Charities Commission Reg. No 23240
The Newsletter of Retina New Zealand Inc
A Member of Retina International
Summer Newsletter February 2009 No 40
1. From the Editor
2. From the President’s Desk
3. Ironies, Headlights and Heroes: My RP Story
4. Report on the 15th Retina International World Congress
5. Research Abstracts from the Retina International
Congress: Genetics
6. Other Research: Oral Retinoid; Stargardt Disease
7. Genetic Testing
8. Snippet
9. Coping: Computer Vision Syndrome
10. Windows Screen Reader
11. Facebook
12. Microwave Ovens
13. Retina Australia Triennial National Conference
14. Branch Reports
15. Recipe
16. Book Review
1. From the Editor
2009 is a year filled with promise, further clinical trials for a variety of
eye conditions, stem cell research to prevent the progression of AMD,
and the promise for those of us who are members of the RNZFB of the
delivery of new talking book machines. Some of our members took
part in the trials of various versions of downloading the new digital
books and have been waiting for them to become available.
There are many websites which allow you to download digital and MP3
versions of books, some for free and many are able to be purchased
from a variety of web companies. If you know of a good website for
downloading books please share it with us.
At a recent members meeting held in Hamilton I was very surprised to
discover that many blind and vision impaired people are completely
unaware of the vast array of technology which is available to us. Those
of us who daily use equipment such as JAWS, Zoomtext, the Victor
Reader Stream, CCTVs, talking mobile phones or KNFB readers often
forget that equipment which is an integral part of our lives and often
our employment is often unknown by other people. A request has been
made to include information in the newsletter on some of the
technology which is available, along with computer hints as many of
our members are becoming more computer savvy. If you would like to
know more about a particular piece of equipment or software please let
me know and I will endeavour to print as much information as I can
gather about it in the newsletter.
One of the many valuable contacts I made while attending the
conference in Helsinki was with Asper Ophthalmics from Estonia.
They have provided an article for this newsletter on genetic testing for
retinal eye conditions, and I have published the abstracts of papers
from the conference which followed a similar theme.
A personal experience of RP by Peter Maiden, my report on my
attendance at the Retina International Conference, an article on
computer vision syndrome, and another on purchasing a microwave
are all included in this issue of the newsletter.
I received a very favourable response to the recipe which I included in
the last newsletter, particularly from the proof-reader, so have included
another in this issue. Please let me know if you feel this is an
appropriate inclusion in the newsletter.
Susan Mellsopp
editor@retina.org.nz
2. From The President’s Desk
In looking to the year ahead, it strikes me that our organisation is likely
to follow the course determined by the prevailing winds that shape the
forecast they call economic projection. The need to be efficient and to
sharpen our focus on our core purposes will be paramount as we
continue to do valuable work with resource levels that will remain
static at best. As you may be aware, Retina NZ is the product of many
selfless, dedicated and skilled people who provide their services
largely in a voluntary capacity. As such, we are well positioned to lead
the way in providing peer support, research information/collaboration
and advocacy services to you despite the environment of static
financial income levels we are expecting in 2009.
On March 15th in Auckland we hope to continue the recent success we
have enjoyed with our public meetings in Auckland. This meeting will
give members attending an insight into the ever growing campaign to
secure public funding for proven treatments for retinal degenerative
conditions. At no time in the last 10 years have I experienced such
momentum from medical professionals, service providers and patient
groups in lobbying decision-makers for meaningful public and private
funding of approved medicines. Many questions on the role of a
patient group in lobbying of course arise. It is important that Retina
New Zealand speak for our membership in a manner that reflects your
wishes. To this end, I encourage you to call or write to me and unleash
your views. There are some givens in all of this and among these is
the fact that the treatment funders won’t come to us asking what we
want, the number of available treatments and those seeking them will
rise sharply in the next decade, and the treatments now available will
be effective for some of us.
I would also encourage you to make plans to be on the Kapiti Coast on
September 26th for our first ever AGM in this beautiful part of the
world. Sue Emirali and other Kapiti Coasters are guaranteeing an
informative and entertaining day, and maybe night, so book that silver
canary and join us.
Hoping you are getting all the sun, surf and serenity you desire….
