The Newsletter of Retina New Zealand Inc
A Member of Retina International
Winter Newsletter August 2007 No34
Contents
1. From the Editor
2. Letters to the Editor
3. Kaye Newton
4. Do You Need Sunglasses?
5. Coping-Caring For Your Spectacles
6. Coping-Organising and Identifying Objects
7. Large Print Books
8. What is Happening in Research-New Radiation
Treatment for Wet AMD; Clinical Trial of Gene Therapy for Stargardt’s Disease
Planned; Predicting Severity and Progression Rates of ADRP; Stem Cell Research;
Genetic Database
9. Glossary
10. Foundation of the Blind Names New CEO
11. Office for Disability Issues Nominations
Service
12. Now That You Mention It…By Mary Dobbie
13. Branch News
14. Kapiti VIP Support Group
15. Snippets
16. Book Reviews
1. From the Editor
I wish I had not waited so long to travel to Britain, I had
a wonderful time. I found the history
particularly interesting, everything is just so old! I had planned my trip with care to ensure I
saw as many of the things and places I had dreamed of for so long, and was
seldom disappointed. A white cane is
recognized and respected in the UK, and I found people, in general, to be
extremely helpful. I would certainly
recommend making maximum use of your cane if you are travelling, but do take a
folding one, the rigid canes could be quite awkward. If you want to hear more about my trip and
traveling with a vision impairment I will be speaking at the AGM in
Christchurch.
A personal experience while away has reinforced for me the
message about smoking published in the last newsletter. I stayed with friends in the Cotswolds, one
of whom chain-smoked. The effect this
has had on my eyes, even in such a short time span, now means I have to make an
unplanned early visit to my ophthalmologist.
Please heed the warnings about the damage that cigarette smoke can do to
your eyes.
I have received many short emails thanking me for
interesting and informative newsletters.
These emails are not intended for publication, but I would like to thank
all those people who continue to email me, and would like them to know that I
do enjoy writing and researching the newsletter.
Thank you also to all those people who have sent in articles
and information for this newsletter. It has made my job so much easier with
such a short time span to research and write it this time. Following a tribute to our recently retired
President, Kaye Newton, an article on sunglasses seems timely with spring,
hopefully, approaching. Caring for
spectacles is the focus of the coping section, a précis of recent research and
a glossary of terms used in research articles was a request from our
survey. One of our members, Mary Dobbie,
has written a short article about losing sight which I have included on page
15.
Our annual general meeting will be held on the 15th of
September at the RNZFB office in Christchurch starting at 10.00am. I hope many of you, particularly the South
Island members, will be able to attend.
We have several very interesting speakers including Alena Reznichenko,
the Health Promotion Co-coordinator from the RNZFB.
Susan Mellsopp
editor@retina.org.nz or 078533612
2. Letters to the Editor
Dear Susan,
I would like to record how much I have enjoyed the last few newsletters. I appreciate the useful way that technical
issues are communicated to a lay readership.
I enjoy the emphasis placed on practical living skills which have been
collated from other sources. Like many
readers, I have been able to put some of these ideas into regular use.
I would like to have some response from other readers of
this newsletter about what other visually impaired people want from their
household helpers provided by government agencies. I would like to know what things other people
ask their helpers to do for them other than the obvious cleaning of the
bathroom, toilet, and vacuuming.
Thanks again for such varied newsletters.
Peter Graham
Paraparaumu
To the Editor, Retina NZ
I have recently come across a website called LibriVox. It has numerous audio books from the public
domain available for free download to anyone who has a computer and an MP3
player. The address of the website is:
Elizabeth East
3. Kaye Newton
Kaye Newton of Christchurch has worked tirelessly and
passionately in a number of roles within Retina NZ for over 10 years. Having been diagnosed with Ushers Syndrome
Kaye volunteered to give peer support to members of the Christchurch Branch of
Retina NZ. As national treasurer and a
patient advocate she soon gained recognition among the national executive for her efficiency and
reliability. In 2000 Kaye was elected
Vice-President, her knowledge of blindness issues and her ability to motivate
others and to sustain the momentum of Retina NZ in the South Island a key
factor. Kaye was elected President of
Retina NZ in 2004 and has ensured our mutually beneficial relationships with
the RNZFB, consumer groups, related patient groups, clinicians and researchers both
in NZ and
overseas. Kaye was
instrumental in organizing and compiling our newest publication, The Good Look
Book, and initiating peer support training.
