Download May 2015 - Retina New Zealand

Retina NZ Newsletter May 2015:
From the Editor ....................................................................................................................................... 1
From the President’s Desk ...................................................................................................................... 2
Tech Bite: ICY Navigation ........................................................................................................................ 3
Retina NZ Meetings................................................................................................................................. 4
Audio Described Concerts ....................................................................................................................... 5
Able Television Service: Usage and Usability Report .............................................................................. 5
A Turn About the Grounds ...................................................................................................................... 6
Gordon Sanderson - Otago’s Renaissance Man Retires ......................................................................... 7
Meet a Member: Judy Campbell........................................................................................................... 10
Retina in a Petri Dish – The Kiwi Cooking the Recipe ........................................................................... 13
Research by the Patients of the Disease ............................................................................................... 13
Spotlight on Low Vision: Banking Update ............................................................................................. 14
Recipe: Asparagus Dip........................................................................................................................... 15
Regional News....................................................................................................................................... 15
Retina NZ details ................................................................................................................................... 17
From the Editor
Hello everyone and a happy autumn to you!
You may remember the artist Pinky Fang who was profiled in the last newsletter. She has
been in the news recently, unfortunately not for her fantastic art work, but instead for being
refused the discounted bus fare she is entitled to because she didn’t ’look blind enough’ to
suit the bus driver. Pinky was carrying her Blind Foundation membership card, as well as
her discount card for the Wellington bus service, stating that she was indeed blind.
The story was picked up here in New Zealand, and then by the Daily Mail in the UK, and
news outlets in North America and Canada. Clearly, the story resonated within the blind
and partially sighted community worldwide as there was a lot of online activity about the
story. Hundreds of people shared their own experiences of not appearing ‘blind enough’ to
suit the mainstream public’s understanding of blindness.
Foundation Fighting Blindness’ “Eye on the Cure” blog ran the story and asked their readers
for their own experiences. Some of the responses were typically similar; rude bus drivers or
shop assistants ... however this one was perhaps even more disheartening: “An old friend
said, ‘Aren’t you sort of faking it?’ I asked for her car keys. ‘If you want to see real faking,
let’s go for a joy ride.’”
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As someone who is experiencing RP in their thirties, with no Blind Foundation cards, no
cane, no aids of any kind, I feel I have to justify not being able to see very well in certain
circumstances, even to people who have known me a long time. How come I can read the
menu in this restaurant, but I couldn’t even walk out of the movie theatre unassisted? My
eyes take a long time to adjust to low light, and sometimes things are better or worse than
other times. It does make me slightly defensive at times and I often feel the need to explain
why I can or cannot cope in some cases.
This frustration isn’t limited of course to those who are partially sighted. Anyone with one
of life’s less visible disabilities would struggle with this. The need to put someone in a
certain box is frustrating; if I say I am not legally blind, then I find people say to me ‘oh yes, I
have terrible eyesight too’ in a slightly dismissive way.
There is comfort, strength and, most importantly, understanding from being a member of a
patient group such as Retina New Zealand. I feel lucky to be a part of it. There is a huge
amount of comfort to be found with people who know what you go through, no
explanations necessary.
Zoe Hill
Newsletter Editor
[email protected]
[email protected]
From the President’s Desk
Dear Retina NZ members,
Our newsletters have always featured gadgets, innovations and enabling strategies that
make our lives easier. Our aim of course is to offer information that is relevant, practical and
encourages you to explore a little. In recent weeks I discovered an iPhone app that I think
encapsulates our aim very well, and I really do need to spread the word for a number of
reasons. It is offered by a not-for-profit that needs volunteers and donations to survive,
offers an amazing service, and brings sight-impaired people and sighted volunteers together
from all over the world.
The ‘Be My Eyes’ story began in 2012 when Hans Jørgen Wiberg, a visually impaired Dane
recognised that blind people often need help to cope with smaller everyday tasks, where a
‘pair of eyes’ could make a significant difference. Three years of hard work successfully
concluded with launching the app in January this year.
Be My Eyes (www.bemyeyes.org) is a network of eyes that connects blind people with
volunteer helpers from around the world via live video chat. A blind person requests
assistance in the Be My Eyes app, the volunteer helper receives a notification for help and a
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live video connection is established. From the live video the volunteer can help the blind
person by answering the question they need answered.
Hans’ worldwide pleas to “lend your eyes to the blind” has been such a runaway success
that there are more than ten times the amount of seeing helpers than there are blind users
meaning that any delay is a result of the helpers all wanting to help at once!
