Following are visitors' questions and comments, with responses from Joel and Michael. The most recent comments go on top. Scroll down to read older comments.

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'questions & comments'.

Saturday, September 7. 2002 14:26:18

Thank you for sharing with others some glimpses into your visually challenged world. I have a son with RP. He was diagnosed at age 4 and has now just started his first year of college. There are probably some disadvantages to his having been diagnosed at such a young age. For instance, I know I have been overly protective of him and probably prevented him from experiencing some things. On the other hand, he has pretty much always known that his eyes see things differently from the way others do. I just e-mailed him about this website so that he can share it with others at his college. Perhaps it will enable them to understand our son better and for him to feel less isolated as an individual with RP. I still hold out hope that some of the cutting edge research being done on retinal diseases will one day find a way to treat RP and restore functional vision.

--Stella

Wednesday, September 4, 2002 12:47:06

Dear Joel and Michael,
My name is Chris Santangelo and I am an actor living in NYC. I'm currently working on a play "Butterflies Are Free" and my character, Don Baker, has been blind from birth. I've been researching as much as I can, volunteering at the Lighthouse for the Blind in NYC. In order for me to portray this young man truthfully, he also happens to be a guitar player, there are many questions that I have with regards to the different ways that visual impaired people do everyday things, such as maneuver around their apartment, prepare meals, pour liquid into glasses, smoke cigarettes(only because the play calls for it), etc. The more information i get the more I can find my own way into the reality of the play. Can you answer any of these questions for me or are there other sites that might be able to assist me. I'd greatly appreciate any help you can give me. I hope I've been clear and respectful to you.

-- Chris Santangelo

Tuesday, September 3, 2002, 14:32:00

I have been living with RP for most of my life. But, of course, for most of my life I didn't know why I had trouble running through the forest at night when I was at summer camp, why I couldn't catch a baseball as well as other kids, why I couldn't play basketball, hockey, soccer, or football at all because I couldn't see my teammates or the opposition around me. I just knew I couldn't see very well. When I was in my early 20s I was officially diagnosed. I didn't get it at the time because I felt I could still see as well as everyone else. I went on with my life and ignored the signs until about three years ago when I went to the eye doctor for new contact lenses and he rediagnosed me. I was angry that he felt it was his duty to reminded me about this "eye problem" I had forgotten about. Apparently it had worsened and he wanted me to undergo the visual field tests. That's when it hit the fan. The results were a greater loss than I had thought, and one of several doctors I saw even diagnosed me as "legally blind" which, it turns out, is a nice, convenient term most applicable to homeowners who are looking for tax breaks, not a medical term. So, I continue on with my "blind stripe" as I call it. I have central vision, I have extreme peripheral vision (somewhat muddied), and a band of black that falls inbetween. Kind of annoying when walking through a crowd filled with small children, or a hallway with a cat lying on the floor. (Although, it's probably more annoying to the cat who gets the tip of my shoe driven into its side by accident!) I have countless small wounds on my shins, calves and knees from the corners of tables, I have a scar on my forehead from a kitchen cabinet door left open, I stopped counting how many times I bent over to pick something up and forgot that there was a table, or shelf, or even a radiator between me and the item I dropped, and I have occasional bruising on my shoulders from bumping back and forth inside door frames like a pin ball. Sometimes I look like I've been playing rugby with men the size of Mack trucks. At least I know now that it's not because I'm a klutz. I can tell people that I have RP, and that's why I ran into them and spilled their drink. If you don't have RP, you'd be surprised how many times that statement has diffused a tense situation between myself and a 250-pound ham-fisted man-child in a bar. Anyway, my greatest fear is that, as a photographer, writer and amateur guitar player much like Joel, I will lose the only thing that was ever important to me, the only thing I was ever good at: creative expression. Have you ever seen the work of a blind photographer? I haven't, and I suspect there's a reason for that. However, it does help me very much to see that Joel didn't give up writing. I think that if I couldn't write, I would have no choice but to drop out of society and live in the mountains in a run-down cabin and eat whatever berries happen to fall at my doorstep. Thank you, Joel, for choosing to share this with others who may feel alone in the dark.

