>> Welcome, everyone, to the August Meetup of Accessibility New York. Thank you for coming. This is our August Meetup. We meet once a month, usually the first Tuesday of the month. This month we did the second Tuesday. But we will always be planning to have our Meetups... Typically the first Tuesday of the month. So I appreciate you all coming. I'm Thomas Logan, one of the organizers of the Meetup. Cameron here, organizer, and Shawn Lauriat, who is not here, but our other co-organizers. We're very happy to have Avi Golden here today. I met Avi at the Disability Pride Parade last month. New York City does a Disability Pride Parade. It was the third annual. This year. It was very cool. It marches from Union Square to Madison Park. It's a very good event. And I was very interested to meet Avi. I worked in the field for 15 years. I know very little about aphasia and how it affects people and some of the thoughts and considerations that we should take. So I think this is gonna be a great talk. And a new topic for us here at Accessibility New York. So please welcome Avi Golden! (applause) AVI: Thank you very much! So two things. Number one... Not now, but it's okay to take a picture? >> Yes. AVI: Good. So my name is Avi. It's right there. Ten years ago, I had a stroke. Before I was a paramedic. And later a critical care paramedic and later a flight paramedic. About eight years ago. And before that, I was an EMT. About 20 years ago. Before I was a part-time medicine at Columbia Presbyterian, and part-time at [Edit while sound is adjusted] >> Good? Phew. Thank God. Okay. So yeah. So a long time ago, I was going to Israel to study at university, but in the evening, going to (inaudible) there. And I was going to go to medical school. [Edit] AVI: Hi. Good. All right. Twice! Right. So... Before I was... My father has AV valve. It's a prolapse. So I said... You know, and I have a prolapse as well. It's hereditary. So I said... You know what? Before medical school, I am going to go to surgery. And in the surgery, I had... And that's it. And in the surgery, I have a stroke resulting in aphasia. So one year, all I could say is Michael. I had no idea what Michael is. But it's Michael all the time. For one year. Michael, Michael, Michael. And everybody laughing hysterically, because who knows what is that? And that's fine, because I was laughing as well. Michael. All I say is Michael, all day long. That's great. Also hemiparesis. So basically three weeks... Three months... I was in the bed. And one or two people helped me in the wheelchair. And then later, four or five months is in the cane. And then later is no cane. But basically everybody is different with aphasia. So, like, a lot of people have a wheelchair. And a lot of people... Arms and legs is nothing. So everybody is different. By the way, please ask me questions. Or comments or whatever. So yeah. So I was... I was going to... I was in the hospital for two months at Columbia Presbyterian, and two weeks after the stroke is OT and PT and speech pathology. And later is North Shore LIJ. I have Broca's aphasia, but also just saying Wernicke is different, and global... Basically they don't have nothing. It's one or two words. And that's it for the rest of your lives. So it's interesting. So... For me, for example, I have difficulty with names or numbers or reading or writing, listening. For example, speech pathologists... Okay. I want to say dog and you repeat dog. I say okay. So speech pathologist says dog and I say cat. No, no, I meant dog. All right. That's fine. But next day later, speech pathologist says dog and I say cat. I don't realize the difference. And the speech pathologist says... You know, you meant cat. And you meant dog. And I say... What? No. Stop it. You know. Who cares? And then next day later, speech pathologist says dog and I say dog. So basically every day for me is different. I'm still studying every day. And now I was going to Mona Greenfield, speech pathology, to learn again today. So it's every day. But it's good. But help me... So hearing the first sounds, cues. Nuance Dragon. By the way, do you know Nuance Dragon as well? CAMERON: You can describe it. I don't know that everyone here... AVI: So I will show you, and then you can... Okay. All right. So this is Nuance Dragon. It's email. And Nuance Dragon is right there. So I... I will... Hi. My name is Avi. I will talk and then Nuance Dragon listens and writes. All right. So it's the same idea. But close. It's close. But I will email and I will email and then write it out and email back and write it out. So it's tough. It is tough. But thank God it's