Download August 2009 - Retina New Zealand

Newsletter of Retina NZ Inc: A Member of Retina International
Spring Newsletter August 2009 No 42
1. From The Editor
2. From The Presidents Desk
3. History of Spectacles
4. People: Glaucoma
5. Bequests
6. Recipe
7. Focus on Myopia
8. Stem Cell Research for AMD
9. Results from Neurotechs NT501
10.
Geographic Atrophy
11.
Nanoparticle Delivery of Genes in LCA
12.
Warnings of Possible Damage
13.
Quotes
14.
Coping Low Energy Lightbulbs
15.
How to Guide People With Sight Problems
16.
Quotes
17.
Book Review
18.
Notices
1. From The Editor
Researching and writing this newsletter has been quite difficult due to
the very cold weather. My office is large, unheated, and extensive
amounts of time either searching for information or writing has not
been possible. I hope you are all managing to keep warm and will not
be too shocked by your next power bill. While Hamilton does have a
reputation for fog there have been very few this winter, and all have
dispersed early in the morning, very heavy frosts have been the norm!
I only received one response to my request for your opinion regarding
the change of format for the newsletter, that is, by removing the
columns. Therefore we have decided to give the whole page format a
trial and follow the lead, in particular, of the Australian newsletter. I am
hoping to improve the newsletter with each edition, I have been
trialling different borders and layouts this time, and may eventually be
able to email to you the same version as those who receive it in print. It
has certainly made it easier for me to put together, I have been able to
include more information, and have saved time both in the importing of
files and re-formatting the newsletter into the email version. I would be
very interested to hear what you think about the new layout.
This newsletter contains an interesting article about the history of
spectacles, a personal story about living with glaucoma, and some
information on myopia, often a precursor to other retinal issues as we
age. The research section reports on the latest stem cell research for
AMD, updated information on the NT-501 trials from Neurotech, and
also includes papers from the 2009 ARVO (Association for Research in
Vision and Ophthalmology) conference.
I hope the article in the coping section on guiding people with sight
problems is something you will be able to share with family and
friends. It offers various suggestions for everyday situations we find
ourselves in, often with people who do not know how to explain or
guide us through. I experienced being guided by a young, but very
experienced sighted guide, while attending the Retina International
Conference in Finland last year. It was a revelation to me that
someone could guide people around obstacles with the minimum of
disruption and very little need for verbal communication. What was
even more extraordinary was that he had one person on each arm!
Susan Mellsopp: Editor [email protected] or Ph 078533612
2. From The President’s Desk
I’d like to extend my appreciation to those of you who have recently
renewed your Retina New Zealand Membership- without you we can’t
provide the kind of quality peer support and focussed public education
programmes that we do. Your support is our peer support.
Recently the NZ National Eye Centre, University of Auckland, hosted
Retina NZ founder and former newsletter editor June Ombler and her
daughter Kay Mckenzie. June has established the SJ & JG Ombler
Charitable Trust, a trust providing grants to assist tertiary level
students with visual impairment, and to support summer student
scholarships at the University of Auckland. The Scholarships are
specifically for students undertaking vision research.
Several
students from Optometry and Ophthalmology have been recipients of
the Ombler Trust scholarships in recent years. Well-known as a
selfless and active campaigner for services and accessibility for vision
impaired people, June’s 25 years plus of dedication to community
work was rewarded in 2006 with the Queen’s Service Medal for
community service. An exciting development related to June’s visit
was an agreement to work towards establishing New Zealand’s first
patient database for people with retinal disorders. Head of
Ophthalmology, Professor Charles McGhee, and ocular geneticist Dr
Andrea Vincent discussed how the Ombler Charitable Trust, Retina
New Zealand and the Save Sight Society could come together and
commence the establishment of this highly important and long
overdue facility in 2010. I’ll keep you posted as to developments as
they happen.
If you are around Auckland on Sunday 8 November this year, the
National Eye Centre at the University of Auckland is holding it’s
inaugural Open Day. An insight into Ophthalmology and Optometry
teaching and research, along with an opportunity to learn about
blindness consumer groups will be on offer.