Fraser Alexander
President
Ph: 09 6388091
Quote: Many persons have a wrong idea of what constitutes true
happiness. It is not attained through self gratification but through
fidelity to a worthy cause: Helen Keller
3. Ironies, Headlights and Heroes-My RP Story by Peter
Maiden
Being diagnosed with RP did explain a lot of silly things that had
previously happened in my life. My family don’t laugh at me anymore,
or accuse me of over indulging when I can’t see the way up the steps at
night. I now know why the ball kept disappearing when I was playing
squash and my opponent lobbied it high. I know that knocking over
cups of coffee was more than just clumsiness because I didn’t see
them there.
Life must go on, despite the frustrations of RP and having to give up
driving. I am fortunate that I still have a degree of good central vision,
and have been able to continue to work.
There is a certain amount of irony in what I do for a job. Being a
strategic planning manager means I am charged with driving strategy
in the paint company I work for. One of the main parts of my role is
taking a broad view of the world and ensuring we have strategies in
place to successfully compete in the marketplace. A narrow focus is
not a good pre-requisite for this job, one needs to see the big picture
so all eventualities are covered. Another good attribute for this job is
being far sighted and able to think what might happen in 5 to 10 years
time.
Here am I with tunnel vision and not able to see in the dark, charged
with taking a broad view of the world, not having a narrow focus, being
far-sighted, and making sure we do not keep people in the dark. Ironic!
However, I look at having RP as a strength. Having a disability such as
RP does increase your overall awareness. It forces you to look around
and see what is going on, and importantly, what could go wrong and
how to avoid those situations if at all possible. These are all great
attributes for my job.
Working does have its problems. I don’t always want to make a great
thing out of being almost blind but I have always ensured that I have a
‘buddy’ or two who are aware of what I suffer from and who know at
times I do need some looking after, especially when going to new
places or doing new things.
Work functions or entertaining customers always seem to be held in
dark, crowded restaurants or bars. Several times I have just pointed at
the menu and said “I’ll have that”. It has always turned out ok. When
making a speech at some of the more formal functions there always
seems to be a few steps up to the stage and bright lights shining in
your eyes. Knowing things like this are going to happen does mean
you need to ensure you have a ‘buddy’ looking after you, you can’t
avoid the need no matter how embarrassing it might be.
Some amusing moments can eventuate from having a good buddy.
One instance was at a work team building exercise climbing up high
poles and walking across wire ropes and all those sort of dangerous
things. Doing that was ok, but the activity ended late afternoon and it
got dark rather quickly. The way back to the bus was fraught with
dangers like guy ropes, low fences and rough ground. My buddy at the
time was an attractive woman (with a kind understanding soul of
course) and she knew I needed help getting back to the bus which was
about 500 metres away. For her the easiest way was to guide me was
to just take my hand and lead me back to the bus. As we approached
the bus the driver turned on the headlights, which put Vicky and I
holding hands in the spotlight. Quick as a flash Vicky gave me a big
hug and a kiss and put her arms around me for the rest of the way back
to the bus. The initial reaction for those not in the know was ‘this is an
office affair’. People do jump to conclusions don’t they!
One needs heroes to provide inspiration. Mine include Tiger Woods,
Lance Armstrong, and Bruce Springsteen. You can see what some of
my interests are, but in their own way they are a source of inspiration
to me. Another of my heroes is Cally.
Cally is a dog, a cross-breed or sorts. She came to us from the SPCA
with one eye and only partial vision in her remaining eye. After a year
or so Cally suddenly lost her sight completely.
It was never
contemplated, but the family did say there was no way they would put
her down just because she was blind. That was good news for me
also, because when or if I go totally blind at least I was not going to be
shot!
Watching how Cally quickly adapted to blindness has provided huge
inspiration to me. She has no difficulty finding her way around the
house, even though we have stairs, and she always knows where the
food bowl is. When taken for a walk she confidently (and blindly) leads
the way puling on her lead. She obviously has complete trust in
people, hoping they will stop her before she falls over a bank or
similar. In some respects it is probably the same sort of trust that
those with guide dogs have in their dog, but in reverse. This is great to
see.
The only problem Cally has in the home is that she keeps bumping into
me, or I keep bumping into her. Not unexpected I suppose, but when
my wife told the vet about it he said: “tie a bell to each of them so they
can hear each other coming”. An idea never implemented.
So Cally has been an inspiration to me. Knowing I won’t be shot if I go
completely blind was comforting, but what Cally really showed me was
that if you just accept what has happened, as she did, you can easily
adapt to the new challenges ahead of you and live life as before, or
almost so. I hope my story has inspired you as well.
