Atypical Vision Problem *update* Back!

[Independence1776]

I have corrected normal vision, but I'm also severely light sensitive. I currently use a long black cane so I can walk safely outside with my eyes closed. (My current sunglasses do not help, even with a hat on.) By the time of my family's trip to Disney World the first week in June, I'm planning on having sunglasses that do work. However, I'm also packing my cane just in case something happens to them. This last is what I have concerns about.

I have only been using my cane since September, and recieved no formal training with it. I've taught myself to use it with information online and just plain daily use. But I have never had to use it in a crowded environment like Disney (my college is tiny). Futhermore, my parents do not approve of my use of the cane because they feel I am "misrepresenting" myself. They do not know I am planning on packing it.

My main concern is how people are going to treat me if I do end up having to use it. I only use my cane outside, never inside. I'm considering taping a vertical peice of paper that says "light sensitive" to the section of my cane below the grip. I'm also thinking about making up some small cards that explain my problem. Other than that, I have no idea about what to do or what I should be aware of. I'm hoping I won't need the cane, but I'm preparing just in case. I'd greatly appreciate any advice you guys have.

 

[OneLittleSpark]

To begin with, if you need the cane, use it. The sun in Florida is extremely bright, even for those without sensitivity to it, so don't over-do things and risk damaging yourself. You have a visual problem which is aided by using a cane, so therefore you are not misrepresenting yourself by using one. Not everyone who uses a cane is blind, they can benefit people with a range of visual impairments. If you'd feel happier taping the piece of paper on your cane then go for it, but if not, don't worry.

A couple of questions:

What time of year are you going? That will affect the brightness of the sunshine (though it will be fairly bright whenever you go) and the crowdedness of the parks.

Secondly, is it only bright lights that you have a problem with, or would you benefit from sitting closer to the front in shows? If this would benefit you, you might want to consider getting a Guest Assistance Card (GAC), information about which can be found in the FAQ near the top of the disABILITIES board.

Good luck getting the sunglasses and have a wonderful trip !

 

[Cheshire Figment]

You might want to consider also bring along a set of clip-on sunglasses to wear on the top of your regular sunglasses. This will give additional protection from the sunlight and may make it unnecessary to close your eyes when in the sun.

 

[Independence1776]

To begin with, if you need the cane, use it. The sun in Florida is extremely bright, even for those without sensitivity to it, so don't over-do things and risk damaging yourself. You have a visual problem which is aided by using a cane, so therefore you are not misrepresenting yourself by using one. Not everyone who uses a cane is blind, they can benefit people with a range of visual impairments. If you'd feel happier taping the piece of paper on your cane then go for it, but if not, don't worry.

A couple of questions:

What time of year are you going? That will affect the brightness of the sunshine (though it will be fairly bright whenever you go) and the crowdedness of the parks.

Secondly, is it only bright lights that you have a problem with, or would you benefit from sitting closer to the front in shows? If this would benefit you, you might want to consider getting a Guest Assistance Card (GAC), information about which can be found in the FAQ near the top of the disABILITIES board.

Good luck getting the sunglasses and have a wonderful trip !

I know I have a problem. My parents don't get how severe it is. It's really annoying. An example: Dad had his eyes dilated several months ago over Christmas break. He opened the back door to go outside, looked out, and closed it to get his sunglasses. I told him, "That's a lot what it's like for me." His response: "It can't be that bad."

I'm going the first week in June. Given that I'm from northwest FL, I know how bright the summer sun is, and I'm guessing it's worse in central FL. It's the crowds I'm worried about.

It's mainly bright, intense lights I have problems with, though I also have issues with flourescant and strobe lights as well.

As for clip-ons, those are my current sunglasses. (I don't wear contacts.) The sunglasses I'm planning on buying can fit over my glasses. But I'm still going to bring the clipons for late in the day when it'll be too dark to wear my new sunglasses, but still bright enough to bother me.

Thanks for the advice. I was actually a little afraid to post this because it isn't something most would consider to be a problem. I know better now.

 

[OneLittleSpark]

Unfortunately June is a fairly bad time for crowds, but that's not to say it isn't do-able. You might benefit from a tour book with crowd-busting tips, such as Tour Guide Mike, to help you avoid the worst of the crowds, but I've never used any, so can't give you a personal recommendation.