there. So it's good. So Lauren is a speech pathologist. It's okay to read right there. CAMERON: Would you like me to read it? AVI: Yeah. >> Lauren Notario, speech pathologist, said: When a person with aphasia is robbed of their speech, one of the first things I teach them is a different way to tell their family I love you. I ask them to squeeze my hand three times. I tell them when you can't use your words, this is the way you can let them know you love them. AVI: Thank you. So for me, it's powerful. Yeah. So three months I was in the hospital. Four months in the hospital. And then I go home. So I go to the website. To see... Thank you. A lot of stuff. So National Aphasia Center is in New York City. Sorry. Right. And then Adler Aphasia Center is in New Jersey. So it's very close by. So I go as well, twice a week. Mona Greenfield is Union Square, so I go twice a week. Six or seven hours, twice a week. So it's great. ARC has... Aphasia Recovery Connection. So David Dowd is right here. Ten years ago. Ten years old... He has a stroke. And then Christine... No. Hold on. Caroline. Caroline is his mother. She then... They studied with a speech pathology for basically ten years now. And then now they speak around the world, talking about aphasia. And then Christine Hugginson, she was a lawyer and studying, and then she has a stroke. So ten years ago... Five years ago, ten... Or six years ago... Facebook, Aphasia Recovery Network. It's 5,000 people. Half of them is speech pathology and half of them is people with aphasia, doctors, nurses, whatever. And it's very, very cool and stuff like that. So it's very cool. Harvey Alter, he has a stroke as well. So he goes to the hospital and he says... You know, the language is gone, but the music is there. So I want to sing a song. And the doctors said... Okay. We'll see. And now he goes five days a week and a lot of people who has stroke, who has aphasia, come and sing with Harvey. So it's really very cool. And then one and a half years ago, one and a half years after the stroke, I went to University of Michigan. Six weeks, intensive program. And it's very, very cool and fun. So yeah. Okay. So that's me. Poststroke. High five. But also very interesting. Here is smiling happy. And then two weeks after the stroke, now I did not know that. So it's good. And everybody is saying... There's nothing. Forget about it. Because the face is... Well... Whatever. Yeah. The blah-blah. The blah-blah. But now the thing is smiling and happy. I like sushi a lot. So Susie got me a sushi. And I gobbled it up. And also I was writing and stuff like that. And it's just garbage, garbage, garbage after the stroke. So yeah. And then North Shore LIJ. So 10-13, in New York City, is help, help, help. And EMS police firemen rushes for the bad men or whatever. So a lot of people come, workers, friend, family, okay. Oh, okay. So again, workers, a lot of workers. Paramedics. Police, firemen, and friends. And stuff like that. So four months I was in the hospital and then I go home. So I say... You know what? I want to go to read what is aphasia. Because I have no idea what aphasia means. I mean, I know that it's aphasia, but it's like... I don't know. Yeah. So... Here's the paramedic textbook. Four lines. Four words. Difficulty naming objects correctly. So I say... You know, that's crazy. You know? It's like 1,000 pages. (laughter) So thank God, emailed, called, whatever, and thank God, I come to EMS or police with speech pathology, and speak about aphasia. So it's really cool. So I like to go with... I like to go to Bronx zoo a lot. A lot, a lot. I mean, you like the Bronx Zoo as well? Okay, good. So me and a lot of friends went to Bronx Zoo, and I was in there and I see Columbia Presbyterian. I say stop! Ambulance! Stop! So somebody else stopped. And Danny and Mike, who was working with me, together, before the stroke, they said... Hi! How are you? Nice to see you! I say Michael, Michael, Michael. What's going on? Hello! So it's really cool. So yeah. So National Aphasia Center is... So Ellayne Ganzfried is the president, also speech pathology. And Stephen Symbolik is here. They speak to police and hospital and firemen about aphasia, and one or two people who has aphasia speak about their story. For example, North Shore LIJ and Columbia Presbyterian speak about aphasia with the speech pathology, and me or one or two people who has aphasia speak about aphasia. But also four years, two years, I was not driving. But then later I was driving. So a lot of driving or flying or email... Yeah. So Ann Arbor, Michigan. University of Michigan, firemen. Suffolk County, or