have done has been very valuable I know that because of me all of the libraries in Contra Costa County have a hearing loop can you come to New Jersey too please oh I'll tell you how I did that Arlene um I can't I contacted them to see so I love to read so when I started thinking about where am I having problems with I couldn't understand at the library when I would go to check out a book so I thought oh I'm going to start with something that has meaning and value for me and it turned out they were just in the process of creating a disability access committee for the library and the timing for that was thank goodness I asked because they were getting ready to buy pocket talkers and that would not have worked so now when you go to our libraries sometimes the people don't necessarily who are there know how to use them it's this ongoing piece of all the time because what happens is the person who was there before somebody was trained and then they left they moved on they did something else and the person behind them doesn't get the information so if nothing else that's something you can do and I've started using a different language around my hearing loss and those of you who've been um attending all of our monthly meetings have been aware of this change and what it is is I say that people with hearing loss live uncertain lives because we never know when we're going to be able to hear and when we aren't and if we want to be able to function the best we possibly can we have to ask for those accommodations before we do activities to ensure that we can understand people so right now generally as you all know I'm doing outstandingly well but I still live an uncertain life life I'm participating in these meetings with senior executives at UCSF I had a meeting last week of 80 people from the hospital system and I could understand half of the people and I could understand them with no problems but the other half of the people if I hadn't asked for captions to ensure that we had captions for the meeting I couldn't have understood them so I know that sometimes for some of us when we're doing pretty well we feel guilty about asking for the accommodations that we really need because you know maybe we're down playing it maybe we we feel like we're putting somebody out but each one of us has a unique and important gift to give and if you can't understand what people are saying you can't participate well and if you can't participate well you can't bring your gift of your being into the world so where can you ask for accommodations everywhere on the on the chart in front of us a slide in front of us and a project that they've done in Colorado has been getting captions for movie theaters and if a bunch of people wanted to get together for 2022 we could do that but I can't do it alone so I want to spread the seed plant the seed I want everybody to think about what else they can do to help all help themselves and all of us in 2022 so you know where we are you know we're here to help you we also have an assistive listening device demonstration library and we are open to demonstrating how devices work to any of our members or anybody in the community we even loan them out the state also has a loan program loan program it's a little bit cumbersome to use because you have to know beforehand what you might want to borrow from them and then they loan it to you I think for a month at a time or whatever so I'd like to wish everybody a really warm happy holiday to spend whether it's with family or whether it's not with family whether you're choosing to mask or unmask and is there anything that anybody else has to say any wishes that you'd like to express to any of the people on on our meeting today just unmute yourself and say merry happy holidays or happy new year to you because we're not going to see each other till February thanks for letting me jump in happy holidays everybody thank you for inviting me I love I love spending time with HLA chapters you're a great bunch thanks so much