I've looked for a list of attractions with strobe lighting, but can't seem to find one. Maybe someone else here can help?

Have you considered getting adaptive lenses for your glasses?

If your parents push you to do something you don't feel comfortable doing, such as leaving the cane behind, you might have to get firm with them. I know that your parents are sometimes the hardest people to put your foot down to, but it'll be worth it to stop you putting yourself in a position you're not happy with. The first time my joints flared up at Disney it took a long time for me to persuade my folks to rent a wheelchair for me, but once we had, the holiday was so much better. We could all go more quickly and happily as I wasn't slowing them down, hobbling along in pain (different scenario, but you get my point). You do whatever you need to do to make your holiday the best it can be.

Hope you have a great time, and please post up any questions you have, there's likely to be someone here who knows the answer !

 

[SueM in MN]

A problem I can see with the black cane if you are using it to 'feel' like a blind person would use a white cane is that the black cane will be much harder for people to see and therefore people might trip on it or walk into it while you are using it. You might want to put something on it to make it more evident to people - like a stripe of some kind of bright colored tape.

Another thing - wearing a hat with a brim will shade your eyes and cut down on the light even more. Something styles like a baseball hat or a they have more stylish kinds like this newsboy cap or these from a search on Target for hats. You just want the brim to come out fairly far so it actually shades you. With the new glasses and a hat it might be enough.

I'd also suggest talking to an opthamologist, Internal Medical or Family Practice doctor (not an optometrist) about your problem if you haven't already. Extreme light sensitivity is usually a symptom of a problem. Rather than treating the symptom with darker glasses, figuring out what the problem is and treating that might eliminate or lessen your photo sensitivity a great deal.

There is information about strobe lights in this thread about strobe lights and epilepsy (there is a link to it in the disABILITIES FAQs thread).

 

[SueM in MN]

Have you considered getting adaptive lenses for your glasses?

Darkening lenses would not get dark enough for you to use alone outside in the sun, but they may make it so that with your extra dark sunglasses on top of them, you feel like you can open your eyes.
They would very likely be enough to use where it is light and (right now) you are planning on using clip ons over your glasses.
If you haven't already, you should look into getting antiglare coatings and UV coatings put onto your regular glasses. Those can help a lot with the amount of UV light hitting your eyes (and UV light is the main problem with photsensitivity).

 

[Independence1776]

They would very likely be enough to use where it is light and (right now) you are planning on using clip ons over your glasses.

I already use clip-ons. They don't work. That's why I need new sunglasses.

And, yes, that is how I use my cane. (It is a blind person's cane, only black.) Visibilty is the other reason I was considering putting a sign on it. But I also use constant contact techinique, so there is the constant scraping sound the tip makes on the pavement to help as well.

I already have a hat with a wide brim that I use on a daily basis. It does help to some degree (if I don't wear a hat, sunlight hurts even with my eyes closed). I also have antiglare and UV coating on my glasses as well.

The other problem with transition lenses is that they can take several minutes to darken fully. During that time, if sunglasses are used, they won't fully darken given the lesser amount of UV coming through. I've looked into using it, but decided it wasn't right for me.

Thanks for the link about strobe lights. I think the main reason they bother me is that they flash bright and turn off rapidly. My eyes can't adjust at all to them. Fluorescants just seem to be too bright and too white, if that makes any sense at all.

I truly do thank you for all the suggestions you've given me. I think what I'm going to do is write a letter to my parents explaining exactly what my problem is and how the cane helps me (I'm much better explaining things on paper than out loud). But I'm still concerned about how to use the cane safely in a crowd since I haven't had any experiance. I know I won't be able to avoid one, given I'll be at Star Wars Weekends.

 

[taximomfor4]

You didn't mention this....sorry if I come across as a worried parent, lol. Have you consulted a dr or opthalmologist about this? They have different aids to give, for specific problems. I would worry that sunglasses just cover the problem a little, while allowing further harm to occur. I would definitely see a professional ASAP about this, rather than just depending on sunglasses and a cane.

Beth

 

[Independence1776]

Yeah, I'm planning on seeing a doctor about it. But I'm at college now, so it won't be for at least another couple of months. It doesn't help that I don't have much faith with the medical profession in general- I asked my optometrist and she said, "Some people are more light sensitive than others." Just like I had found out from my research about it online...

