It is such a hard thing to deal with when you are young, feel like you are in your prime and your life is just about to start, and bam, you’ve got an incurable disease that you can’t hide from because it’s in your eyes. I will admit I act quite tough about the situation but I definitely have my low times over the issue and I let myself have a cry over it before I tell myself to harden up and that I have a whole life to live for.
Being told you can’t see well is such a blow, even if you realised it prior, but I started doubting myself in so many ways. It went from not being able to drive, to being scared to be in a car because it is hard to read signs and see what’s ahead of me.
As a person who always has to be in control and needs to know EVERYTHING about what is happening to me and in the world, I found it quite confronting when I was told of my diagnosis. I was scared to go out at night because I felt I couldn’t see and I was in total darkness, whereas I think this is partly psychological as my EPS study showed my night vision isn’t affected.
I think there is not only the issue of dealing with vision impairment but also the other issues that arise with it; it’s not just about finding ways to get around or ways to work, but also how it affects us psychologically, because I am sure I am not alone with this. Not only am I dealing with my vision impairment, I am also dealing with a severe anxiety disorder that is life limiting. Double whammy or what.
So I encourage you all to speak out because we are in this together, and nothing is more helpful than hearing that someone else is experiencing the same thing.
My heart goes out to you C.R. I'm sure you'll find a way to deal with your anxiety and limit the impact it has on your life. I can only imagine how difficult this must be for you.
ReplyDeleteMy Boyfriend has Stargardts and has gone through what you are going through. Being spriritual has helped tremendously.
ReplyDeletehold your head up high ,and don't let people say you can't play in all the raindeer games , only you control you . i have been legally blind for 45 plus years , and i still go through all those emotions . just remember to use and excercise your remaining vision throw a vollyball with a friend then a soft ball (etc) by yourself throw a ? into the air you can sharpen the vision you have left.i do all kind of stuff i was told i couldnot do . just remember you are not the person rideing shotgun in a car that they are going to ask to look up the road to see if there's any traffic coming ( you know what i mean)--hope this wasn't boring , just an old guy talking--chuck
ReplyDeleteThanks everyone. I hope your boyfriend is ok Janet. This definitely does help.
ReplyDeleteAnd Chuck you are not just and old man talking but a wise one!! Thanks!
thank you
ReplyDeleteThank You C.R My boyfriend Tony is doing well. He started losing his vision when he was about 22. He's 52 now and was barely diagnosed with Stargardts about two years ago. At first they said it was Macular Degeneration which is quite similar. At 22, he couldn't pass the DMV test to get his drivers license and his doctor told him to just get on disability. Tony didn't want to stop working and miraculously my brother's friend who worked for an eye doctor gave us the address to the Eye Care Center in Fullerton, California. It's actually the Southern California College of Optometry. There, they fitted Tony with a special pair of glasses with a magnifier on it. I forget what it's called I'll ask Tony. And he was able to go on his driving test and pass. So he's been driving since. He has to be seen every two years. Four years ago he barely passed the eye test. Two years ago his eyes were stable and he passed again. He has to go again at the end of the year, and we continue to pray that the scaring at the back of his eye will disappear and he will be able to pass the test again. He juices regularly with his Jack La Lanne Juicer. And C.R he takes that fish oil and Lutein.
ReplyDeleteI had read that the vision decreases for about 20 years and then stabilizes with this disease called Stargardts. So we are praying that his will finally stabilize. I told Tony about your blog and he wanted me to write to you. He does do a few eye exercises. I was wondering if Chuck would explain to me the volleyball exercise so I can tell Tony. Tony leads a normal life, unfortunately was not able to become a Major League Baseball player like he wanted. But he can still enjoy going to Angels Stadium to watch the Angels. He likes the Los Angeles Dodgers also! I agree with what Chuck has said as well. --Janet
Wow Janet it took a while for a diagnosis! He sounds like he is doing well if he can still drive! Does he use the glasses to read and see things up close?
ReplyDeleteYes C.R the first doctors Tony saw were lazy and did not try to find out why Tony couldn't see the letters on the eye chart. They just wanted him to start disability. Thank God for the Southern California College of Optometry and even they didn't give Tony a diagnosis in the beginning. They just told him he had the same disease that Don Knotts had. Hopefully Tony will pass his eye test at the end of the year, but even if he doesn't he has worked an extra 30 years because of the help he received at that College. I remember the name of the glasses they fitted Tony with; Bioptic glasses which he doesn't use to read or see things up close. He just uses them for that driving test. To read and for info up close he uses this 6X Magnifier Pendant http://www.independentliving.com/products.asp?dept=86&pagenumber=2&deptname=Pendant Magnifiers&sortBy= He likes keeping it in his pocket at all times and uses it whenever but he is self conscious in front of certain people. I told him he shouldn't care what people think as long as he can see the info. I feel sorry for him reading the paper that way as I have tried it and it's hard. But he is used to it. I just bought him this device http://www.aisquared.com/blog/2012/02/using-the-i-loview-out-in-the-real-world/?utm_source=feedburner&utm_medium=email&utm_campaign=Feed%3A+zoomedin+%28Zoomed+In%29 and I hope he will enjoy reading with it. I would like him to get an ipad in order to read more comfortably but he is not very computer oriented. I would like to eventually get one my self and show him how to use it. Tony's father, and uncle and two of his brothers also have this disease.---Janet
ReplyDeleteHi C.R. and Janet,
ReplyDeleteFirst, I want to address C.R. I totally understand what you’re talking about. I’ve been living with SD for over 20 years and I still go through the emotions. It doesn’t happen very often, but a few times I had a panic attack and I got really freaked out. I think what caused it was me thinking my condition was worsening… but I think it was all in the mind. So I just had to take a deep breath and tried to relax. I think the only thing we could do is to try and stay as positive as possible. On the bright side, at least we can still see (although not very well) it’s better than being totally blind. For the most part, I manage to get around pretty well and I just picked up the new ipad last Friday, so that’s been fun. I gave up my license a year ago just because I didn’t feel it was safe for me to be on the road.
@ Janet, I see that you and Tony are from California. I’m from the Los Angeles area and I am an Angels fan too. I’m currently involved in a clinical study for SD over at UCLA. I’d love to exchange contact info because I’ve never met anyone in person who has SD.
Okay, what is your name? And when you say SD, does that mean Stargardts? ---Janet
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