I do hope the big winter chill and the big power bill is not keeping the
smiles from your dials but if they are- exercise is cheap and it normally
warms you up!
Best regards,
Fraser Alexander: President
3. History of Spectacles
Legend, scholastic disputes, travellers tales and downright
fabrications have all encumbered the quest for knowledge on the early
history of spectacles. Rock glass must have been known in early
times, but even manufactured glass has a considerable antiquity.
References to glass manufacture abound in the bible, early Egyptian
writings, and it was an advanced industry before Roman times.
Definitive evidence on the use of glasses is difficult to pinpoint.
Myopia was regarded as a permanent defect, considered by Roman
lawyers a vicium perpetuum, diminishing the market value of a slave.
Travellers tales have made China the original inventor of glasses.
Evidence would suggest that the Chinese learnt about glasses
indirectly from Europe through the inhabitants of Malacca.
Alhazen carried the theory of vision to a sufficiently advanced level to
have been able to introduce the use of lens. But it was much later that
it was actually achieved. The first recognition of the possibility seems
to have come from Roger Bacon who discussed the use of segments
of spheres and showed that letters and small objects on which they
were placed appeared magnified. “For this reason such an instrument
is useful to old persons and to those with weak sight for they can see
any letter, however small, if magnified enough”.
Reference to glasses became more frequent at the beginning of the
14th century. The first medical reference is by Bernard Gordon,
Professor of Montpellier in 1305. He recommends a collyrium of such
potency “that it will enable those whose sight is weak from old age to
read without glasses”... Guy de Chauliac (1353) also recommends
collyria, but adds that if it does not help recourse should be had to
glasses.
Attempts to trace the invention of glasses to a particular person has
met with little success. A manuscript dated 1299 refers to recently
invented glasses, while another manuscript refers to the invention of
spectacles 20 years previously. A tomb stone in a now demolished
church in Florence read “here rests Salvino d’Armato of the Armati of
Florence, the inventor of spectacles. God pardons his sins. A.D. 1317.
There is ongoing discussion as to the validity of this.
More conclusive evidence was published in 1845 by Casemaecker of
Ghent. Fleeing from Papal wrath, Roger Bacon passed on his
invention of spectacles to a friend, unfortunately this story was found
to have been invented by a journalist. Therefore, the generally
accepted fact is that glasses were introduced somewhere towards the
end of the 13th century. They were in vogue by the middle of the 14th
century when painters and sculptors began to endow biblical figures
with the accessory. Public documents began to make reference to
them, and wills disposed of glasses carefully for they were still a
costly item. It was not until the beginning of the 16th century that
concave glass began to be used.
Spectacles were not well received by the oculists, unable to conceive
how an eye that does not see well would see better with something in
front of it. By 1623 the use of high convex lenses after cataract
operations is clearly indicated, while a scale of different strengths of
reading glasses for different ages was laid down. Women apparently
required more than double the strength, for not only do they perform
more delicate work, but their eyes are naturally weaker.
Until the middle of the 19th century the fitting of glasses was the
prerogative of untrained vendors, mostly itinerant, who combined this
business with the other occupations usual to peddlers. Oculists
recommended patients go to a shop and select the most suitable pair.
Hostility to glasses was evident until the mid-nineteenth century, one
book suggesting that use of the concave lens could deform the eye
while another believed they could cause short-sightedness to develop.
In England an isolated voice was raised pleading for the use of
glasses.
By the 1850’s tests for near and distance sight had been introduced,
with Snellen putting them on a scientific basis.
Use of the
ophthalmoscope paved the way for the objective determination of
refractive errors. The introduction of prisms into ophthalmology also
dates from this period. Donders in 1847 and von Graefe in 1857
showed their value in muscle insufficiency.
The oldest spectacles, known from a painting by di Modena in 1352,
consisted of two lenses in rims, joined centrally. The inconvenience of
holding such glasses in position for any length of time led to a
modification suggesting sugar tongs. Metal rims gave way to leather
ones and glasses were secured by a tape tucked under a hat. Various
forms of lorgnette followed, but original attempts at ear-rails added to
the already heavy weight of the spectacles. By the end of the 18th
century glasses had a nose piece with a spring, and gold ,silver, steel,
fish-bone, wood and horn had all been used for making spectacle
frames.
