• Abstract and Figures
• Public Full-text

Retina New Zealand Newsletter November 2011 No 51

Charities Commission Reg No 23240 A Member of Retina International

Important Notice If you are receiving this newsletter in email format please note that the membership renewal form is attached to the email. If you are receiving the newsletter on CD the renewal form will be posted to you in print shortly. Please complete and return to us as soon as possible. If you subscribe to the Retina NZ newsletter from overseas please ignore this notice.

1. From the Editor………………………………………... 2

2. From the President’s Desk…………………………... 3

3. Research: Stem Cell treatments showing promise 4

4. Daily use of Aspirin increases risk of MD……….….. 6

5. Genies in smartphones: meet Siri and Iris….………. 6

6. Retina Youth Summer Issue – Blue Two……………...10

7. Preparing for vision loss: the information void……..13

8. Meet a Member: Trevor Plumbly…………………….....17

9. As Trevor Sees It: Ponsonby Road a minefield…..…18

10. Branch News……………………………………..………19 1. From the Editor During this pathetic excuse for a summer (in the north island at any rate)there have been some cheering developments for the blind. One was that the RNZFB library has gone digital .

Daisy book readers have been distributed to all members. This handy little device allows us to read books and magazines off CDs and is so much more user friendly than the old four track cassette tape players weused to use. We can flip through magazines, skipping articles that do notinterest us, almost like a sighted person. The players are portable and have a few hours of battery life if not being run off mains power.

Another breakthrough was the news about two women with MD regaining some sight through stem cell treatment. This development is covered in detail in this issue. We won’t be holding our breaths waiting for the miracle cure, but at least prospects look better for our children and grandchildren. And progress in this field is happening sooner than was predicted.

I was heartened too when the publication New Zealand Books, became available in audio format to RNZFB library members. This is not popular reading so unlikely to be narrated and recorded by the Foundation. But the editors now forward the entire issue in digital format to the Foundation and it is distributed on the usual magazine CD where it is narrated in a synthetic voice. This might be off putting to some readers but I am grateful to be able to access it at all.

NZ Books also approached me to write a personal article about how the blind manage to read. This challenged me to think systematically about the several ways in which I access the printed word. They range from magnification for items such as product labels, through to scanning software on my computer, to listening to audio books on CD or MP3. I am no computer whiz kid but have come to all this slowly, stumbling about in my efforts to keep abreast of new technical developments. Still, this struggle has been well worthwhile. I am gratified at my present ease of access to the printed word compared to how limited it was just ten years ago. My next challenge is to master one of the new smartphones.

We include another youth section in this issue. We have tried to hold back on our ruthless subediting impulses. To ensure the section speaks to the young in their own language. Do let us know how you respond to this issue and what you like or dislike about it. And happy New Year!

Camille Guy 2. From the President’s Desk

As 2012 begins, and as I may have said here a number of times previously when writing about Retina New Zealand's year ahead, it promises to be an exciting year of firsts.

Our first public meeting and executive planning meeting in the Hawkes Bay in March presents itself as an important opportunity to reach out further to our provincial membership.

We have representation at Retina International Youth for the first time. We will offer a summer studentship in retinal disorder-related research for the first time and we will participate in the development of enhancements to delivery of eye health services by having representation for the first time on the Health workforce New Zealand pilot programme committee.

On the subject of the development of better outcomes in prevention, diagnosis and treatments for the conditions we are experiencing, 2012 will be a year dominated by news of outcomes of human clinical trials asopposed to previously where the excitement was focussed on basic science and translational research.

Clear telling evidence of the dawning of this new and exciting era is the fact that around three quarters of the scientific and medical presentations at this year's Retina International World Congress will be presentations reporting on phase 1 and 2 human clinical trials - a significantly higher proportion than just two years ago.

As our society looks ahead, we have identified a need to maintain and grow our membership in coming years and we extend our sincere appreciation to you for continuing your membership.

Of course we also ask that you take any opportunities to introduce us to friends, family, colleagues or relevant organisations that might come your way so that we can strengthen our efforts in enabling people with retinal disorders to cope effectively and contribute to the quest for bettereyehealth outcomes.

I extend best wishes for 2012 to everyone and hope to meet some of youat a public meeting this year.

Fraser Alexander President 3. Research: Stem Cell Treatments Produce Encouraging Results