We wish Kaye the very best for her new life in Australia,
one we hope will be full of new adventures for someone who has never considered
her vision impairment a barrier to pursuing her goals. Kaye is known for giving life her best shot!
4. Do You Need Sunglasses?
Sunglasses are bought and worn for many reasons. Some people buy sunglasses purely as a
fashion accessory, while others have special lenses made specifically to suit
their vision needs. Your eyes do have
three natural mechanisms for coping with the sun. Firstly, they act like blinds on a window to
shut out light at will, and secondly, the pupils adjust according to the
intensity of light they are exposed to.
Thirdly, the retinas adapt to different brightness levels. These natural mechanisms respond quickly to
variations in visible light, but cannot completely exclude ultra-violet (UV)
radiation.
UV radiation comprises invisible high energy rays from the
sun that lie just beyond the blue end of the visible spectrum. More than 99% of UV radiation is absorbed by
the anterior structures of the eye, although some of it does reach the light
sensitive retina. UV absorption by the
eye may contribute to age-related changes in the eye and a number of serious
eye diseases.
Ultra-violet radiation in sunlight is commonly divided into
two components: UV-A (320 to 400 nanometers) which causes tanning and is
thought to contribute to ageing of the skin and skin cancer; and UV-B (280-320
nanometers) which causes sunburn and skin cancer. Experimental studies have shown that UV-B is
more damaging, presumably because it has higher energy. Most of the UV-B is absorbed by the cornea
and lens therefore it can cause damage to these tissues, but the retina will be
damaged if it is exposed to the UV-B.
UV-A radiation has lower energy, but penetrates much deeper
into the eye and may also cause injury.
UV Related Eye Diseases
Ultraviolet radiation can play a contributory role in the
development of various eye disorders including cataract, pterygium, cancer of
the skin around the eye, photokeratitis and corneal degenerative changes, and
may contribute to age-related macular degeneration.
Epidemiological studies have shown that certain types of
cataract are associated with a history of higher exposure to UV, especially
UV-B radiation. Pterygium, a growth of
tissue on the white of the eye that may extend onto the cornea, is seen most
commonly in people who work outdoors in the sun and wind. It can be removed surgically but often
recurs. Photokeratitis is essentially a
reversible sunburn of the cornea occurring when spending long hours on the
beach or snow without eye protection.
Any factor that increases sunlight exposure will increase the risk of
ocular damage. Individuals who have had
cataract surgery are at increased risk of retinal injury from sunlight unless a
UV absorbing intraocular lens was inserted at the time of surgery. Those with retinal dystrophies or other
chronic retinal conditions are at greater risk as their retinas are less
resilient to normal exposure levels.
UV light can damage
the eyes even on cloudy days, and is at its strongest, and therefore most
dangerous, during the early afternoon.
UV intensity increases with altitude because there is less atmosphere to
absorb the damaging rays. UV-A rays are
not absorbed by the ozone layer, although UV-B rays are partially. The
depletion of the ozone layer, particularly over New Zealand, brings with it an
added urgency to ensure proper protection.
Protecting Your Eyes
Optimal sun protection should screen out both types of UV
radiation. A wide-brimmed hat or cap
will block roughly 50% of UV radiation and reduces UV that may enter above or
around glasses. Ultraviolet absorbing
eyewear provides the greatest measure of UV protection, particularly if of the
wraparound design which limits the entry of peripheral rays. These sunglasses should meet the Australian
AS/NZS1067:2003 standard for sunglasses.
This standard classifies sunglasses based on the amount of UV radiation
that passes through the lenses, as well as defining lens dimensions and safety
requirements. Within the standard there
are five categories of sunglasses. Those
which transmit very little UV radiation and are labelled UV400 or EPF (eyes
protection factor) 9 or 10 are the most appropriate. The EPF number was developed by the
Australian Radiation Protection and Nuclear Safety Authority. Some sunglasses state the amount of UV
radiation blocked as a percentage. For
the best protection use wraparound, close fitting, large-lens sunglasses that
help to reduced reflected UV radiation, and glare that passes around the edge
of some sunglasses and reaches the eyes.
Some tinted or clear prescription lenses may provide
protection from UV radiation. Lenses can
also be coated with a UV protective layer.
