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.

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..


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.


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

Tuesday, July 16, 2002 at 21:12:28

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.


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.


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

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