Stargardt Disease - How I See
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- เผยแพร่เมื่อ 15 ก.ย. 2014
- Stargardt Disease - How I See
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It's where we discuss the good, the bad, and the often annoying aspects of living with low vision. Here you can find videos about assistive technology, helpful tips and tricks and the dos and don'ts of low vision etiquette. All shared with a positive attitude and lots of laughs.So consider hitting that SUBSCRIBE button and joining the team!
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My mom has stargarts, so I understand what people with this go through.
Lets all hope that someday soon there will be a cure.
Happy I found your channel! My boyfriend has Stargardt & he is the best driver I know! It’s amazing . But the pictures you showed are exactly how he sees!
Hello ! I just wanted to have updates please? Can your boyfriend still drive ? How's the evolution of disease? Thank you .
@@sajparis464 he drivers really good still, i can ask him if his vision has gotten worse. but he drivers better than most people i know
I can answer the juggling question!! My mom was a majorette in HS, and she taught me baton twirling. When you release the baton from your hand, you know the trajectory you sent it on, so you can catch it without looking at it. It is very very cool to do! I am so glad my mom taught me that-learned alot about the way the brain works from it!
I've always explained the part that I cant't see as 'What it looks like when you get really light headed.' Its still kind of there, but its just kind of 'noise' there
I have been legally blind since I was 12 or 13 or at least that's when I was diagnosed from the same eye diseases you have///// I am now 71 your explanation is the best I've seen so far///thank you//PS I've also gotten that how many fingers do I have up crap from a certain few over the years//some people will never understand if they're not in the position we are in
This is my favourite video you have done! You have highlighted such a massively unexplainable thing to a normal sighted person, without Stargardts. I can never find a way of describing it, because it's so hard to! Love it! :)
Thanks!
Sam again you are BANG on!!!! you have explained one thing which is really dificult for me to do in past several years.
Excellent!
This is the best way I could explain my condition. Is your's similar?
***** You do a pretty good job explaining it in your video
That is exactly how I see out of my right eye, but cloudy all over. I've been trying to get my husband to understand it.
I get asked all the time too and this video is the perfect way of explaining it! Thank you so much!
Thank you. I write and one of my characters has blindness without total darkness. After some Google research I found Stargardts. From what I saw in your video, I need hers to be a bit worse--- well, more blurry-- but this has been a big help. Thank you for helping me see through Tabby's (my character's) eyes.
That's great! You're very welcome!
Yes brother this is what o am experiencing. This video would help me make others understand about this. Great job.
Great video, and I agree. It's hard trying to explain to people how I see. I try explaining it to people and they just don't get it. And sometimes people think I'm faking my condition, and it used to erk the heck out of me. I realize now, the overwhelming majority of people are ignorant. Even relatives don't comprehend my condition no matter how I explain it.
Lol, agreed
My sister has this disease and you are doing a great service. Thank you.
Thank you for this video! My mum has Stargartz, and I’ve learned over the years to ignore my central vision to try to learn how she sees. It was hard to learn to do, but worth it. Your description of how you see is kind of close to how I learned to see from mums point of view. I think you put words to how so many with Stargartz see, where they couldn’t describe. Once again, thank you for this informative video.
You’re very welcome! Over the years I’ve had so many people ask me how I see that I wanted to, in my own way, give them an example that would hopefully describe it better than I could.
Excellent example of how people like us see. Thanks a lot for this.
Great job explaining! I have Stargardts and my son just asked me how i see and I found your video! Thanks for posting this!!
If you search for Stargardt‘s disease, macular degeneration how I see, you’ll find the newer, updated version of this video.
It is a relief listening to you explain how you see. I tho k so far you have said it best.
I see how you see. Things just disappear.. fine details etc.
I often have to force myself to look directly atsomeones face even though I don't see their face details if they are just one or two feet too far. I see the color and I know what should be there. If i look next to them my peripheral sees it fine
But when I look directly its just gone. I see skin color that's it.. sucks.npt being able to recognize people you've known your whole life, If they just stand that right distance away..
Yes! This video is the exact replica of what I see too. Going for scan next week for diagnosis
Hey Sam
Good work
Pretty close
As you say it disappears like magic
And of course the brain is trying to feel what the eye cannot see
👏👏👏
Thank you so much for this!!!! I totally identify..I found out my diagnosis nearly a year ago (40 years old!) but these last few months I have noticed it get worse..especially in my left eye. For the moment my right eye saves me. I am a professional musician and have not been able to play in the orchestra for a year..