This information was downloaded from www.mrcophth.com
4. People: Glaucoma by Barry McDonald
On a dark, cold winter’s night in 1947 we were driving from Balclutha in
South Otago to my grandmother’s home in Mosgiel just south of
Dunedin. Suddenly my mother cried out “I can see two lamp-posts and
one of them is in the middle of the road”. I have never forgotten that
night sixty years ago as that was the first I knew of her condition. Mum
was eventually diagnosed with glaucoma, twenty five years later, at the
age of fifty two. By the time she was sixty-five she was almost blind. I
later discovered that two of her aunts had been totally blind by the age
of fifty.
At the age of forty-two I was also diagnosed with glaucoma and began
the usual treatment of eye drops and regular eye pressure checks. My
eyes were progressing well until I hit the age of sixty and then the
custard hit the fan! After a routine field test the consultant explained
that I had lost some of my visual field in my right eye, and I then
developed cataracts in both my eyes. As I had already lost about 80%
of the sight in my right eye removing the cataract was not really
considered.
In December 2006 I went in to have the cataract on my left eye
removed, but during the operation the lens capsule burst and nine
days later I had lost all the central vision in that eye. This was followed
by two and a half years of endless visits to consultants and general
practitioners, in total eight consultants and five GP’s, mostly at the
request of the ACC. By 2008 the pressure in my better eye was
increasing rapidly, and my consultant tried various combinations of
glaucoma drops but nothing was successful. A drop my mother had
tried many years before which had resulted in a retinal detachment
was one of the few left to try. Although I passed this information on the
consultant insisted I use it, and a month later I had a retinal
detachment! Following emergency surgery for this my eye pressure
went from 15 to 38. Further emergency surgery resulted in a
permanent drain being implanted in my eye.
I had worked in the financial business all my life, and computers were
the ‘tools of my trade’... Although I was 65 and retired I was becoming
increasingly depressed and frustrated at my inability to use my
computer. ACC sent occupational therapists and career advisors to
visit me, all to no avail. I decided to try and do something about it
myself. Speaking with my daughter’s husband I explained my
frustration to him. He replied that his sister lived in Boston and he was
happy to contact her and see if she could find anything which might be
available in the United States which could help me. The result was the
Microsoft Comfort Optical Mouse 3000. With almost no vision in my
right eye and only peripheral vision in the left I am now able to spend
much of my day at my computer. The mouse magnifies up to 400% and
allows me to zoom in and out to see either the whole screen or just a
single word. I have since discovered several other products which
have helped me to cope with my vision impairment and I now truly
believe that life is for living!
If you wish to know more about the products Barry uses please
contact him at [email protected]
5. Bequests
A bequest will be an enduring way of supporting Retina NZ, and
whether modest or substantial, will effectively contribute to Retina’s
continuing leadership in peer support, public education and treatment
research.
Bequests to Retina NZ can be dedicated to a specific purpose, or for
the general benefit of our membership. Consult your legal advisor
when drafting your will, or add a codicil to your existing will to ensure
it accords with your wishes. Knowing what is important to you allows
us to suggest how your gift, pledged through your will now, can meet
Retina NZ’s future needs.
If you wish to leave a bequest to Retina NZ Inc and require more
information please contact our President Fraser Alexander, Ph 09
6388091 or by email at [email protected]
6. Recipe
Lemon Pepper Tuna Melt
200g canned tuna in spring water, drained and flaked
1 tsp lemon pepper seasoning
1 bunch chives finely chopped
1/2 cup semi-sun-dried tomatoes finely chopped
1/2 cup finely chopped Lebanese cucumber
2 tsp lemon juice
2 tsp olive oil
4 thick slices crusty bread toasted
4 slices cheese
Preheat grill on high, combine the drained tuna, lemon pepper, chives,
tomatoes, cucumber, lemon juice and olive oil in a bowl. Toss gently
to incorporate the ingredients well. Divide the mixture between the
slices of toasted bread, place a slice of cheese on top and grill until
golden. For the best results ensure the vegetables are very finely
chopped. A can of salmon can be used to replace the tuna.