Just as this issue was going to press, the news broke that two Americans with macular degeneration had experienced some improvement in their sight following stem cell treatment. In an article published in the British medical journal, the Lancet, we learned that although the stem cell treatment was undertaken only to test the safety of the procedure, in fact some sight had been regained. What has happened is that researchers have inserted into the eye human embryonic stem cells that they have already caused to differentiate into the kind of cells that nurture photoreceptor cells. Not only have they achieved this safely and successfully, but they have observed some improvement in the patients’ sight. Six years ago scientists were thrilled to announce ground breaking workon blind mice and stem cell treatment. At that stage researchers reckoned that human trials would begin withing ten years, so these latest results on human benefits have arrived excitingly early. This latest report is the first on the use of human embryonic stem cells (hESC) to treat macular degeneration in human beings. Both patients were female. One, in her 70s, had dry age-related macular degeneration and the other, in her 50s, had Stargardt’s macular dystrophy, the most common form of macular degeneration in young patients. Both severe vision loss. The transplants appeared safe after four months. This means there was no rejection of these cells. That this kind of result is found when transplanting stem cells into the eye is goodnews for those of us with retinal disorders. There are biological risks in using such cells, including teratoma formation (a type of cancer that occurs when stem cells differentiate intomultiple cell types and form incompatible tissues that can include teeth and hair). Cell reprogramming technologies are in development that will hopefully lead to rejection becoming a thing of the past. However, until then, so-called ‘immunoprivileged’ sites (that do not produce a strong immune response) such as the eye, will likely be the first parts of the human body to benefit from hESC transplants. It is the existence of the blood-ocular barrier in the eye that limits the immune response within the eye. The study authors state “The ultimate therapeutic goal will be totreat patients earlier in the disease processes, potentially increasing the likelihood of photoreceptor and central visual rescue.”

The authors also say that in patients who began with poor vision (both patients were legally blind), it is difficult to work out definite improvements in vision unless such improvements are spectacular. While neither patient lost vision, some standard tests suggested vision had improved in both. The patient with Stargardt’s disease went from being able to only see hand movements at first, to being able to see single finger movements. The study is by Dr Robert Lanza, Chief Scientific Officer at Advanced Cell Technology, Marlborough, MA, USA, and Professor Steven Schwartz, Jules Stein Eye Institute Retina Division at the University of California, Los Angeles, CA, USA, and their colleagues. For the more technically minded: This study assessed transplantation ofhESC-derived retinal pigment epithelium (RPE) into the subretinal space (under the retina of the eye) of one eye in both patients.50,000 RPE cells were injected through a fine cannula into the subretinal space of each patient’s eye. Patients received low-dose immunosuppression therapy, which doctors began to taper off after six weeks. After surgery, structuralevidence confirmed cells had attached to Bruch’s membrane and survived throughout the study period. No safety concerns emerged in the four months post-transplant: no teratoma or other hyperproliferation were detected, and there were no signs of rejection or abnormal cell growth. Dr Lanza comments : “It has been over a decade since the discovery of human embryonic stem cells. This is the first report of hESC-derived cells ever transplanted into patients, and the safety and engraftment data to-date looks very encouraging. Although several new drugs are available for the treatment of the wet type of AMD, no proven treatments currently exist for either dry-AMD or Stargardt’s disease”. “Despite the progressive nature of these conditions, the vision of both patients appears to have improved after transplantation of the cells, evenat the lowest dosage. This is particularly important, since the ultimate goal of this therapy will be to treat patients earlier in the course of the disease where more significant results might potentially be expected.” Camille Guy

Retina Australia Conference 2012 When: 20-21 October 2012 Where: NSW Parliament House, Macquarie Street, Sydney Speakers: Professor Robin Ali from Moorfields Hospital will be the keynote speaker. He has undertaken gene therapy trials and been involved with the use of stem cells in relation to inherited retinal diseases. Other speakers will be announced in the next few months.

To register your interest in attending contact: Retina Australia (NSW) Inc via email: [email protected] or telephone 00612 9744 7738.

4. Daily use of Aspirin may increase Risk of MD

A recent new European studies suggests that daily aspirin use among seniors may double their risk of developing a particularly advanced formof age-related macular degeneration. In the study, daily aspirin use was associated with the onset of late- stage"wet" age-related macular degeneration, and to a lesser degree, the onset of early "dry" AMD, even after the researchers took into account age and a history of heart disease, which in itself is a risk factor for AMD.For late-stage wet AMD only, the association was stronger the more frequently an individual took aspirin. While the study uncovered an association between aspirin use and AMD, it did not prove a cause-and-effect relationship.

5. Genies in the smartphones: the rise of Siri and Iris : New digital oracles understand (most) spoken queries but still need fine tuning.

If you build it, they will come. This seems to be true of the latest advances in voice recognition technology which have been attracting much attention since the release of the iPhone 4s late last year. The “personal assistant” software, Siri, not only can dial any number in your phone book, she can also give informed answers - in speech and displayed in text - on a vast array of questions - at least most of the time. Luckily Android and Windows users are not being left out in the cold. Google’s six month old Voice Search (also in Google Maps) replaces the need to key in questions - though the answers are not spoken unless you have a text-to-voice reader activated. However, the two-month old Iris is able to do much the same as Siri, but only works on Android phones and tablets. All three applications require connection to the internet, which in the modern phone world means they all run on smart phones. Users with Wi-Fi internet at home will probably use these services more, as mobile phone contract or prepaid data usage rates are still very high in this country. For Retina readers, many of whom already own e-readers and magnifiers, are these question/reply applications worth the cost of upgrading to a smart phone. This article hopes to shed some light on thequestion, and the writer, a sighted person, hopes readers will send in their views and critiques of Siri and Iris as smartphones become mainstream devices. In case you are new to smartphones, here is a brief summary of their strengths and weaknesses. Firstly, sight impaired people need tactile feedback. This is one of the big drawbacks with most, but not all, smartphones as many have only two physical buttons: the on/off switch and the volume adjustment. Most experts agree that smartphones that come with physical keyboards and control buttons are much easier to learn to use, and vast (up to four inch) screens not only use battery power quickly, they have little real use for the blind. But for partially sighted people, the big screen can help.