My own experience has been fantastic. Pointing my phone at the previously inaccessible
screen on my treadmill in the garage, I asked “what are the readings?” The young lady from
Bangkok, after requesting adjustments to how I aligned the camera replied “distance is 9.07
and speed is 10.8”. I connected with a bloke from Singapore and asked if he could describe a
photo as we tested the app at work in my office “there are two couples, they both are old”
how old do you think “oh, quite old, at least 30”. Seems age is in the (bemy)eyes of the
iPhone holder eh?
In hoping that you can avoid the cold more successfully than I appear to have avoided the
distinguishing features of being old, I wish you all the best for a pleasant winter.
Fraser Alexander
President
Tech Bite: ICY Navigation
By Zoe Hill
There has been a fair bit of media coverage in the past month or so for a navigation app that
assists visually impaired Londoners to successfully navigate the bowels of the underground
train network. The system utilises the help of small beacons, stuck unobtrusively to the
underground walls that communicate wirelessly with the users mobile device, telling them
where to go to catch the trains.
The trial is only in one London underground station at the moment, but it is looking
promising. Not to be left out in the cold, New Zealanders can experience this too, thanks to
a small team of students in the North Island who have developed a similar concept in a
phone app called ICY. Stacy McLean, Ernest Cunningham and Daniel Grey are Software
Engineering students from the Wellington Institute of Technology, and created the concept
as their final project last year. Things have moved rapidly, and the full launch is only a few
months away.
The app has been made possible by the existence of ‘iBeacons’, which have been around for
a couple of years now. They are essentially a small, low powered transmitter that can be
placed anywhere to send signals to a device in its proximity, and can be used in indoor
spaces too. Even though ‘iBeacons’ were released by Apple, most smartphones should be
able to interact with them just fine. Each beacon has its own unique ID, and when a phone
with the ICY app approaches a beacon, it receives information that has been associated with
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that ID. This could be information such as the location the person is in, and extra specific
information a visually impaired user might need to navigate the location successfully.
There are two levels of information you can receive when you pass a beacon, one level
simply stating where you are as you pass a beacon, and the second level of information
gives you more detailed information that you might require. To access the second level of
information, users simply tap their phone.
So far, the students have been focussing on placing the beacons at transport points (such as
bus stops, train stations and pedestrian crossings), and at key public service business (such
as banks and post offices).
Genevieve McLachlan, who we have profiled in a previous newsletter with her business
‘Adaptive Technology Solutions’, has been working with the students to develop the app,
and also coordinating other people with disabilities to be involved in the early development
stages, a crucial time for real end users to get involved. She has commented that the app’s
ability to convey information about exactly where the counters or post boxes are at the Post
Office for example is very valuable.
If you live in Petone you will be able to utilise this app first, and the ICY team are looking to
expand across New Zealand if all goes well. They have tested their app thoroughly with the
help of their early testers, and are just ironing out some Māori pronunciation issues in the
lead up to the live launch.
So whether you are in London’s Pimlico station or Petone, it seems iBeacons are set to be
part of a lot of visually impaired users’ futures.
For more information, visit their website
Weblink: www.icy.vision
Retina NZ Meetings
Thank you to everyone who came along to our recent meeting in Hamilton. We had around
35 people attend our meeting, and by all accounts it was a vibrant, informative event with
attendees enjoying our speakers.
We had a fantastic line-up, with presentations by and discussions with Matthew Rudland
(Adaptive Communications and Adaptive Technology Services Instructor at the Blind
Foundation), Judy Small (Hamilton City Council Disability Advisor), and Rodney Stedall (Low
Vision Specialist at Patterson Burn Optometrists).
2015 is rolling by quite quickly already, and it’s that time of the year again when we let you
know about our AGM. This year it is lucky Wellington’s turn, so if you are in the Wellington
area or surrounds we would love to have you along.
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When: 29th August 10.30am to 3pm
Where: Braille House, 121 Adelaide Road, Wellington
A limited amount of transport may be provided. If you are interested in this, please contact
Sue on freephone 0800 569849 (option 2).
We start the day with a brief AGM and election of officers, which is followed by President’s
update. Before lunch we will have a talk by Genevieve McLachlan of Adaptive Technology,
and a chance to look at equipment over lunch. Following lunch Para Olympian Swimmer
Mary Fisher will be speaking, followed by Optometrist Andrew Black who will talk about
advances in optometry.
Nominations for President and the Executive Committee need to be with the Secretary, Sue
Emerali, by 30th June ([email protected]).
Audio Described Concerts
Chamber Music NZ is presenting two concerts for the visually impaired, one in Auckland
(12th June, $55) and one in Dunedin (24th June, $45). The concerts are audio described and
include a touch tour.
The audio described performances are part of their Turnovsky Jubilee Ensemble tour.
Tickets include touch tour, free companion seat, Guide Dog access, Volunteer assistance.
Book before 29 May on 0800
266 2378.