Those that darken when exposed to sunlight provide additional comfort by
reducing glare but do not necessarily filter out UV radiation. Prescription glasses used for sun protection
should also be close fitting and wraparound to provide maximum protection. If you wear prescription sunglasses ask your
optometrist about the level of UV protection they provide.
Types of Lenses
Glass lenses are generally more resistant to
scratching. However, they are more
easily broken than plastic lenses, and this carries with it a safety risk. They are also likely to be heavier and
therefore potentially less comfortable.
High quality glass lenses are excellent at selectively absorbing
undesirable rays and are available in fixed (solid) or photochromic (light
sensitive) tints.
Resin (plastic) lenses are safer than glass as they do not
shatter so easily. Often they feature a
scratch-resistant hard coating and this helps to ensure a long life. Plastics are as optically correct as glass,
and are lighter in weight. Tints
available include solid, graduated, polarized, or photochromic forms. Polycarbonate lenses are
stronger still and are a must for eye safety when playing sports. They offer the ultimate in eye protection and
safety, and the range of tints is extensive.
Most of the options mentioned above are also available in
prescription lenses. Your optometrist
can discuss the huge range of options available to ensure your options are met.
Coloured Lenses?
Different lens colours and treatments provide differing
levels of protection against UV radiation.
Brown or amber lenses are good for absorbing UV light and blue
light. This can serve to enhance
contrast. Grey lenses do not distort
colours while polarized lenses absorb reflected light. No sunglass lens is ever dark enough to
observe the sun or eclipses. Never look
directly at the sun or an eclipse.
Sunglasses do make it difficult to see well in poor light conditions, so
dark lenses should never be worn while driving at night.
What About Frames
An optometrist will provide you with specific information
about your needs. Your sunglass frames should
be comfortable, serviceable, and fashionable.
For certain situations wraparound frames can be fitted with tinted
prescription lenses, though this would be more expensive than the standard
options. Plastic frames are strong and
durable. Take time to ensure they fit
well on your nose. Metal frames are
adjustable, but have moving parts that will require maintenance. Cheap frames may be brittle and less durable.
Remember that you only have one set of eyes, and protecting
them from the damage of UV rays should be a priority.
Information for this article was downloaded from:
The New Zealand Association of Optometrists www.nzao.co.nz
Australian Optometrists Association
Cancer Council Australia, Eye Research Australia
seniorhealth.about.com
5. Coping: Caring For Your Spectacles
Please handle spectacles carefully, they are custom made
hi-tech appliances that serve a very important function-they help you to
see! If they become maladjusted your
ability to see comfortably or clearly may be compromised.
What is the Best Way to Put Your Spectacles On?
Whether putting your frames on or taking them off, you
should hold your spectacles in both hands.
To minimize the risk of damage hold the front of the frames when putting
them on, or alternatively, hold the temples (side pieces). When putting your spectacles on, push the
temples gently over your ears and ease the frame onto your nose. You can remove your spectacles by using the
same two-handed grip simultaneously raising the temples and sliding your specs
forward. Do not rest your spectacles on
your forehead or high up on your head.
This stretches the temples out of shape and will make for uncomfortable
wearing.
How Do You Clean Your Lenses?
Most lenses can be cleaned by running warm (not hot) soapy
water over them. Rinse, then gently dry
your lenses off using a tissue or soft cloth; be sure to hold the frame at the
edge of the lens you are wiping. This
will avoid unnecessary strain on the bridge piece of the frame. Anti-reflection coatings are commonly used
these days, and special care is required when cleaning to ensure a smear free
finish. Satin-like ‘micro-cloths’ should be used for this purpose.
Cleaning your lenses with a dirty cloth is a sure way to
scratch them. If you choose to use a
lens cloth take particular care to make sure it is clean. Cleaning cloths and ‘micro-cloths’ are
available from your optometrist.
Cleaning Your Frames
Warm soapy water will also clean your spectacle frames. If your spectacles have nose pads or a bridge
these can be cleaned by applying a soft toothbrush gently to the required
area. Be very careful not to use the
brush on the lenses. You should always
wash your glasses after they have been exposed to perspiration, salt spray, sea
water, dirt and chemicals (sprays and liquids).
What To Do When Not Wearing Your Spectacles
Take care of them!