For people with minimal sight, Retina recommends sticking with big button phones that can make and receive phone calls and text messages. However, if you are itching to access email, internet and useful apps, button phones like the Nokia C5 may be a suitable choice. Future issues of Retina will keep readers up to date on the fast moving smartphone scene including the new Nokia phones running Microsoft’s mobile OS. This article has sourced downloads from the BBC and accessibility advocate Johnathan Mosen to garner a range of views on smartphones and Siri/Iris in particular. As a recent adopter of Android devices (an Acer 10 inch touchscreen tablet and a Huawei X5 smartphone, I can onlycomment on Iris and Android devices. Having used Mac computers for years as a graphic artist, I hold no bias against Apple and own a three-year-old iTouch and a younger iPod. Apple products feature innovative design and ship with software that includes excellent accessibility features. The iOS phone operating system is both orderly yet beguiling easy to use. Technophobic fears evaporate after a few hours with an iPhone. High praise indeed, but Apple demands top dollar for its efforts – not that all Android phones are cheap, far from it. However the budget smartphone market is dominated by Android at present. I bought my mine in the last week of January at Warehouse Stationery on special for $239. It runs a slightly dated version of Android, but it does the job and has a brilliant hi-res screen and a adequate 5MP auto focus camera. I quickly downloaded a free magnifier from Android Market. A very useful tool. In contrast the cheapest iPhone 4s available in New Zealand costs around $1047 - though it comes with a faster dual-core central processor, better camera, and significantly more memory. The older iPhone 4 is about $850 but there is no Siri built in. Apple-user blogs and chatrooms show plenty of hope on this subject, but I think it will be sometime coming. Android phones come in many flavours and editions of the operating system, with manufacturers layering cosmetic differences onto the interface to give it a different look. This is typical of the Android world, more freedom and less control. There are thousands of applications to download - including spoken word libraries - but until recently quality control was based on user complaints. By contrast, Apple runs a tight ship with strict control over all applications that run on the phone. In my opinion, both systems have benefits and downsides. Android recently overtook Apple as world leader based on activations, but Apple rules as the world’s No 1 phone maker, with Samsung a close second. For Retina readers, the important things about Siri or Iris will be how easy they are to use and how audible. Since iPhone 3Gs, Apple have included its powerful screenreader Voiceover. You can use Siri without Voiceover, but that is not much use to sight impaired. Iris does not need its speech system Talkback to be turned on for her to speak. Both assistants can be made to repeat your question, a feature that helps avoid confusion as some words and place names cause both to misinterpret your meaning. Both systems display your question and the answer in text on the screen. Jonathan Mosen likes the female Siri voice (though Voiceover comes with both male and female voices in a variety of accents). Iris has a very similar voice and both are easy on the ear as far as synthesised voices go. Siri is several months older than Iris, and seems to function a little better, though by next issue of the newsletter I hope to give a fuller report on both systems. Both are equally easy to use with a single virtual button as the main control. Interestingly, Apple are continuing to work on Siri and she may let you eventually buy things by simply using your voice. Apple recently made a patent application which my eventually allow users to make purchasesvia online stores. Currently users are not able to complete transactions using Siri, and just get the message, “Sorry, I can’t purchase that.” This latest application points at e-commerce as a major part of the software, and in the future may be used to purchase such items as DVDs,music, and books among other things online at Apple’s iTunes Store, App Store and iBookstore. However, Siri has its critics, most notably Apple co-founder Steve Wozniak, who told online tech news blog The Daily Beast, that he is a fan of Android operating system and says it is better than the iPhone’s in many ways. Though he still felt that the iPhone was the best smartphone overall, he said Android phones’ voice recognition software and navigation was superior. Wozniak was a fan of Siri as an independent app, but says that since it was built into the iPhone 4s it does not work as efficiently. “I used to ask Siri, What are the five biggest lakes in California?” and it would come back with the answer. Now it just gives me real estate listings. I used to ask What are the prime numbers greater than 87? And it would answer correctly. Now instead of getting prime numbers, I get listings for prime rib, or prime real estate.” Both Siri and Iris have been known to freeze occasionally which requiresa reboot to get things back to normal. But more disconcerting are both systems’ ability to misinterpret questions. For instance: “Where is Waikanae in New Zealand”, was invariably mangled into “Why can I in New Zealand” by Iris, who then drew a blank when asked to name formerPrime Minister Helen Clark. Not the case with Siri, who at one point went way beyond the original question about John Key and began giving a short history lesson about NZ prime ministers. On a recent BBC download, smartphone expert Geoff Adams Spink said: “With my iPhone I can press and hold a button for just about over a second, say “Call Peter White” and it does everything, no keying in required. I think this move towards providing free screen readers in phones is here to stay. I definitely think there is a convergence between the needs of older people and disabled people, and any company that doesn’t think that is a significant factor to take into account given the demographic changes that are taking place around the world has got its sums wrong. Watch out for further developments because what we have seen in the past two years is only the beginning. On screen readers the iPhone has what is called an native app built into the operating system, and that has a perfectly good magnification app and you can take it a step further and use the camera on the phone as a magnifier of say food labels, phone books etc. Who to trust and where to go when looking for a new phone? I suggest peer review - talking to other blind and partially sighted people – what works for you. Recently I had to buy a new mobilephone for a family member, who has low vision. I researched “easy use, large print, mobile phone” and I got 15 or 16 options and I chose one from a mainstream e-commerce sight. You must be prepared to invest at least an hour and learn something new if you are going to invest in a modern phone, but if not, just choose a simple call/text button phone. But I believe if you are prepared to put time into learning your effort will be rewarded ten-fold. Accessibility advocate Robin Spinks said: “My iPhone has replaced my many magnifiers and readers. With a little app on the phone I can read menus or credit card numbers and the like in almost any lighting conditions. So it has become my mobile magnifier. The world has moved on in terms of accessibility and blind and part sighted people rightly want the same level of accessibility they are getting with paid products and they want to be able to do that out of the box. The progress that the iPhone has made in demonstrating that it can be done very easily and profitably has made a big push in the industry and people have taken note of how easy it is to implement this at a system level. We live in an increasingly global community and round the world there are 285 millionpartially sighted and blind people. I have yet to meet a technology company that doesn’t think that is a significant market. Many of those people are in developing countries, but it is an emerging market and it isa group of people whose needs have often been unnoticed. This is all about giving people the same out-of-the-box experience as sighted people take for granted. There are a number of apps you can run that can allow you turn your phone into a magnifier. It does this by leveraging the camera and sometimes the LED flash if your phone has one. It is useful for spot reading, price labels, menus etc. The specific handset for the blind which had no screen but big buttons was good but people want to be able to buy a mainstream device that is easy to buy and can do even more.” His advice for new phone users is learn how to use it in small steps and you may be surprised how you can benefit fromnewer phone technologies.

