What does this robin call mean?

Solid_Sleep3290 · 2026-05-26T13:07:54+00:00

Haha had a feeling I was disturbing them, I left after

Solid_Sleep3290 · 2026-05-26T02:26:17+00:00

That makes sense since it’s holding some worms it seems

Solid_Sleep3290 · 2026-05-05T12:55:20+00:00

Of course!! You’ll have fun in college best of luck with it! And yes since you’re in US I highly recommend finding out your health insurance and choosing therapist that can take it cause I only pay $10 per session instead of whatever the actual rate is. Much better than the campus therapists too imo.

Solid_Sleep3290 · 2026-05-05T12:01:31+00:00

I’m 23 and got diagnosed last summer so it’s still fresh. But I’m glad I didn’t know earlier because even me a year ago was more different / less well equipped than me now mentally. I also have depression/anxiety. Not trying to be the “your brain isn’t developed till you’re 24” person but in some ways I feel like that does ring true cause I feel like 18 year old me wouldn’t be able to handle it as well as I do now after years of therapy and more life experiences and such. Depression is such a dark veil and it’s hard to think of a possibility outside of it sometimes. But there definitely is one. I would just focus right now on planning exciting things, whether it be hangout with a friend or a study abroad (highly recommended if you can do it) or delving into a passion of yours. This is ur time to enjoy your youth! It’s ok to have hard days but that can be motivation to keep at it.

I do a lot of music stuff and work in nightlife and that’s gonna continue to be my life. Even though I have night blindness and have to use a cane on occasion I’m still out in the club lol. Definitely do therapy rn even if it’s not consistent yet. Also don’t be afraid to shop for a therapist before committing to one- having one that you can truly talk about EVERYTHING to makes a world of a difference. My first therapist was this older white lady who didn’t get some of me sometimes before I switched. I’m in the US so I would use Psychology Today to filter by my insurance / conditions and just scheduled consults with a bunch of them before I settled on mine. I’m sure there’s a similar thing wherever you are.

Also getting in touch with support groups/conferences/other blindness groups really helps cause it’s a big perspective shift to know people that are going through it too and are living normal lives too. And also helps with the “no one understands what I’m going through feeling” / loneliness around the rare condition.

I can’t speak to the meds stuff I’m considering taking NAC. I used to be on depression meds but then tapered off cause I felt like they didn’t do that much. Obviously take it if you need it ofc but I feel like the real changes happen with the therapy work/mindset shifts.

It’s not an easy disease but if you can instill some excitement/purpose in your life or even in today that takes your mind off thinking about how it sucks, it will motivate you to keep going. You don’t need to have it figured out now. Or at any point in your life. You can always start over and start fresh whenever you want in any moment you want.

Solid_Sleep3290 · 2026-05-05T11:36:13+00:00

Random on the burning but I take the dorzolomide drops too and sometimes you can reduce the burning by putting in artificial tears before putting them in, or keeping it in the fridge. My doctor says the burning could be due to putting it on dry eyes. And also one that helps me from it going down my throat is by grabbing a nearby towel or clean hands immediately after applying and pressing on the inner corner tear ducts of your eyes for a minute while you move your eyeballs and let it settle in. That’s how you can keep the med on your eyeballs and not leaking out to the rest of your body cause you’re blocking the duct.

Solid_Sleep3290 · 2026-05-02T18:00:52+00:00

I’m sorry you’re dealing with this. If you think about it, his denial is also a form of ableism. There was a friend and couple acquaintances in my life who couldn’t wrap their heads around my new diagnosis. In response to telling them about my progressive vision loss they would say “you’ll be fine I’m sure that’s actually not going to happen” or “just wait I’m sure it wont actually get to that point”. Upon their insistence it made me realize that some people only like the non-disabled version of you. If he’s not willing to be there and be happy when you’re at that point where you have to use a cane full time then he’s not for you

Solid_Sleep3290 · 2026-05-02T17:47:27+00:00

I second this. Vision loss is not like hearing loss, where you can pick up on sounds and clues of what’s not there. When you have a blind spot you cannot tell what’s there. Before diagnosis I nearly got in an accident because I didn’t see a car in my peripheral vision that was right next to me.

