I have joined The 21st Floor skeptical news site as a columnist. I am proud to be included in this very cool new project with a bunch of really terrific people. This is also the first time I've had the opportunity to participate in a site not specific to disability which will be fun.
My focus at 21st Floor will be covering alternative medicine frauds perpetrated on people with disabilities and those with diseases that are likely fatal. We also hope to create something of an online community where victims of alt-med scams can find and support each other.
In my debut article on 21st Floor,
The Incurable Gonz Blinko
Google This is a link to a website on the World
,, I introduce a couple who I renamed as Nancy and Sid. Nancy found m www.hofstader.com web site and wrote to me asking about acupuncture and retinitis pigmentosa. Sid has RP and is losing his vision fast. Sid found a group here in the US that is offering RP cures for $3000 for 30 acupuncture sessions over ten days.
There is no cure for retinitis pigmentosa. As I wrote in my 21st Floor piece, anyone with a cure for RP and similar retinal disorders using any modality (alternative, mainstream, something entirely new) would be able to make billions overnight. If a cure existed, we would know about it.
Nancy also asked a number of questions regarding access technology and other issues that her husband will need to face in the near term future. As I promised on 21st Floor, the following is my entire email response to Nancy's inquiries with a bit redacted to maintain privacy:
Hi Nancy,
Thanks for writing. I'll try to do my best to answer your questions regarding your husband.
Regarding acupuncture: I'd be happy to talk/write directly to your guy about how I spent tens of thousands of dollars on it to try to curb and reverse the progression of my RP. Needless to say, it did no good. There have been peer reviewed studies regarding acupuncture for other things and it has never outperformed the placebo which, to me, says there is no evidence that it does anything at all for anything.
If one had a way to cure, improve or reverse RP, whether acupuncture, real medicine, some other alt-med modality, etc. they could patent the process and be a billionaire within months. If the acupuncturist "cures" worked, we'd see lots of people walking around with needles in their pockets wearing Rolex watches and driving Mercedes. Alternative medicine that works is simply called "medicine" and is incorporated into the real systems of care.
I'd be curious to learn who is offering acupuncture for RP in the US. Please send me a pointer to them as I mostly see this in Asia.
Of course, it sounds like your husband is about where I was in my mid-twenties (I'm 51 now). He so desperately wants some hope that even extraordinary and unproven measures are worth trying as the alternative is blindness which is a really hard thing to accept without a fight. He, as I did, may reject concepts of science and evidence based medicine as they offer no hope and false hope feels better emotionally than none at all.
The good thing is that acupuncture is not likely to cause any harm other than to your bank account with one exception: false hope will ultimately turn into real despair. Such profound sadness, the feeling one gets when the last chance fails, is really miserable and often has long lasting PTSD like symptoms. I went through a lot of this myself and have lost a lot of time to depression that, with better guidance, might have been avoidable.
You obviously find yourself in a really tough spot: you can go along with the acupuncture idea and help your husband find the false hope which will feel good for both of you for a while or: you can provide him with the evidence that no one has ever demonstrated acupuncture can work better than a placebo for any malady which will either dash his hopes or cause him a tremendous level of resentment. You surely do not want to find yourselves ten years from now talking about how his vision could have been better if he didn't ignore the possibilities promised by acupuncture but you also do not want to live with the big bills for the service only to learn that it didn't do anything at all.
I'll help any way you think I can. I can present personal experience as well as data so feel free to use me as a resource in your journey.
As for technology:
If your husband can see well enough to read a screen at 2.5X with reverse video, he will want a magnification program that includes speech output. He may also want speech input but that isn't really important to people with vision impairment as no good typists look at the keyboard and most people who use computers a lot can type more clearly than they can speak. I can't see well enough to provide much about current magnification programs but I'll address speech output and a bit about magnification from memory.
I am a major big fan of Macintosh computers and their built-in accessibility. A person with vision impairment can bring home a new Macintosh (any model from the cheapest to the top of the line), plug it in to the power, press the on button and, after booting and such, it will start talking aloud. The user can listen to what the computer tells her to do and follow the instructions all of the way through until they have a fully working system. Macintosh includes the VoiceOver speech output program and Zoom, a built-in magnification program with reverse video and other visual effects. If I remember correctly, A Macintosh starts at about $700 for a Mini, is about $1200 for a killer laptop and desktops run an array of prices. If your husband prefers a desktop, a Macintosh iMac with a really big screen might be ideal for around $1100. Remember, Macintosh comes with screen reader and magnifier built-in so you save many hundreds of dollars on software buy choosing them over Windows.
Also, any Macintosh running Apple's OSX operating system, basically, any Macintosh sold in the past six years or so, comes complete with the VoiceOver screen reader, the Zoom magnifier and all so you can get and enjoy a used one at a much better price than the Apple store if you are so inclined.