Peter Maiden is a member of Retina NZ and lives in Wellington
4. Report on the 15th Retina International World Congress:
Helsinki, Finland July 4-5 2008: Susan Mellsopp
I would like to thank Retina NZ for inviting me to attend the Retina
International Conference in Finland. It was a privilege and an honour
to represent you. I have made numerous contacts which will be
valuable for the newsletter, and I gained an insight into both the
structure, goals and vision of Retina International and the cutting edge
eye research which is taking place worldwide.
The social events were exceptional for networking, the day exploring
Finnish nature allowed us to explore a little more of Finland than just
Helsinki, and the food in Finland is stunning-you should try berry or
rhubarb soup!
The vision of Retina International is now shifting from the dream of
possible cures for inherited retinal disorders to one of supporting with
excitement the clinical trials for retinitis pigmentosa now taking place,
the development of gene therapies, and the registries of patients. A
huge financial input is required to bring these to fruition.
Concern was expressed that despite the cost new treatments were not
being utilised due to a lack of patient advocacy. Patients with retinal
disorders are often unaware of the modern treatments now available,
and they are not being offered in a timely manner.
I was interested in a discussion on the continuing education day
around ethics. Dialogue was around definitions, bioethics, genetic
testing, the right of refusal and information disclosure. Informed
consent needs to include and explanation of what data is to be used
for. As patients we need to question whether genetic research is
upsetting the natural order and what our beliefs are around stem cell
research.
Foresight from Dubai spoke about the high rate of RP there due to
consanguineous marriage. They are working with Professor Robin Ali
towards a readily available treatment.
At the General Assembly day the delegates rewrote the mission
statement to better reflect the new developments in research and
treatment.
Research in Practice was the theme of the scientific papers presented
at the conference. It was extremely unfortunate that some of the
papers which would have been of the most interest for Retina NZ
members were presented in Finnish with no translation.
At the opening session the President of Retina International, Christina
Fasser, spoke of the development of retinal organisations started by
patients who were determined to find a cure for inherited retinal
disorders. It is only 35 years since RP societies were formed in
Finland and the United States. Due to world wide co-operation we now
know there are over 150 genes involved in RP.
Among the papers I attended were those of Professor Andreasson who
spoke on the clinical diagnostics of retinal degenerations, Ruth Riise
on Syndromic RP, and a paper on the Argus epi-retinal devices. Stem
cell research is still in its infancy, mainly due to a number of technical
and ethical obstacles. It is hoped untimely delay will not stop research
advancements in this area. Animal models are being used in research
to try and discover what initiates the AMD response in the retina. It is
hoped to define early events in the disease process.
Day 2 began with a paper on how we see and why ophthalmologists
should listen to their patients stories. Describing our vision deficiency
can be difficult and adaptation to illumination can provide inaccurate
diagnoses. I then attended several ‘coping’ related lectures which
were translated into English, the most interesting being one on
cross-modality in the environment.
Professor Eberhart Zrenner explained the breadth of retinal
degeneration research being carried out in Europe at present. An
annual meeting is held in Potsdam to discuss findings. Professor
Zrenner also spoke about the sub-retinal implant.
The conference concluded with reports from Professor Robin Ali on
his clinical trials with patients with RPE65 and Dr Weng Tao on
encapsulated cell technology implants. The conference was summed
up by Dr Gerald Chader who said “we can see research turning into
practice”.
Personally, I hope this exciting research has some
application to more common eye disorders, and
conferences include surgical and other research into
disorders such as more on AMD, retinal detachments,
holes.
downstream
that future
other retinal
and macular
5. Research: Abstracts from the Retina International
Conference: Helsinki, July 2008.
Genetics and Molecular Diagnostics of RD Using DNA Chips:
Knowing Our Genes and Mutations: Professor Andreas Gai
Human retinal dystrophies show an unparalleled diversity. Genetically,
a disease phenotype in a family may follow any of the Mendelian
patterns of inheritance (autosomal dominant, autosomal recessive,
and X-chromosomal). In addition, mitochondrial transmission, digenic
and complex genetic mechanisms have also been described.
Clinically, ophthalmological symptoms and signs due to genetically
distinct entities may be largely overlapping. At the same time, patients
from the same family or those being apparently unrelated but carrying
the same mutation may be present with very different clinical pictures.
RetNet, a genetic database specialising in human retinal diseases, lists
26 different clinical entities caused by mutations of at least 193 genes:
142 already known and 51 whose identity is not yet defined. In
particular, mutations of 30 and 9 known genes may cause RP and
Usher Syndrome, whereas 12 genes implicated in these two conditions
have established chromosomal locations but their identity is still
unknown. According to the function of the encoded proteins, the 39
RP and Usher genes can be assigned to a number of different groups
such as structural proteins of the photoreceptors, proteins involved in
the phototransduction cascade, visual cycle (Vitamin A metabolism) or
intracellular transport processes.