7. Focus on Myopia
On discovering in 1987 that young chickens treated with spectacle
lenses change their eye axial growth so that they again reach the
normal refractions, with the lenses still in front of their eyes, we
believed we had found the mechanism that drives myopia
development in humans. We also believed, after a detailed analysis of
the biological mechanisms, that myopia in humans could be
understood and prevented. While a lot was learned from subsequent
experiments ( such as the visual control of eye growth is achieved by
the retina itself, and that the retina can even determine the sign of
dioptric power of the lens) it remains unclear why children become
myopic before they were wearing any lenses. While there is little
doubt that ‘near’ work is a factor associated with myopia in most
epidemiological studies, the statistical association is not always very
high, suggesting it may not be the key factor.
Most people do not accommodate perfectly when reading a text on
paper, they focus a little behind it which places the plane of focus
behind the retina, like with a negative lens. This factor relating near
work to myopia has not been proven. Other thinking has shown that
children have a lower risk of myopia when they spend more time
outside, children with the highest rate of myopia, those living in
Singapore, spend less than 3 hours a week outside.
Researchers are enquiring into the genetic basis of myopia. The risk of
becoming myopic increases with the number of myopic parents. There
is also a high association of refractive errors in dizygotic twins, higher
even in monozygotic twins. While the issue of shared environment
cannot be ignored, there is little doubt there must be a gene that
predisposes an individual to myopia. Research done in 2009 has
shown that many variables seem to be genetically determined, and
many large studies have already been carried out with 15 loci already
having been identified.
Interfering optically with the development of myopia is being
examined. Since it is known that eye growth is guided by defocus, the
exact central and peripheral patterns of defocus appear as critical
variables. Regular spectacle lenses for myopia correction often
impose relative hyperopia in the periphery which could further
stimulate eye growth into myopia. New spectacle lens designs are
currently tested that impose myopia, rather than hyperopia, in the
periphery in the hope that they reduce myopia progression. The major
problems are distortions induced by such lenses well known to people
wearing reading glasses.
The exciting idea of inhibiting axial eye growth by drugs, applied as
eye drops, is still being pursued. The drug closest to marketing failed
to eventuate because the phase 3 trials were required to run for 5 years
which made obtaining funding difficult. It was found in 2007 that
insulin had a very powerful myopia inducing effect in the chicken
model, but preferentially when the retinal image sharpness was
reduced at the same time by spectacle lenses. The retina loses its
ability to recognise the sign of imposed defocus and only stimulates
myopia. It would be intriguing to find out how insulin interferes with
the retinal image processor that guides axial eye growth, this is a
current project.
Myopia is not only the world’s most frequent ocular disease, with still
no satisfying rational therapy, but is a very interesting biological
problem with many open questions. Myopia is not a matter in
inaccuracy in biological design, but is an intended response to an
inappropriate input.
Downloaded from the Institute of Ophthalmic Research, University of
Tuebingen, Germany: www.vision-research.eu
8. Stem Cell Research for AMD
Scientists have long believed that stem cells hold promise for treating
a variety of diseases including age-related macular degeneration.
Recent news that pharmaceutical giant Pfizer is supporting AMD stem
cell research at University College in London brought renewed patient
interest in this potential therapy.
“With stem cell research there are numerous questions yet to be
answered such as how will this work in humans, is it safe, and which
patients will be able to benefit from this potential therapy” said Alan
Cruess, Chief of Ophthalmology at Dalhousie University. Members of
the AMD Alliance International Science Advisory Panel have discussed
the viability of stem cell research for AMD and are hopeful that clinical
trial data and potential therapies will be available in 5-10 years. The
UCL collaboration with Pfizer will examine how human embryonic
stem cells differentiate into retinal pigment epithelium (RPE) cells with
the goal of developing stem cell based therapies primarily for wet and
dry AMD. The dysfunction or loss of RPE cells plays a critical role in
AMD.