Keep them in their case which will protect the frames and lenses from
knocks and scratches. If you have to put your spectacles
down make sure they are not touching anything.
Some forms of lens scratch easily if they are exposed to hard or rough
surfaces.
Cases do not last forever so keep them in good
condition. The flocked lining inside can
gradually attract dust, and this can scratch your lenses, particularly if the
spectacles are a tight fit in the case.
If there is a sticker inside the case watch out for the edges lifting as
the sticky surface will attract dust. If
you need a replacement case ask your optometrist.
A spare pair of spectacles for an emergency is
important. This is particularly
important if you require spectacles for driving. The back-up pair do not have to be your most
recent prescription.
Repairs
Because spectacles are worn frequently there is a chance
they may become loose or out of shape.
If you notice your frames loosening please get them adjusted. This service is offered free by optometrists
throughout New Zealand.
Downloaded from www.nzao.co.nz
The New Zealand Association of Optometrists
Quote: Cheerfulness and contentment are great beautifiers and
famous preservers of good looks: Charles Dickens 1812-1870
6. Coping/Organising and Identifiying Objects
Reduce Clutter
1.
Group items with clips or rubber bands, or store them together in small
plastic baskets, trays, or in zippered plastic bags. When you need an item take the storage
container and place it on a bench in good light for easier selection.
2.
Decide where items belong and return the items to the same place so you
can find them whenever you need them.
3.
Place sharp kitchen knives in holders or in a wooden block.
4.
Store important documents in accordion files rather than single file
folders.
Labelling Systems
Decide on a system that suits you. These could be permanent labels or portable
labels such as Braille, Dymo, white sticky labels, or plastic magnetic letters.
1.
Labels can serve as part of a shopping list, they can be attached to
items with a rubber band, wire tie or magnet so they are reusable.
2.
Thin magnetic sheets are available from craft shops. They are A4 page size and can be cut,
brailled, and attached to food tins.
3.
Varied numbers of rubber bands can be used to differentiate between
containers of similar shape and size-one around the curry, two around the
paprika and so on.
Lighting and Other Hints
1.
Keep cupboard interiors painted a light colour or white.
2.
To see inside darker cupboard or storage areas use a torch, or have a
light fitted inside larger storage cupboards and pantries. A torch is useful when looking for a
particular food in the deepfreeze.
3.
If you are using a lot of low vision aids wear clothes with pockets, or
an apron with pockets to store your torch or magnifier. Alternatively, store low vision devices where
they will be used the most, a magnifier near recipe books and a torch in a
cupboard.
4.
A small timber lip along the edge of cupboard shelves can prevent items
being knocked off shelves.
5.
Construct a filing system for your favourite recipes. Have them enlarged and store in plastic
sleeves.
6. Purchase a
clearfile to store your enlarged and regularly
used phone
numbers. Put a label on front which
clearly
shows who should
be contacted in case of an emergency.
Downloaded from www.visionaustralia.org.au
and suggestions from other members.
7. Large Print Books
There are a wide variety of international bookshops which
produce large print books for the vision-impaired. Huge Press Print custom enlarges everything
from Bibles to textbooks and cookbooks.
You can order the font size you require and what book you wish to have
enlarged and they will produce it for you.
Their books are in a convenient 8.5x11 format. You can contact Huge Print Press via email
at info@hugeprint.com
or by mail at Huge Print Press, 1700 Commerce Suite 1140, Dallas, Texas.
Large Print Books.com offer free shipping on orders over
$US25. They offer titles ranging from
biographies to history, the Chicken Soup series, inspiration and cookbooks,
along with romance and science fiction.
Their books are all unabridged.
Large print magazines, audio books and books in other languages are also
available. Their website address is www.largeprintbooks.com
Quotes: When one door closes another opens; but often we
look so long at the closed door that we do not see the one that has opened:
Anon
Great opportunities come to men who make the most of small
ones: Anon
8. What
is Happening in Research
A. New
Radiation Treatment for Wet AMD
NeoVista Inc announced in June the official commencement of
the CABERNET (Cnv secondary to Amd treated with BEta RadiatioN Epiretinal
Therapy) clinical trial for the treatment of subfoveal choroidal
neovascularisation associated with wet AMD.
The proprietary Epi-Rad90™ Ophthalmic System, developed by Neo Vista, is
being utilized in the CABERNET trial.