Identification of the individual genetic defect is becoming more and
more important for every patient for it may provide confirmation of a
precise diagnosis, some information on the course and prognosis of
the disease, and define the pattern of inheritance including the disease
risk of family members. Knowing the genetic defect is also a
prerequisite to devise targeted forms of therapy. However, the
immediate use of the results provided by the genetic research for
patient care has been hampered both by the large number of disease
genes and the extensive sequence variation occurring in the majority
of the retinal dystrophy genes. Many of the disease mutations are
unique (‘private mutations’), they occur in a single family or in a small
number of families.
While this diversity caused serious obstacles in terms of finances,
turn-around time and labour intensity in the past, these problems can
now be overcome in part by high throughput (array/chip) technology
developed during the past decade. The mutation detection chip is
designed to pick up sequence variants that have been identified in
patients previously. Chips contain gene mutations according to the
disease phenotype expected and the pattern of inheritance. Since
these two variants cannot always be defined with certainty, multiple
analyses may be necessary. Although this type of array has a number
of limitations, this approach offers an excellent first pass opportunity
of genotyping patients in a rapid way at an affordable cost. The
sequencing chip scans a large number of genes and is able to detect
known and not yet reported mutations. Pro Retina Germany is
supporting a consortium that brings together geneticists and
ophthalmologists to develop a sequencing chip for routine
diagnostics. RetChip 1.0 should provide detailed information on
individual sequence variants of a total of 72 genes implicated in the
pathogenesis of various forms of RP, Lebers Congenital Amaurosis,
macular dystrophy, Usher Syndrome and Bardet Biedl Syndrome.
Genetic Counselling and Gene Tests: Helena Kaariainen,
Helsinki.
Genetic counselling is a communication process that deals with the
occurrence, or risk of occurrence, of a genetic disorder in the family.
The process involves helping the individual or their family to
understand the medical facts of the disorder, appreciate how heredity
contributes to the disorder, and the risk of recurrence in specified
relatives. Patients are given options to deal with the risk of recurrence,
to use this genetic information in a personally meaningful way that
promotes health, minimises psychological distress, and increases
personal control. They can then choose a course of action appropriate
for them and act in accordance with their decision, and make the best
possible adjustment to the disorder in an affected family member.
The content of genetic counselling varies according to the wishes of
the patient, some want detailed medical data while others want support
for life choices.
In retinal disorders genetic testing may be part of the diagnosis to find
out the reason for a visual problem. Finding the mutation may be the
only way to clarify the diagnosis. However, a genetic test is not always
possible and the diagnosis and subsequent genetic counselling is
based on clinical findings.
Sometimes gene tests are used to detect a carrier, predicting a future
disease, or making a prenatal diagnosis. These tests have profound
implications for the individual and their family. Appropriate genetic
counselling by a professional in the field of genetics should always
precede testing. The implications of the tests should be explained in a
post-test genetic counselling session.
Gene Therapy of USH3: Professor John Flannery
Major progress has been made in understanding the molecular causes
of Usher syndrome. It was initially categorised by its clinical
appearance as two distinct types of autosomal recessive
deaf-blindness: Usher 1 patients had profound congenital
sensorineural deafness, vestibular dysfunction and RP. Usher type 2
patients had moderate congenital hearing impairment, normal
vestibular function and RP. A third USH subtype was later identified as
clinical ophthalmologists noted progressive hearing loss in some
patients previously diagnosed with RP. At the same time molecular
geneticists identified a gene defect, CLRN-1, a causative gene distinct
from the other Usher subtypes. Usher type 3 is now universally
accepted as a separate disease subtype characterised by progressive
(non-congenital) hearing loss, variable vestibular abnormality and RP.
Usher 3a is relatively rare however it represents 40% of Usher patients
in Finland and in Ashkenazi Jews in Europe and the US.
The structure of the clarin-1 gene is now known and its coding
sequence comprises 699 base pairs. The protein encoded by the gene
is a tetraspanin, with a hypothesised function in sorting and trafficking
proteins to the rod photoreceptor outer segment through the
connecting cilium. The small size of the clarin coding sequence
makes it a candidate for gene therapy because it can be safely
delivered using the recombinant Adeno associated virus technology.
