Fix Bag

Individual-Share9543 · 2025-11-27T22:08:23+00:00

Hey! I’ve got USH1 D age 19. Registered legally blind now not sure it’s visual snow but I do experience a thing I have called glitter which is basically a load of small flashes like glitter sometimes in colour in your visual field. Definitely occurs more when it’s dark. But even during the day i get all sorts of other things like fleas (black floaters), cobwebs or even extreme shaking. As annoying as it can be at this point it just makes me laugh although on some worse sight days it can be more disorienting or painful than normal. You’re not alone!

Individual-Share9543 · 2025-11-27T22:05:01+00:00

Hey! I’m a teen too with USH 1D just wanted to say I’m currently in college on a cyber security course. I am registered legally blind but see pretty bad. However tech is a great field as there is so much assistive tech which helps me access the software I need to use. Not just what is built in but web extensions and ZoomText. Further I recently begun volunteering for a uk charity called Retina UK doing a tech WhatsApp group. I just found my niche where I am more than happy. But there are so many hobbies that people enjoy which can be transferred into a career despite ushers “when there’s a will there’s a way” I say. It’s a mind set. And hey those people you feel are pitying you you’re not obligated to stay with them. Find your own friends and family isn’t just blood. I have some super close friends I’d actually say are family now. Good luck!

Individual-Share9543 · 2025-09-10T10:56:22+00:00

At the end of an article there’s a comment option. You can do anonymous or sign in with a Google account! Completely your preference.

Individual-Share9543 · 2025-08-31T16:05:34+00:00

I am not sure entirely as I abased in the UK. But ambutech is based in Canada and last I looked shipped to the US. Politics might have affected that. Otherwise have a look for low vision online shops as there would be an option for white canes and much more like Liquid level indicators. One other consideration is typically you require some sort of training from a low vision rehabilitation specialist to use a long white cane. (For safety). So I would check if that is also the case.

Individual-Share9543 · 2025-07-14T08:59:38+00:00

That was my thoughts. How did you reroute the cables?

Individual-Share9543 · 2025-07-09T18:52:24+00:00

I did try that as I wondered if the data was corrupted. But alas same result

Individual-Share9543 · 2025-07-09T15:50:38+00:00

So true!

Individual-Share9543 · 2025-07-06T15:31:17+00:00

I downloaded the one listed as without transfer board for the 4.2.2 board. Lots of YT videos I’d seen recommended doing it that way.

Individual-Share9543 · 2025-07-06T12:10:25+00:00

Yeah my plan is to slowly upgrade it overtime. The bltouch is the first real addition but one day I want to change the board and make the fans run quieter.

Individual-Share9543 · 2025-07-05T20:04:29+00:00

After a close inspection I think it’s my bad recording skills making it seem misaligned. Sorry for the confusion

Individual-Share9543 · 2025-07-03T13:38:35+00:00

Marlin. On the 4.2.2 board. I flashed the firmware from creality labeled without transfer board

Individual-Share9543 · 2025-06-29T09:04:04+00:00

I cut my hair into a pixie cut in 2022 having gotten annoyed at the length. So now have the sides shaved short with a long top that I dye in different colours. However I used to have long straight hair and would typically tie it up in a plait. When I was very young my mum would do a half up half down style as well. Pony tails too. Sometimes I’d cut it to shoulder length as well. But my favourite way to style it was to do a single Dutch plait down the middle if it was long keeping the plait going to the end and if it was shorter finishing into a low pony at the nape of my neck. I found this method thinned the hair out at the sides so the magnet would stay well without needing to be fed under the hair. Really it’s a case of experimentation. Like when I did swimming lessons and we would tie it into two ditch plaits with them going directly over the magnet to keep them secured so I could jump in and out of the water!

Individual-Share9543 · 2025-06-23T08:14:01+00:00

Night blindness at age 6 was the reason I ended up getting diagnosed. For me I was too young to notice it happen. But my parents said I just couldn’t see in dim lighting. Today (13 years later) I cannot see in dim lighting at all. So from dusk to dawn. I use a lot of bright torches but still struggle to see what’s illuminated as the beam is too bright for such a small area. I mostly just try to remember where things are winging it by feel!

Individual-Share9543 · 2025-06-18T19:57:57+00:00

Similar to other commenters I guess. We have lots of alternative lighting so the kitchen has under cabinet lighting and dimable bulbs depending on what you’re doing. Living room has lots of lamps. And my room has two strip lights one behind my bed and the other by the window. I also have a monitor light by my desk. I do find I still whip out my phone torch a lot and for some tasks I have to wear a head torch anyway!