FDYN, or Stewart Airport. I was in (inaudible) twice and spoke with (inaudible). So it was really cool. Or not. Okay. Also, I was in... I spoke with doctors and nurses as well. So North Shore LIJ, Columbia Presbyterian, also I was... Johns Hopkins in Baltimore. And... In Jerusalem, with the hospital. Also, I was going to go to medical school. I mean, I was like right there. And then I had the stroke. Half a year before, half a year, I spoke with a medical school, a resident, about my story. Also, Gail is a speech pathology, spoke about aphasia, and Dr. Peter blah-blah-blah... It's weird... Is pediatric MD, and then he has a stroke as well. So he spoke about his story as well. So it was very cool. And then again, OT, PT, and speech pathology students listen and then speak about -- ask questions. And four or five people, for example, Yvonne, or... Albert. Not Albert. Ken. That's Ken. Ed. You know... Talking about their story. Face-to-face with aphasia, again. Four people is a speech pathology. And four people... Sorry. Three people is a speech pathology. Talking about aphasia. And four people who have aphasia spoke about aphasia. Also like... One year ago, I go to the aphasia in Philadelphia. And I spoke with 4,000 people. It's really cool. And then also Linographica is right here. It's text... Or... Aphasia access... Or... You know, stuff like that. So it's very, very, very cool. Any questions so far? Okay. So I was in the hospital... I was in the... Twice I was in the Israel. I was in Israel. And Tova and Boaz, wedding, but they also has... Is EMT. Twice. Boaz and Tova is EMT. Right? And also Tova, he... She wrote paramedic textbook. And inside is my story. And I did not know that. So... Yeah. So you know... Because I have no idea. Okay, good. So it's awesome. And then I was talking, and I was going to Manhattan. To speak with Candy. Candy, his mother... Has... She has a stroke. Unfortunately passed away. But Candy wrote and videoed with my story. So it's very, very cool. Again, same thing. Author with Ellayne Ganzfried and Mona Greenfield with the words. Look it up. Or no. Whatever you want. But it's... Yeah. And then this is interesting. Tikkun Olam make... Blah-blah. It's really cool. Is now in New York City every year. So it's great. It's just a lot of people have different ideas, and OT, PT, speech pathology, computers, and stuff like that, to try to build things. And it's very, very cool. So look it up. It's very, very cool. Also I was... I am going to hospital to visit patients who have stroke or aphasia. So Joe is aphasia. So Joe and I spoke about various other things. And Carl McIntyre, he was an actor and then he has a stroke. So he wrote about aphasia, the movie. And it was really cool. So I go three or four times a year. Three or four times. And half hysterically and cry one or two tears. But it's really cool. So, you know, go ahead and look it up. It's Amazon or CarlMcIntyre.com. Chepell Chase is a director and he has a show as well. He a long time ago is talking with Hillary Clinton also. It's very cool. And then things I like to do. So riding horses. Moon riding. Or in the summer. Whatever. Zip lining. I like zip lining a lot. It's really cool. And I have five videos. So I can show you. It's awesome. Paintball. I like paintball a lot. I like to go a lot of times... A lot of people. Except for bungee jumping. I don't know why. Sky diving, no problem. Jumping -- I hate jumping. Right. Whatever you said. Yeah. I don't know why also... In Manhattan, is shooting, and so it's really cool. Helen Hayes Hospital in Berkeley has tons and tons of disability sport, and it's free, so you can go to call or email, and it's really very good. Also, I have disability sport. So you can email or call me. Or Facebook or LinkedIn. Whatever. And I can email with you with disability sport. So yeah. Really cool. Sailing. I love sailing a lot. Again, it's free. So a lot of people come and have a good time as well. Oh, right. Six people who is a passenger, two of them have wheelchair. They doesn't care. I don't care. Whatever. Let's go have a good time. And it's free. So yeah. Scuba in the pool. Disability. And then later a lot of people and me went to Bonaire and swim, and it's really very cool. So this is really cool. Rock climbing. I like dogs a lot. In the future, I am getting a dog. Disability dog. So yeah. Disability boxing. Hand cycling. Surfing. The guy right here... He was a pro surfing. And then he went to swimming in the water. And the wave crushes him. And he has... I forget her name. He has a wheelchair. He is a wheelchair. But he is surfing. With one or two people