Archive for November, 2009
If you want even more on macular degeneration, I have my old web pages on the site, Vince’s Parallax, namely,
If you’re looking for personal support or more information, I’d like to highlight two sites in particular….
Both sites offer personal support and a wealth of reliable information.
Stem cell research looks like a very promising field for those who have macular degeneration and other retinal conditions. While it gives hope to many, the treatments are not really with us yet, and meanwhile some people in society have big ethical issues, especially with embryonic stem cell research. All I can do here is to try to present varying points of view without bringing in ethical comment either way. There are plenty of blogs and forums where these ethical questions are being discussed.
$16 Million Grant From State Stem Cell Agency To Speed Research Of Stem Cell-Based Treatment For Age-Related Macular Degeneration awarded to Southern California researchers.
Stem Cell News Blog
RSS Feed will keep you in touch with this and similar stories.
Adult cell self-renewal without stem cells? – macrophages from the immune system could provide the key.
Advanced Cell Technology files an IND with the FDA for study using embryonic stem cells to treat SMD – an important story that could lead to treatments.
Experts warn against stem cell tourism – Yahoo!7 News – warning that in some parts of the world, unproven treatments are being offered to the unwary.
People facing blindness may pioneer stem-cell therapy – patients with Stargardt’s Disease may be the first to receive the Advanced Cell Technologies stem cell treatment.
[Video] Progress and Promise in Macular Degeneration – work at the California Institute of Regenerative Medicine (CIRM) on stem cells and other treatments for macular degeneration.
Scientists find safer way to make human stem cells | Health | Reuters – Wisconsin researchers find a way of creating embryonic-like stem cells without exotic genes or viruses.
[Video] StemCells Inc. using Neural Stem Cells for their Neuroprotective Effect – the company, how it got here, plans for treatments for spinal cord, brain and eye, evntually liver disease.
Steve Connor: Huge potential balanced against ethical fears – The Independent – the case of embryonic stem cells.
UCL to accelerate bringing stem cell therapies to clinic – University College London and its co-operation with California Institute of Regenerative Medicine hopes to speed stem cell treatment for macular degeneration.
When is a stem cell really a stem cell? – the process of turning skin cells into stem cells.
Macular degeneration research is a very rich, varied and complex field at present. Some of these articles are fairly accessible, but please remember that most are aimed at academics. However, I hope that everyone can get a flavour of what’s going on.
A COST-EFFECTIVENESS ANALYSIS OF THREE TREATMENTS … [Retina. 2009] – pegaptanib sodium and ranibizumab injections compared with photodynamic therapy (PDT) with verteporfin for the treatment of choroidal neovascularization secondary to age-related macular degeneration.
AAO: Genes Linked to Response in Macular Degeneration – in Meeting Coverage, AAO from MedPage Today – reactions to Lucentis may be linked to genes. Please note that this study is preliminary.
AAO: Photodynamic Therapy No Help in Treating Macular Degeneration – preliminary results indicate that PDT does not avoid the need for injections in wet AMD.
Acucela Data in Dry AMD to be Highlighted at the 8th International Symposium on Ocular Pharmacology and Therapeutics – Phase 2 clinical trials expected soon for dry AMD oral medication known as ACU-4429.
AMD in Japan – My Vision Test – study suggests that the incidence of late age-related macular degeneration is lower among Japanese people than among white people, but higher than among black people.
AMD Patients can benefit from cataract surgery and steroids – Anabolic Steroids Blog – iSteroids . com – at least, some MD patients can benefit, study indicates.
Autologous transplantation of retinal pigment epithelium in age related macular degeneration – PubMed article, so fairly technical.
British surgeons using radiation beams to halt macular degeneration — Engadget – brachyotherapy is a way of targeting low-level radiation at problem cells in the eye. The treatment may be a cheaper, longer-term one than injections for wet macular degeneration.
Causes Of Aging And Degenerative Diseases – oxidative stress.
Digital aberrometry enables high-resolution eye measurements – this is a diagnostic tool that may enable doctors to time treatments more accurately.