Dr Nelson Sabates treated the first patient enrolled in the
CABERNET study. He commented: “It was no
different than performing a common vitrectomy and the Epi-Rad delivery device
allowed me to deliver a well focused dose of radiation to the lesion. Treating neovascular AMD using a
multi-faceted approach like the use of radiation and anti-VEGF therapy may well
be the next frontier in combating this sight threatening disease”.
The CABERNET clinical trial will involve clinical sites in
the United States, Europe, Israel, and South America. The trial protocol is divided into two
treatment arms: investigational and control.
The investigational treatment arm consists of concomitant delivery of
Beta radiation, via the Epi-Rad delivery device, and the anti-VEGF agent
Lucentis. This treatment is administered
during an outpatient surgical procedure and delivers Beta radiation directly to
the area of the retina that has been compromised by the disease. An injection of the anti-VEGF agent is
administered at the time of surgery with one additional injection administered
30 days after surgery. The control arm
is utilizing Lucentis alone. According
to NeoVista the benefits of radiation therapy over pharmacotherapeutic therapy
are that the treatment is effective over a longer term. It also mitigates the inflammatory and
fibrotic responses, is minimally invasive, and it can be performed in a single
outpatient treatment.
More information can be obtained at www.neovistaine.com
B. Clinical
Trial of Gene Therapy for Stargardt’s Disease Planned
Researchers from Oxford BioMedica and Columbia University
are planning to launch a clinical study of a gene therapy for Stargardt’s
disease. The therapy is called
StarGen. Stargardt’s disease is caused by a mutation in the ABCA45
gene needed for the production of a protein involved in normal photoreceptor
cell functioning. The therapy involves
transferring a normal ABCA4 gene to photoreceptors of the retina using Oxford
BioMedica’s proprietary lentiviral vector delivery system. StarGen has achieved positive results in an
animal model of Stargardt’s disease.
C.
Predicting Severity and Progression Rates of ADRP
Mutations in the gene that encode for the protein rhodopsin
account for up to 40% of cases of autosomal dominant retinitis pigmentosa
(ADRP). Researchers looked at a
correlation between the severity and progression rates of ADRP and the
particular mutation in the gene that then affects a discrete portion of the
rhodopsin molecule. In their study of
four families with different mutations of the rhodopsin gene, they found that
the R135L and R135W mutations caused
diffuse, severe disease. The R135W
mutation caused more severe and more rapidly progressive RP. The P180A mutation was related to a mild
phenotype (observable trait or
characteristic) with regional variability.
The G188R mutation resulted in diffuse disease of moderate
severity. Characterising the impact of
particular rhodopsin mutations will improve the understanding of RP and yield
information that could help doctors and patients predict the course of the
disease. Researchers have also shown
that the same mutation in different people does not always produce the same
disease phenotype. This suggests that
others genes are modifying the expression of the shared mutation.
D. Stem Cell Research
Human cells that are yet to become one type of cell or
another can be urged to turn into retinal pigment epithelial cells or retinal
progenitor cells say researchers. They
have been studying ways to prepare cells for transplantation into the retina of
people with degenerative retinal disorders.
The researchers studied the influence on hESC, in the lab, on various
culture dish environments; they report that the cells took on biologic
characteristics of RPE and immature retinal cells. Other researchers report similar observations
taking retinal progenitor cells and growing them in special laboratory (cell
culture) environments. The cells showed
characteristics of retinal ganglion and bipolar cells. The cell type was confirmed by looking for
protein expression that is particular to it.
E. Genetic Database
A database has been developed for European clinicians and
researchers to conveniently report and analyse clinical and genetic data from
patients with AMD. The database is a
project of EVI-GENORET, a consortium of academic and industrial partners formed
to develop an integrated European database with genotype, phenotype,
developmental and functional data
concerning the retina in health and disease.
The design of the database and its reporting forms make the database
easy to access. There are no special
computer software or hardware requirements for users.
This information was sourced from presentations at the
Association for Research in Vision and Ophthalmology 2007 Conference held in
Florida
9. Glossary
Angiogenesis: This
refers to the growth of new blood vessels.