help me. And now he is a president and he goes... Let's go have a good time in United States. He goes a lot of places. And a lot of people who has disability come and have a good time, and it's free. Again, I have disability sports, so I can email. So yeah. Sailing in Nyack. A lot of people have a good time with sailing. And then later is scuba diving. Lunch. So that's really cool. Sky diving. Indoor sky diving. I can show you right here. Okay. Let's see. [Edit] AVI: Thank you. And then indoor sky diving. Kyle, who has aphasia as well, he go to indoor skydiving with a lot of people and have a good time. So again I have a video as well. I'm sorry. Yeah. So it's very cool. In Yonkers. No big deal. It's half an hour away with car. It's very cool. Thank you. Rowing. New York. Extreme sport. Again, No Barriers Summit. We'll talk about later. So I can show you the video. >> Here you go. Ready? Pull. Right in the sun. Not too good. There we go. >> Come on, wind! >> Very smooth. Good job. Good. Nice tip landing. Excellent. >> This is one month ago. Is No Barriers Summit in Colorado. Utah. Arizona. Not really. Not at all. But very, very cool. In the Colorado, in the summer, I don't know why... But a lot of No Barrier Summit, it's a lot of snow. You understand? Okay, good. Excellent. I'm sorry. >> The archery ones? >> Yeah. >> Golf and archery. >> We were just talking about that. >> Nice! >> Good shot! >> Woo! >> Yeah! Hell yeah! Oh yeah! >> Yes! >> All right, man! >> I came, I saw, I conquered. >> Right there! >> Great job. >> And then golf... >> All right. The person who sinks first gets a backpack. >> Close. >> Back to the slides? >> Yeah. Thank you. Thank you. Snowboarding and skiing. I like skiing a lot. Snowboarding. So a lot of stuff. Or tennis. Snowboarding. Water ski. Yes. Tomorrow, I am going to water ski. Leap of faith. So you can come. Really cool. Or next week. Whatever. Or don't. Whatever. Hot air balloon. I don't know why. But in Vermont, it's snow in zoo. So it's cool. I like it. I don't like it. I don't... I have no idea... You maybe yes. Maybe no. But I don't like it. I am like it. All right. Never mind. Swimming. Golf. So very interesting... This guy... Three of them have no... Come on. Blind. They have blind. See the dogs? Whoops, sorry. The dogs, right there? And then they... Is golf. Like golf. I had no idea who or why, but yeah. Archery. Again. For me is one-handed. So you can see is... You can sit and stand and then just one-handed. It's very, very cool. Falconry. It was really cool. And things to do, like, for example, dancing, or... I forget the name. I forget. Really fast and furious. Really cool. >> Rugby? >> Close. Is not rugby, but close. Yeah. Things to do. And then also a lot of people went and a lot of people have a good time. For example... Train show or hospital polar bear club. I've been there twice, about three times, in the snow. Natural history, or No Barriers Summit. Again, No Barriers Summit is disability sport. So days in the summer, in the breakfast, is... Have a good time with scuba, whatever, and then in the evening, speak with a lot of people about their story. So it was very, very, very cool. So I go three, four times. And next year is in New York City. So very cool. Walk on the Hudson. Also Ability Expo. Which is right here. But Ability Expo. Look it up. Every year it's in New Jersey. So look it up. I mean, it's a lot of people come... It's disability. And have a good time. And it's really cool. Yeah. Art. Or Intrepid. Again, No Barriers Summit. And then later... Stuff like that. So, for example... This is No Barriers Summit is... I forget her name. His name. He is blind. But he goes to Everest and climbs. No blind. Is blind. With like 5 or 6 different people and have a good time. Or he goes to kayak. Rapid kayaks. And diving. Like crazy. No arms. No legs. Belly button. And he and him together go to Everest, like crazy. This guy, you know his name. Bob Woodworth. He has TBI. You know, stuff like that. It's really very, very cool. Again, in New York City, next year, is in... Yeah. So look it up. It's awesome. Or I can... Disability sport. I can... Yeah. All right, good. And also, aphasia recovery. Adler Aphasia Center has a play every year. Last week is in... I forget now. Oh. Anyway, yeah. So it's really cool. I was a paramedic and then I lost paramedic because I had a stroke, but I really, really want to go to maybe try. And I succeeded. So five years ago, I had a stroke, and now I was... I am still today... EMT. So it's very cool. So please email me or call me or Facebook me or LinkedIn me or don't call me. Again, whatever