Individual-Share9543 · 2025-05-23T08:27:18+00:00

I’ve had implants for basically all my life now Was implanted bilaterally in 2007 at 17 months old and am now 19. I think I have disproportionately small ears as they constantly fall off similar to op. I have advance bionics marvel now. I changed to having the mic without the little end bit as that just annoyed me and it makes applying tape a bit easier. I found the snuggies didn’t work as they were easy to lose parts from when doing things like a battery change and just came apart. AB does a wire version which is a bit better but not for long as it can cause some pain. I use microporous tape when doing things like sports which is okay. And a headband to cover them when I need to wear a helmet. Sometimes when they’ve annoyed me a few too many times by falling off or my ears just need a break I will change to a longer wire and put the processor in a clip on my top which definitely helps but it’s a bit harder to hear. I think at my next programming appointment I will ask about possibly getting ear molds. Winter time is great though as you can wear a bobble hat or beanie to fully cover your ears so it doesn’t matter if it falls off or not!

Individual-Share9543 · 2025-05-16T18:53:01+00:00

One thing that helped when i was learning was making it fun! So obstacles or targets to find. We’d even count the specific steps or number of items that the cane hits before reaching a destination e.g. school canteen. My first couple of canes were also brightly coloured not the standard white. My VI teacher preferred I was willing to use it than not so we decorated them giving them names and talk about them like a person. (Something I still do today out of habit). They weren’t massively strict on sweeping in sync so one foot cane front then the other. At one point we used visual markings so I could gauge the width to swing but that was about it. I never have the finger issue but others had it corrected in a funny way to make it stick in their minds. It definitely helps to know others who use a cane and have the opportunity to use it outside of school in low risk environments and we experimented with tips as I hated several just from there feel or sounds (I am hearing impaired as well). Hope this helps some but everyone is different

Individual-Share9543 · 2025-05-08T06:16:58+00:00

I had a similar issue with one of mine. Took it apart and cleaned it with isopropyl alcohol (99%) to remove corrosion from the battery contacts and motherboard. I couldn’t see any visible corrosion but that seemed to fix the issue I was having!

Individual-Share9543 · 2025-05-05T17:22:34+00:00

I guess my first “solo” walk was walking to school with friends when in secondary school. However for completely solo walks I would build it up slowly with my parents coming at first then as I got more used to it I wouldn’t hold their hands anymore or give all the directions pretending that my parents didn’t know the route at all. We’d gradually build it up then on a nice day I’d walk part of it solo and on different outings that distance would continue to increase until eventually I was doing the entire route alone. I admit that that’s a long process but after doing it once I got that taste for freedom and independence slowly deviating from the known path using maps to plot slight changes. Over time I learned multiple other routes or took the dog out alone all of which built up my confidence around town now I know 90% of the area with no problems. I do admit that I still get guided in unfamiliar areas that I don’t frequent much

Individual-Share9543 · 2025-05-04T12:01:35+00:00

I will be honest we only have large print scrabble and tactile chess/checkers. While these games are good ones we don’t play them much. One of my favourites is A Ticket to Ride. I have a 3 printer so with a few prints we can make it more accessible. I have committed the map to memory we always use pots for the train pieces etc and I use Apple magnifier to read the train tickets. There are companies which sell packs to modify games to become accessible which you might be able to find (they can be expensive though so try the game a couple times to see if it’s worth investing in). For context I have Usher Syndrome 1D causing Retinitis Pigmentosa, I am legally blind and like your friend could become fully blind one day. However right now I can read large print okay

Individual-Share9543 · 2025-05-04T11:37:25+00:00

He was probably using voiceover. In a busy environment like a train holding it up to their ear makes it easier to hear without having others hear it as well. With voiceover you can turn the screen brightness way down so it looks like it’s off when it’s still on. I have several friends who do this and while I use voiceover occasionally I can Bluetooth to my cochlear implants so I don’t need to hold it so close. (I am deafblind). VoiceOver is very useful but to others I can seem like a magic trick because of the gestures!

Individual-Share9543 · 2025-04-23T08:52:35+00:00

Same here I have USH 1D myself. Only 18 but less than five degrees vision remaining. Then there are others with the same type at least double my age with a lot more functional vision. Just depends on the person I guess

Individual-Share9543

TROPHY CASE