YES! That’s very close to my experience.
this is spot on! explains how i see and what i can see, handy to show people, you explain it much better than i do haha!
Thanks!
great video!.I have Retitintis pigmantosa ( Rp ) and I last a lot of my vision, and this video showed how my blind spots see.
Your explanation is very good and correct.
I also don't see a blind spot but i have a blank circular ring with blurry central vision as my retina is thinning. So i see better in the center of the ring. You can say i have a blind ring instead of a spot
I reeeally like how you show it with the "cam"! Things do disappear like that.
Thank you for sharing. It's like migraine spots or flashbulb spots combined with eye ointment application I'm thinking. I have just been diagnosed with macular degeneration. I am petrified. Your videos are giving me hope
Great explanation . I have stargardts and this will be great for me to share with my sighted friends.
That’s the old video, you should check out the more recent one. It auto plays when you go to my channel.
My father has stargardt's disease. And I never truly understood what it would be like to have that. After watching this video I realized how difficult it must be for someone with stargardt's. Thank you for the info. It helped me to understand my father's situation more.
I’m glad you found the video helpful. I’ve actually made a more recent updated version of that video. If you go to my TH-cam channel, it should be on the main page. I did a much better job in the recent video!
Very helpful, got diagnosed with stargardts 1 year ago at the age of 27. And very curious to see what my vision might look like in the future
I've been legally blind for 32 yrs. I had histoplasmosis as a kid & it left a lot of spots on my retinas. My eyes started to hemorrhage at 21. I have over 100k laser blasts in my eyes & had one retina reattached with cryo because the surgeries tore it loose. Ur "blind cam" is similar to the way I see but my "blind spot" is completely opaque, seems white and moves like oil swirling in water. Also, since the scarring & burns in each eye don't match (and then you add the blind spot where ur optic nerve is) and add that I'm nearsighted and it's a party. Each eye fights to overlay what it sees on top of the other eye so you also have a constant headache as well as no depth perception (upstairs good, downstairs BAD). Good job on the software. I can tell that for the most part no one can tell that for all intents & purposes that you're blind either. I guess that's the up side.
Very interesting Sam, when I saw representations of tunnel vision and lack of central vision before, I didn't realise the brain fills in the gaps. That seems a lot more bearable. Will share this with people if it ever comes in conversation. I'd never heard of Stargardts before either. Thanks for making this video.
Thanks for checking it out! Yeah the brain is a remarkable thing!
You nailed it. That is how I see as well. Thanks!
Appreciate you posting this. Going to share with the fam! My vision is 20/400ish as well. Do you have phantom visions as well?
I have flashes of light, if that’s what you are considering phantom visions. Every now and then I see a light spiral in my central vision. It reminds me of the loading sign on a computer spinning in a circle!
1200 views man that is awesome. keep up the good work. what editing software do u use?
1500 I am sorry lol
+awinn4183 thanks! I edit my videos using Sony Vegas Pro 12, and create my thumbnails with Adobe After Effects
SAM,....this is an awesome video!...A retinal specialist told me that my Stargardt’s was caused by two recessive genes that happened to have married each other. Bummer. Two siblings totally normal I got lucky. But since I have had Stargardt’s since I was very young still in junior high I have adapted over the years I am now 74 and I still Quiltler and Crochet one thing you haven’t mentioned is the way your tactile gets so sensitive and you use it more often then you use your eyes for little things by the way years ago I tried the feeling of the plug holes with one hand while I plugged in the other got just about knocked on my bottom. And sat there and screamed and cried for a minute because I was ha ha shocked. So don’t do that. Love your analysis of how we see it is perfect absolutely perfect thank you so much for a way to describe. I was always frustrated when I saw pictures of the black spots I have no black spots thaank God.......love all your videos....good job!
Interesting Sam. I always wondered how you see but didn't want to ask you directly in case it was rude of me to. Plus, I tend to forget you have low vision in the first place because you're so active and it always seemed to me, move around your home the way a fully sighted person does. Now I have a better sense of how difficult a subject it is; to me as a sighted person I've always assumed people can either see, not see or see 'blurry'. It sounds like your vision doesn't fall into any of those groups; I never thought about your brain filling in the blanks, so to speak; it does sound tricky to deal with (massive understatement, sorry :) Huh. Ok. I hope your channel finds a wide audience, it's a great idea and you are a particularly awesome person to front something like this. Miss you guys!