Ellex Medical Lasers awarded Government grant for macular degeneration – this could be an early stage treatment for MD, with funding from the government of Victoria, Australia.
Gene therapy improves vision – children and adults with Leber’s congenital amaurosis benefit from gene therapy, which may eventually be applied to other retinal conditions.
Intravitreal steroid for refractory diabetic macular edema – My Vision Test – treatment appears effective for at least 5 years – study.
Long-term high dose vitamin D well tolerated – Life Extension Newsletter – Austin, Tx, study suggests good level of safety for vitamin D treatment.
Louisville’s Potentia Pharmaceuticals sells drug to eye-care giant Alcon | courier-journal.com – drug may treat both dry and wet macular degeneration.
Lucentis therapy for pigment epithelium detachment in AMD – My Vision Test – hopeful research into a little-studied secondary condition to wet AMD. But please also refer to
Lucentis therapy ineffective for pigment epithelial detachment – My Vision Test
Molecular Sunglasses for Macular Degeneration – molecules may be able to rid people of drusen, the rubbish that collects in the eyes in macular degeneration.
New Treatment for Wet Age-Related Macular Degeneration in FDA Clinical Trials « VisiVite.Com – positive results for NeoVista Vidion ANV Therapy, a treatment for wet AMD in Phase 3 Clinical Trials.
New target in war against macular degeneration – FierceBiotech Research – MIT researchers are looking at damaging effects of Vitamin A derivative.
New therapy at TCD for diseases of retina | Vybes.com – researchers at Trinity College, Dublin, Ireland, find new drug delivery system is helpful for combatting neovascularisation, may be helpful in macular degeneration and retinitis pigmentosa.
Novel Funding Mechanism Speeds The Path Of Research – international team approach expected to bring together top stem cell researchers and speed up research. This affects macular degeneration and many other diseases.
Positive phase-1 clinical trial results for ISONEP in AMD – My Vision Test – promising treatmentfor wet AMD.
[PDF] Progress Toward Topical Therapy of AMD – advances in eye-drop treatments.
Some patients with AMD develop elevated pressure within the eye following anti-VEGF medications: Study – subjects of this research had no personal or family history of glaucoma.
Stargardt’s Disease and Vitamin A – a cautionary note.
Study finds lack of VEGF can cause defects similar to dry macular degeneration – Science Centric | News – researchers hope that this will help to clarify the causes of macular degeneration.
UGR researchers provide early diagnosis of ARMD and keratitis – researchers at the University of Granada used two optical instruments to measure the optical quality of subjects’ eyes, found early warnings of eye conditions.
Charles Bonnet Syndrome is a condition where people with sight loss see visual hallucinations, in other words, objects or scenes that they know are not there. Typically, the person experiencing this is an older person with macular degeneration, though as we find in the links below, that isn’t necessarily so.
Charles Bonnet Syndrome – Macula Vision Research Foundation – this is the condition where someone who is otherwise normal with sight loss sees hallucinations.
Health Talk: Charles Bonnet Syndrome – The Tartan Online – useful background on this condition where people with macular degeneration can experience visual hallucinations.
TBI-vision loss impacts vets; low-vision patients may have hallucinations | Science Codex – you don’t have to have age-related macular degeneration to experience Charles Bonnet Syndrome. Reports here suggest that young veterans with eye damage can get it too.
This is the first of a series of 4 blog entries o on macular degeneration. These are maybe the most accessible stories that have been coming my way, as they affect you and me dealing every day with this condition.
About Macular Degeneration – wide variety of background information.
Alternative Treatments for Age-Related Macular Degeneration | Alternative Medicine Blog by AHIMA – some of the information here seems completely at odds with recent research (note naive assumptions about how relaxing the blue of the ocean is). I include it to try to be fair to different viewpoints, but….
Approaches to Select Best Colors for your Sun Glasses – the short answer is yellow or brown, not too dark.
Bristol artist Hank Adlam sight back | Bristol news – Hank Adlam has had wet macular degeneration, but following Lucentis treatment he has a new exhibition of paintings, this December in Bristol.