A potential treatment will be to deliver a normal copy of the mutated
clarin-1 gene to the photoreceptor cells using AAV vectors. Usher 3a
is the slowest progressing of the three types of Usher syndrome which
increases the time window into which a gene replacement therapy may
be applied.
6. Other Research
Oral Retinoid Enters Trials
A synthetic retinoid has begun a Phase 1 safety study. The orally
administered compound is designed to replace 11-cis-retinal, a part of
the retinoid-rhodopsin cycle that is essential for visual function in
Lebers Congenital Amaurosis sufferers.
There is currently no
treatment for LCA, but the hypothesis of synthetic retinoid
replacement therapy has been proved to be sound in earlier trials in
rodent models. The open-label, single centre study will assess the
safety and tolerability of the compound and will assess six separate
dose strengths.
Stargardt Disease, Cone-Rod Dystrophy and Vitamin A
The Foundation Fighting Blindness’s Scientific Advisory Board has
recommended that people with recessive Stargardt disease or
cone-rod dystrophy, most of which are caused by mutations of the
ABCA4 gene, should avoid intake of vitamin A beyond the
recommended daily allowance. Research has indicated excessive
consumption of vitamin A can potentially accelerate vision loss and
retinal degeneration in the above conditions and other retinal
conditions caused by variations in the ABCA4 gene.
The recommended daily dose is approximately 3000 IU for men and
2333 for women. People with these conditions should also consider
avoiding excessive sunlight exposure.
Specifically, the mutant ABCA4 gene does not function in the part of
the visual cycle where vitamin A is shuttled back and forth between the
photoreceptor cells and a neighbouring cell layer called the retinal
pigment epithelium (RPE). There is a build up within the RPE of a toxic
vitamin A derivative called A2E which collects as yellow-white
deposits called lipofuscin. Taking excessive vitamin A could promote
additional accumulation of lipofuscin within the RPE cells.
Quote: There is no better exercise for the heart than reaching down
and lifting people up: Anon
7. Genetic Testing: The Key To Information By Eva-Maria Laas
of Asper Ophthalmics
Genetic testing is a promising and exciting, yet controversial and
demanding subject, for all those involved. Here is a brief overview of
the milestones and recent achievements in ophthalmogenetic testing.
Current State of the Art of Genetic Testing
The genetic information hidden in our DNA can give valuable
information about one’s pre-disposition to health issues as well as
about the nature of disease conditions. The current state of research
gives a lot of information about possible disease-causing gene
combinations and this can be combined with information from patients
screened for a certain disease. The aim is always to find a cure and
give more quality to the life of individuals. The current technologies
are well suited for screening a certain number of known changes in the
patient’s DNA. Sequencing, or determining the base-pair in each
position of the genome, when we know what to look for, gives a way to
optimise and hasten the result acquirement.
Usage of the Results
The result of the testing, i.e. the information about one’s genetic
make-up, is valuable for the person from a perspective of
self-perception as well as the research purposes. Today the selection
of treatment options that are based on different genetic make-ups of
conditions are still taking their first steps. The advancement of
research is well ahead of drug development due to the strict criteria as
well as extremely high development costs connected with the approval
of new treatment options. At the same time, the logic is that once
genetic testing becomes a standardised part of healthcare the
development of medications for people with different genetic makeup
would make the process faster and more economical. If we know that
for particular diseases there is certainly a genetic connection with
drug response, there is then no sense in trying different medications
before finding the right one by trial and error and risking an adverse
drug response. Patients today who have the option of taking a DNA
test have the unique possibility of contributing to research and a
future cure.
Historical Background of DNA Testing
There are many laboratories around the world that conduct genetic
screening but only a few that test for genetic eye diseases. This is due
to the fact that only a few technologies are well suited for the specifics
of genetic retinal disorders. Asper is a spin-off company of Tartu
University with the mission of providing genetic testing for retinal
disorders. Asper’s long experience in developing panels for genetic
screening since 2001 is due to the symbiosis of two world renowned
Professors, Professor Metspalu from Tartu University and Professor
Allikmets from Columbia University. The tests have been developed in
co-operation with scientists from all over the world.
Patient VS. Research
We live in exciting times when personal genomics are about to bring
the fruits of biotechnology labs into the hand of every single person.
People affected by eye conditions caused by genetic variations have
the possibility of acquiring specific information on their eye condition.
Ophthalmogenetics has an important role to play in the world of
genetic research thanks to the empowerment of all those involved.