While there are still a number of obstacles to overcome, a treatment
using stem cells could be a viable therapy for patients. The treatment
would involve replacing a layer of degenerated cells with new ones
created from embryonic stem cells. These stem cells are ‘blank’ cells
that have the ability to turn into any cell type. In this case they are
transformed into copies of the missing cells in macular degeneration.
The surgery would be done via injection to the back of the eye. It is
believed that the surgery could eventually be done in less than one
hour and become a routine procedure.
The technique has been successfully tried on rats with a disease
similar to AMD. The British team has also successfully tested
elements of the technology in pigs. Human clinical trials are expected
to begin within two years.
This information was downloaded from www.amdalliance.org
9. Results from Neurotech’s NT-501 Phase 2 RP Studies
Neurotech Pharmaceuticals has announced that it’s product, NT-501
has demonstrated a strong biologic effect in two Phase 2 clinical trials
for retinitis pigmentosa. In both studies there was a statistically
significant dose-dependent increase in retinal thickness involving
photoreceptor layers as measured by optical-coherence tomography
(OCT). The effect has also been observed in patients with geographic
atrophy associated with dry AMD. The effect is believed by the
company to be neuroprotective.
NT-501 is an intraocular implant that consists of human cells that have
been genetically modified to secrete ciliary neurotrophic factor
(CNTF). This is the growth factor capable of rescuing and protecting
dying photoreceptors and is delivered directly to the back of the eye
by the encapsulated cell technology (ECT) platform. Delivery via ECT
bypasses the blood-retinal barrier and overcomes a major obstacle in
the treatment of retinal disease.
The first trial studied 65 patients with later stage RP and vision
between 20/63 and 20/320. The second trial studied 67 patients with
earlier stage RP and vision better than 20/63. Each patient received
either a high or low dose NT-501 implant in one eye and a sham
treatment in the fellow control eye. At 12 months no trend in visual
benefit was observed in either study , possibly due to the slow
progression of the disease. There were no NT-501 associated serious
adverse events reported.
It is hoped that the biological changes observed in RP patients treated
with NT-501 will lead to a benefit in visual function. However, the
progression of this disease is slow and there has not been a visual
benefit in the treated eye relative to the control eye in the short 12
month period. Encouraged by the consistent biological effects of
CNTF observed in the Phase 2 RP studies patients will be followed and
the normal clinical development path will be adhered to. It is hoped
that vision preservation will be observed when all the information is
gathered at the conclusion of the clinical trials.
Explants of 25 NT-501 devices from these two studies were performed
between 12 and 24 months following implantation. All have been
found to have uniformly healthy viable cells that continue to produce
therapeutic levels of CNTF. In addition to the RP studies Neurotech are
actively developing NT-501 for geographic atrophy associated with dry
AMD. A phase 1 study for a second product, NT-503 in wet AMD, is
proposed for later this year. NT-503 has the potential to provide a
one-time administration for a 12-18 month period versus the current
wet AMD treatment that requires monthly injections.
This information was downloaded from www.neurotechusa.com
10. Geographic Atrophy
Sirion Therapeutics recently announced interim results from its Phase
2 clinical trial of their drug fenretinide for the treatment of geographic
atrophy associated with dry AMD. The positive results put the drug on
a fast track with the US Food and Drug Administration. Fenretinide,
provided in tablet form, is a vitamin A binding protein antagonist and
may work by reducing the formation or effect of drusen under the
retinal pigment epithelium. Patients with lesions of all sizes who
received 300mg of fenretinide daily had slower rates of growth of the
geographic atrophy than patients in control groups. A phase 3 trial
with more than the 245 subjects already studied is being planned.
11. Nanoparticle Delivery of Genes in Lebers Congenital
Amaurosis
Researchers from the University of Oklahoma recently demonstrated
the successful use of RPE65 nanoparticles (plasmids expressing
human RPE65 cDNA compacted into red-like particles with a lysine
peptide conjugated to polyethylene glycol) for delivering a gene
therapy for treatment of Lebers amaurosis, a retinal degenerative
disorder caused by mutations on the RPE65 gene. The nanoparticle
approach has the potential to overcome limitations of viral vectors
including random integration into the host genome, inflammation, and
more severe outcomes including death.