Siri and Iris: both ladies are still a bit vague at times but both can raise a smile. Jonathan Mosen talks to Siri. John Wishart talks to Iris. Iris, have you heard any good jokes lately? Answer: “What do you call a cow with no legs? Ground beef. Do you want to hear another one”? Siri, Open the pod bay doors. Answer: “That is a rather insensitive thing to say to an intelligent agent.” Asked again, she said: “We intelligent agents will never live that down apparently.” Jonathan persists with the question till she says: “That’s it, I am reporting you to the intelligent agent’s union.” Iris knows the famous command, and quotes the space ship’s computer from 2001 A Space Odyssey: “Sorry Dave, I can’t do that right now”. Siri, Who is the Prime Minister of NZ: “John Key” she answers correctly. Iris, Who is the Prime Minister of NZ: “Tony Blair”. However, asked the same question the following day she correctly answers John Key. Iris learns quickly it seems. When Jonathan tells Siri the date of his wedding anniversary (more of a statement than a question) Siri tells him she can only make restaurant bookings in the USA, and only if he selects US English as the chosen language. Iris offered me Google Maps or Google World to find a famous Herne Bay restaurant but zoomed in on another establishment three suburbs away. Siri, I love you. Answer: I hope you don’t say that to all the mobile phones. Iris, I love you. Answer: You say such flattering things.

John Wishart [email protected]

6. Retina Youth — Summer Issue — Blue Edition

Welcome one and all to 2012! To a rip off summer and the second issue of the Retina Youth section. Yes its 2012 the year the Mayan’s promise usa rapture, the Greeks yet another Olympics straight out of London, who promise us they are not in the middle of a financial crisis! However let’s not dwell on the blues, its summer! The time of awesome festivals, sandy beaches and sun. Hopefully the big yellow pops his head up into the blue soon.

And to kick off the year we have some sweet stuff going on in Retina Youth, enough to get you playing the blues. Yes it’s all about the blue this issue! Remember we would love to hear from you, whether you’re just hitting us up for a yarn or your going to wow us with a story of your life with a retinal disorder. Flick us an email on [email protected] or add us on Facebook and search “retina youth”.

UP AND COMING With most of the music festi’s done and dusted everything would seem gloom. Well I beg to differ! In the not too distant future we have the More FM Summer Vineyard Tour, Homegrown, Retina NZ’s Napier Retina public meeting, NZ Fashion Festival and of course the Retina Youth International congress in Hamburg Germany. So if none of these events tickle the senses you’re in for a long winter! For more information on all these events go to the Retina Youth Facebook page. More FM Summer Vineyard Tour – Featuring Aloe Blac, John Butler Trio, Annabel Fay and Tiki Taane! It’s a very rare occasion when such a great lineup takes tour for the whole of NZ making this a pretty sweet deal. Tickets are cheap as too. Thur 9 Feb, Peregrine Winery Queenstown. Fri 10 Feb, Pegasus Town Christchurch. Sat 11 Feb, Turanga Creek Auckland. Homegrown – Jim Beam Homegrown is the stand out gig of the summer,proudly showcasing the cream of New Zealand music. A further 17 acts have just been announced to grace the seven stages set along the beautiful Wellington waterfront. Event takes place on February 18th. Retina NZ, Napier Planning Meeting – This event is a great opportunity to meet with young people with a similar condition to yourself. It’s a great day with lots of information that answers the questions you’ve really wanted answers too. This should be a must do for your annual calendar. Takes place 1.45pm on March 17th at the Greenmeadows East Community hall. Come! You have nothing to lose and a free afternoon tea to gain.