8. Snippet
Booking with Air New Zealand
Air NZ has made some changes to its website. If you are booking
online and are having any difficulties please phone them on 0800 35 22
66. Please also note there is a drop down menu where you can register
as a blind passenger or as travelling with a guide dog. The staff at Air
NZ are very helpful at all times.
9. Coping: Computer Vision Syndrome
Computers have equalled the phone in becoming one of the most
useful pieces of equipment. Visual symptoms are beginning to occur
in 75–90% of people who spend a large amount of their time in front of
a computer screen. Computer Vision Syndrome is defined as ‘a
complex of eye and vision problems related to near work which are
experienced during or related to computer use’... The symptoms can
vary but include eyestrain, headaches, blurred vision, dry and irritated
eyes, difficulties re-focusing, neck and backache, light sensitivity and
double vision. Many people have marginal vision disorders which do
not cause symptoms when performing less demanding visual tasks.
Our eyes don’t process computer screen characters as well as they do
traditional print. Printed materials have well defined edges and screen
characters don’t. Our eyes work hard to remain focused on screen
characters and to temporarily relieve stress our eyes drift and then
strain to refocus. The constant muscle flexing causes fatigue. Other
types of screens such as electronic toys and cell-phones also cause
eyestrain.
There are a number of things you can do to alleviate CVS. If you
already have eyesight problems make these adjustments now.
Use proper lighting. Bright lights usually exacerbate the problem. Use
blinds or curtains to limit the amount of sunlight and install lower
intensity bulbs. Use only one type of lighting, either natural or bulbs.
Give yourself time to adjust to the softer lighting. If you can’t control
the lighting effectively consider using tinted glasses when working at
your computer.
Reduce environmental glare. This is reflected light that bounces off
walls and computer screens. Often you do not realise you are
compensating for it. To reduce glare paint bright walls a darker colour
and use paint with a matte finish. Install an anti-glare screen or glare
hood on your computer. If you wear glasses consider applying an
anti-reflective coating to the lenses.
Use proper computer settings. One of the simplest ways to reduce
eyestrain is to adjust your monitor’s brightness and contrast settings.
There is no right or wrong setting, just experiment until you are
comfortable. If the background gives off a lot of light reduce the
brightness. In addition, keep the contrast between the background
and characters high. Generally speaking, your settings are probably
too bright, but a setting that is too dark is just as tiring.
Adjust text size and colour. Adjusting the screen’s text size and colour
can provide relief. First try enlarging the text. You are probably using
the smallest size which compounds the problem. Enlarge to three
times bigger than the smallest size you can read. Almost all software
and browsers will allow you to adjust text size. When possible use
black text on a white background and avoid busy backgrounds.
Take a break! If you are working long hours at a computer take at least
four 5 minute breaks in addition to any normal breaks you may take. It
is recommended you take a 15 minute break for every two hours of
computer use. If this is not possible look away from the screen for at
least 20 seconds every 20 minutes.
Clean your screen. Dust, fingerprints and other smears are distracting
and make reading the screen more difficult. You won’t see the dust,
make it a habit to wipe your screen frequently, preferably each
morning.
Position copy correctly. Glancing back and forth between print and a
computer screen causes eyestrain. Place the printed copy as close to
your monitor as possible. In addition, use a copy stand to keep the
copy upright. If you need more light for this task use a small desk
lamp but position it carefully so it lights the printed page but does not
shine on your face or reflect off the monitor. Remember to use soft
light.
Position yourself correctly. Keep your distance from the monitor, most
people sit too close. Position the monitor about 20 to 24 inches from
your eyes. Your screen’s centre should be about 10 to 15 degrees
below your eyes. If you can’t change the distance adjust the text
accordingly. If you are sitting further away than you should increase
the text size. It is not the best solution but is better than straining to
see something that is too far away.
Get computer glasses. You may need special glasses that you can
wear just for working at the computer. You will need to visit an
optometrist for these. Computer glasses work for distance of 18 to 28
inches, the same pair of glasses will not accommodate printed
material and working at your computer.
Seek alternative help. If all else fails try something quite different, like
yoga! Strangely enough studies have been done which show that
practicing yoga for 60 days consecutively brought an improvement in
eyestrain.
Downloaded from www.techrepublic.com
Optometric Association
and
the
American
10. Windows Screen Reader
A screen reader uses a synthetic voice to read written text on the
screen. You can change the pitch, rate and tone of the screen reader’s
voice as well as its pronunciation and accent. You can’t use a mouse
with screen readers, you need to learn to navigate around your screen
using keystrokes.