British Columbia eye drug policy seen as controversial – Lucentis is approved but Avastin is apparently used.
Chelation Therapy for Macular Degeneration – by Dr. Edward Kondrot – according to this article, this alternative therapy drives various excess minerals from the body and may be helpful in many conditions, MD included.
Color perception and macular degeneration by Dan Roberts, mdsupport.org
Disability News | PatriciaEBauer.com » News Archive » Woman fights to use adaptive technology during bar exam – Stephanie Enyart has a form of macular degeneration, and is fighting for the right to use assistive technology for her bar exam.
[Video] DrCobiEyesight.mov – short TV clip promoting supplements.
Eccentric Viewing Helps Macular Degeneration from Vision World Wide, Inc. – use the best bits of your sight to see better.
Fluorescein Angiography – A Test for Macular Degeneration – what you can expect.
[Video] HealthFirst-Glasses when surgery isn’t an option – illuminated glasses for low vision.
Herbal remedies need real scrutiny – CNN.com – remedies shouldn’t be excused regulation says conservative-leaning doctor David Frum.
International Video Contest on Topic of Age-Related Macular Degeneration | ScanGrants™ – entries in by end Feb 2010.
[Audio] Kiss Your Life Hello – Dr Michael Samuels, retinal specialist and author of
Macular Degeneration: A Complete Guide for Patients and Their Families, talks about macular degeneration and related matters.
Direct link to mp3 audio
Kiss Your Life Hello Podcast Feed
[Video] Living with macular degeneration – short video about dealing with MD using visual aids.
[Video] Living Well with Macular Degeneration – dealing with sight loss and the depression that may result.
Looks Like….Smells Like….But it is Not Macular Degeneration | A Retina Eye Blog – several eye conditions share symptoms with macular degeneration but are not macular degeneration.
A Retinal Blog
Lycopene – A Colorful Carotenoid – Biotta – Purely Organic – may lessen the risk of many conditions, including macular degeneration.
Macular Degeneration – A threat to your retirement plans « Myhealth Guardian – useful general account of macular degeneration.
Macular Degeneration Forum, Macular Degeneration News – no registration required.
Macular Degenerative Disease, Macular Disease, Macular Degeneration Symptoms – background information, forum, helpful technology.
MDJunction ARMD Support Forums – a friendly, supportive community for folks with MD.
New vitamin pill against blindness – Herald Scotland – this is our old friend Lutein.
NHS Evidence – eyes and vision news feed – stories from the UK health service.
Pioneer’s vision gives hope to eye patients – Yorkshire Evening Post – Yorkshire Eye Hospital is about to offer Lipshitz Macular Implant, a telescope-like lens inserted into the eye.
QLT to pay $20-million to settle suit – reportonbusiness.com: globeinvestor.com – dispute centres around royalties on Visudyne, a macular degeneration drug treatment.
RetinaEyeDoctor.com | A Retina Eye Blog – a site mainly about macular degeneration and diabetic retinopathy
Sensory Impairment in Older Adults: Part 2: Vision Loss from NursingCenter.com
Taking Lutein For Macular Degeneration – Preliminary Studies Are Promising | Anti-Aging Guide – but zeaxanthin is also included in many antioxidant formulas to potentiate the lutein. Possible to measure antioxidant levels and recommend supplements with greater accuracy.
Thats Health: See the benefits of a healthy lifestyle – good and bad choices can make a big difference to your eyes.
The artist’s vision: Sylvania ophthalmologist studies how painters’ vision problems affect their work – Monet, Degas and Van Gogh showed evidence of failing vision in their work. An ophthalmologist looks at artists and vision.
[Video] Topical Therapy for the Treatment of Neovascular age-related Macular Degeneration – an eye-drop treatment, Pazopanib, developed by GSK. Also relevant,
A Study To Evaluate The Safety, Tolerability And Pk Of Pazopanib Eye Drops In Healthy Adult And Elderly Subjects. – Full Text View – ClinicalTrials.gov
Unblinded With Science: Technology to Restore Vision – chip technology could help those who have macular degeneration and retinitis pigmentosa.