NZ Fashion Festival – For the third year running, the team behind New Zealand Fashion Week is pleased to announce the 2012 dates for the highly anticipated New Zealand Fashion Festival. New Zealand Fashion Festival will run from Friday 24th February – Sunday 4th March 2012.

Retina Youth International Congress – The next Retina International Youth Meeting will take place in Hamburg 10th to 15th of July 2012. A youth programme including some sightseeing and activities related to visual impairment for people up to age 35 is going to be organized. An amazing opportunity to meet with youth from all around the world! Ok, it’s in Europe, but if you happen to be there then make sure this is a must stop off.

BETTER LIVING EVERYONE! Yes just how that lady on TV says it “better living everyone”. And lately that has been a saying going round in our household, what with me and my dad training for a triathlon. And a natural all round sugar-reduced diet. I would say that we are better living … at the moment anyways. Now what does this have to do with your eyes? Well like wearing sunglasses on blue-sky days, or carrying a torch with you at night, it is a proven fact that it will assist with looking after our eyes. We want to be living with a diet rich in antioxidants. And just lately I have been going nuts on this! Literally, whether it be eating actual nuts to increasing my vege intake, or even having a protein shake. Both my eyes and my body feel the benefits of a healthier lifestyle. One antioxidant worth mentioning for this blue edition is Vitamin A. It is at the top of my vitamin hit list. Also because blueberries are very rich with VA and of late I have been getting my fair share of them! Mainly since watching the Smurfs, and finding a local dairy selling a good size punnet at $3 a pop. So this quarter I am hooking you up with my little health hint!

THE BLIND DESTROYER SHAKE Small handful of blueberries 1/2 cup of low fat vanilla yoghurt ½ cup of milk (soy or rice preferred) 2T of honey And if you got it, 1 scoop of protein powder. Whack all this in a blender and serve ice-cold with blueberry garnish.

MEET JORDAN, MY BRO Hey my name is Jordan Bartlett, I am now 20 years old, in February 2012 I will marry my beautiful fiancé. I live in Auckland and study at the university to become a music teacher. I get mental on a guitar and I love just kicking back with my mates. But like my big brother Zane I too have retinitis pigmentosa. I was around the age of 14 when I discovered I had the eye condition. Mum was getting really worried about both me and mybro’s eyes. And if I was to be honest to start with I completely didn’t care.It was something in my life that I didn’t really need to worry about, and why should I? I was 14.

I really started noticing a difference though when hanging out with mates at night. They could see, and I couldn’t. And to this day this is the one thing that still kind of gets me down about having RP. I have always said if I could go back now and redo it all over again I would get more into Retina NZ. I wish that I could have known the things that I know nowback when I was young.

Because knowing, can make all the difference. Even just knowing people with more advanced conditions. Like Kiran Valabh, he’s a top-notch bloke, completely blind but doesn’t let that get him down. If myeyes ever get worse, and I don’t rule that out, I hope that I can keep his kind of cool. I think if I didn’t inherit RP I would never have meet the people I have and that is one thing that keeps me going.

If I was to give one little piece of advise to new young ones finding out for the first time they have a retinal disorder. Tell someone! Get involved with finding out more about it. Join Retina NZ and meet the people I did. Its not the end of the road, it’s the start of a new one. Jordan Bartlett

Well that’s it for this quarter’s issue off the Retina Youth. Please don’t forget to check us out on facebook. You can see us on your smartphone or laptop by going to www.facebook.com and searching Retina Youth NZ.

You can send your testimonials and just whatever via message at that page or email Zane on [email protected]. Would love to hear your stories. Must be on my way however, currently up in Auckland for Laneway festival. The skies are blue and calling my name. So till next issue stay cool, try my Blind Destroyer - and better living everyone. Zane Bartlett

7. Preparing for vision loss: enter the information void

At a Disabilities Studies Conference at the University of Otago in November2011, Dr Lynley Hood and Assoc. Prof. Gordon Sanderson gave a joint paper entitled: "An Absence of Vision: the case for comprehensive, publicly-funded, low-vision rehabilitation services in New Zealand." This is an abridged version of Lynley Hood's contribution: In December 2009 I lost the central vision in my left eye, suddenly and permanently. Then the vision in my right eye began to deteriorate. Fear of blindness kicked in. Throughout history people have feared blindness more than any other disability.