When uncontrolled angiogenesis can cause destruction of the retina due
to leakage, or cause accelerated growth of a tumour in certain cancers. Angiogenesis is associated with the wet form
of age-related macular degeneration where it is thought that blood vessels grow
from the choroids (vessels behind the retina) through the Bruch’s membrane
(blood-retina barrier) and leak blood into the retina where RPE and
photoreceptor cells reside.
Autosomal Dominant Disease:
The affected person has one altered/mutated gene paired with one normal
gene. These genes lie on one of the 22
pairs of autosomal chromosomes (the non- sex chromosomes x or y) that are
inherited from parents. A larger number
of identified disease-causing genes are from dominant diseases since there is
normally an affected person in every generation.
Bruch’s Membrane: The
blood-retina barrier that separates the RPR cells from the choroids. It is synonymous with the blood-brain barrier
because the eyes are extensions of the brain.
A rupture of this barrier can cause diseases like AMD where the choroid
blood vessels grow through into the retina and cause damage, ultimately
affecting vision.
Choroid: The layer of
cells that sits just below the retinal pigment epithelial (RPE) cells. The choroid is rich in blood vessels, and is
a major supplier of oxygen and nutrients to the RPE and photoreceptor
cells. It also takes away the waste from
these cells.
Phenotype: The
observable characteristics or clinical symptoms present in an individual with a
particular retinal degenerative disease.
Scientists are attempting to correlate the phenotype with the genotype
for every retinal degenerative disease.
Information obtained from the Foundation Fighting Blindness
10. Foundation of the Blind Names New CEO
The Royal New Zealand Foundation of the Blind has appointed
Sandra Budd as its new Chief Executive Officer.
She took up the position in July.
Ms Budd has been a leader in New Zealand and Australian health services
during her 35 year career. Prior to her
appointment to the RNZFB she was Executive Director, Workforce Development,
Greater Southern Health Service, New South Wales. She was responsible for strategic leadership
on workforce planning, workforce organizational development, and human
resources strategy for over 5000 staff in 154 facilities.
Ms Budd’s previous roles have included Executive Director of
several health services in Australia and Maternity Manager of the National
Women’s Hospital in Auckland. She began
her career in health in 1972 and worked on the ‘front lines’ for over 20 years
before moving into general management in the health sector.
She is a strong advocate for the rights of individuals to
participate fully in society. She is ‘keen
to use the skills I have to help the Foundation do even greater things in the
future’. Ms Budd is also actively
involved in volunteer work with Plunket, Meals on Wheels, and is a member of
the Hohepa Homes Family Association.
11. Office for Disability Issues Nominations Service
The Office for Disability Issues has developed a nominations
service so the Minister of Disability Issues can nominate appropriately skilled
disabled people to government boards and committees. The service will maintain a database of
disabled people with relevant skills and experience and match people to vacant
positions. The Office for Disability
Issues would like to receive applications from disabled people wishing to be
nominated to government boards. Please
advise anyone who you think would be appropriate and suggest they go to http://www.odi.govt.nz/ for more information and an application
form.
Snippet:
Do you know about our 0800 peer support number? If you ring 0800 233 833 you will be
connected to a member of our peer support team who will be able to help you
with information about your eye condition, where to go for help and support,
connect you with other Retina members in your area, or help you or your family
with enquiries about Retina NZ.
12. Now That You Mention It…… By
Mary Dobbie
I am not one who shares the comforting belief that failure
of one faculty-sight for instance-is automatically compensated for by
sharpening of another; hearing usually.
While respectfully awaiting research my own experience is that hearing
worsens when one can no longer read the lips of the person one is talking to,
something that has been automatic from infancy.
Sociability can suffer too, linked as it so often is to a sympathetic
reading of another’s face and knowing when to nod and smile and when not to.
I don't suppose that the ability to spell could be classed
as a faculty, but mine has gone downhill.
A teaching daughter tells me that sight is memory’s backup and it is the
repetitive viewing of a word on the printed page that fixes its spelling in the
mind. Ah well. Bring on really big print dictionaries.
In this matter of compensatory faculties I have to concede
that my sense of smell has improved, sharpening beyond the burnt saucepan and
melted plastic handle stage to the point of detecting the more subtle smell of
a meal that is merely sticking to the bottom of the pan. A budget saver.
The sense of touch, has it sharpened? Or is it just that giving up on wearing
gardening gloves has made it easier to distinguish the slightly furry leaf of a straying forget-me-not from the smooth
one of a wanted young lettuce? When
blindfolded any kitchen gardener would know by touch the difference between a
cauliflower and a head of broccoli; a spinach and a silverbeet.