On Windows, there is a built-in magnifier but, by default, no screen reader. Windows does have built-in speech input in Vista and W7. There are a number of screen readers available for Windows. The top of the line and the one I worked on for six years is JAWS from Freedom Scientific (www.freedomscientific.com). JAWS is a really high end power tool but is really expensive (about $900 for the personal version) and it requires that you buy the computer separately. There is a program called Window-Eyes from GW Micro (www.gwmicro.com) which is about $800 that has its fans. A company called Serotek has a really cool screen reader for under $500 which does the Internet pretty well and is good for general purpose computing but not great if you need real professional software solutions.
There are two no cost solutions for Windows. The Serotek guys have a cloud version of their System Access screen reader that a Windows user can enjoy while online and there is a free and open source screen reader called NVDA (www.satogo.com and www.nvdaproject.com respectively). You can try System Access To Go by launching its web site (www.satogo.com) and following the instructions. It will require you to set up an account and will give you a 30 day trial of some of their other products.
There is a product designed specifically for people with reduced vision for Windows called ZoomText from a company in Vermont called AI^2 (www.aisquared.com). This provides a ton of killer features for people with vision about where your husband is now. It provides all of the magnification features a user would ever need or want and has speech designed for people who can see somewhat - ZT speech is less verbose, less chatty than a screen reader as it assumes that one can see some things. I think ZT is around $600 but, as I haven't looked at it for years, I may be off by some.
If he needs to use a GNU/Linux system, you should go to the Vinux Project (www.vinux.org.uk) and send a set of questions as it is pretty different from the other two and, as it is fairly obscure, I won't go into details here.
As I mention below, it is also quite useful to get your husband involved in any number of online user groups regarding vision impairment and technology. There are tons of these lists populated by people at all levels of experience who can be really helpful both on the technical sides of things as well as on the personal. If you get an idea as to which sort of computational solutions you want to explore, I can send you pointers to lists and such that might be helpful.
A quick note on synthetic speech: voices that sound really "human" are nice but tend to get garbled when sped up. Listening to the more robotic voices takes a little practice but one can then crank it up really fast and be far more productive. If I had to listen to my email at conversational speeds, I would go nuts.
On speech recognition/input: People who type well really don't need this and many of us don't want it either. If you guys like it, you can buy Dragon Dictate from Nuance for about $100 for either PC and Macintosh. As I said above, Windows Vista and 7 have speech reco built in so you should try this before buying something. It is rumored that Macintosh will have speech recognition built-in soon but Apple is pathologically secretive and rumors rarely mean much.
The other major piece of technology that all people with vision impairment should own is an iPhone. I just got the 4S but had been using a 3GS for two and a half years before that. For people with vision impairment, it is the coolest device ever. He can add a blue tooth keyboard and refreshable braille display if he wishes. There are what I call "blind-guy-ghetto" products designed specifically for this community that are absurdly expensive (look at the Freedom Scientific PAC Mate or the VoiceNote from Humanware) and the do less well than the iPhone.
The iPhone does so much that I enjoy that I can hardly remember life before it. Your husband can get GPS pedestrian directions, he can photo a menu at a restaurant and have VoiceOver read it back to him, he can zoom all sorts of things and there are zounds of useful things for under $3 that a blind person will enjoy.
So, 30 acupuncture sessions will cost a few grand; for $3000, a person with vision impairment can get: 1 MacBook Air (the coolest laptop ever), a killer two sided scanner and OCR software, an iPhone 4S and a BookPort (ghetto but excellent digital book reader) and have $1000 or so left over for a vacation.
Please do stay in touch. Also, feel free to write or call (m: ###-###-####) anytime you like. I've made most of my living doing access technology for people with vision impairment for more than 15 years and really know the subject matter pretty well. Above, I talked about screen readers, magnification and a little speech-reco as they are "primary access technology," effectively, the things one cannot do without. There are lots of other really helpful bits of technology for both general purpose computers and smart phones that many people with vision impairment enjoy daily. Most notably, you will certainly want a scanner and OCR program, a digital book reader that works well with the free digital collection at the Library of Congress with is available at no cost to people with proof of vision impairment (www.loc.gov/nls & http://nlsbard.loc.gov), an AppleTV set top box for your television, a bunch of cool audio only games (Papa Sangre for iPhone/iPad really rocks but there are dozens more at www.audiogames.com), etc.
Lastly, one of the biggest problems with degenerative eye disorders like RP is that one's vision starts getting really bad after their school years are behind them. Thus, they see less and less every year but have no "system" into which they are plugged. People with congenital vision impairments grow up with special education experts in vision issues teaching them how to use the tools available to them; veterans and others who are blinded suddenly are in hospitals which often have social workers who will get them into a program for things like mobility and technology. People who gradually degenerate, though, are never told where to go for help. I don't know where you are located but I would assume that there is an organization called Lighthouse near you where you should get your husband enrolled. A lighthouse will have technology specialists/trainers, provide mobility instruction and offer lots of other learning opportunities that he may find interesting. The Lighthouse organization has chapters all over the world and they are somewhat independent of each other but their international headquarters web site is: http://www.lighthouse.org.
Happy Hacking,
cdh