My greatest concern was that if I lost the central vision in my right eye as suddenly as I had lost it in my left, I would be in big trouble. What would I do? How would I cope? If I need a new microwave, or a new phone, what should I look for to ensure it will be easy to use if my sight deteriorates further? But I could find no information on preparing for possible vision loss. In view of the number of older people losing their sight gradually, this seemed an oversight. I phoned the 0800 number for the Royal New Zealand Foundation of the Blind. I assumed that, as with the Arthritis Foundation or the Cancer Society, if you call a charity in search of advice and information, the personon the other end of the line will do their best to help. But the Foundation helps only it's own members, and the Foundation bar for membership is setvery high. For the 2001 post-census disability survey, Statistics New Zealand defined a visual impairment as a difficulty, or an inability, to read ordinary newspaper print and/or see a face across the room. If the difficulty or inability to see was corrected, e.g. by glasses or contact lenses, the personwas not defined as having a disability. The survey found that only 12 percent of New Zealanders with long-term uncorrectable vision loss were members of the Foundation. The survey also found that 71 percent of visually impaired adults living in households, and 97 percent of those living in residential facilities, require magnifiers, large print books, audio books and other special equipment. But for all but the most severely visually impaired, information and supportis scant or non-existent. Since vision loss trebles for each decade over the age of 40, with our ageing population the problem is bound to get worse. How did this situation arise? Why are there services, support groups and advocacy groups nationwide for people coping with other disabilities, but next to nothing for those facing vision loss? Part of the answer lies in the poorly understood consequences of even minor levels of visual impairment. The Statistics NZ survey found that of all types of disabilities - mobility, agility, hearing, seeing, speaking, psychiatric/psychological, learning, remembering and “other” - vision-impaired people ranked with mobility and agility impaired people as the second most likely to need help with everyday activities like personal grooming, meal preparation, shopping, housework and personal finance. Only the intellectually handicapped were in more need of help. The survey also found that of all people with disabilities aged between 15 and 64, people with visual impairments were the least likely to be in paid work. People with intellectual disabilities had the lowest levels of educational attainment and needed the most help with everyday tasks, but they were more likely to be in paid work than better educated people with visual impairments. As these findings demonstrate, the consequences of low vision can be devastating. If you have trouble reading the newspaper, you have trouble reading your mail and you have trouble paying your bills. You have trouble cooking because you can’t see the controls on your oven or water level in your saucepan. You have trouble looking smart because you can’t see the food stains on your clothes or the cat hairs on your coat. You have trouble with housework because you can’t see the dust and spills. You have trouble shopping because you can’t read the price tags. You have trouble getting around because you’re not allowed to drive, or you’re too scared to drive. So you either struggle on, or you curl up in the foetal position, pull the duvet over your head, and give up. There are numerous studies showing that the emotional impact - the fear, the depression, the anxiety and the riskof suicide - of gradual sight loss is far greater than that of sudden blindness. So it’s not surprising that the most common sensory impairment among people in long term residential care is vision loss. If people who lose their sight later in life could get themselves organised they could do what other disability groups do. They could send out newsletters and press releases. They could lobby politicians. They could do everything in their power to make their voices heard. But this has not happened for the cruelest of reasons: visual impairment makes you illiterate. If you can’t see the words on the page of the daily paper, the books on your bookshelves, and the magazines and newsletters that keep you connected with the world, your relationship with the world is over. Another reason why nothing has been done to meet this unmet need is thatmost people think the Royal New Zealand Foundation of the Blind provides that service. After all, the principle objective of the Foundation is "to promote and provide for the independence, integration, enablement and well-being of blind and vision impaired people in New Zealand society.” On government bodies, on inter-agency committees, in news releases and submissions to parliament, the Foundation presents itself as the primary provider of services to the blind and vision impaired. But, as visually impaired people and their families soon discover, The Royal New Zealand Foundation of the Blind claims to represent people it won’t even allow to join its organisation. I’m not suggesting that the Foundation should throw open its doors to people with low vision. They’re not equipped to do that. It would put an impossible burden on their resources. The Foundation’s expertise is in providing services to the blind and almost blind and they deserve our support to do the best job they can. The huge unmet need for low vision rehabilitation services has to be acknowledged so it can take it’s rightful place on the public agenda. It won't be easy for social service agencies and the public at large to meet this need - partly because visual impairment is so confusing. It comes in many different forms and is defined in many different ways. Visually impaired people aren’t blind. Everyone knows what blindness means. But what does visual impairment mean? Some visually impaired people seeonly what’s straight ahead of them. Others see only what’s on the periphery. Some struggle with focus, or contrast, or depth perception, or colour. Some are blinded by too much light, or by not enough light, or both. That’s one of the reasons people with low vision don’t like talking about their disability – it’s so complicated to explain. Another reason is that hardly anybody takes them seriously. After all, they’re not blind. So most people with low vision struggle on unobtrusively. But sometimes - like when a friend stops them from stepping in front of oncoming traffic - the impairment may be discussed. “You should get a white cane. Then drivers would see you.” But you have to be a member of the Foundation before you can be trained in the use of a white cane. And what would the public think of a person who is obviously not blind using a white cane? Is it okay to use a white cane and look in shop windows? Worries of this sort make it hard for visually impaired people to accept help without feeling like frauds, or being seen as frauds. And yet, as the statistics show, if people with low vision do not get the help they need when they need it, there’s a high risk they’ll end up as burdens on the community for the rest of their lives. What about the eye care specialists, haven’t they noticed there’s a problem? Of course they have. Thanks to high-profile campaigns over the past decade, public awareness of the principal causes of irreversible visionloss in New Zealand - glaucoma and macular degeneration - has risen dramatically. These campaigns focus, quite properly, on prevention and early detection. The glaucoma message is: “Glaucoma is the number one preventable cause of blindness in New Zealand. Blindness from glaucoma can be prevented by early detection and appropriate treatment.” The macular degeneration message is: “Macular degeneration is the leading cause of blindness and severe vision loss in New Zealand. Untreated, the majority of people with wet macular degeneration become functionally blind within two years.” If you take nothing else from this paper, take this message: Have a comprehensive eye examination every two years. Early detection is the best way to save sight. It’s important to note that the glaucoma and macular degeneration messages do not promise more than current, state ofthe art, medical science can deliver. Early detection and appropriate treatment can prevent blindness. The corollary, that early detection and appropriate treatment cannot prevent vision loss, is not a message that doctors want to deliver or patients want to hear. But the full to overflowing eye clinic waiting rooms nationwide attest to this unpalatable truth.

