I'm watching this video as it is shaking in front of me, but I often wonder if what I see is shaking... I have SCA Spinal Cerebellar Ataxia along with Oscilloscopsia, Nystagmus, farsightedness, and Amblyopia. Hand-held filming gives me headaches (I close my eyes or turn away). I ask people to tell me answers verbally since I can't see nods or shakes. Stylus pecking on my tablet is still a challenge. I'm finding voice-to-text a new frontier. Having all of these I have found myself able to pursue what I have been so comfortable with; my life-long a niche. Now when "What's your kind of work do you do?" I say "I'm a writer." They then say, "That's not work". I tell them, "You try it." "How much do you make?", they question me. "I'm a published,(uncompensated) writer." They ask, "Why do it?" I answer, "I have to. I am full of colorful ideas and need to share." That is clear to me.
Boy, do I resonate with almost all I’ve heard. I can drive, but I restrict myself to main roads, no highways or freeways. I am a teacher. I always tell my students about my eyes so they don’t think something is wrong with me if I bump into things. :)
I hope some parents don't misunderstand your condition and object & complain to the school board. Sometimes, attitudinal barriers are tougher, but you'll pay for it with unemployment.
I too have nystagmus, and I had to deal with many challenges in my academic life, and I am very sorry that you had to pay for something so horrible, especially bullying caused by something that you otherwise had no control over.
I could relate so much to the kid especially when he mentioned about no one wants to be friends with the kid who wants to sit at the front of a class. I always thought I was the only one with this condition and it had affected my self esteem in many ways. I was always seen as a weird kid at school and it was extremely difficult to make friends. Thankfully I was able to get my driving license but I really hope there is more awareness of this condition and studies on it's cure.
Don't worry you are not alone i have like nystagmus and night blindness since birth that affects a lot in daily life but I've accepted it like whatever is my or our fate what can you even do just try to accept it and move on with it i know it is very hard to even see the board properly
I have this condition due to ONH. It’s very difficult as a young adult trying to make a footing. This documentary really means a lot For me nystagmus feels like seeing the whole picture but none of the details.
Hi Matt, thanks for doing this vid, i wish i could have heard ur words and those of ur friends who speak when i was 16! Well done Mr.... from Al (16 in 1980). By the way I got my driving licence at 21 so it's is possible depending on ur situation everyone is slightly different. I've been a teacher for 30 years now and had many questions from students, so many that i really dont mind any more... I'm sure you get it..
Years & years of slow education to obtain an MA and employers still ask and coworkers still express their feelings and you end up living in poverty most of your life. At 20 a man with a law degree and 2nd degree, said employers didn't trust him enough to hire him, so he was living on a disability pension, which I can now say, it is a big $1300 a month. Disability does equal poverty!!
Glad to see that Nystagmus is now being recognized worldwide. Hopefully it will be curable one day
👏🏼👏🏼👏🏼
I'm watching this video as it is shaking in front of me, but I often wonder if what I see is shaking... I have SCA Spinal Cerebellar Ataxia along with Oscilloscopsia, Nystagmus, farsightedness, and Amblyopia. Hand-held filming gives me headaches (I close my eyes or turn away). I ask people to tell me answers verbally since I can't see nods or shakes. Stylus pecking on my tablet is still a challenge. I'm finding voice-to-text a new frontier. Having all of these I have found myself able to pursue what I have been so comfortable with; my life-long a niche. Now when "What's your kind of work do you do?" I say "I'm a writer." They then say, "That's not work". I tell them, "You try it." "How much do you make?", they question me. "I'm a published,(uncompensated) writer." They ask, "Why do it?" I answer, "I have to. I am full of colorful ideas and need to share." That is clear to me.
Had this condition since Birth (1954).This was in the days when wearing glasses was so uncool. I am happy that it is now being talked about.
Boy, do I resonate with almost all I’ve heard. I can drive, but I restrict myself to main roads, no highways or freeways. I am a teacher. I always tell my students about my eyes so they don’t think something is wrong with me if I bump into things. :)
I hope some parents don't misunderstand your condition and object & complain to the school board. Sometimes, attitudinal barriers are tougher, but you'll pay for it with unemployment.
I was born with nystagmus and my biggest struggle with it is the bullying and harassment that I go through for something that I have no control over.
I too have nystagmus, and I had to deal with many challenges in my academic life, and I am very sorry that you had to pay for something so horrible, especially bullying caused by something that you otherwise had no control over.
I was born with the same eye condition,I drive with no problem I'm just one of the lucky ones
I could relate so much to the kid especially when he mentioned about no one wants to be friends with the kid who wants to sit at the front of a class. I always thought I was the only one with this condition and it had affected my self esteem in many ways. I was always seen as a weird kid at school and it was extremely difficult to make friends. Thankfully I was able to get my driving license but I really hope there is more awareness of this condition and studies on it's cure.
Me too
Thank you guys for making this video. It feels good that I am not alone
Not alone bhai
Don't worry you are not alone i have like nystagmus and night blindness since birth
that affects a lot in daily life but I've accepted it like whatever is my or our fate what can you even do just try to accept it and move on with it i know it is very hard to even see the board properly
@@SpadeShinsekai so there is no cure of this
@@ayushgupta8610 I guess there is no rigged cure of it atleast yet now maybe there will be in near future
I have this condition due to ONH. It’s very difficult as a young adult trying to make a footing. This documentary really means a lot
For me nystagmus feels like seeing the whole picture but none of the details.
Hi Matt, thanks for doing this vid, i wish i could have heard ur words and those of ur friends who speak when i was 16! Well done Mr.... from Al (16 in 1980). By the way I got my driving licence at 21 so it's is possible depending on ur situation everyone is slightly different. I've been a teacher for 30 years now and had many questions from students, so many that i really dont mind any more... I'm sure you get it..
I thought that I am the only one who had this. I didn't know that it's a disease.
Years & years of slow education to obtain an MA and employers still ask and coworkers still express their feelings and you end up living in poverty most of your life. At 20 a man with a law degree and 2nd degree, said employers didn't trust him enough to hire him, so he was living on a disability pension, which I can now say, it is a big $1300 a month. Disability does equal poverty!!
There is a new therapy called syntonic vision light therapy. If anyone knows more, would appreciate if you could share their experience