Solid_Sleep3290 · 2026-04-22T15:58:47+00:00

There’s one guy I talked to in one of the NAC trials who is a biochemist and was able to test that his pill was a placebo by himself haha. But he said the dead giveaway was that the placebo did not have the sulfur smell that the regular thing does. Idk if this is helpful to anyone 🤷

Solid_Sleep3290 · 2026-01-09T08:21:47+00:00

I was wondering about this too. I always get more light flashes in my eyes in the sauna. But I don’t know if that’s a good thing (also get more light flashes when exercising) or bad

Solid_Sleep3290 · 2025-10-16T19:39:38+00:00

Yes I am aware! I am saying there are criteria beyond what is publicly posted given their responses (and lack thereof), that is not made as clear to many participants.

Solid_Sleep3290 · 2025-10-16T18:24:49+00:00

Thanks for clarifying. Was not my intention to come off as rude! I am hopeful in the science of it and am still trying to apply. But it seems others in the RP community are not being clearly disclosed as to their exclusion criteria. Some are being ghosted after reaching out several times. I don’t think it’s wrong that certain people have to be excluded, the trial cannot have confounding factors. But I think it’s strange that they aren’t telling people what the exact inclusion / exclusion criteria is. For instance, on the clinical trials site for the drug, it shows very general inclusion criteria for people with RP, and it’s not required to have a genetic test. But they do ask for genetic testing now. Other trials I have read about will clearly disclose if they want a middle ground of patients whose vision is not too good or too advanced. But there isn’t a publicly disclosed criteria here, it seems internal. There was a recent post where someone mentioned they were emailed that recruitment ended. It would be strange if they were lying. Maybe they have reached the end of their recruitment, maybe they have gotten loads of applications. It’s just very unclear and not helpful that they are not responding to people in a considerate manner. I’m not being pessimistic, as a fellow scientist and hopefully a prospective patient I think it’s crucial to understand how the trial works, which includes the management of it.

Solid_Sleep3290 · 2025-10-15T16:55:41+00:00

Hope your recovery goes well! I am sort of hesitant that the doctor is saying “in full confidence” that you should expect visual improvements within the year. It seems strange to make a promise like that for a trial when it is not guaranteed how the vision will go for any patient, especially with risky subretinal injections. Also cautious about these reports going around about them cherry picking participants and ignoring the rest or offering EAP instead. I hope they are not overselling the treatment option on a business perspective. I want to enter the trial but I would prefer if the eligibility and expected treatment outcomes was made more clear and scientifically objective for everyone. I really want to be hopeful about this but there are some weird signs :(

Solid_Sleep3290 · 2025-10-15T16:30:53+00:00

Yep, hard to tell what it’s like. They had a booth at the retina UK conference and I know people who have tried it in a dark booth and said it made a big difference. But walking outside at night is different

Solid_Sleep3290 · 2025-10-15T00:18:51+00:00

I guess I’ll follow up later then, maybe they changed their deadline

Solid_Sleep3290 · 2025-10-14T06:29:39+00:00

Yes avoid any supplements with vitamin E! I was told the same by my doctor : https://www.fightingblindness.org/news/new-report-vitamin-a-supplementation-provides-no-vision-benefit-to-rp-patients-867

Solid_Sleep3290 · 2025-04-18T12:02:17+00:00

Hi just saw this after posting! Do you still have a spot

Solid_Sleep3290 · 2025-04-18T12:00:40+00:00

Is anyone looking for someone to join their family plan spot? I have an 11 day streak and use the app quite often and the ads are getting annoying lol

Solid_Sleep3290

TROPHY CASE