6 years ago my brother and I found out we were going blind, so we took a trip around the United States of America to see it fully before completely losing our sight. My name is Tod Purvis, I have Choroideremia and I hope to help others find a cure...

If you ever would be interested in checking out a beautiful country such as Sweden! I would love to buy you guys a round of drinks or treat you with some of our best food! Would you be interested in seeing Sweden before it is too "late"? Let me know if you ever plan to travel here. Best of luck to you! I feel empathy for you and your brother!

Thank you very much, and we'll keep you posted!!!

Hey Tod, this is Leo and I'll be testing your ability to use Reddit. Can you respond to this statement?

yes I can

Where was the most beautiful place you visited?

During the trip I'd have to say Devil's Tower in Wyoming

This means something. This is important!

https://www.youtube.com/watch?v=mYCBgSRNjk0

I was really hoping it was going to be that.

Better than Reese's Pieces. And...always wear sunscreen at night.

Looks like I have nothing to look forward to then...

Second most?

Montana. Glacier Park. Go. Now..

I love Glacier! Everyone raves about yellowstone. Glacier is so much prettier.

Been to both. Depends. Glacier during the winter is phenomenal, Yellowstone in the summer is easier to get to, can't go wrong with either.

I live in Montana but I have never been to glacier. My parents went during the summer and they said it was beautiful there. Although I do live in a valley and the mountains around me are still pretty nice. Sorry about your condition and best of luck.

Thanks. No matter what your situation, our message is, live your life to the fullest.

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We are planning a Canadian odyssey longterm -- assuming our vision cooperates! Feel free to provide an itinerary of must-see Canada!

I drove through GNP. I would have to say it was the most beautiful thing I've had the pleasure of seeing.

It was amazing and would love to go back! Our national parks are an unbelievable gift and resource -- take full advantage!!

What was your favorite part of Rhode Island, if you went of course.

We didn't make it to RI on the trip, unfortunately. My wife graduated from Brown back in the day and is hoping to make it back to Providence for her reunion next May -- any suggestions for restaurants?

Dude you need to go to Rio de Janeiro most beautiful urban beach in the world

Sounds amazing, and on the list. Now just gotta make a sequel.

How long is your estimate till you are completely blind?

That's the bad part, there's no way to tell right now, I just have to my eye specialist once a year and they tell me.

There's something painfully ironic about forgetting the word "see" in that comment.

Ironic, yes. But we took the trip to put the memories in our brain where we could always call them up even if we completely lost our sight. There is an amazing scene in the film about a man who is almost totally blind who calls up his memories in order to live a full "visual" life.

Amazing. I meant it as only a playful (but kinda morbid on second thought) joke.

No worries, when you lose your sight, you gain a sense of humor.

A few other questions then:

What is your vision now?

Will you find a way to do another AMA once you are blind so I can ask you what do you see when you are blind?

My vision now is down to 50% now, and yes I will!! If there's a time to lose your sight it's now with all the technological advances.

Maybe you will be able to get your sight back!

That would be amazing!! Just hoping it doesn't get any worse.

Robot eye? Or maybe an eye implant? You can have one of my good eyes if you'd like. I can FedEx it.

Send away, we'll take em!!! But, right now there's always a chance that it would make it worse...

please get a robot eye in the middle of your forehead and replace the bio-eyes with huge rubies!

hmmm down with the robot eye, rubies are way too pricey to use as eyes.

Whats your hope with stem cell retina replacement research?

We're hoping, but honestly it's more for getting the research for the younger guys who have this disease. We met kids in their teens who had worse sight than us and want them to get as much help as they can.

What do you mean by 50%? Your field of view is shrinking, you can't see certain regions, your vision is blurry, your vision is dark... what's... it like?

It's hard to describe nothing. It's not black, it's like if you were looking through a tunnel, and the walls of the tunnel were made of mirrors and it reflected what was at the end of the tunnel

So, a kaleidoscope?

yeah that's actually a good way to describe it.

What city has the best looking people?

HA!! And great username!!! Los Angeles, but you have to remember this was a 40 day road trip, so the longer we were alone together in the cars the prettier everyone else got.

I see you have never been to Scandinavia before.

We have, but a LONG time ago (1980s). Norway, Oslo and Nes, we ate shrimp on the pier, and the sun never went down. Would go again!!

I'm very moved by this. My husband is 26 and has very advanced Retinitis Pigmentosa, quite similar to Choroideremia. We actually took a similar trip last year (we called it his "vision walkabout") in which we drove from Kansas City to several places on the west coast as he wanted to see Sequoia trees and the beach a final time before things go completely dark. It was such an emotional trip, but I'm so grateful we took it.

In your travels, which city did you find to be the most accessible for blind/low vision people?