Hey Natalie, thank you for those kind words, they mean a lot! You should never feel afraid to ask me anything, I'm an open book! The whole reason I started this channel was to help people understand, and it appears it's working! We miss you guys very much as well
Spot on! (no pun intended!) The way I have described it to people is imagine if you had Vaseline in the center of your glasses- not exact but they get it a bit
lol watching oyu explain it is just so uncanny because it's like watching me explain it countless times to others as well. "wellllll it's not EXACTLY a spot...." lol Goo dstuff man. Loving watching all of your videos, I'm working my way through :)
Awesome, thanks!
Ty we c the same way and I have said the same thing about the brain fills in what it thinks it is but still unless u have stargardts you still couldn’t understand !
For me this is quite different... your video give a nice idea, however my spot is not centered (my eyes had move my central vision to the peripheral area of my retina, therefore my spot is not centered and often I don't event see it even if I try to... it depend a lot of the lightning.) However as my "new central vision is on the peripheral part of the retina, a part that is naturally blurry, everything I see is blurry.)
However when I do happen to see my spot then it does almost exactly what is shown on the video... just not on the center.
Nice job
That’s an awesome way to illustrate our vision. Another way is to rub a tiny dab of Vaseline on eye glasses and have someone look through them.
I’ll definitely be following your channel. Do you have any experience with filing for SSDI?
That is a good idea. I always think my glasses have smudges when i try to focus on something but its my eyes lol. Really frustrating.i know its not my glasses but it still gets me.
The 'black spot' thing always disheartens me a little, it just doesn't represent my, or a lot of peoples, experience with macular degeneration. I tend to describe it as either using the smudge tool in Paint/Phot shop or showing people the blind spot test and explaining that it's like that, but for the middle of my vision (everyone has a blind spot in each eye due to the oculalr nerve/vessels, you can find tests online)
are you sure everyone has a blind spot in each eye? I have one in my left eye and I hope its not stargurt desease
So close to my vision. I amaze myself looking at stuff then it magically disappears.
At this point, my vision is still mostly ok. If I get tired or my eyes are really strained it looks as if I'm trying to look through a drop of water on the page or screen. What I always have though is something like a multicolored flashing ring of light in the center of my vision. I found out almost a year ago that there was"something" going on with my retina and got the official diagnosis in May. I have just turned 38 now, so a little later onset than most.
I have the flashing ring of light also, drives me crazy!
I have this disease as well. It sucks!
I know what you mean cuz my left eye is like that from optic nerve damage from a surgery from July 12, 2000
Marina Kiell omg
far out! you DO have Stargardt's! I had a feeling from a previous video...ME TOO! SO HARD to explain to people and I've been doing it for 46 years.
posted on my facebook page. :)
KJBigBelter Awesome. thanks!
I have stargarst too and im only 15. When people asks me how i see i cant explain when i try to explaib they imagine like i cant see anything but its not how i see i can see everthing aroubd vut i cant see just the center of my vision like there is an area filled or deleted by ai but people can't understand this 🙃
I have RP. I use a guide dog. Does anyone else get the spirals of light appearing in their eyes.
My case is like totally vanish in the blindspot with left eye being the most serious.
Jus like when lookin directly at a person infront. I wun be able to spot the person face. Hence dun even realise if its someone i knew unless they wave at or shout to me
It is difficult to explain how I see. I've had people I work with question if it's truly as bad as I've described. It's frustrating trying to explain that I can see, but I can't see. I can still drive and do a lot of my normal daily activities. I've become a vampire, of sorts, though. I prefer not to be out in bright sunlight, as it is very hard on my eyes.
Yes, I know exactly what you mean. I think because I’m so well adjusted to my vision impairment that people think I can see much better than I really can. So they’re always surprised when they see me struggling with something. Have you seen my eye can see but I can’t T-shirt? Check out the Amazon shop if you have it, link in the description of the videos!
I’m supposed to have stargardts but I’m starting to wonder if I have been misdiagnosed I don’t only have a blind spot I also have (depending on the day) minor to severe “flickering” in my vision have u expirenced any of this?
I see flashes of light every now and then, maybe five or six times an hour. Sometimes it’s a circle of light spinning in my central vision. I believe they call it Bonet syndrome. Apparently it’s the brain trying to access the dead cells in the central vision. My doctor says it’s really nothing to worry about
Oh well that sounds like it’s spot on to what I’m experiencing I appreciate the reply!
Amazing! I also sort of hallucinate objects... I would go to grab a dog toy thinking it's my flip flop b/c that's where it should be. The brain can make you feel foolish sometimes!