-- Dave Adams

Tuesday, September 3, 2002, 18:45:32

Comment: My Dad has this eye disease, but also has no peripheral vision. He is 76 years old and no longer drives. How can I make his navigating easier or what tools can I buy to aid him? I wish I could see what he sees ( or doesn't). Thank you!

-- Judy Collins

Monday, August 26, 2002, 11:40:46

one of my best friends has rp. i try to make it a point of taking him places he might want to see, while he still can. i read menus for him, and try to watch out for him so that he doesn't run into people, fall, or that sort of thing. i worry about doing too much, though, and making him feel embarrassed or self-concious. i know that you cannot speak for him, but i would appreciate any insight you might be able to give me as to how the person with rp might feel. when we're walking in someplace dark, i put my hand on his shoulder and also give him verbal direction. he's my friend, and i want to help him, but i also don't want to make him feel like an invalid. thanks, and good luck to you. thanks for your time, and for opening my eyes with your sit.

-- jj2aday

Wednesday, 14 August, 2002 11:42:10

Joel & Michael,
Hello, one hundred thank you's for this invaluable website! My 43 year old husband also has RP as does his brother and several cousins and his 7 year old nephew is showing signs of it. Your story and visual aid of vision loss over time in a person with RP really helped me understand what my husband is "seeing". He has tried to explain so many times but my actually being able to see visuals of it helps me to understand even better. Your life story and my husband's are so very much a like....He like you procrastinated giving up his drivers license until he absolutely HAD to and it was truly a sad day for him and me. That was almost a year ago now. He was officially declared legally blind in Jan. 02 but insists on staying in the work force for as long as he can, which many people find quite commendable as do I. His company has been trying to force Mike out for the last 8 months stating "Safety issues" as their main concern. Mike called the Assoc. for the Blind one day to inqu! ire about his rights and they stepped right in and went to bat for him. They assigned him a representative who in turn went into his company and informed them of the laws and the company is working now to conform to those laws. They've painted white lines around his work area, installed lights where needed and allows Mike to be trained on company time, with a mobility instructor, in using a cane. And please don't think for one minute that this was at all easy on him....he for years and years tried to "hide" his disability but now that its finally out in the open with his employer, he feels like a big weight has been taken off of his shoulders. He is just starting to become more comfortable using and being seen with a cane at his workplace (after 2 months) but is slower at using it around immediate family members....but I know he eventually will but at his own pace, which I respect. And I have to be painfully honest myself and admit that I feel "weird" being with him when h! e is using his cane as its a big adjustment for myself as well as him; we are in this together, and I know together we will make it and he appreciates my being able to express my feelings so we can work things out together. I don't know how many years he has left before he won't be able to make out any shape or form but I am praying every day that a cure will be found and I really have hope with the stem cell research and keep trying to instill that in him for someday there will be a cure, especially the way the reseachers are working their hearts out. I apologize that this is so long, but again I thank you and I will make sure that my husband see's this site as well. He should find some comfort in hearing about another person that shares his disability. Good luck Joel and if I may could I keep you abreast of my husband's progress with his work adjustments and home adjustments? I would also like you to keep sharing yours. Thank you again.

-- Connie

Sunday, August 11, 2002 at 23:19:03

Hi Joel,
I am writing in regards to my son who is twelve years old. He was diagnosed with RP about a year ago. I wanted to know if you had any advice for me to help him through the challenges he will face or if there is any thing I should do with him now while he still has pretty good site. Here is a little background about him. He favorite hobbies are skate boarding, drawing, playing on the computer and listening to music. He is a black belt in karate and a very good student. Over the past he has lost an interest in reading, he says that it just takes to long and it is boring reading so slow. School friendships are hard because the kids all play sports at recess and lunch and ball sports are just to challenging. We were at a beach party this weekend and all the kids struck up a game of football. He felt bad about not being able to participate. He stomped off by himself thinking nobody liked him. Orientation has been also a challange, particularly at night. My! current philosphy has been to try and build is self esteem and give him lots of love so that he will face the challenges that await him. I would appreciate any advice you might have for me. Thanks.