Cities are tough, but it also depends on your attitude. Big cities with well-established pubic transportation are amazing, DC, NY, SF, Chicago. But don't be afraid to visit some place new, with a friend, who is aware of your husband issues. I walk with my hand on my wife's shoulder to guide me in new places all the time. Anytime you want a tour of LA, let us know.

Is the anything that you really want to see but haven't?

Yes, Alaska, and Antarctica...New Zealand, really everything.... still. Because you can always pull up those pictures in your mind.

Go to New Zealand.

Will do!!!! On the list already

And then Alaska. Trust me.

On the list (next summer)

Also go to Brazil if you can! Its a lovely country

Also completely on the list, Argentina, Chile, Brazil. So many places! Everywhere we go we meet more people that are amazing.

How on earth can you afford this?

Mostly credit cards, which we've been paying off for the last 3 years.

A flight from Seattle to anchorage is about $600 in april...

I would strongly reccomend visiting the third week of July though so you can see all the wild flowers in bloom.

It's really beautiful.

Great, we're are in the process of planning our trip, Thanks!!!

Go to Alaska. Amazing.

On the list

What do you think you miss most once you go blind?

Once you do go blind do you think you could answer the previous question again?

Tough one, and one we address in the film as well. I think I'd miss seeing my wife. And YES I will definitely answer that question again.

Thank you, and when I say this I mean it, thank you.

Our pleasure!!

That answer made me really sad.

Do you have children?

Also, is there any chance you won't go blind?

The research in this area is moving at the speed of light, so there are lots of chances for us and others like us to either stop the progression of the condition or even to improve it. My wife and I don't have children but my brother is about to welcome his first kid in December, and we are all excited about it!!

You said your vision is down to 50%. What does that look like? Is part of what's in your vision eliminated, like as if someone covered half your eye? Is everything there but it's dark? Is everything just really blurry?

It's all on the outside, I would say it's blurry/fuzzy. Honestly there's no such thing as BLACK to a blind person. There's just nothing. It's very hard to describe. One of the best scenes in a film, is in the film BLINDNESS, a children (who's blind in the film) walks into a desk, that the audiences does not see and then it pops into view. That moment is EXACTLY how we see.

The way I've read it described as is telling someone to imagine what they see behind them. You can't see behind you, you see nothing because you don't got eyes back there.

Close, were sunglasses and smeared them with vaseline, and wore them all the time that would be kind of like it.

Would y'all like some audio books?

I don't know what kind of audio books y'all like but I have tons of mostly science fiction and would be more than happy to send you some! Send me a PM if y'all would like. I have good vision but drive a lot and love them.

Would love them. New to Reddit, not sure how to PM, can you PM us?

Do you still have vision now?

If so, do you ever practice being blind so you'll be prepared when it happens?

I do my vision is down to about 50% and yes I do practice. Just in case

How do you "practice" being blind? Just close your eyes and walk around the house counting steps?

Pretty much yeah, not any other way to do it.

you and your brother both got it? Is that mean it is a a hereditary disease? Do you have kids? if not are you planning to have some? If so are you worry that it will pass on to them?

yes it is hereditary, X linked so it is passed on my the mother. I'm not having kids, but my brother is, so yes we do worry about that. But really there are worse things to pass on to your children..

At least if your brother has boys, you'll know that they won't get it though!

Yes his boys won't get it. At worst girls will be carriers.

But really there are worse things to pass on to your children..

I don't mean to offend, but what things are worse? I can't think of very many.

edit: I also don't think that the 'it could be worse' line of reasoning really justifies the decision to bring forth new life...

Genetic predispositions for cancer, diabetes and alzheimer's can be death sentences. Blindness is an enormous challenge, but you can live a full life with it.

I am sure you are an amazing person, but genetic illnesses can stop with you. Just saying.

I know it's the choice I made.

yep and one, but not all of the reasons we're not having children.

I'd prefer diabetes or losing my mind at an old age to blindness by middle age :/ cancer I'm not so sure about...

fair enough...and me too.

Ever take any psychedelics?

Yes and as often as I can... but don't tell our parents. Ever gone into a sensory deprivation tank? DON'T DO BOTH.

That sounds terrifying.

What is choroideremia and how old are the two of you?

CHM (choroidermia) is a genetic condition that causes the decay of a particular part of the eye, leading to degraded peripheral and night vision and at its extreme total loss of sight. I am (Tod, older brother) 43 and Justin is 38.

Sorry to hear about your condition.

You're both affected, but is the deterioration the same for both of you? I would think with your being older that you'd be in worse condition.

usually that's how it works, but Justin, younger brother, sight is a lot worse than mine. But we both still manage, he teach improv/acting in NJ and i edit TV shows in LA.

Once you're fully blind would you be willing to take enough psychadellics that would normally give you visuals and report if you "see" anything and then elaborate in your future AMA?