It is inside the kitchen that a more defining sense of touch
would be welcome. How to butter a piece
of bread without buttering the plate, how to open that bottle whose top is
permanently sealed with a skin of impervious plastic. Printed instructions would be of little
use. My thoughts go to light-fingered
Jimmy Valentine of the legendary song:
With a touch that lingers
In his sand-papered fingers
He can find the combination
Of the strongest lock.
Should sandpaper go on my next shopping list? Could perhaps be helpful for the new
coinage!
Quotes: They are able who think they are able:Virgil 70-19BC Roman
Poet
The most fruitful of all the arts is the art of living well:
Cicero 106-43BC Orator
13. Branch News
Auckland Branch/Fraser Alexander
Rob Matthews MBE, a recent immigrant to New Zealand from
Britain, spoke on his highly successful running career. He also talked about his new life in New
Zealand which has included meeting his wife Sarah and their baby which is due
later this year. Rob spoke from the
heart explaining how attitude was the most vital ingredient in attaining
excellence, and how his own attitude drove him to the successes he has
achieved. These include international
titles just 3 years after first taking hold of a guide rope. Rob’s success story as a runner is quite
staggering. He has represented Great
Britain 26 times and has set 22 world records, and won 29 international gold
medals, (including 8 Paralympic gold medals).
He also recounted the humorous angle of meeting Queen Elizabeth when he
received his MBE-as a blind man he did not realize the Queen was just
5’2”!
Those attending the meeting were pleased to hear of Rob’s
plans to wear the black singlet and run for New Zealand at the 2008
Paralympics. Following his talk they
took the opportunity to chat with Rob and welcome him to New Zealand. They wondered how he would find time for
running as he takes on new and inspiring challenges; fatherhood,
self-employment as a massage therapist, and motivational speaking.
Fraser Alexander then gave a summary of the new findings in
eye research presented at the 2006 Retina International World Conference in Rio
De Janeiro. Fraser’s summary can be read
in the February 2007 newsletter.
Question time brought a healthy debate on matters such as new angiogenic
therapies for macular degeneration, vitamin supplementation in retinal
degeneration, and the likely time frames for treatment strategies to reach
commercial availability.
Retina Auckland would like to thank everyone who attended
this meeting and took the opportunity to make new friends and exchange
views. Should you wish to obtain further
information from the speakers, suggest topics or presenters for meetings later
in the year, or simply offer peer support for people with similar interests to
your own please contact either Fraser Alexander on phone 6388091 or by email
at at fraserale@xtra.co.nz or the Retina NZ peer support number 0800 233
833.
Important Notice: Would you like to be part of a dynamic team of
people? The role of President is vacant
and we are looking for someone willing to offer their time and commitment to
ensuring the continued success of Retina NZ.
If you think this might be you please put your name forward.
14. Kapiti VIP Support Group
The Kapiti VIP Support Group started the year with 7 new
members. An average of 15-20 people have
attended each meeting. The first meeting
after Christmas was a catch-up on what everyone had done over the holidays.
Speakers at meetings since then have included the manager of
the local mall to allow members to express their concerns about trouble spots
in and around the mall.
The Road Safety Officer from the local council came and took
notes on people’s concerns about trees overhanging footpaths, crossings, and
other outdoor obstacles of concern to those who are vision-impaired. She returned a couple of months later to
report on improvements and what was in the pipeline.
A demonstration of medical alarms and how useful they are
for the elderly and disabled was the subject of another meeting.
Informal meetings without a speaker are held on occasion so
members can swap ideas and hints to generally help and support one another. We
have farewelled Tim Prendergast, the RNZFB Recreation Officer who visited our
group from time to time. He has gone to
live and work in the UK, we will miss him.
33 people attended the mid-winter lunch.
Heather Tofts/Kapiti VIP Support Group
15. Snippets
Hamilton Support Group
Is there someone in the Hamilton area who would be
interested in organizing get-togethers of local Retina NZ members? If so, please contact me on 8533612-Susan
Mellsopp
The Good Look Book
This book is 8 stories of living with vision loss written by
members of Retina NZ. “They are stories
of life in all its richness”. This book costs just $10 plus p&p and is
available from the National Secretary.