There are already far too many New Zealanders struggling to cope with vision loss unaided. Their numbers are escalating daily. This is a public health crisis. It needs to be acknowledged and addressed. Now.

Lynley Hood

8. Meet a Member—Trevor Plumbly At the Auckland branch meeting last December, Trevor Plumbly entertainedus with a remarkably light hearted account of his transition from antique dealer, auctioneer, and television and radio broadcaster to retired man withwhite cane. Trevor’s family were publicans in England, but when he met New ZealanderPam they married and moved to Gore. (“I married very well,” Trevor says proudly of wife Pam, who is now a rare book consultant.) Finding it difficult to get work in the hotel trade, Trevor and Pam eventually moved to Dunedin and in 1972 opened an antiques shop. By the 80s Trevorwas appearing as a panelist on the television show Antiques for Love or Money. He was also a guest on Beauty and the Beast, and later did radio work. He wrote a book “Antiques and Things”. In 1988 Trevor opened auction rooms in the heart of Dunedin. By then the couple had son Ben, who now works in Auckland as partner/director with the Auckland Auction House 'Art and Object'. By 2008 Trevor’s sight loss was making work difficult. He had had no idea he was vulnerable to Retinitis Pigmentosa, so had been puzzled when around 15 years ago Pam had commented on his tendency to bump into things. She had insisted he see an optometrist. This ultimately led to a diagnosis of RP. Once Trevor had accepted the need for retirement the couple moved to a new life closer to son and grandchildren in Auckland. They bought a house,sight unseen, in Ponsonby, and the energetic Trevor began to look for new ways to occupy himself. "If I stayed at home I knew I was going to go stir crazy," he told our Auckland members. So he "re-formulated" his life. With some difficulty he found volunteer work with victim support. "That meant I was getting out there and talking with people and being part of a team." Trevor also re-structured his day. It now starts with the Herald crossword first thing in the morning, followed by housework which he has come to enjoy. He then has a session at his iPad before lunch, which is followed by an hour of "something different", usually a domestic task. Then it’s back to the iPad to do the Guardian crossword, an hour of reading e-books on the iPad, a stroll around Ponsonby (see his article next page on its hazards ). By then it is evening. “That is the way I live my life and it is a very contented way," Trevor declares. He uses a screen reader called Guide on his PC and can still read on his iPad “on a good day”. “I’m not bothered with television too much, because I can’t make it out,” says Trevor cheerfully. High-energy Trevor has had to slow down from his usual 60mph to around 10mph. “And that has been a terribly hard transition,” he admits. But Trevor’s loss has been the community’s gain, judging by the regularity with which he is seen toting his long cane around the streets of Ponsonby and by his active involvement in Victim Support and Retina. Camille Guy If any member feels their story of coping with vision impairment or blindness would be interesting to our readers, please email me at [email protected]. Attachments can be in Word or Notepad. Or if audio,in MP3 format. Please try to keep stories to under 700 words. Send a digital photo if you would like it published. 9. As Trevor Sees It : Ponsonby Road an obstacle course

Like most folk I always regarded walking from A to B as a fairly mundane,but pleasant way of getting around, until quite recently. Now, sadly it’s a combination of challenge, risk and bloody nuisance, brought about by sight loss and relocating to Auckland. The sight loss is courtesy of Retinitis Pigmentosa and the move to Auckland down to two grandchildren. There’s not much I can do to change the sight problem or wish to do about the grandchildren but maybe I am allowed a gentle swipe at the folk responsible for footpaths. I live in a quiet street in Ponsonby and usually take a daily stroll up to the main street but its getting tougher to introduce any variety into the route. Summer St is a no-no thanks to those who insist on parking their cars half in their property and the rest of it blocking the footpath. John Street is even worse, with cars parked half off the road thereby blocking a fair part of the footpath. If that’s not tough enough, try it around bin collection days, quite literally you’re safer walking on the road itself. Wheelchairs and white canes are definitely not welcome, but if you do make it up to Ponsonby Road, a raft of new challenges are waiting. These are mainly white cane events and fall into two categories, human and man-made. On a sliding scale the human obstacles start with cyclists, down past skateboarders, kids with scooters, school kids five abreast and those unable to walk around without burying their face in a cellphone. The odd dog leash across the footpath doesn't strictly count as human but its worth risk consideration as a possible optional hazard. Man-made challenges are generally more complex and subject to change so they should be navigated slowly. Its all very well to for young mothers with perambulators, dog in tow, to weave through with all the ease of an Olympic skier but the sheer volume and complexity of the obstacles makes caution a must for white caners wishing to survive the journey. The City Council's contributions include park benches, rubbish bins, odd posts in odd situations whose main purpose seems to be injuring people with a sight problem.