Hard to know, am I being supplied with them? If they're free, and I'm blind, it's on.

Looked into the sensory deprivation tanks. Found a place where I can do $60 for an hour.

Also is it like a %100 chance you'll lose your sight? If you do go blind you think you'd do the psychedelics again or the sensory deprivation tank? It'd be pretty interesting to compare.

It's not 100%, and yes I would do both again, but not at the same time, ever seen Altered States?

Would take with you. Shit gonna be real when you take and can't see sir.

All yeah, all of it.

What are you and your brother doing to make more manageable as you gradualy loose your sights?
You learning braile, making your homes "blind friendly"?
What are you doing to adjust to the new lifestyles?

We're both using canes, myself not all the time but in crowded areas. Not learning braille but do listen to a lot of audio books. With technology today, screen readers are amazing. That's it so far, but always planning, just in case.

I would definitely suggest learning braille.

There are amazing technologies for sighted people who lose their sight. Braille is amazing resource for people, not sure it's going to be necessary for us if I completely lose my sight.

I totally agree. With screen readers and Voiceover, you would have little to worry about in regards to reading. I just think reading hard copies of things would be helpful too. With that being said, most of my experience is with children in education so I can definitely see your situation being totally different. Best of luck!

Please PM me I can send you a copy of the film and would love to interact with your kids if possible. We have done several charity screenings to raise awareness/funds and many of our friends in education have arranged for screenings in their areas.

Do you think music will change.for you when you go blind? Do you listen to much music now even?

Listen to a ton, and yeah I think it will change. We met this great musicians in New Orleans and talked about music and how it effects you.

What do you see right now? I'm "leagally blind" according to the government but that just means i dont see better than 20/200. I actually see around a -5 (not sure if you speak the optometry langauge yet haha) but i'm not what people consider blind.

HA, there's a lot of numbers and percentages in vision. I'm not considered legally blind yet but maybe soon. Right now I'm at (about) 50% from point. Ours is more related to peripheral vision

When did you start to notice your vision problems? Was it a sudden onset or gradual?

My vision was fine as a kid, I really didn't notice it until my mid 30's where I noticed the losing the outside and the night vision. Justin noticed it much earlier than I.

Since it's the surface sensory cells, I would imagine people in your condition would be prime candidates for visual implants that stimulate the nerves right below the now-degenerated retina. What's the state-of-the-art now for implanted visual grids? Would you opt for a visual implant?

Well they (doctor) think that the part of the retina is "asleep" but they still don't know yet. I don't think I would opt for an implant... yet, but if (I) I got worse, I would at least try one of my eyes... the left.

Why the left?

because I'm right-handed...

Hey, I met you guys in Griffis Sculpture Park! So cool to see that you've gotten so far in your travels. How do you decide which places to check out? I was surprised to see you at such a hidden spot; even most of the locals don't know about it!

Awesome!! We found out from Brian Griffo, Adam Buckley and Ryan Detzel our crew. Send us a PM and we get you a copy of the film. Griffis Park was awesome, hope to get back there to see more of it.

You decided to create an award-winning documentary? Good decision.

It was a labor of love for several years and involved the hard work of a few guys who selflessly donated their time and amazing skills to help us realize our "vision." Hopefully you will see it too and appreciate all it means.

I'm sure you visited many beautiful places an I look forward to seeing the documentary. Can you list 3-5 of the most scenic drives? I'm thinking drives over an hour not locations or hikes but views you can enjoy over a significant amount of time from a car on the road.

MONTANA, MONTANA, MONTANA there's a reason it's called Big Sky Country. Also Idaho is amazing, anyplace you can get off the major highways and onto the smaller ones.

I was shocked when I saw how beautiful Idaho is. It's not even a blip on the radar when talking about Americas beauty.

Yeah it's really amazing. The Spud drive-in theater is a must!!

I've done some back-roads in north Idaho and NW of Bozeman MT, I totally agree.

If you didn't get a chance, I hope you have an opportunity to drive Surrey to Kamloops, British Columbia.

Canada and Alaska are on our vision bucket list, I actually went to the Galapagos Islands in last February, AND IT WAS AMAZING!!!

Ill agree with you there I drove across country when I moved from Washington to Georgia and Montana blew me away I never could describe it but with what they call it, I dont know how it just is so BIG. It was the last beautiful thing I saw before I go to the middle of the US then it was flat and boring.

HA!! Yeah, it's amazing how much driving it takes to get across the country, and we did it without cruise control.

Could you explain why you're going blind?

Your username is the BEST so far!! My brother and I have a rare eye disease called Choroideremia, likes like Retinitis Pigmentosa.. It's starts on the outside of the eye and works its way inward.

In your travels, which area had the highest concentration of roadside attractions? I was recently in the Black Hills, and there were quite a few there.

