About

Two years ago I found out that I have RP and that I was already legally blind.  Today I have less than 9 degrees of vision in each eye.  For a while I was sad about it.  I’m still sad about it.  Like every day.  But rather than feel alone about it I decided to create this website and podcast  When I say alone let me be clear,  I am not alone.  I have an amazing wife and super supportive family who have been by my side every step of the way.  But none of them have RP or anything similar and I wanted to reach out to others like me.  People who are going blind…and think it totally sucks.

{ 14 comments… read them below or add one }

Amy December 29, 2010 at 6:14 pm

Hi!
Thanks for creating this podcast! Fun to listen to, and so easy to relate.

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admin December 29, 2010 at 8:01 pm

Thanks so much. I’m really glad you enjoy it.

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Carlos Salva January 13, 2011 at 1:08 pm

Great job guys. I also have RP and totally know where you are coming from. Keep up the great work.

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admin January 13, 2011 at 1:29 pm

Thank you so much. How long have you had RP?

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Carlos Salva January 13, 2011 at 5:04 pm

I’ve had RP all my life but it was confirmed when I was 19. I retained most of my sight up until about 12 years ago. I am 44 years old now and have less than a three degree vision field. I can so totally relate to everything you are going through, its almost like deja-vu.

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Julie McD October 24, 2011 at 5:07 pm

Just found this website and podcast yesterday and am already addicted. I’ve had RP diagnosis for about 6 years but it has only recently gotten to the point where my life is getting really limited. But having these podcasts to hear someone say the very same things that I try to communicate to my husband & friends is such validation for all that I am going thru and running in to–pardon the pun. How refreshing to find info on the day to day struggles and fears. Can’t drive anymore–such a bummer 🙁
Thank u for your insights and stories 🙂

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Julie McD October 25, 2011 at 8:41 pm

Where have you gone? Do not give up this initiative. It is so important!
Others withRP…keep the comments coming. We all need the support.

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David Cleveland November 22, 2011 at 5:33 pm

I just found out about the podcasts. I loved the one about the decision to use a white cane. I have been legally blind since at least 18. I am 41 now and still have some functional vision.

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RobinJ June 1, 2012 at 9:07 pm

I just listened to my first GBS, and I love it. This is GREAT radio. Your information is helpful and informative, your dialogue is challenging and smart, and your relationship is just plan magical. I am so grateful you have chosen to share your story. Please know you are not on your own.

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Josh February 11, 2016 at 3:10 pm

Hi,

I’ve only heard your podcast once on Sampler from Gimlet Media so forgive me if you’ve already heard about or looked into this but I was reading an article from National Geographic about eyes and it featured a bit about a german man named Peter Böhm who has RP and had a surgery to put a chip in his eye that acts as a replacement for photoreceptors in the eye. I think he can now see in black and white. Here is a link to the article (a picture of him and a description is all the way at the bottom):

http://ngm.nationalgeographic.com/2016/02/evolution-of-eyes-text

Below is where it said it in the description where it was photographed. I had a hard time googling to find more information.

ZRENNER LAB, CENTER OF OPHTHALMOLOGY, UNIVERSITY OF TÜBINGEN, GERMANY

Hope this was interesting/useful/or helpfull. Hope you guys are doing well!! I liked listening to your podcast!

Josh

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Mark March 2, 2016 at 2:57 pm

Thank you for your podcast.

I am a 45 year old man who was first diagnosed with “possible RP” 5 years ago. I just discovered your podcast two days ago, and have been binge-listening since. Your stories, your honest and open sharing of so many issues and struggles, has been (forgive the expression) eye opening and helpful.

Your podcasts have made me laugh, made me sad, made me worried, and been assuring. It is comforting to hear you two discuss so many of the issues that have been on my mind.

I particularly appreciated your discussion of the difficulty explaining what you see – or don’t see. One book I read summed up the frustration succinctly – “you don’t see what you don’t see.”

Keep up the podcasts, keep sharing, and keep hope. Good luck in your journey, and thank you for sharing your road map.

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Catherine March 24, 2016 at 1:57 pm

Hi Dustin and Joy, Thank you for doing this podcast. My older brother has RP and was diagnosed as a child. I am 10 years younger than him and am listening to your podcast to have a better understanding of the disease and the emotions and experiences that may go along with it (depending on the person, and situation, I imagine). I could share stories but I don’t want to do so without his permission and since he never talks about it…that could be touchy. I appreciate your willingness to put yourselves out there. Best of luck. Thank you.

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Stephanie April 8, 2016 at 10:11 am

I enjoy listening to your podcast. I really appreciate the honesty from both of you. I heard about your podcast from Sampler. I am not visually impaired but I have taught two students in high school math who are visually impaired. One was blind since birth and the other one lost their sight immediately at the age of 11. So your podcast helps me to be more empathetic. Thanks again and God bless.

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Toby Clark June 8, 2016 at 4:33 am

Hey! Just discovered your podcast yesterday. I am so happy that you put this out there. In the first 4 episodes, I have already heard so much I have related to.

I don’t have RP, but I have a different rare retinal disorder, Occult Macular Dystrophy. They don’t even understand the mechanism of my visual degradation, which is where the “occult” part comes in. They also, like with RP, have no idea how bad it will get or how quickly or slowly I might lose my vision. But the medical experts do think I’m headed toward legal blindness.

I thought I was going crazy for a long time because I had so many tests that did not reveal anything. But finally a neuro-ophthalmologist ordered the right test — a multi-focal ERG, which revealed severe abnormalities in my retinal processing. The practical result of which is a shimmery, static field across the entirety of my vision that started last July and has just gotten worse. Basically things look weird and mirage-y. I can’t really recognize people on the street until they’re about 10 or 15 feet from me. And I can’t really read street signs anymore. And I get after images that remain in my vision along with the static such that if there is too much visual stimulation (i.e. Something bright), then it’s difficult for me to see at all. And it’s all WAY worse in darkness. None of it is correctable by glasses/contacts, and there is no treatment known. Reading is super challenging and gives me severe headaches, which is a bitch since my day job is as an attorney.

Anywho, back to important things — you! I related in your first several podcast to doctors not really knowing what to tell you or really knowing much at all. I’ve been going to Lighthouse to get counseling and training. And they think I should start practicing with a cane, especially because of it being worse in the dark and I almost fell a few times on stairs. Like you at the beginning, it seems totally unnecessary. But the part when you said that you felt more free because you didn’t have to look down as much and worry about falling or what not really struck me. Because I was just noticing this week how much I look down when I walk because I’m afraid to walk off an edge or trip over one. So maybe those bastards are right after all.

Anyway, I’ve been super depressed and trying out some anti-depressants and therapists and getting training at Lighthouse, but it just all really sucks and has taken my life — which was going really damn well — way off course. But I’m trying to struggle on, and listening to your podcast in the last few days when I have been really down has really helped.

Thank you!!!

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