-- Sue

Joel replies:

Dear Sue,
I was very touched by your message. Sorry that you've had to wait for my reply, but it unfortunately arrived during someone's vacation time, and was forwarded to me immediately on their return. Though I have no children, I think I can easily appreciate your son's frustration and your desire not only to learn all you can about RP, but to help him build a firm emotional and practical foundation for the future,starting day by day. He sounds like an active, spirited youngster and your concern for him is very clear. fortunately, I have one specific suggestion for you that I think will provide not just information but also understanding and support. this is the Internet mailing list forum known as the RP List. It is very active, with hundreds of subscribers who live not only in the United states but in the U.K., Europe, Asia and Latin America. Lest that subscriber count seem daunting, be reassured that not everyone participates every day or all at once. If you subscribe to the RP List,which is free of charge, you will automatically receive messages posted to the list by other members. If you just sit back and read each day's messages for a time, you'll see that there are all kinds of people confronting all degrees of vision loss and helping each other understand and cope with all conceivable challenges. you'll also be kept up to date on the progress of medical and scientific research into the causal factors of RP and the many avenues of research into potential remedies. Most of all, you'll find yourself in a conversation with people from their teens to their senior years, including more than a few parents in your very situation, discussing the same issues that you find facing you today. The tone of the list is warm, supportive and congenial, even when there are disagreements from time to time. It's a great atmosphere. I myself have learned most of what I understand medically, and learned to manage my life with RP, more due to being subscribed to the RP List than to any other source of help or information. I should add that, besides an intelligent, supportive group of people with RP sharing their good and bad times, there are medical and scientific experts subscribed and always ready to contribute reliable knowledge about retinal degeneration. I hope you'll subscribe to this mailing list at least for a while and give it a chance. Here's how you'd do that: Just address an email to listserv@maelstrom.stjohns.edu and, leaving the subject line of your email blank, type only this in the message area: subscribe (your name as you'd like to have it seen when you post a message to the list) rplist --without the parentheses, of course Very quickly, you'll receive a confirming email with additional instructions. Do what these notices say and you'll be subscribed. I thank you for writing to me, and wish you and your boy the very best. He's lucky to have you caring so well for him. Now I think you will find some of the help and new knowledge you need, as well as some well-deserved comfort, if you join the exemplary cyber-community of the RP List.

Regards,
Joel Deutsch

Friday, July 26, 2002 at 22:38:43

Hello...I am writing because somehow through exhaustive internet research I found your site, Joel... I was excited by the depiction of what happened in your eyes. I have been so frustrated trying to explain to my husband what I have been seeing...Mine is about at your 10 year mark....Just trying to explain the "shower curtain" thing didn't work...I felt bad after I showed him your depiction because he cried...he would rather be blind himself than to sit helpless and watch me do it. I have retinal vasculitis...major drugs that have morphed me into someone else..Your story about driving I will have to say made me mad at first becuase I do not want to be dependant...I keep telling myself that as long as I drive in town where I don't have to look at road signs that I am not a danger..after all.. I'm not drunk or senile or distracted...I pay very close attention...This stuff sucks and you have helped me be able to tell my husband that it's not safe anymore..even though! it will be a great burden on him..I would die if I hurt someone due to pride..Hard call..I am much luckier than you in many ways because I have a soul mate that is sufferering more than I am because he can't do anything about it..plus he has to come to the realization that for the rest of his life it will be a major adjustment...he is a guy after all and his detail brain lacks...It's an adjustment to me going blind..for both of us...he thinks he can't tell me that he is angry that suddenly, if someone needs to drive, that he has to do it...if someone needs to walk across the street, he has to help me...he didn't sign up for this, but he thinks he can't tell me that it's just as hard for him as it is for me...After reading your dating story...my comment to Kent was..."see how lucky I am?" God bless you for your eloquent prose and story of courage and hope..Godspeed..