Vision Is Linked to the Mental – different kinds of vision loss have different mental effects, study of Mexican Americans suggests.
Would taking 91 milligrams aspirin daily cause the macula to bleed more? – American Health Assistance Foundation.
Zeaxanthin – What You Need to Know About This Important Nutrient and Your Sight – this isn’t to suggest that it’s the only important nutrient.
The next 4 entries in this blog will contain links to recent stories about macular disease. So many items have come through that I will be dividing them into 4 sections, each as a separate entry.
The subject matter of these will be…
- Charles Bonnet Syndrome, the condition where people with sight loss experience visual hallucinations
- Living with Macular Degeneration, including currently available treatments, supplements, techniques for getting through your day
- Research – including treatments that are not yet available generally to the public
- Stem Cells – this subject is so prominent, it really had to be in its own blog entry. While some sorts of stem cell research worry some people ethically, they will be with us as viable treatments sooner or later. I have included material that explores different points of view.
<pOn, then, with something of a macular degeneration bonanza!
Nystagmus is an eye condition where the eyes move involuntarily, in other words, the movement is beyond the person’s control. Often, a movement will go one way, and then the eyes will spring back in another direction. However, there are many variants, and the condition can be found around the time of birth (infantile) or can be acquired later in life because of some other set of circumstances, e.g., an accident or some kind of disease. Nystagmus is not a disease in itself, but is usually associated with something else.
Nystagmus is not as rare as all that, but awareness of it is sadly lacking, even among people who have it, doctors and the general public. The more people blog about it, form networds around it and get it into the open, the better, I feel.
Here are a few useful links, and there are many more on my web page,
Vince’s Parallax: Nystagmus.
Rest assured that this subject will crop up here quite often.
Achromatopsia Network – for anyone affected by a chromatopsia, which is a colour deficiency state often associated with nystagmus.
Albinism Fellowship UK and Ireland – albinism is a condition where nystagmus is often an element.
Are DUI Field Sobriety Tests Designed for Failure? – drunken drivers cause more references to nystagmus than almost anything. But how accurate are the tests where it’s mentioned?
Nystagmus – A Little Known Yet Surprisingly Common Eye Condition – useful background.
Nystagmus Network – massively useful UK-based site with information, latest research and discussions.
The Shifty Eyes Blog – living with nystagmus.
3-D Natural Interfaces Will Control a Wide Range of Gear ‘ From PC’s to TV’s and Much More, Says Canesta CEO – so with all these machines responding to gestures, how will your PC know it’s you who’s waving?
Accessible World Presents – ?Rick HHarman will talk about SendSpace and Mydropbox on November 24th.
HypnosEye Projector and Screen Set – Japan Trend Shop – works especially well with iPhones and Touch, but can be used with other backlit devices. Very portable, not even a power supply.
Are PDFs More Important Than Web Accessibility? « AccessTech News – an example of a website where the web pages could be fully accessible but the content not, as it was contained in inaccessible PDF files.
BrowseAloud – text-to-speech program that may help people with dyslexia and / or mild visual impairments.
Cutting-Edge Invention for Blind and Deaf-Blind Travelers Launched at Chicago Assistive Technology Conference – ClickAndGo Wayfinding Maps have narrative to direct blind and deaf people to where they want to go. They can be received on a mobile phone and saved on a notetaker.
Enhanced Vision Offers 10 Percent Off for the Holidays – Blind Bargains – look out for accesstech seasonal offers from elsewhere, too.
Free PDF Converter – convert many file formats into PDF. Has had good reviews.
Google’s Intent on Fostering Net Access for Disabled – Tonic – so they’re going to do something about Chrome, then are they?
Internet Explorer 9 not coming at PDC | Beyond Binary – CNET News – Despite claims that IE9 will be the best ever browser, we’re not going to get a look at it yet.