Able Television Service: Usage and Usability Report
By Zoe Hill
You may remember an interview with the CEO of Able in a previous newsletter. Able is the
service that provides both captioning for the deaf, and audio description for the blind and
visually impaired on New Zealand television.
Able have just released a report into how widespread usage of their captioning and audio
description services are on New Zealand television. They wanted to identify who was using
their services, and what barriers stood in the way of potential use of Able’s services. They
commissioned Colmar Brunton to carry out the research late last year.
The research showed that 1% of New Zealand’s population are using their audio description
services on television. The results showed that there was a good level of awareness of their
services among their intended audiences (captioning for deaf users and audio description
for those with low vision or blindness). The clear call from both communities was to make
Able’s services available on more programmes, channels, and platforms and to improve
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usability.
The sample size for the blind and low vision community was small. People who had
previously responded in a 2014 Air Audience survey that they had ‘ever used the Able audio
description service’ were re-contacted, as were members of the Blind Foundation willing to
be interviewed. Able acknowledges that the small sample size might affect the ’robustness’
of the results for investigation of audio description usage.
43% of responders commenting on audio description found the service difficult to use (40%
found it easy), and it seems overall audio description services were harder to set up and use
than caption services.
What do you think? Do you use the Able service? Considering that the results of this survey
are to inform their future strategies and planning, do you think enough weight has been
given to the low vision service they provide?
Across the ditch in Australia, audio description was trialled on Australian TV in 2012.
Following the trial, no regular service was instated. This has led to Vision Australia lodging a
discrimination complaint against a handful of major TV networks with the Australian Human
Rights Commission in February this year. Vision Australia believes that the lack of
commitment to an audio description service such as those enjoyed in other countries (for
example in the UK and here in NZ) is providing a discriminatory barrier to the 350,000
Australians who are blind or have low vision
A Turn About the Grounds
By Zoe Hill
Autumn is a lovely time for walking. The heat has vanished, the leaves are turning, and the
light is gentle. Before the harshness of winter sets in it is a good time to set up a walking
routine.
If you are uncertain about the terrain in your neighbourhood, consider asking someone to
help you devise a suitable course that you could familiarise yourself with over time. It could
be that they only need to come with you a certain number of times until you feel confident,
or you could set up a standing arrangement.
If going solo is not your eventual aim, then look up the many walking groups available
around New Zealand. Some are for Blind Foundation members only, some are targeted at
certain age groups, some are quite serious, and you’ll need to check the frequency of
meetings. However if you start your research with a website such as
www.walkingnewzealand.co.nz, or contact the Blind Foundation near you, you will get an
idea of what’s available in your area, and what kind of walking group would suit you best.
If the wind and rain bother you, then you could also make enquiries at your local shopping
mall as to whether they offer ‘Mall Walking’ groups. Lynn Mall in Auckland have a very
lively and successful group of mall walkers that meet twice a week early in the morning
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before the mall opens. They walk the mall in the peace and quiet before the day starts, and
are blessed by being protected not just from the weather, but from normal hazards that can
meet walkers on the streets, especially if they have low vision. The Lynn Mall walking group
welcomes mums with prams, the elderly and those with disabilities. Each walking session is
led by a personal trainer, so the walkers are in safe hands. They meet each Monday and
Wednesday from 6.45am until 8am. The mall is one level too, so you don’t have to worry
about stairs.
However you choose you stroll, establish a routine before winter sets in. If your walk isn’t
long, it doesn’t mean it’s not of benefit to you. A short stroll around the block is still good.
You could always add small (1 kilogram and upwards) arm weights to increase your fitness,
or the small weights that strap on to your ankles. Of course, don’t forget to consider
whether you need to take a torch just in case, or a rain jacket with reflective panels on it or
high visibility clothing or accessories.
If you ever get stuck without a torch and you have a smartphone, remember they come with
reasonably strong lights of their own. For example, on my Samsung phone there is a
selection called ’Assistive Light’ which shines a bright LED light out of the phone.
Walking is usually enough to keep up winter fitness, so why overdo things I say!
Gordon Sanderson - Otago’s Renaissance Man Retires
By Fraser Alexander
Long-standing friend and supporter of Retina New Zealand and well-known University of
Otago academic Associate Professor Gordon Sanderson is retiring at the end of this year. On
Tuesday 10 March, the Department of Ophthalmology at the University of Auckland
celebrated Gordon's career by holding a half day seminar in his honour, with the theme
being "Advances in ophthalmic medicine and surgery over the past forty years, with
predictions for the future.”