-Tammy

Thursday, July 25, 2002 at 21:57:24

I am so impressed with the exploratorium for including this in their site. Joel, your writing is superb. I am gradually losing sight myself, but as luck would have it so far, only in one eye. Even losing half my sight has been a challenge. I have feared becoming completely blind, but have also known that somehow if it happened I would survive and learn to be happy. Both the facts on adaptive technologies and your beautifully written thoughts are so very appreciated. I have come across a lot of information on the web, but none of it has been in the least bit personal or emotionally engaging. Great job raising awareness! Thanks so much and good luck to you.

-Bobbie Wood

Tuesday, July 23, 2002 at 23:31:07

I'm 47, diagnosed with RP (tunnel vision) at age 30. It sucks but that's life. What are you going to do ? Giving up on driving has easily been the worst part. My last car was a gift to myself, I knew it would be my last. I loved competing in autocross and won many events, that's all gone now. Lest you think I wallow in self pity,don't,I have a beautiful daughter and two grandsons,six and two, that make my life fulfilling. Fully paid retirement eases the effects of the disease as well. I truly believe they will find some kind of actual help for us in our lifetime. I just hope I don't have to go back to work !

- Owen Scott

Tuesday, July 23, 2002 at 13:47:18

Hi, I was given your site by my eye doctor, he felt you and a very clear way to explain what was happening to me as well what would happen. Althought it has taken me a few weeks to look at the site, as I was scared I finally came today. I now have a better understanding, and it scares me to death. I am a 43 year old female who has been been wearing glass since I was in the 5 th grade. My last exam I told the doctor about this burriness that had been happening the sevarl years and was happening more and more. After some test and a second evaluation I was told I have retinitis pigmentosa, and there is not a lot that can be done at this time. I have lost some a lot of my outer vision, (sorry can't spell that word) and burriness comes to me after I have been writing or spend a lot of time reading. I love art and writing I do a lot of art work on my computer as well as take pictures. I am real scared, I have not told any one close to me, as I do not want pitty. But now I feel after ! watching the video I need to tell them as it dose not seem fair for me to build on a new relationship with out letting them know. I know one thing I have not come as far as I have in my life to let this get me... but I need be honset with them and myself so thank you for being here and for the great job you have done expalining this. I will be sharing it with them too.

-bryce

Wednesday, July 17, 2002 at 11:52:09

Hi Joel, I'm writing because my mom has wet macular degeneration. She has only peripheral vision now - the loss began at age 57, and she's now 62. I wanted to ask you if there are websites or other services for the legally blind, and anything you know of that could help her in using a PC? She took up painting a few years ago, and would like to be able to put up a simple website with some of her work. Also, what if anything do you know about Braille? (sp) For some reason, I can't find anything. Maybe I'm spelling it wrong:-) Thanks for any info you might have.

-Tracy Austin

Comment: Great site, great concept, great way of talking about "disability", but when are we gonna see subtitled/ captioned versions of the videos you have in this site? I am Deaf you see.

-Tony Nicholas

Sunday, July 14, 2002 at 05:11:53

I run a Private Daycare and for my summer program of older children. I have chosen that they learn and understand the value of their vision and especially the understanding of children that cannot see. I thank you kindly for the use of this site.

-Kaye

Wednesday, July 3, 2002 at 06:53:39

You had a defining moment that forced your decision to stop driving. I think about my grandmother, an elderly friend of the family, my now-deceased Aunt J.V., all of whom should have stopped driving years ago. Their reflexes are too slow, their vision too impaired. Really, it's not safe. Yet, I try to imagine myself turning in my license, as you had to on that day, never to drive again. I think more than anything it would be the loss of power over myself that I would miss the most. I cannot drive my elderly friends and relatives to their every appointment, run them on their errands, take them to visit their friends, God forbid they should want to just go somewhere to do something useless and fun, like fishing! So, these days, I try to ease my foot off the gas pedal, and cruise along behind that elderly slow driver. Does it really matter if I get home 5 minutes later?