Kurzweil partners for new e-reading software – The Assistive Technology Blog – free software for computer and mobile devices will facilitate buying and reading e-books.
Multilingual Braille Output For Snow Leopard | ATMac – change from English-only Braille.
Narrative TV Network Offers Visually Impaired Programming – unobtrusive description track is added to movies and TV.
NTN web site
On Web Typography – A List Apart – with many more fonts soon available for the Web, what will actually work and be legible?
Possible Free Web Space for Your Own Blindness-Related Website – Blind Bargains – got an idea for a cool web site on a blind topic? Why not get in touch with these guys?
reCAPTCHA: Stop Spam, Read Books – the audio alternative to CAPTCHAs, and more.
Screen Reader User Survey Results – WebAIM – WebAIM has now conducted two screen reader surveys. These are results from the second one.
Tables « PDF Accessibility Documentation – it may be hard work, but proper tables in PDFs aid a great deal in accessibility.
Thanksgiving Tech: Demy Recipe Reader » ZiggyTek » Blog – a digital recipe box that can sync with your computer. The font can be adjusted but there isn’t apparently any speech or Braille.
The Monomouse – useful for people who want a simple magnifier, but be sure to order the right model (different ones for TV and PC).
Why Shouldn’t the Blind Drive? | Business Wire | Find Articles at BNET – Virginia Tech Students are working on just that.
This is more about leisure travel – getting a break, holiday, vacation, rather than everyday movility. In recent times, blind people have started to demand, and get, a rather more exciting style of break than they once did. If you have dreams of somewhere you really want to go in the world, I hope this will get you started.
Opportunities are still limited for adventurous travel if you rely on anyone else to provide, so now is a good time to book up before all next year’s places are taken.
3H Fund (Holidays for Disabled People)
subsidised group holidays and respite breaks in UK and Majorca.
Access Travel – Holidays for Disabled People – UK based. Site menus don’t work with screen reader!
Access Travel (Lancs), Ltd – holidays especially for wheelchair users. Based in northern England.
Action for Blind People holidays – UK hotels.
BBC NEWS | World | Europe | Blind woman tackles rail giant – woman holds out for right to travel on French Railways with guide dog.
BBC NEWS | England | Humber | Braille bus signs to be replaced – poorly made Braille signs to be replaced.
Bendrigg Trust – activity holidays for disabled people near Lamncaster, UK. Caters for groups of disabled people and mixed ability groups.
Blind (search results)- on TravelPod, a free travel blog site.
Blind Adventurer aims to complete the Pacific Crest Trail at Gregory Goes There – Trevor Thomas was a keen outdoorsman before he lost his sight. And he still is.
Blind Solo Traveler: A sense of the world | Solo Traveler – James Holman, 19th century blind taveller, mapper of the Australian outback and tamer of elephants…….
Bruce Trust – UK canal holidays for disabled people.
Calvert Trust – Activity breaks for people with disability – several centres in rural England.
Camping and Caravanning Club – Camping for all – Disabled Facilities – camping in the UK and elsewhere.
Disabled Holidays by Enable Holidays – UK based, overseas holidays for disabled people and those with limited mobility, their families and friends
Disabled travelers have disposable incomes – MICE News – etravelblackboard.com – including comments from Amar Latif, founder of TravelEyes (link below)
Donna Jodhan: Can Blind People Travel? – of course they can, and Donna comments on air travel in Canada.
Free Hadley Course for Blind Travelers: Online Seminar Offers Low-Vision Travel Planning Techniques and Tips | Suite101.com – this was in June 2009, but could it be run again?
Holiben Holidays Apartment at Roig, Costa Blanca for disabled and non-disabled people.
[Video] Leading the Way Promo 2008 – blind and sighted young people exploring the world together.
Media dis&dat: Blind ornithologist in India wants to create digitized bird-call directory – Arup Chakraborty is a blind Indian ornithologist who treks through the mountains recording the birds.
Minds Eye Travel – travel for the visually impaired – trips in the USA and Europe.