you want. And any questions? Yes? >> Question. So for your... You said that the first year, your speech was mostly saying "Michael". What was sort of the breakthrough, or was it... A lot of training? Or what was your breakthrough moment? AVI: Well, everybody is different with aphasia. So for me, basically around about one year, all I could say is "Michael". Or one or two words. And then slowly getting better every year. But it's very different. It's very still... I still go to speech pathology four days a week. Every year. And still like... Today, I was in the Mona Greenfield. So thank God it's slowly getting better. But everybody is different. Yeah. >> Did you have full memories? Did you have... Basically during that year, do you have a memory of the whole... AVI: No, because after the stroke, I was in the surgery, so I don't know whether... One and a half weeks... I was in the... Unconscious. So I don't know... Whatever. In fact, maybe... Yeah. But then later I was in... I was in... I was... I was waking up. And the doctor says: Okay. I'm gonna... I have... You have a tube. I can pull it out. So I said... I say... In my head, thank you, doctor. I was... Thank you, doctor, to pull me out. And the doctor pulled me out. And I said... Michael, Michael, Michael. I said... What's going on? So I cough and sneeze and whatever. And I do it again. And it's... In my head, thank you, doctor. And I say Michael, Michael, Michael. So the doctor says... The surgery is excellent. Unfortunately, unfortunately, you have a stroke as well. I mean... Stroke. So yeah. Understand? >> Yes. AVI: Okay. Yes? >> This question is from Sveta. Do people have aphasia... Sorry. Do people who have aphasia have more problems with language processing than with vocal cords? Even people with well functioning vocal cords may have apraxia, because it all depends on brain... Not vocal cords. And I think this is related... I also heard of apraxia... Is it related to aphasia? Is apraxia more muscular issue with the voice? Just another question. A follow-up. AVI: Okay. Again, everybody who has aphasia also has a lot of stuff in their head. So yes. Aphasia is the big one, but a lot of small is... Like, apraxia and dyspnea and speaking and not speaking and everything else. Sorry. Do you understand? Or you don't... Not really? Sorry. My fault or no? Like, my fault... Is my fault, or is... You still... >> Repeat. >> I'll repeat the second question. So I think is apraxia... Have you heard of apraxia? AVI: Yes, I have apraxia. >> Is it related to aphasia? And you have apraxia as well? And is apraxia more of a muscular issue, or is it a cognitive issue? AVI: Every word is a different words. So it's hard to... For me, it's very... A lot of stuff. Meaning I don't know whether practice... I think it's... It is syllable. The words and the brain is... I don't know. You know what? I'm gonna email with you. And I can email with a lot of list without website. How about that? Okay. >> And then the other question is... If you couldn't use voice, you could write? Or could you write? AVI: No. Again, everybody is different. But no, for me, no. But for three years, I was not able to write. Except yes or no. Or whatever. And then I was in... Studying... Nuance Dragon is speaking. And Word... Nuance Dragon and I was studying. And now I'm emailing Nuance Dragon. So I speak. And the Nuance Dragon listens and writes. Also, I have the website for Nuance Dragon, so you can see. Okay. Yes? >> Were you into all this borderline suicidal sports stuff before your injury? AVI: No, because I was working. (laughter) AVI: But now, after the stroke, I was not working. So yeah. So yeah. >> Was the word play of, like, cat and dog... Is that also a symptom of aphasia to have related words connected like that? AVI: Yes. In my head, I know is dog dog dog dog. And also is cat, mouse, rock. You know? Or... I was... I am thinking for like five or ten minutes, trying to say the dogs. You know. But everybody... For me, it's... Different. Every day. Or every hour. So yeah. >> You said you use Dragon Naturally Speaking, which is... If I understand... You use it for dictation. For emails? AVI: Correct. >> Do you use any other voice assistants? I know there's Siri on the iPhone. There's Alexa. Amazon's... AVI: Correct. So the only thing is... Nuance Dragon is better than most of the... Less... More than... Less than Amazon or Siri. But also, after the stroke, I had... It's difficult to speak. But a lot of people who have disability is talk a lot. So they don't... They like... It's fine with me. It's there. You understand? Not really. Okay, good. After