Rapid City is AMAZING, we actually won best documentary at the Black Hills Film Festival there. I think Texas has the most, at least on our trip. Also Utah.

Have you heard about research with implants that stimulate the brain with neural impulses? So even with total blindness you can see light and shapes.

Edit: I remember learning about this a few years ago, but i don't know if it has advanced any.

Yes heard about that, read about that, but implants don't always work for this disease. It's a very small part of the eye that is effected and not all the "cures" work for this disease. But there is talk that our choroid, a thin layer behind the retina, is just "sleeping" and might be reawakened. So here's for hoping.

What was your favorite place to visit in the U.S.A.?

Tough one, but again the Devil's Tower AND the Grand Canyon

Have you made any plans for new hobbies if you lose 100% of your sight?

And I also snowboard, and that I could still do, even when totally blind, and will continue to do. There's a lot of groups around to help the visually impaired.

New hobbies? No, not yet. But luckily with all the computer programs that are there, we could still do the things we like to do.

Sorry this is a difficult one. Is there anything that you will regret not being able to see?

Well, not yet. But if i can't Antarctica before I go blind... that will make me sad.

What do you think about your future? Like completing school and getting a job? What prospects is there for someone that have that kind of disability?

So far so good, I think that if that was a time to lose your sight it would be now, with all the advance in computing, pretty much" any" job can be done by computer. I actually edit TV shows now.

How does a computer make it easier? Do you think companies will hire you over someone else that might or might not be more efficient since sight is till the sense that you use at most to perform in almost any job. I feel people having disabilities at least here where i live get a real hard time getting a job due to the fact that someone without it will "pay" more for the company. Sad but true; at least here.

If you can get a job that is computer based, there's tons of programs that can help a person with low vision or even blind. A friend of mine, who's blind, runs a company that audio describes films and tv shows.

So you mention loving Wyoming; just out of curiosity what state are you from?

Well, we are from CA, but our Dad was in the military so we've been everywhere, grew up in USA, Germany, England. I live in CA, and Justin lives n New Jersey. Both in USA

Is there one particular sight that sticks with you most often (either at the Devil's Tower or with your wife or...)? You answered the question where the most beautiful place was, but I am curious, what was one of the most beautiful moments you've ever observed? Thanks for doing the AMA, and I wish you all the best on the road ahead.

Just married my wife in July, have to say her beautiful smiling face was the most amazing beautiful sight ever.

As a huge supporter of service animals, do you think a service dog could be part of your future? If so I almost envy you! Feel free to ask me if you have any questions about them as well.

I am a huge supporter of service animals as well, we have a great scene in the film about a service dog. And yes if needed I will get one. We're working on being sponsors for service animals.

Would you ever consider a name change to Pod Turvis? It sounds right to me.

good idea, but I prefer Dop Sivrut.

Even though I'm late to the party, it's now obligatory AMA question time!

Would you rather fight 1 horse-sized duck or 100 duck-sized horses?

100 duck-sized horses because I'm better off fighting little things than big things. Would you rather fight 100 little rats or a big giant rat? I'd rather fight the horde than the monster.

Do you plan on learning braille?

Braille is an amazing resource but for people like us who have been sighted their whole life, the technological resources might be a better option.

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Very gradually, in theory it should peak around a person late 30s, so hopefully it has stopped for me. But there's no absolute rule and that's the worst part

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Thank you so much!!

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Thanks very much!

Have you ever thought about taking a trip across canada?

We want to board Whistler in the next year or so.

Have you or your brother considered enrolling in clinical trials, or have already enrolled in clinical trials for choroideremia?

Clinical trials are underway in England and Canada, it's difficult for American citizens to participate in those trials. My retinal specialist thinks that American trials will start within the next few years.

You sound awesome! Anymore travel plans? Anywhere in the US that wasn't worth your time?

We want to dive in Utah more, and heading back to Louisiana in the spring. AND Alaska in the summer.

You guys sound awesome. Do you plan to stick with touring only the U.S.?

Hopefully Would love to do Driving Blind international (it just played in a Cambodian film festival), and would love to go there.

Where the hell do all you people get the ducats to trip around the country and/or the world? Most people can't even afford to take a few days' vacation to Disneyworld anymore; internal tourism in the US is as dead as the American dream.

EDIT: I mean, it costs me a week's wages to simply drive a couple states over. That's just gasoline. Are you assholes all just rich as fuck, or am I just poor as fuck? Fuck!

We were lucky to have generous people donating money so we could make this trip. And we all ran up our credit cards. The point was to make a film to raise awareness and hopefully funds for research for charity.

Do you smoke weed and what do you think that will be like when you are blind?

Also do you watch sports?

Weed doesn't affect this condition why, you offering? I go to LA Kings game all the time... sorry about the Rangers.