Respected among our Otago members, and nationally for his significant contributions in
fighting for publicly-funded comprehensive, accessible low vision rehabilitation services,
Gordon has given 42 years of distinguished service to the Department of Ophthalmology at
the University of Otago and to Dunedin Hospital. In addition, Gordon has educated
ophthalmologists throughout New Zealand and Australia by organising hugely successful
annual RANZCO exam preparation courses.
Always generous in his voluntary contributions in favour of a better quality of life for blind
and sight-impaired kiwis, Gordon served as Chairman of the Royal New Zealand Foundation
of the Blind, as a Director of the New Zealand National Eye Bank and as a member of Retina
New Zealand’s Scientific and Medical Advisory board. Awarded Honorary Fellowship of
RANZCO, in 2014 Gordon did the academic ophthalmology community proud by winning the
Prime Minister's Supreme Award for Sustained Tertiary Teaching.
The presence of around 60 well-respected and appreciative colleagues, former students, coinvestigators and beneficiary organisations and the schedule of seminar speakers attested
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to Gordon’s remarkable influence in advancing patient outcomes.
Associate Professor Bruce Hadden commenced proceedings with “Eye care and academia in
ophthalmology since 1975.” In an entertaining address, Bruce focussed as much on the
personalities as the topic itself. Rapidly stepping the audience through the notable and the
notables, Bruce’s story started with Otago University’s early academics Sir Lindo Ferguson
and Rowland Wilson and included Professors John Parr and Barrie Jones, and world
innovator Tony Molteno before concluding with the last decade and the acceleration of
basic eye research under the umbrella of the New Zealand National Eye Centre.
Associate Professor Philip Polkinghorne followed with an account of “Forty years of
development in vitreo-retinal surgery and future prospects”. Embracing the light-hearted
atmosphere, Phillip described his retinal surgery experiences “I have spent half a life fixing
half of them”. Highlighting Gordon’s predecessors as innovators that inspired Gordon’s
approach to research and treatment, Phillip cited Otago ophthalmologist; the late Dr Barrie
Jones (1921-2009).
Jones not only revolutionised the way ophthalmology is taught, but also brought the gift of
sight to thousands in developing countries. He transformed the relationship between
clinicians and researchers. He insisted on all trainees using the operating microscope, thus
spawning a new generation of micro-surgeons, and encouraged subspecialisation in every
branch of ophthalmology.
He was passionate about teaching and was noted for coining memorable phrases. The
indiscriminate mixing of ocular secretions between members of a family which spread
trachoma he described as "ocular promiscuity", while an "ocular condom" was a hat with a
mesh around it to prevent flies reaching the eyes. He briefly gained the nickname "the pox
doctor" when the contraceptive pill was introduced in the swinging '60s and he advised
condom use to help prevent the spread of a Chlamydia organism involved in transmitting
eye infections.
In a succinct and positive address, ocular geneticist Dr Andrea Vincent of the University of
Auckland described “How the new genetics has transformed perception of eye diseases”.
My interpretation, assisted by Dr Google follows. The Human Genome Project, which
mapped and sequenced all human DNA, has dramatically accelerated efforts to uncover the
genetic mutations responsible for eye diseases. Ophthalmic genetics researchers enthuse
about the field, its progress so far and its potential for forever changing how ophthalmology
is practiced.
As molecular genetic tools advance, we will be able to more clearly attribute diseases to
particular mutations as opposed to a collection of clinical observations. There are several
legal, ethical and medical issues emerging as a result of recent advances in our
understanding. Patient protection and confidentiality questions will be important and will
have diverse implications for patients, clinicians, insurers and employers. Meeting Gordon
in 1993, Andrea suggested his persona as “a ladies man” who is always keen to take people
on in an arm wrestling dual has survived the 40 years of his career.
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Andrew Sangster, President of the NZ Association of Optometrists titled his contribution
“Optometry's changing role in eye care” and began with his observations of how Gordon’s
identity traversed a wide range of organisations such as the Blind Foundation and Homai
college, the eye bank and his pioneering work in ophthalmic education. Andrew
concentrated on advances in lens technology over the last 40 years and the journey through
to photochromatic lens’s offering patients maximal results in almost all environments.
Humorously suggesting Gordon was influencing optometry teaching before photography
had been invented, Andrew gave an account of optical correction from the first bifocal
lenses through adjustable focus and progressive lenses, chromatic lenses and
polycarbonate lenses through to today’s relatively safe, low cost, easily produced and high
optical quality Plastic lenses which feature anti-reflective coatings.
Master of ceremonies Professor Charles McGhee spoke about “An epoch of unparalleled
progress in corneal transplantation”. Amusing Gordon-related anecdotes included
lamenting how early NZ ophthalmology academics had the convenience of a chauffeur
(Linda Fergusson) and how facilities were so limited in the late 1990’s that Charles met
Gordon in corridors and lifts as there was nowhere to meet. Charles asked the question
“what has Gordon not had a finger in the pie of?” and suggested he could go by the
pseudonym “Gordon the goldfinger, agent 006, licence to mediate” and concluded with the
affirmation that Gordon indeed appeared to have an uncanny knack of finding himself
surrounded by beautiful women.