A very basic screen reader is included with Microsoft Windows called
‘Windows Narrator’. To turn this on you need to left click on the start
button, left click on programmes, left click on accessories, left click on
accessibility and finally left click on narrator.
If you can’t hear or understand the voice of Windows Narrator easily
you may need a more advanced speech programme. A demonstration
version of a free speech programme called 'Read Please’ is available
over the internet.
11. Facebook
The British Retinitis Pigmentosa Society have created an RP Fighting
Blindness group on Facebook. The group already has 400 members
from around the world. To visit the group go to www.facebook.com
where you can sign up for free, or sign in if you are already a
subscriber to facebook. You will find the group by searching the site
for “Retinitis Pigmentosa”.
12. Microwave Ovens
The following information outlines features to look for when selecting
a microwave if you are blind or vision impaired.
Dial Operated Microwaves
These simple to use ovens have only 2 operating dials. One is for
power level and one for cooking time. The power dial has different
power levels and the cook time dial can be turned to cook for up to 60
minutes. These microwave ovens are extremely easy to use once they
have tactile markings placed on them. They are less powerful and are
therefore less likely to burn or overcook food. They tend to have a
smaller capacity which may be a problem for larger families. These
models are becoming increasingly difficult to buy.
Electronic Microwave Ovens With Push Button Controls
This oven is more difficult to use, particularly because the buttons are
difficult to distinguish because they are flat on the face of the control
panel. They do beep when you press them. This type of microwave
tends to be more powerful and have a larger capacity. They have a
digital display that indicates the cook time and other settings. If
purchasing this type of oven choose one that has a one minute start
button and direct cook time buttons i.e. you can press the 10 second
button three times to cook for 30 seconds. Choose one with well
spaced out buttons that can be easily marked with tactile markers. The
numbers and other labels should be large and bold. A large, bright
digital display is important, as is a large and clear viewing window.
Automatic functions that allow you to reheat items at the press of one
or two buttons are essential.
Convection Microwaves
This is the combination of a push button microwave and a convection
oven. It allows food to be cooked quickly but to come out brown or
crisped. Convection microwaves have flat buttons and a digital
display. They are used primarily for cooking a prepared dish. These
microwaves tend to have a busy layout due to the large number of
buttons required for convection and microwave cooking and have
continuous dials with a visual display which makes them inaccessible
for blind and vision impaired people.
Electronic Microwaves With Sensor Cook
A number of electronic microwaves also have sensor cook functions.
Many vision impaired people ignore these functions as they can
complicate the cooking or reheating process. Commonly used food
items such as a baked potato, frozen vegetables or chicken can be
cooked at the press of a button. This option often relies on the visual
display to tell the user to turn over, let stand and so on which makes it
difficult for a blind or vision impaired person to use.
Defrosting
If wishing to defrost with a microwave purchase a model that has an
auto-defrost function where the microwave senses the amount of
steam being emitted and adjusts the defrosting process accordingly.
Brands
Suitable brands to look out for include Whirlpool, LG, Samsung,
Panasonic, Sharp and NEC.
Downloaded from www.visionaustralia.org.au
13. Retina Australia Triennial National Congress
The Retina Australia Congress is to be held in Brisbane from the
23-25th of October 2009. The venue is the Royal on the Park in
Brisbane city. From the hotel you can wander through the Brisbane
Botanical Gardens or walk into the city. Although the speakers are yet
to be confirmed the Congress will bring you the most up-to-date
information.
Members of Retina NZ are very welcome to attend this congress.
If you require more information please contact the Secretary, Anne
Housego, Retina Australia on www.retinaqld.org.au
14. Branch Reports
Auckland Branch
On Sunday the 7th of December approximately 40 members attended a
meeting at Awhina House. Dr Andrea Vincent spoke on the importance
of a definitive diagnosis in terms of career planning, planning a family,
and making provision for the associated prognosis. Andrea also
touched on the new developments in treatment and offered some
perspective in terms of the challenge of bringing therapies to the
market.
Naomi Meltzer, an Optometrist with a special interest in Low Vision
Services and patient rehabilitation spoke of her aspirations in terms of
better services for the newly diagnosed. She shared the frustration felt
by patients who had been given a medical diagnosis without any
information or advice on how they cope and who they turn to next.
Naomi’s work includes advocating for more adaptive equipment
funding and more low vision clinics.