the stroke, for me, I have Nuance Dragon, because Nuance Dragon is best than a lot of website with word to talk. For me. But you... Is speaking... Is no problem. >> Got it. AVI: You understand? >> I think I understand. May I repeat? AVI: Please do. >> The Dragon Naturally Speaking is better for taking your time or for articulating what you want to say. Tell me if I'm reading into what you're saying. AVI: Don't worry. >> That Alexa, in my experience, that Alexa will turn off if you don't say anything. Within a few seconds. Or it expects a specific way of speaking. AVI: Okay. >> Is your experience that you don't speak in a way that Alexa expects or that Siri expects? AVI: No. This... Your... The website... I don't know. But one or two... A long time ago, I was looking for text-to- speech. And I liked Nuance Dragon. Not a lot of people... A lot of... A lot of people... A lot of websites are not so nice, except for Nuance Dragon. >> Cool. >> I'm just gonna ask a simple question. Are you using Nuance Dragon now? AVI: Yes. Yeah. And again, Nuance Dragon, laptop or desktop, is free. And... Sorry. Laptop is... One-zero-zero dollars. But it's best... It's great for me. So yeah. >> Is that $100? AVI: Yes, roughly. In Apple. PC is, like, cheap. Yes? >> From Sveta. If you couldn't talk for a year and could only say one word... AVI: Awesome, yes. >> How were you able to communicate if you couldn't write or use Dragon? AVI: Correct. This is very, very good. Basically my friends, a lot of friends, go and speak with me and is working, working, working, for, like, five or ten minutes, and half the time, a long time ago, half the time is... They doesn't understand. For me. And half the time is... Ice cream. You know, speaking. But it's... Ten minutes waiting. And struggling what is... The speaking. And then is... Example. Ice cream. Sorry. Do you understand? Or not really? Yeah? Ten years ago, all I could say is Michael. So a lot of people, friends, a lot of friends, best friends, with me, working, tried to understand what... Is speaking. So, for example, in the hospital, ten minutes, I'm struggling with... In my head, ice cream. And outside, is rarararara. And they... Was struggling to understand what is the situation. Until is... Oh! I see. Ice cream. Right? It's good? Okay. >> During that time, could you mime things out? AVI: No. Well, one hand is not so much. And the other one is... I mean... It's there. But no. Also, is language is... Gone as well. Because I don't have the information. Same idea with email or book or whatever. Is... Gone. It's all... I am now... Struggling with books or stuff like that. You understand? Yeah. >> Can you use, like, augmented communication like picture or symbol? To communicate? AVI: Yes. A lot of people who has aphasia -- yes, they have dictionary or whatever. But it's hard. But it's there. Yeah. Yes? >> And it's still progressively getting better? AVI: For me, yes. Absolutely. >> For you it is. AVI. Yes. So it's very interesting. In the hospital, everybody in the hospital... With aphasia... Half of them after the hospital lock the door... They are going to the apartment and lock the door and don't come out ever more. And half of them do try and succeed to speak less than before. But it's very interesting. And that is... A lot of people... I said... I want to smash the people, because I just wanted to say... Come. Learn, learn, learn. Because it's free. Or it's Medicaid. And let's go. Have a good time and besides, life gets fun. Sort of. Yeah. Yeah. All right. Well, nope? All right. Thank you very, very much. >> Well, I'm Cameron, by the way. Thank you, Avi. And I really appreciate you sharing your experience with us today. And we will be in touch, so we can share some of the resources you described with the Meetup group. And we'll make sure that the contact information that you want to share is available to all of you. Speaking of all of you, thank you all for coming today. I see some familiar faces and some new faces. So it's great to have everyone here. I wanted to also say thank you to ThoughtBot, who's hosting us tonight. This is their space. And to Joly and the Internet Society of New York. Joly does the live streaming for us. And recording. And Mirabai Knight and White Coat Captioning. Mirabai Knight is our wonderful captioner behind these captions here. She's joining us remotely. Am I missing anything, Thomas? Level Access has been an ongoing sponsor of ours. And we're very grateful for their contribution too. So if you'd like to stick around, please do. It's 8:07 now. AVI: Is it okay to take a picture? >> Yeah, definitely. (applause)