The cornea is the transparent front part of the eye that covers the iris, pupil and anterior
chamber. A transplant uses tissue taken from a recently deceased individual and the first
cornea transplant was performed in 1905 by Eduard Zirm (Czech Republic). Charles gave an
account of how advances in surgical microscope technology enabled surgeons to have a
more magnified view of the surgical field, while advances in materials science enabled them
to use sutures finer than a human hair. More recently, stem cell techniques have produced
corneas that can be transplanted. Cells are removed from a healthy cornea. They are
collected and, through laboratory procedures, made into five to ten layers of cells that can
be stitched into a patient's eye. The stem cells are placed into the area where the damaged
cornea tissue has been removed. This is a good alternative for those that cannot gain vision
through regular cornea transplants.
Louise Moffatt, Manager New Zealand Eye Bank spoke on another initiative benefiting from
Gordon’s expertise and generosity. “Eye Banking: 25 successful years in New Zealand” was
the topic and Louise explained why the establishment of eye banks have been Instrumental
in the success of cornea transplants. Louise described a wonderful NZ success story in
accepting and meeting the challenges involved with coordinating the distribution of
donated corneas to surgeons, as well as providing eyes for research. With hospitals and
hospices providing most of the tissue, last year 320 corneas were provided to surgeons.
In the most humorous tribute, if at times a little effusive and decorous, Professor Gerard
Sutton, University of Sydney skilfully compared Gordon, the Renaissance man to a number
of world history’s most notable renaissance men. The chronological journey leading to
Otago’s renaissance man started with Jesus of Nazareth, the Messiah, the charismatic
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healer, the sage and philosopher who once performed the miracle Healing of a blind man in
Bethsaida by mixing saliva with dirt and spreading the mud on the blind person's eyes
enabling him to see.
The next early form of the anatomically modern Otago Renaissance man was Leonardo da
Vinci (1452 -1519), perhaps the most diversely talented person ever to have lived. It might
be a stretch to closely parallel Gordon’s talents I thought … the great Italian polymath,
painter, sculptor, architect, musician, mathematician, engineer, inventor, anatomist,
geologist, cartographer, botanist, and writer but alas, I hadn’t heard Gordon’s reply yet had
I?. Somehow Professor Sutton did deliver a compelling case in appraising Gordon’s
unquenchable curiosity and inventive imagination. Often not acknowledged, Leonardo also
made important discoveries in anatomy, civil engineering and optics – sound familiar?
Predictably enough, the next Gordon Sanderson, Renaissance man precursor was Italian
adventurer and author Giacomo Casanova (1725–1798). Casanova demonstrated a quick
wit, an intense appetite for knowledge, and a perpetually inquisitive mind. Moving to the
more contentious and exotic angles of optical incidence as it were; Gerard spoke of
Casanova’s famed, complicated and elaborate affairs with women. A student of law, moral
philosophy, chemistry, and mathematics with a keen interest in medicine, Casanova’s
gambling habit became firmly established. In search of a new profession, coincidentally,
Gordon and Giacomo became military officers. I wonder if what followed later applied “led
the life of a nobleman, dressing magnificently. Becoming an alchemist then a spy before
losing all his ingratiating features.
It was time for the crescendo, the denouement …the final reply Gordon titled “Reflections
on a life in optometry and ophthalmology in Aotearoa/New Zealand”
A most entertaining montage of photos depicting “a roller-coaster career” was presented. It
began with schooling in Scotland leading to a refined appreciation of porridge haggis and
whisky, included recalling fond memories of the emergence of mini-s skirts in the swinging
60's and finishing with “theme of my life” moment that summed up as a man “being led
down the garden path- there is always a con-man around”. All delivered in an endearing
dead-pan self-deprecating style.
Meet a Member: Judy Campbell
By Judy Campbell
There must be something wrong. Very slowly I became aware that the world was looking
somewhat blurry with a hazy atmosphere floating between me and the object I was
looking at. There was no sudden change, just an awareness of subtle vagueness of outlines
and shapes of the things around me. I was still driving quite happily, and was able
to continue doing everything I wanted to, but it was time to mention it to my Doctor.
I went straight to the specialist, and had scans, photographs, dilation of pupils, and so on.
The verdict? Macular Degeneration, and the Wet one at that. The capillaries at the back of
my right eye were leaking fluid and distorting the various layers at the back of the eye,
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causing a blank area in the centre. We left it for three months and then repeated the tests
to see if things were changing during that time. Sure enough a little haemorrhage had also
occurred.