Prayer to St. Raphael – I only include this because St. Raphael is the patron saint of travel and has been involved in curing blindness.
Traveleyes – UK-based, tours world-wide for sighted and visually impaired people (sighted people pay less, but may be asked to act as guides at times). You don’t have to be a UK resident to book a trip!
Question: you’re slowly going blind. Where do you go / what do you see while you still can? : travel with some interesting answers from readers.
TFA – Tourism For All – UK charity that aims to make tourism welcoming for people with disabilities.
Vitalise Holidays Overview – Visually Impaired Holidays – Vitalise – holidays (vacations) in the UK and world-wide with sighted guides.
As mobile phones or cellphones seem set fair to replace the desktop computer in many people’s lives, I take a broad swipe at the subject. As the last person on earth to possess a mobile phone, even I am looking at them now. The combination of speech, braille, and cameras with attendant apps such as OCR and colour recognition is truly mind-bending! It’s taken the industry over 20 years to bother making phones that people like us can use, but now that they’re doing it, it’s all well and good.
Accessible Model / Technical Tips /Mobile Technology – the handheld choice – several useful UK links for accessible phones.
BBC NEWS | Science/Nature | Blind ‘see with sound’ – the combination of a camera phone and software called the vOICe can translate images into complex sounds. More info on the software, including downloads, at
blind-mobile : Blind Mobile Phone or Device Users – Yahoo! Group
Blind Phone Mailing List – stay up to date with hardware and software releases. Not a discussion list.
CodeFactory makers of Mobile Magnifier and screen readers for Windows Mobile, Symbian60 and Blackberry. Accessibility for mobile phones and PDAs.
LG Telecom donates 2000 Braille Phones to blinds « Lg « All New Stuff – LG donate phones that convert to speech and braille for World Braille Day.
MAGNIFICO PLUS GPS MAGNIFIER can be used to magnify many mobile devices.
Mobile Accessibility: Mobile Magnifier vs ZOOMS – CodeFactory and Nuance products go head to head.
Mobile phone accessibility – ways of researching the topic.
Mobile phone Sat Nav to help blind – Mad4 Mobile Phones – italian company Il Village are developing this application for Symbian phones.
Il Village web site
Mobile phone that recognises objects will aid the blind | Mail Online – an application called SeeScan can recognise objects by using the phone’s camera and use its speech to tell you what it is.
MOBILE PHONES MAKE YOU BLIND – mirror.co.uk – alarming reports from Israel and Sweden that prolonged use of mobile phones could cause cataracts.
Nokia in 2015 – The Way We Live Next – in which we learn that when that nice policeman pulls a driver over, the driver can say they’re only listening to the news on their mobile.
Nuance TALKS – screen reader for Symbian mobile phones There are lists here of compatible phones and dealers..
O2 Accessibility – UK mobile services provider explains services.
Orator Screen Reader for Blackberry – HumanWare USA
2007 mailing list entry shows the makers’ commitment to making the Blackberry accessible.
Rammland – Mobile Accessibility 2 for Symbian operating system phones. Has a speech synthesiser and its own menu system.
Rammland – Mobile Magnifier – UK supplier of this software for several Nokia phones, the Panasonic X700 and the Siemens SX1.
Samsung Launches Open Mobile Platform | bada – the Bada operating platform opens up opportunities for developers.
Bada official site. Also visit
RSS For Gadgets » Samsung bada to compete against Android and Symbian
Sense | Equipment and accessibility | Mobile phones – UK deaf-blind organisation.
The Indian Braille mobile for the blind | // Pocket Picks // – low-tech phone for all gets Braille makeover.
The MEX Mobile User Experience Awards – BSR Blind Phone – a phone designed to be affordable and speicifically aimed at people with limited vision. Also visit
BSR Blind Phone on St Dunstan’s getting involved in testing the phone.
top gadget for 2009 « HotTech2.com – guess what, it’s the Apple iPhone 3Gs. I’m sure I’ve heard of it.
Universal Cellular Phone by Seon-Keun Par » Yanko Design – a Braille phone.