Proliferative Retinopathy

My husband has Type 1, and he was diagnosed with Proliferative retinopathy about 5 months ago. The past 5 months have been really hard. He’s had a bunch of surgeries and in July he was blind for about a month. He can see good in his right eye but his left eye is still bad and he might not get his sight back like it was before. I just wanted to see if anyone else has gone through this and if you have any advice on how to deal with it. It’s been stressful but he’s keeping his head up. It all happened suddenly with blood vessels bursting in his eye when he woke up in the morning. Has this happened to anyone and did you get your sight back? If you went blind, is there anything you can tell me about services out there or jobs that you can still do? I’m just worried about the future if it happens again. I think that is the worst part. The wondering if he’s going to wake up tomorrow and not be able to see again. I fell like we should prepare to that just in case.

I don’t have diabetic retinopathy, but I have had Type 1 for 20 years and have been legally blind since I was born. I’m not sure how services work in the U.S., but I believe each state has their own rehabilitation services … I’m just not sure how you would go about obtaining them. An eye care professional or a Google search should turn up some starting points, though. I’m pretty sure all rehabilitation services are free of charge to the individual.

I do want to say that someone who is blind or visually impaired can do almost any job out there. They just have to learn skills to do it a little differently (that’s what rehabilitation services would teach). I’m a teacher and most people would not think it’s possible for a legally blind person to safely and effectively manage a class of 25 sighted seven-year-olds, but it is. I’m definitely not the first person to do that. I’ve taught children with learning disabilities when people were like, “How can you teach a kid to read when you yourself can’t see to read?” But I did it, and did it better than some of the sighted people had before me. I’m not the first one to do that, either. I’m not any kind of amazing or extraordinary person; I just have alternate techniques that I use to accomplish what most people do with their vision. There are blind teachers, lawyers, doctors, academics, carpenters, actors/actresses, journalists, psychologists, mathematicians, athletes, computer programmers, chefs, authors, scientists, social workers, religious leaders, entrepreneurs, meteorologists, receptionists, CEOs … the list goes on and on and on. Chances are that with the right training and technology, your husband could continue on in whatever job he is is currently doing.

My motto has always been, “The only thing a blind person can’t do is see.” That, and maybe be a pilot or truck driver or a surgeon … although in 50 years, who knows, maybe that will all be automated and those jobs will no longer exist! The list of jobs a blind person “can’t” do is very small compared to the list of jobs they can do.

Feel free to send me a private message if you want to talk and/or have any questions or anything. Good luck to you and your husband—I hope his vision remains stable.

So sorry to hear about this. I do have retinopathy, but not proliferative. My retinoligist tells me that is a potential next for me so your situation hits close to home. I go in a couple weeks to see how my second lasr went. I can see better, but still not like I used to. I also have PN with numbness in my hands and feet. Makes it really difficult to substitute feeling for sight.

I think you are on the right track to seek out help and info for the worst case. The not knowing how or what to do is all the more troubling when you are in the midst of the battle. Having at least some knowledge of you resources would take some of the edge off if it gets to that. Jen is right, there are options and resources. I have had to change how I do a lot of things because of my vision and problems with my hands.

I’m sure your husband is doing what he can, but the best advice I can give is to keep your BG as close to normal as possible. Be especially careful to stay below 140. I also use an anti inflamatory eye drop called Nevanak (spell?) that helps a lot to keep the swelling in check. You may want to ask about that.

How is his A1c? That’s truly the key to getting it under control. However, if it’s high…lowering it very fast will likely make the retinopathy worse. I wish I had been warned about this by my dr. ahead of time. If retinopathy is already bad and A1c is high it’s more beneficial for the eyes to lower the A1c more slowly (I lowered mine a full 4% in 3 months!!! By a slower change I mean maybe dropping it 4% in a year…)

If his A1c is already in a good range, then I’m really not sure how else to get a handle on the retinopathy.

I was diagnosed with proliferative retinopathy a little over 4 years ago. I’ve had literally dozens of laser treatments on each eye, and I had surgery on my left eye. I was essentially blind in my left eye for 2 months prior to the surgery, and for 2 months after the surgery I was totally blind in that eye. Since then I’ve taken my A1c from 10.4 down to ranging between 5.6 and 6.5. My retinopathy is much better - I still have the very occasional bleed in my right eye (which never had surgery, just a ton of laser), and while these can sometimes be bad, it usually clears on its own within a week at the most. I haven’t had any laser in over a year. My left eye remains stable. I do have to be careful about straining myself with workouts, as this can cause a bleed. Also, I have to be a lot more careful while driving…the laser itself caused damage that took away a lot of my peripheral vision, color vision, ability to perceive depth, and I have horrible night vision. But overall I can see to do all basic day-to-day activities and my eyesight with glasses is pretty close to what it once was (like I said…with making adjustments to how I drive because of some issues).

Hi Michele,
Do not take him to see any 3D movies. It is horrible to watch if you only see out of one eye.

I went blind in one eye over the course of less than 24 hours in July of 2009. I was eventually diagnosed with NAION (non-arteritic ischemic optic neuropathy). It took me about a month to start seeing shadows. There is no surgery for my condition. As of 2009, surgery might make it worse, but won’t make it better. Since mine was caused by a stroke in my optic nerve, mine improved for about 6 months. I am still, and will always be, partially blind in my right eye. For me it is a blind spot that takes up about 30% of the vision in that one eye.

I realized I had no depth perception when I was on the freeway headed to my opthamologist’s office. It is horribly frustrating. When I read online that to lose vision overnight is traumatic, that was comforting, because even though I was frustrated and scared, I was totally normal. Before I started to get vision back, I could see shadows or pixels. I couldn’t read, but it was enough to give me my depth perception back. I work in an office and worked shorter days for about 5 months because my eyes got tired. It has been over 2 years and my eyes still get tired, but I am used to the limited vision for the most part. I think it took about 9 to 12 months for me to accept and not be mad about it.

Not sure how your husbands A1c is, but improving that will always help with healing as well as preventing future damage. He knows that already. I am sorry he has to face this. I am also sorry you have had to face this. I was an emotional wreck for quite a while and I know it wasn’t easy for the people around me. They went through what you are probably going through, so I empathize with you.

Also, there is a group called Diabetics with Eye Problems. You could see if there is anything / anyone there that / who might be able to help. I posted a discussion in February 2010, about 6 or 7 months after I initially went blind because that is how long it took me to be positive to the point where I could help someone else, but nobody has had my problem yet, I guess.

My boyfriend knows I love to laugh when I am stressed because laughing releases endorphines, so he started calling me a pirate. People at work started asking if I was goign to start wearign a patch which mutated to “Arrrrr”, which mutated to “Where is your parrot?”