I was to have Avastin injections into the right eye every few weeks to stop the deterioration
continuing. What a thought! I had visions of my eye going pop and all the jelly spilling out
everywhere. It was with much apprehension that I went for the first appointment, however
I need not have worried. I joined the group in the waiting room, and was dressed up in a
blue robe, a head covering and covers over my shoes. A ride in a wheelchair to the theatre
was a new experience for a very fit and active 74 year old. My eye had anaesthetic drops put
into it, followed by thorough dowsing with antiseptics and iodine. Next came an injection of
local anaesthetic, then the Avastin injection itself, all in a matter of 10 minutes. Following
another ride in the wheelchair, a cup of tea and a couple of sandwiches and that was it.
This routine went on every four weeks, then six weeks for quite some time, but the eye
continued to deteriorate, so the decision was made to give up on that eye and concentrate
on the good eye to hold it and keep it stable for as long as possible.
In 2010 I was visiting family in Australia, when my daughter Bronwen updated her world of
technology with not one iPad but two! She showed me so many things that I could do. I was
amazed. The first thing I did was to paint a picture of the lovely sunset from the window of
the plane coming home from Tasmania with my grandson.
Could an iPad do that? It seemed as if there was nothing it could not do: Emails, Skype,
Music, Stories, Books. The possibilities were endless. It opened up a new world to me, and
when Bronwen saw this, there was no stopping her. On our way to the Airport to fly back to
NZ she stopped off on the way at the Shopping Centre and bought me my own iPad. We
arrived at the airport, had a coffee, and she downloaded three complete books for me,
which I read all the way home to NZ.
The iPad became my constant companion and travelled everywhere with me. I could see
everything so much more easily, as the dark lettering stood out so clearly against the white
light of the screen. Added to that was the ability to use my fingers to enlarge the script and
even read in the dark if needs be.
It was just magic, and so easy to use. If I could use one, anyone could. My photos were
downloaded on to the iPad, cropped, put into albums and enjoyed on the full screen; Stories
and letters were written and emailed, information on any topic was instantly available,
Skype kept me in touch with family overseas, and the world was at
my fingertips.
Meanwhile, my right eye deteriorated with the loss of central vision, with only the
peripheral remaining. It was at this point that I realised I was unable to sew any more. What
a blow that was. Having been sewing for over 50 years, making many of my own clothes as
well as most of the children's clothes, suddenly I was unable to even thread a needle or
distinguish the colour of thread against the background material. I remember lying down on
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the bed and having a good cry as the reality hit me. However, feeling sorry for myself wasn't
going to make any difference, so I pulled myself together and resolved to concentrate on
what I could do instead. There was always a way, and people were very willing to help in any
way they could.
My left eye was still reasonably functional at this stage, and it was decided to concentrate
on holding and slowing down the deterioration as much as possible with injections only in
the left eye. This succeeded very well for a couple of years, but in the meantime the blurry
film of a cataract started to appear.
It was at about this time that another magical lifesaver appeared, a wonderful magnifier
with an internal light. It was the width of a column in a magazine or newspaper. I was able
to simply slide it down the column or across the page of a book, and was able to read, with
its 2.2 enlargement. This gave me back my reading ability and I carried it everywhere with
me.
I was able to cope and continued enjoying painting, changing my style somewhat, as I could
no longer do fine detail, or see any drawing I had done as preparation. I simply went straight
in with the brush, wet on wet, and achieved some lovely atmospheric effects in the process.
I couldn't paint fine detail any more, as I couldn't tell when the brush was going to hit the
paper, so resorted to a fine black pen, doing flocks of birds or tree trunks and branches. I
had always wanted to paint more freely, so, thanks to my lack of vision at last I was able to
do it.
There were still many challenges in everyday life, things that would never occur to you
normally. Putting in a three pin plug was a real challenge, as was pouring a cup of tea, or
cutting with scissors... as with only one focal image and not two, I lost my sense of three
dimensions. Judging the depth of steps, facial recognition, handling money, reading signs
and prices, bad lighting, lack of contrast… and so it goes on.
Even the simple act of going out for coffee has its problems. I can't read the labels or prices,
or recognise what is sweet and what is savoury. On one occasion I was serving myself at a
pot luck dinner. Why couldn't I get the chicken casserole onto my plate? It kept falling off
the spoon all the time. The problem? I was holding the spoon upside down and didn't know.
On other occasions I manage to spear a piece of food onto my fork and then find that it is
far too big to fit it in my mouth.
Suddenly, after returning from a trip last year, I found that I was unable to either read or
write on the iPad, only seeing perhaps the last two letters in a word, with everything else a
white blur. I tried to finish a painting, simply to add a few bare trunks of trees and branches.