Stupid brains! :)
Just wait :) that silly brain will start beaming in people from the ether soon enough.
i look around a well lit room.
I see a wall.
(voice Hello bud)
TELEPPORT ANAMATION
I see a person in front a wall and jump 9 feet back and scream)
Your explanation like with the camera is how i see. In my left eye tho everyrhint is wavy from mac degen lol. Also a suspect for oag. Its frustrating trying ti exolain that i can see but i cant see lol
Like looking directly at stuff they vanish. Its so annoying. The giant E for the eye exam vanished whn they last tested my vision. I said the screen was blank and they laughed cus it was a giant E lmao.
to the normal people who see well and have no idea about what he's talking about, try placing a dot and a cross 6 inches apart on a plain paper. now close one eye, move back and forth with your right eye open while you stare at left cross/dot. the cross/dot on the right should disappear. while for normal people they really have try and look for it, for people with this condition it's right there in the middle.
Hi I have star garde to.
wow thats so me
side note way back in the day before the cataract broke any fine detail trying to explain why you think someones nose iis floatiing off there face if ya stare straightt at em :p
Hey , I have this disease
Is this amd
Sharwd this on my face book ! that's what I don't see tooo
Great, thanks!
You kinda got it im the same.
People without Stargardt's all have a small blind spot. It's normal. You're saying it's like that, but bigger? Nothing there! People can just find their blind spot and understand :)
really? normal people have small blind spot ?
U can simply unfocuse the camera. Of your ohien and u see
I always explain it like this…you hear an airplane and you look up not the blue sky….you see the plane off to the left. Then boom it dissapears.
The sky is still blue but no plane.
The the plane gets to the other side of your blind spot and boom there it is.
Your brain fills in the blue sky as if it’s all legit and then there’s the plane on the other side of the blind spot.
It’s scarier than shit the first time you realize it. In the same vain I avoid eye contact with people that I don’t know
Because I don’t want to stare them up and down left and right. It seen creepy
But I often can see people at a glance
I had to go and explain to my neighbours…listen I can see yo from my house. My vision is so bad don’t be offended if I don’t wave back if you wave at me I can’t see shit. With my glasses on. I also now understand my dad looking at me sideways when he was giving me shit. About this or that.
He was using his peripheral vision.
Also when he was unemployed in the 90’s I now understand why he didn’t want to work out of town. He couldn’t see…and couldn’t tell anyone because he was the breadwinner.
It’s a thankless job.
Yeah, I've had that same conversation with neighbors as well! If you haven't seen it already, I've made an updated version of this video. Just search on TH-cam for "Stargardt macular degeneration how I see"
Do you wear glasses or contacts ?
+Annastasia Srock I have a pair of prescription glasses but only wear them when I’m watching movies in a theater. They make the picture a little more clearer but don’t make it any easier to see, if that makes sense!
I see like this... th-cam.com/video/uX1IAF5HE1E/w-d-xo.html It has similar features you’re describing. I have bits of what vision have,I also have ‘blind spots’ too... but they aren’t black... they just aren’t there
Thank you for sharing! I made a video once talking about my blind spots as well, I think it was called how I see. In the video I try to explain to people that our blind spots aren’t big black spots like everybody thinks they are. It’s just an area of color with no detail.
The Blind Life Yes... it’s really hard to explain something that you can’t see. I had a minor stroke in 1998, and suddenly, everything on the left hand side of my vision disappeared.
Hi Sam. I struggle with answering that question too. I recently made my own web page to describe and show it. Maybe it'll help you. www.bccdl.com/stargardts.html
Yeah, I've actually seen it before! I think you did a great job trying to explain it and show it visually using the pictures! I think the last picture, the one of the highway, does the best job depicting the blind spot. Because you're right, it doesn't make a black spot. For me, and I'm assuming it's true for others, my brain takes the background and tries to fill in the blind spot. So if I'm looking at a lamp sitting against a blue wall, the lamp disappears and all I see is blue. I especially love your quote about David Copperfield! That's very true!
The Blind Spot Sent you a PM.
Keith Ruston Where did you send it? I haven't gotten one yet.
The Blind Spot Weird. I cilcked on The Blind Spot. Jumped over to the About tab. Then clicked on Send Message. I don't know if that sends it to your TH-cam inbox or over to Google+ messages. I also don't see any way to see messages I've sent. I guess TH-cam PMs need a little love.
Thats what faces look like to me are a distance...
Bummer that your vision is basically shot to Hell. Awesome dude. Cheers!
Sir plz trrstment?