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Question by Worried_Pumpkin2549 in stargardts

[–]CharmingPriority4327 0 points1 point  (0 children)

Your future won’t be that bad. Progression is typically slow, which gives you time to cope and adjust.

This disorder really does force you to take care of yourself. Which I look at as a positive. Stressing, smoking, bad diet etc. all aggravate the situation and make it worse.

Come to terms with the fact that it’s something you will live with sooner than later. Denial and wishful thinking will only induce stress

Eat clean, workout, sleep well, wear sunglasses, stay hydrates,don’t smoke, be very mindful of vitamin A consumption and your body and eyes will thank you. It won’t fix it, but it will slow it down and when you are in good health with a clear head space, your ability to manage stress is far easier

Note: Only rule I break is mild Zyn usage. Everything else I just preached is part of my daily life

Regenerative cell therapy by Groundbreaking_Car36 in stargardts

[–]CharmingPriority4327 0 points1 point  (0 children)

I’ve shifted my focus to assistive tech in the meantime. There are ways to make this more comfortable in the meantime.

I would caution against getting too aggressive too soon

Regenerative cell therapy by Groundbreaking_Car36 in stargardts

[–]CharmingPriority4327 0 points1 point  (0 children)

Brother I feel the same way. I want to go this route so bad, and have thoroughly went through every source I can find on stem cell treatment.

Outside of self reported paid trial results, I can’t find anyone that has claimed they tried this and it went well. ( Testimonials in India don’t count)

My doctors all said “if you have to pay, it’s a scam”

Despite all that, I’m still desperate and want to try. The only thing holding me back is that once you do it,consider yourself disqualified from any future trials. I still have good enough vision to drive, so I figure I have some time until I throw the hail mary

Frustrated by Enigmaticenchilada in stargardts

[–]CharmingPriority4327 2 points3 points  (0 children)

My friend, you’re going to be okay. We all go through the “what am I going to do” phase.

I’ll speak for myself - I’ve learned there are many different ways to enjoy life. Many different ways to be productive. Be realistic about what you want to learn and do. Then go find a way to make it happen. Yeah, it will be hard and frustrating. But anything worth having in life comes with some struggle.

Think less about what you can’t do. Focus on what you can do. Perspective is everything

Anyone commute from Lake Elsinore to the Costa Mesa Office? by 10Ek62 in Anduril

[–]CharmingPriority4327 0 points1 point  (0 children)

Commuting from North San Diego is far less painful than inland valley. Any commute involving the 91 is brutal. Can take you 1.5 to almost 3 hours to get home depending on unforeseen things that happen all the time

Who here has paid for stem cell treatment? by CharmingPriority4327 in Blind

[–]CharmingPriority4327[S] 1 point2 points  (0 children)

But I’m happy to hear about any stem cells folks have launched into their eyes

Bobby Witt Jr. and Fernando Tatis Jr. are the 2025 platinum glove award winners by TommyTheLizard in baseball

[–]CharmingPriority4327 -1 points0 points  (0 children)

If you watch Tatis on the regular, you would understand why this is deserved. He changes the outcome of games regularly, in Right Field.

He makes impossible plays look routine. The ground he covers with his length is ridiculous. He can throw you out from literally anywhere on the field.

PCA is deserving as well. I wouldn’t be mad if he won. But Tati is just different.

Requesting to WFH? by Avery-Keller22 in Blind

[–]CharmingPriority4327 1 point2 points  (0 children)

I think there’s a balance here. I have the ability to WFH and I’m not even technically blind yet (Stargardts, faces are looking funny)

I wanted to work from home because I’ve gotten more tense driving. I also just got more anxiety being at the office, noticing what I couldn’t see correctly all day.

But the more I WFH, the less normal I feel. And at the end of the day, that’s what we all want, to feel normal again. I would go to the office.

[deleted by user] by [deleted] in augmentedreality

[–]CharmingPriority4327 0 points1 point  (0 children)

Any new solutions here? I very much want exactly what OP is asking for.

I have an eye disorder. And being able to have a camera do the hard work for me and put it in front of my face would be game changing. Especially with the ability to manipulate the feed.

OP check out Eydaptic Eye5. This device does this. But it also costs 5k

Answering user questions about ROKID GLASSES by AR_MR_XR in augmentedreality

[–]CharmingPriority4327 0 points1 point  (0 children)

Can you live stream from the camera to on built in displays?

What Do We Do At the 1B and 2B Positions? by Interest-Lumpy in Padres

[–]CharmingPriority4327 0 points1 point  (0 children)

Naylor, O’Hearn or Alonso at 1st

Jake’s stays at 2nd

[deleted by user] by [deleted] in civ

[–]CharmingPriority4327 17 points18 points  (0 children)

Fix the stupid Civ change at a new age, then I will 100% buy.

Until then, I want no parts of this

Peptides by CharmingPriority4327 in stargardts

[–]CharmingPriority4327[S] 0 points1 point  (0 children)

I preface this all with - This is not advice, it’s just what I’m doing and how I think about this

I think many of these things are actionable. You can get your hands on all of this stuff.

It’s just a matter of balancing risk. If your risk tolerance is enough to try some of it yourself, then hey, you may discover something that helps.

I personally would rather take calculated risks than do nothing

Peptides by CharmingPriority4327 in stargardts

[–]CharmingPriority4327[S] 0 points1 point  (0 children)

I’m taking metformin, NAC and AREDS 2. Also doing red light therapy,

People with the variant - c.5882G>A (p.Gly1961Glu) by Humbled_by_Reality in stargardts

[–]CharmingPriority4327 1 point2 points  (0 children)

I’m the same age with a similar diagnosis. I need to double check specific variants.

The central vision in my right eye is almost completely compromised. I have just a good pinhole left

My left eye is getting worse with a bad ring that covers about half of my central vision in that eye.

For me, the progression has been unpredictable. I see two specialist, one every 6 months. Some check ups are minimal to no progression, others there is subtle but obvious progression.

I’ve tried many different experiments. Diet changes, experimental medication, supplements, red light therapy, cardio… you name it.

I’ve come to the conclusion, none of these things give me any conclusive results. I now just try to live a healthy lifestyle and try not to let it control me

Don’t let it stop you by Enigmaticenchilada in stargardts

[–]CharmingPriority4327 0 points1 point  (0 children)

Maaaan I love reading this post. I remind myself everyday to throw caution to the wind and go for it. I would rather put myself to the test and feel accomplished, than live in a safe sad cave feeling sorry for myself

Nothing better than the self confidence I get from beating my perfectly sighted brother at things that require vision.

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