Fortunately I used the black felt pen on a blank piece of paper, and the one black stroke was
invisible, unless I glanced sideways. This painting was of a bush fire, but I will now call it 'The
Unfinished Symphony'. This is probably my last painting, after so many years of pleasure.
At least I can still enjoy seeing other people's paintings. I feel very fortunate that I am still fit
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and healthy, and able to see the big picture. I can still wake up in the morning and see a
lovely sunrise, or a sweep of coastline with the mountains in the distance, the beauty of the
bush, and the light and shade on the hills are a joy to behold, and every day holds new
experiences and challenges.
Retina in a Petri Dish – The Kiwi Cooking the Recipe
By Zoe Hill
Prof. David Ackerley is a New Zealander working with artificial retina, along with an overseas
team at John Hopkins University in America. Midway through last year it was announced
that retina cells had been successfully grown from human stem cells, complete with
photoreceptor cells that could react to light. Prof. Ackerley (Victoria University, Wellington)
is the man dictating the recipe of enzymes to the experiments on the artificial retina.
The successful growth of an artificial retina in a petri dish is a fantastic step forward,
however Prof Ackerley’s role is now to try and destroy it! His part of the research process is
to introduce disease processes to mimic the progression of diseases of the retina. Ackerley
states “Now you've got it working, the question is how do you make it stop working in a way
that mimics degeneration.. the key thing is you want to leave most of the retina intact." This
work paves the way for drugs to prevent or correct such diseases to then be tested on the
diseased petri dish retinas.
Professor Ackerley is a microbiologist by training, and is therefore well used to working with
bacteria. He says that ’bacteria have quite different DNA to people, and I’m particularly
interested in one bit of code that they have that make an enzyme that humans don’t have.
That enzyme does useful things for the bacteria, but it also has the side property of being
able to turn a particular antibiotic from something that’s safe and harmless into something
that’s really toxic. We’ve been able to build a whole bunch of antibiotics that target bacteria
in that matter, that target that little bit of code that bacteria have that we don’t have. If you
can take that bit of code and put it inside a different cell, then suddenly that new cell
becomes really sensitive to the antibiotics as well.”
This concept is part of the first step - to manipulate the photoreceptor cells into being
diseased. Then they embark on ‘high throughput screening’ for new drugs to treat the
disease. Fingers crossed!
Research by the Patients of the Disease
By Zoe Hill
There is often a sense of ‘us and them’ when it comes to patient/health professional
relationships. Sometimes there can be a gulf of misunderstanding, however well intentioned
either party is. So too with the developers of blind technology. I have mentioned before
that it often seems like the latest blind technology gadget was originally just an odd spin off
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from developing another product entirely (‘oh look - it vibrates! How can we use this?’).
In the news recently there were two examples of these two worlds of patients and
researchers and developers mingling, and I think this will only bring about positive changes.
Firstly, in news out of Vancouver in March, a young woman called Ruanne Lai has won a
research award from her role in researching whether Valproic Acid (VPA) has a role in
treating Retinitis Pigmentosa. The award was given at the International Symposium on
Retinal Degeneration in California last year. Ruanne has RP herself, as does her mother.
There are two ‘Phase 2’ clinical trials underway for this treatment currently, although it is
not fully understood how VPA is actually helping, hence Ruanne’s research project.
According to the Foundation Fighting Blindness, her results are surprising, as they show that
“although VPA has the ability to slow down the progression of RP, it also has the ability to
speed it up. Critically, her research also shows that the underlying genetics of the disease
can determine whether VPA will be helpful or harmful. This is likely to be the case for other
RP treatments as well, so it will be important for researchers to consider genetics in clinical
trials, and for people with RP to be genetically tested.”
Here in New Zealand, our latest recipient of the Retina NZ Summer Studentship is Alix
Coysh, who completed her summer studentship studying under Dr Andrea Vincent. Alix has
RP herself. We wish her all the very best in her future studies, and hope to hear more from
her in the coming years.
At the other end of the age scale, a 91 year old woman has landed her ‘dream job’ as a tech
designer in Silicon Valley. Barbara Beskind had dreams of becoming an inventor, but that
dream was quashed by the fact that engineering schools in her time were not open to young
women. Her life took a different path, but she never gave up her inventive spirit.
Two years ago she decided to apply for a role at a design firm, and was accepted. She is
now a valued member of the staff, and attends work on Thursdays, spending the rest of her
time in her Retirement Home. Of her role in the company, she says “They can't put
themselves in the shoes of the elderly. People who design for the elderly think they need
jewelled pill boxes or pink canes. We need functional equipment." Barbara has Macular
Degeneration, so here’s hoping she can influence design of products with a view to their use
by people with low vision. That is what we need, advocates on the inside and strong
collaboration. How’s everyone’s CV looking?