It is also available on tape and CD.
Cosmos Seeds
Spring is just around the corner! When purchasing seeds for your garden please
include a packet of Yates Cosmos Bright Eyes.
With every packet purchased a donation of 40c is made to Retina NZ,
$476.80 this year. The seeds are
available at supermarkets and garden centres which stock Yates products.
Change of Address
Several newsletters are returned to us after each issue is
mailed out. Could you please let the
National Secretary know if you change your address, her phone number is 04 299
1801.
16. Book Reviews
Cockeyed by Ryan Knighton. Published by Atlantic Books,
2007.
Blindness is not something to laugh about, but Ryan Knighton
offers us an irreverent, tragicomic, politically incorrect, perceptive, yet
articulate memoir about going blind. On
his 18th birthday Ryan Knighton was diagnosed with Retinitis Pigmentosa. This book tells the story of his fifteen year
descent into blindness yet reveals the world of the sighted in all its
phenomenal peculiarity. Knighton
describes learning to drive, his first significant relationship, learning to
navigate the men’s room, and using a cane.
He tried to pass as fully sighted when taking up a contract to teach
Korean children English.
Knighton developed a truce with his identity as a blind man,
and still hesitates to mix with the blind community at large. He uses his blindness and subsequent anger to
provide a window into the human condition.
His experiences offer unexpected insights into sight and the other
senses, culture, identity, language and our fears and fantasies. An irreverence and impatience with words
allows this book to offer a different
perspective from others on disability.
Cockeyed was short-listed for several Canadian medals and
literary awards. It has been widely
reviewed and has received comments such as ‘the total lack of self pity makes
this book an enlightened and enjoyable read’ and ‘this book is unusual in that
it’s not the least bit miserable-the blind leading the sighted’ and ‘the blind
see things the rest of us can’t’.
Ryan Knighton teaches contemporary literature and creative
writing in Vancouver, British Columbia.
He is the author of books of
poetry, short fiction, and has been widely published as a journalist and
essayist. He has also written
documentaries about blindness for the Canadian Broadcasting Corporation.
Kurson, Robert. Crashing Through, Random House, 2007.
This is the story of Mike May who was blinded at age 3 yet
broke downhill speed skiing records, joined the CIA, and became an
inventor. In 1999 he learned a stem-cell
transplant might restore his vision.
Although regarded as a super-blind man who was an expert in
echolocation, he decided to have the surgery, and gained some sight. He then had to learn to align his vision with
his brain to improve visual acuity, but he also
stated that he felt he had seen better when he was blind.
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
Please note: Deadlines for articles for the spring summer
and autumn issues are the 15th of October, 16th of
January and 18th of April respectively
To order:
EMAIL COPIES: contact the National Secretary if you would
like your newsletter emailed to you
TAPE COPIES: contact the National Secretary if you require
your newsletter on cassette tape and advise if you also require a print copy
National Secretary
Janet Palmer
Retina New Zealand
PO Box 17242
Wellington 6147
New Zealand
Telephone: 04 299 1801
Email: secretary@retina.org.nz
Peer Support Coordinator
Elizabeth East
Telephone: 04 299 1801
Retina
New Zealand Inc is grateful to the Royal New Zealand Foundation of the Blind
for funding the printing of this newsletter
List of
Publications
Booklets
“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 relevant booklet when joining Retina NZ. Extra copies of “A Family
Affair” can be ordered at $5 each from
the National Office.
Free
Brochures Available from National Office
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 National Secretary, Retina NZ Inc, PO
Box 17-242, Karori, Wellington or by emailing her at secretary@retina.org.nz and requesting the ones you require. A charge of $5 is made to non-members to
cover printing and postage.
Membership
Subscriptions
Annual
membership subscriptions are due on the 1st of April each year. Subscriptions
are $10 for unwaged people and $20 for waged.
Any person interested in receiving this newsletter is welcome to
subscribe. Donations of 5 and over are
tax deductible.
Could
you please let the National Secretary know if you change your address, her
contact details are included in 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 counselor about your own diagnosis or RP, macular degeneration or other
retinal degenerative disorders.
Auckland
Genetic Hotline (Northern Regional Genetic Service)
0800 476 123
Wellington
Genetic Hotline 0508 364 436
Christchurch
Genetic Hotline 0508 364 436
END