And you're allowed to be a worried mother! I've actually been light sensitive my entire life- I started wearing sunglasses in the third or fourth grade- but it's gotten worse over the past couple of years.

 

[leanan]

I have some excessive light sensativity issues as well. Yes it is a problem. Yes if you are severe enough that you close your eyes a lot then using a cane is what you need to do. You are not a wuss and I am pretty sure you are not exagerating your problem. It is annoying as heck.

You know what makes me crazy? Getting my picture taken. The flash blinds me badly. It takes 5 shots to get one decent picture where I am only squinting my eyes. It makes me sad. I torment the poor defenseless photo pass photographers because I am always running back for retakes or asking for them to do extras. If my eyes are open I am not smiling because I had to fight so hard to keep my eyes open.

 

[SueM in MN]

Yeah, I'm planning on seeing a doctor about it. But I'm at college now, so it won't be for at least another couple of months. It doesn't help that I don't have much faith with the medical profession in general- I asked my optometrist and she said, "Some people are more light sensitive than others." Just like I had found out from my research about it online...

Optometrists are not medical doctors. They specialize in 'measuring' the eye and doing screening for problems. They are very good at what they do, but they are not the right kind of doctor to see for this.
Some people are more light sensitive than others, but what you are describing is way off of the range of normal and needs to be evaluated by a medical doctor. Especially as you mention that it has gotten worse.

There should be some type of health care available at your college. There may be a student health department if it's large enough or someplace they can refer you to. And you would be either still under your parents insurance or would have student insurance.
The increased photosensitivity might be caused by something that needs to be taken care of in order to prevent worse things from happening. And waiting a few months might make a difference.
I am speaking not only as a worried mom, but as an RN. Do yourself a favor and get it checked out. At least if you do that, you have something to tell your parents besides "my eyes are sensitive" which they already know and don't believe is as bad as you say.

 

[LWQuestie]

Independence1776: People generally don't associate black canes with visual impairment, so I would strongly urge you to try to obtain a white cane if at all possible. I would also recommend the use of a collapsible cane, as a long straight cane could be difficult to manage getting on and off of most attractions.

You can try this website: Independent Living Aids. The canes range from $19-$40.

My mom is totally blind, but was partially sighted for most of her life, and we have gone to Walt Disney World many times. If you need any more specific advise for specific attractions or anything like that, feel free to contact me!

And have a great time!!

 

[Independence1776]

I don't generally like my pictures taken, but the flash does make it worse! And I'm glad there's someone out there who has a similar problem. I actually had someone ask me what light sensitive meant.

Optometrists are not medical doctors. They specialize in 'measuring' the eye and doing screening for problems. They are very good at what they do, but they are not the right kind of doctor to see for this.
Some people are more light sensitive than others, but what you are describing is way off of the range of normal and needs to be evaluated by a medical doctor. Especially as you mention that it has gotten worse.

There should be some type of health care available at your college. There may be a student health department if it's large enough or someplace they can refer you to. And you would be either still under your parents insurance or would have student insurance.
The increased photosensitivity might be caused by something that needs to be taken care of in order to prevent worse things from happening. And waiting a few months might make a difference.
I am speaking not only as a worried mom, but as an RN. Do yourself a favor and get it checked out. At least if you do that, you have something to tell your parents besides "my eyes are sensitive" which they already know and don't believe is as bad as you say.

The optometrist was only one example. I know they're not doctors.

Unfortunately, I go to a tiny private college. There is no health department, only a nurse. They tell you to go off campus if you need to see a doctor- and I don't have a car. As for insurance, I'm not sure they'll pay. I'm a Navy brat, and can only see someone about my eyes once every two years (which wouldn't be until December). The only way I'd be able to see an opthamologist is by going to my regular doctor who will then authorize that appointment. (Given that it's a form of socialized medicine, there's no guarantee I'd be able to get a speedy appointment for either one.) It's also complicated by the fact that I'm graduating in May and will lose insurance coverage if I don't get into grad school. I truly do plan on getting it checked out as soon as possible, but I can't do it right now.