Spotlight on Low Vision: Banking Update
By Zoe Hill
As a follow up to the banking story that ran in this newsletter last year, the Royal Bank of
Scotland has launched a new initiative in conjunction with Great Britain’s Royal National
Institute of Blind People (RNIB). RNIB have instituted a new programme called ‘RNIB
Approved’, which is a standards programme that attaches an ‘approved’ status to certain
products that achieve a satisfactory standard for a blind or partially sighted person to use
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easily.
Where the Royal Bank of Scotland comes in to the picture is that they have released
standard RNIB bank cards that come with a number of accessibility features built in as
standard. For example, there is a notch on the bottom right hand corner of the card to help
with orientation, and there are Braille markers to help a customer identify if it is their
savings or debit card. The cards are the first products to reach RNIB Approved status, and it
will be exciting to see what sort of products also achieve this status in the months and years
to come, and also what other partnerships can be struck between commercial companies
and the RNIB to make products more accessible.
Recipe: Asparagus Dip
Departing briefly from the Eye Health Cookbook, this is a recipe that I think you all need on
hand for the winter. It’s comforting, addictive, and perfect to share during an All Black’s
game ... all that you need in winter food choices really. I’m sure my sister won’t mind me
sharing her secret!
Ingredients:
250 grams cream cheese
1/2 cup sour cream
1/2 cup mayonnaise
1 can of asparagus (drain, reserve liquid)
2 tsp curry powder
1 tsp mustard powder
Method:
Place all ingredients in a blender and blend it to smithereens. Loosen the mixture with the
asparagus liquid if required. Pop it in the fridge for 30 minutes, clear your schedule, sit down
and enjoy! Serve with corn chips. Warning: highly addictive.
Regional News
KAPITI:
When: 3rd Monday of the month
Where: Kapiti Community Centre
Recently, we have had someone from the local Citizens Advice Bureau speak about the ‘Do
Not Knock’ stickers to deter uninvited salespeople from calling, and about the fact that
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appliance extended warranties do not offer people much more protection than is available
under the Consumers Guarantee Act.
A Council Staff Member addressed us about the Kapiti Long Term Community Plan and
suggested that it was important for people with disabilities to make submissions on issues of
importance to them. In our case it would be about public transport, footpaths, accessibility
of Council facilities and street lighting. We also had a speaker from Age Concern talking
about Keeping Ourselves Safe. We would love to welcome you to our support group.
Elizabeth East (04) 299 1800
TAURANGA:
When: 1st Saturday of the month, 10.30 till 12pm
Where: Tauranga Library
Sara Ash (07) 570 0917
OTAKI:
When: March 2015
Where: Citizen’s Advice Rooms, Main Street, Otaki
Sue Emerali - 0800 569 849 (ext 2)
DUNEDIN:
When: 4th Wednesday of the month, 1:30pm
Where: Dunedin Public Library, 4th floor Dunnington Suite.
Lynley Hood (03) 4877 686
WAIKANAE:
When: 1st Monday of the month
Where: Cameo Rooms (Pop In Centre) on Mahara Place.
Sue Patterson (04) 293 5174
HAMILTON:
Mike Smith - 0800 569 849 (ext 3)
AUCKLAND:
Fraser Alexander - 0800 569 849 (ext 1, evenings only)
NEWLANDS:
Gael Hambrook - (04) 970 3575
CHRISTCHURCH:
Petronella Spicer - 0800 569 849 (ext 4)
Retina NZ has support groups in various locations around the country. These groups are
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open to anyone with any degree of sight loss or their family and friends. Most of our groups
meet monthly, and the people who attend find the advice, companionship and practical
support very valuable. If you would like to explore the possibility of starting a group in your
area, please contact Sue on 0800 569 849 (ext 2).
Retina NZ details
Editor: Zoë Hill ([email protected])
Membership Officer: Petronella Spicer ([email protected])
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.
What format of newsletter would you like?
(Members may receive an email version in addition to either a print or CD copy at no extra
cost) 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.
CD or Print: If you would prefer to receive it as an audio CD or in large print please phone
0800 LOW VIZ (0800 569 849 Ext 2 or 4).
Publications:
A range of helpful brochures and books are available free of charge to our members. Please
contact us via [email protected] or by phoning 0800 LOW VIZ (0800 569 849 Ext 2).
Bulk orders are available to eye care professionals on request, however there may be a
small charge to cover postage to non members and businesses.
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.
Retina New Zealand Inc is grateful to the Blind Foundation for funding the printing of this
newsletter. Retina New Zealand would also like to thank the New Zealand Lottery Grants
Board for helping to fund this newsletter.
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