-Jennifer Van Gilder

Sunday, June 30, 2002 at 14:45:01

i feel very sorry for you. I hope that someone out there will find a cure for you.

-darren ngo

Saturday, June 29, 2002 at 14:13:31

i like this because it is very easy to learn and we all like to do these type of things.

-Reth Meas

Tuesday, June 25, 2002 at 21:39:23

Hi Joel. I just wanted to let you know what a most extraordinary teacher you are. You have shared the challenge you have faced in losing your vision and turned your experience into a lesson on how to treasure and savor what we do have. Your friends are lucky to know you. And those who stumble upon your site have discovered a jewel on the Net. I write this in true admiration of a man who sees with his heart and soul.

-Scott Miller

Thursday, June 20, 2002 at 18:59:43

Wonderfully written. I know precisely how you feel and could never ecxpress it as effectively. Thanks for sharing this with us all.

-Byron

Thursday, June 20, 2002 at 21:06:05

There may be help for you eyesight. It is the juice from a fruit grown in the tropics. It has restored sight for people suffering from Iris Idis, macular degeneration, cateracts, etc. It has been used in India for over 4,000 years and by islanders in the Sooth Pacific for over 2,000 years. The highest qualiity is called Tahitian Noni Juice. Go to the website below and the odds are very high you will find at least one (and probably more) testimonials on it helping people and their eyesight. I have other testimonials, information from doctors, scientists and research information on it if you are interested. Since Morinda refunds 100% of your cost if you are not completely satisfied, there is NO finanical risk. Plus they are the FASTEST growing company in the last 20 years with sales in excess of $32,000,000 a month so it must work! http://incc.org/ I wish you the best!

-Neil Reinhardt

A vision researcher replies:

In the last few years, a wide variety of wholesome and therapeutic properties have been attributed to noni juice, made from the fruit of the Morinda citrifolia and marketed by the Morinda company: Noni juice has been claimed to suppress tumor growth, boost the immune system, and have powerful antioxidant properties. Few of these claims have been rigorously tested, however, and the peer-reviewed literature counts fewer than a half dozen papers; these papers document the efficacy of noni juice in suppressing the growth and proliferation of certain tumors. As best I can ascertain, Dr. Reinhardt was not involved in any of these publications, but he has published widely in the popular press.

It is plausible that noni juice may be of some benefit in preventing AMD and other diseases of aging, but it is not clear if and why it might have a beneficial effect on inherited degenerative conditions such as RP. What is clear, though, is that noni juice has a sophisticated publicity machinery promoting it, or it would not have reached close to a half billion dollars in annual sales in about 6 years.

Before adding retinal degeneration patients to the converts, the Morinda company and its PR should invest a substantial portion of their sales volume in high quality research, and demonstrate how their product can benefit these patients.

Gislin Dagnelie, Ph.D.
Associate Professor of Ophthalmology
Lions Vision Research & Rehab Center
Johns Hopkins Univ. Sch. of Medicine

Thursday, June 20, 2002 at 14:06:38

I thought your story was inspirational and touching in every way.. you are an icon to kid around the world. Thank you. Bye

-Shaquita Morrison

Wednesday, June 19, 2002 at 17:48:41

Michael and Joel: My hat is off to both of you! To Michael, for asking so many of the right questions, and to Joel, for being so candid. You have done an amazing job capturing many facets of Joel's life, and especially those that we, the sighted, often wonder about. Moreover, the site looks great, and has good information about this mysterious process called retinal degeneration. If I can make one suggestion, it would be to add some links to organizations that provide more specific information about the genetics and possible treatments, to organizations that provide support to patients and their families, and to organizations that sponsor research to find treatments for these disorders. But most of all, I hope that they will add links to this unique presentation of Joel's world. Thanks so much to both of you!

-Gislin Dagnelie, Ph.D.
Associate Professor of Ophthalmology
Lions Vision Research & Rehab Center
Johns Hopkins Univ. Sch. of Medicine