Chris Frost from Humanware spoke on the functionality and
applicability of a range of products from their portfolio. These
included magnification and illumination, navigation using the GPS
system called trekker, and digital talking books. While many of the
devices are expensive there was considerable interest in them as
these products are specific and portable.
Kapiti VIPs
24 members of the Kapiti VIP group met for a shared lunch on the 15th
of December at the local community centre. Gael Hambrook visited
from Newlands and is enjoying her new life there. This group meets
once a month with approximately 30 people attending. Speakers talk
on a variety of topics, and occasionally the group has a mix and mingle
meeting. The next meeting is on the 16th of February and if you would
like to attend please phone Sue on 04 298 4028.
15. Recipe
Thai Fish cakes
500g potatoes
425g can tuna in spring water
1 red capsicum finely chopped
6 spring onions finely chopped
2 tbsp chopped coriander
1 tsp grated lime zest
Cook potatoes, mash, leave to cool. Add tuna, capsicum, spring
onions, lime zest, coriander and egg. Mix well. Shape into 12 patties,
lightly coat each patty with flour. Brush frying pan with olive oil and
heat over high heat. Cook patties 2-3 minutes each side. Serve fish
cakes with a dipping sauce, rice, salad, and lime wedges.
Quote: Love is a fruit in season at all times and within reach of every
hand: Mother Teresa of Calcutta
16. Book Review
Blindness: By Jose Saramago, Harcourt Brace, 1998
Blindness is the story of an unexplained mass epidemic of blindness
afflicting nearly everyone in an unnamed city, and the social
breakdown that swiftly follows. This novel follows the misfortunes of a
handful of characters who are among the first to be stricken and
centres around a doctor and his wife, several of the doctor’s patients,
and assorted others, thrown together by chance. This group bands
together in a family-like unit to survive by their wits and by the
unexplained good fortune that the doctor’s wife has escaped the
blindness. The sudden onset and unexplained origin and nature of the
blindness causes widespread panic, and the social order rapidly
unravels as the government attempts to contain the apparent
contagion and keep order via increasingly repressive and inept
measures.
The first part of the novel follows the experience of the central
characters in the filthy, overcrowded asylum where they and other
blind people have been quarantined. Hygiene, living conditions, and
morale degrade horrifically in a very short period, mirroring the society
outside.
Anxiety over food availability, lack of organisation, soldiers guarding
the internees, and increasing infection brings horrific consequences...
Conditions degenerate further and the rebellion which ensues reflects
a complete breakdown of human values. This novel continues by
following the ‘family’ of the doctor and their survival as part of a new
order.
Saramago writes in long sentences with little punctuation. Sentences
can be up to half a page long and the lack of quotation marks does
make it difficult to tell who is speaking. The characters do not have
names but are referred to by descriptive appellations. This contributes
to an element of timelessness as well as universality to the novel.
Blindness is in many ways a horrific and disturbing novel detailing the
total breakdown of the structure of society. Several reviewers have
described the narrative as detached or distant with a hint of sexism.
Saramago asks the reader to become blind to see the way things are
and to understand what it means to be human. One of the character’s
says “inside us there is something that doesn’t have a name, that
something is what we are”. Saramago has written a sequel called
‘Seeing’ which takes place in the same country and with the same
characters.
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
Susan Mellsopp
108B Comries Rd
Hamilton
Phone: 07 8533 612
Email: editor@retina.org.nz
Peer Support Coordinator
Membership Officer
Elizabeth East
Email: membership@retina.org.nz
PO Box 2232, Raumati Beach 5255
Telephone 04 299 1801
Please note: The deadline for articles for the autumn issue is April 15th
To order:
EMAIL COPIES: contact the editor if you would like your newsletter
emailed to you
TAPE COPIES: contact the editor if you require your newsletter on
cassette tape and advise if you also require a print copy
If you wish to contact Retina NZ please use the above contact details
or ring us on 0800 233 833 or email at secretary@retina.org.nz
List of Publications
“A Family Affair”-A New Zealand Guide to Inherited Retinal
Degenerations. Re-published in September 2000, 32 pages.
Age-Related Macular Degeneration: What You Should Know-RNZFB
Members will receive the relevant booklet when joining Retina NZ.
Extra copies of “A Family Affair” can be ordered at $5 each from the
Newsletter Editor
Free Brochures
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
Members can obtain these brochures free from the Membership Officer
and requesting the ones you require. A charge of $5 is made to
non-members to cover printing and postage.
Retina New Zealand Inc is grateful to the Royal New Zealand
Foundation of the Blind for funding the printing of 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 NZ’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 or 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