LWQuestie, the reason I use a black cane instead of a white one is that I don't want to break the law. Since I'm not legally blind, I would be if I used one. And my cane is collapsable. Since I only use it outside, I wanted the ease of storage inside. As for people not recognizing the black cane for visual impairment, when I started using it, people kept stopping and asking me if I had gone blind (one accused me of faking and walked off before I could respond). I don't think the color matters so much to some people than as to how I use it and what it looks like than compared to other canes. I'll contact you via PM once I get enough posts to do so.

 

[Independence1776]

Well, I managed to get a doctor's appointment for this afternoon (I'm on spring break right now). He had no idea what is causing my light sensitivity, but he did authorize a consult to an opthamologist. I just don't know when that will happen, probably in May.

My current question: how bright are Le Cellier, Tony's, and 50's Prime Time Cafe? It's been about seven years since my last visit to Disney World (not counting Grad Night), and I can't remember, and plus I've never been to Le Cellier.

 

[SueM in MN]

Well, I managed to get a doctor's appointment for this afternoon (I'm on spring break right now). He had no idea what is causing my light sensitivity, but he did authorize a consult to an opthamologist. I just don't know when that will happen, probably in May.

My current question: how bright are Le Cellier, Tony's, and 50's Prime Time Cafe? It's been about seven years since my last visit to Disney World (not counting Grad Night), and I can't remember, and plus I've never been to Le Cellier.

Tony's has some tables outside, so you want to make sure you don't get one of those. Other than that, it's kind of average. Not really, really light, but not dim either.
It's been a very long time since I've been in the 50s Prime Time Cafe, but I think I remember it being pretty light.

One I know that is dim and quite a bit of fun is the Sci-Fi Drive in. It is themed to be a drive in movie theater at night, so is pretty dark. There is light from the movie screen in front of you, but it's otherwise pretty dim.

This thread might be helpful to you. The person in that thread was asking for restaurants that would be bright because one of their party has low vision. People answered that and also suggested some that would be too dim for someone with low vision. So, between that thread and what people answer here, you might fet some good ideas.

 

[Independence1776]

Thanks for the link. It did help. But those three resturants are the ones we have ADRs for, so no changing them. I just want to be prepared. (I can just imagine the comments I'll get from the people at Prime Time if I end up wearing sunglasses inside! ) Now I'm just curious about counter service, but we're doing those on the fly since my family is going to split up for the most part (my twin and I, and my parents).

 

[Independence1776]

Well, I had my opthomology appointment this morning. There is apparently nothing wrong with my eyes. The doctor wasn't able to give me any advice except to wear sunglasses (which he knew I already do). So, I guess I'm just a medical anomaly.

Now, I just have to convince my parents that I won't trip anyone with my cane while we're at Disney (if my sunglasses don't arrive in time). They think there will be too many people for me to use it. While I agree that it will be crowded, with the rolling ball tip, I can hold it so it's practically vertical, and thus still warn me about stuff and warn others that I have a problem. I'll also use sighted guide as needed. (I'm going to order my fitover sunglasses tommorow, so here's hoping they'll get here before we leave on June 1.)

So, any further advice for me before we leave?

 

[FSUDisneyGirl]

hey independence!

just wanted to say that i'm sure you'll have a great time at disney! i understand how it can be when things are too bright. for me it's not as severe, but there are times when i walk outside and want to close my eyes because the sun just hurts. i wear sunglasses all the time...my boyfriend makes fun of me and says my eyes hurt because i'm so used to sungalsses, when i take them off everything just seems brighter! but this started before i began wearing sunglasses.

i also feel like, if i don't have glasses on all the time, that i have to squint soooo much! here's a question- are your eyes a light color? mine are a light blue-green, and some people have told me that i'm probably light sensitive b/c my eyes are a light color.

sorry that wasn't much help...just wanted to say that i sort of know how you feel! good luck with the sunglasses...and i'm sure you'll have a great time at disney!!

 

[Independence1776]

My parents say the same thing as your boyfriend. I read that about light-colored eyes as well, but mine are brown!

As for the sunglasses, the pair I ordered last week were too big and too light, so I have a new pair arriving tommorow. (The worse ones are fine for driving, but not for walking around because of how big they are.) Here's hoping the new ones work better!

And I will have a good time!