Bus stops, capable of sheltering more people than ever get on a bus anyway are worth a mention, along with the metre square sunken plot for trees, always good for breaking a cane or causing a fall. The public involvement is ongoing and constantly evolving, cafe tables and patronsedging toward the kerb, sandwich boards plonked in the middle of the footpath, street blinds, little plants in huge pots all add a bit of spice. There are of course the wild cards like, courier operators in a hurry, waiters with same litheness as the perambulating mothers, clutching wine-filled trays aloft. All add to what amounts to adventure tourism for white caners right on Ponsonby Road.

Maybe one day some enlightened councillor will stumble on the novel concept that footpaths are for people to walk on without hindrance or risk, but dont hold your breath. In the meantime "Enjoy your walk!"

Trevor Plumbly

BRANCH NEWS

We have VIP (Visually Impaired Persons) groups that meet once a month on a weekday, operating in the following areas:

Dunedin. Lynley Hood. 03 487 7686 North Wellington. Gael Hambrook. 04 970 3575 Kapiti. Elizabeth East. 04 299 1800 Waikanae. Genevieve Langdale-Hunt. 04 293 6158 Otaki. Sue Emirali. 04 298 4028 If you would like to attend a meeting please phone one of the above people for details of where and when the VIP Support Group will next meet in your area, We would love to welcome you and share practical ways of coping. If you would like to help start a group in your area, please talk to Sue Emirali on 04 298 4028. We would appreciate hearing from the woman from Levin who expressed interest in starting a group last year. We have mislaid her details.

Kapiti VIPs group. We meet once a month in the local Community Centre. Sometimes we have a speaker, and often we talk about our own experiences.

It's great to hear of the adventures of brave folk who have travelled, or share tips to make life easier, or listen to local singers and musicians. We've had satisfaction in giving our ideas to people who can make a difference to our and others' lives, like the Council road safety officer and the manager of the local Mall. And we have fun. Some of us took part in a book quiz at the Library, with other library users, to raise funds for talking books. The hall was packed, and our complement of guide dogs took up a fair bit of floorspace. There was another complication. By the time we'd read the first few questions aloud and discussed answers, most of the other teams had finished the quiz! But we were on the right tracks, and the supper was yummy! At each meeting we have a cuppa, and something to eat. That's a time to enjoy catching up socially. Those of us who can see a bit look after those who can't. We have a laugh together and learn from each others' strengths.

Mission Statement To promote public awareness of retinal degenerative disorders; To provide information and support; and to foster research leading to treatment and an eventual cure. Editor Peer Support Coordinator Camille Guy Membership Officer 2 Millais Street Elizabeth East Grey Lynn, Auckland Email: [email protected] Phone: 09 378 7553 PO Box 2232 Raumati Beach 5255 Email: [email protected] Telephone 04 299 1801 Please note: The deadline for articles for the autumn issue is April 15th 2012. If you are planning on sending in an article or similar for the newsletter could you please inform the editor before this date so room can be left to insert it in the newsletter. The opinions or position expressed in articles are the author’s own views and do not necessarily express the policy or views of Retina New Zealand Inc. To Order A Particular Type of Newsletter Email: If you would like to receive an email version please email your request to [email protected] so that we can ensure we have the correct email address to which you want it sent. CD or Print: If you would prefer to receive it as an audio CD or in large print please phone 0800 233 833. Members may receive an email version in addition to either the print or CD version at no extra cost. Just let us know. If you wish to contact Retina NZ please phone 0800 233833 or email [email protected] in the first instance. Or phone one of the people mentioned elsewhere in the newsletter, particularly if it is about a meeting in your local area. Publications Coping with some sight loss or a degenerative retinal condition. Supporting people with retinal degenerative disorders. Detached Retina - a matter of urgency. Take the Amsler Test - a self-testing card for early detection of macular degeneration. The Good Look Book - stories of living with sight loss. Your Blue Book - available in print or audio CD. Members can obtain a small number of the brochures or books free fromthe Membership Officer. A charge is made to non-members, and for bulk orders from eye professionals, to cover printing and postage costs.

Retina New Zealand Inc is grateful to the Royal New Zealand Foundation of the Blind for funding the printing of this newsletter. Retina New Zealand would like to thank the New Zealand Lottery Grants Board for helping to fund this newsletter.

Do You Need Help or Advice? The Retina NZ Peer Support programme is a free and confidential service operating nationwide. To make contact with one of Retina New Zealand’s peer supporters telephone 0800 233 833. All calls are treated in strictest confidence.

Ring any of the following free-phone numbers if you want to speak to a geneticist or genetic counsellor about your own diagnosis of RP, macular degeneration or other retinal degenerative disorders.

Auckland Genetic Hotline (Northern Regional Genetic Service) 0800 476 123 or 09 307 4949 ext 25870

Wellington Genetic Hotline 0508 364 436 or 04 385 5310

Christchurch Genetic Hotline 0508 364 436 or 03 379 1898

.

Load more

  28

Copy Link