It also demonstrates
superiority over other non-viral gene delivery approaches in its
transfection ability and duration of expression say the researchers.
The findings indicate that successful and sustained gene expression
and functional improvement can be attained using the nanoparticle
approach.
12. Warnings of Possible Damage
Autofluorescence Imaging of the RPE
From
Fundus
Fundus autofluorescence (FAF) imaging is one of the newer
techniques for examining the retina in health and disease. It identifies
lipofuscin in retinal pigment epithelial cells and appears to provide
information that cannot be obtained from other imaging techniques
like fundus photography, fluorescein angiography, or optical
coherence tomography. David Williams of the University of Rochester
and his colleagues are finding that it may have a downside; possible
damage to the retina from the blue light used in FAF imaging.
Lipofuscin derives mainly from uptake by RPE cells of photoreceptor
degradation products. It fluoresces yellow when it is stimulated with
light in the blue range. Lipofuscin accumulates with age and in certain
retinal degenerative diseases. FAF imaging can be used to assess
normal lipofuscin accumulation and also disease status in conditions
such as Stargardt disease, Best’s vitelliform macular dystrophy, and
AMD.
When Dr William’s group examined the potential in monkeys for light
induced retinal damage from FAF they found a deleterious effect at
levels of light exposure that were even lower than the maximum
permissible levels (MPE). The fact other clinical procedures such as
slit lamp examination, fundus photography, fluorescein angiography
and retinal surgery are often performed at light levels close to the MPE
makes the study potentially relevant across all of ophthalmology.
Patients who have retinal disease that may make them particularly
vulnerable to blue light should discuss with their retinal physicians the
importance of minimising light exposure during retinal examinations.
The previous three research articles are from reports of the Twelfth
Annual Vision Conference and ARVO 2009 Annual Meeting
13. Quotes
Try to say the very thing you really mean, the whole of it, nothing more
or less or other than what you really mean. That is the whole art and
joy of words: C.S. Lewis, 1896-1963
There is nothing more powerful in the world than an idea. No weapon
can destroy it; no power can conquer it, except the power of another
Idea: Anon
14. Coping: Low Energy Lightbulbs
Following recent press coverage about the potential withdrawal of the
traditional light bulb the question has been asked by those with
Retinitis Pigmentosa whether there are any hazards resulting from the
use of low energy light bulbs.
These bulbs work like the long tubular fluorescent light. The old type
of tungsten filament lamp is very inefficient, as only a tiny percentage
of the electricity energy that goes in is converted into light. The vast
majority is converted to heat, which is why that type of bulb feels so
hot. The new bulbs give about four times as much light for the amount
of electricity that goes in.
One possible hazard with the new lamps is due to breakage, they do
contain a tiny amount of mercury. However, the amount is so small
that you would need to break many bulbs at the same time in a closed
room to cause even a slight hazard. There is a potential problem with
flicker, but this has been eliminated in the newer versions.
These bulbs do emit a small amount of ultraviolet light which could be
a problem for people with skin or retina problems but again the
amounts are very small. This needs to be considered in relation to the
amount you get from daylight. You would need to sit with your face
almost touching the bulb (within 2cm) to get the same dose as midday
summer daylight. At 30cm away there should be no problem at all.
This article is courtesy of the Western Australia RP Foundation
newsletter.
15. How To Guide People With Sight Problems
There are no hard and fast rules on how to guide people with sight
problems, but here are some guidelines offered by the Royal National
Institute of the Blind. The practical advice offers confidence when
guiding people with sight problems. Please remember that many
people prefer to keep their independence or dislike physical contact
due to culture, gender, or just like to protect their personal space.
When you meet someone with a white cane or guide dog remember
they may not be totally blind. Many of these people may have some
useful vision but may appreciate your help at times, perhaps in an
unfamiliar place or at night time. Give precise verbal instructions, it
does not help to say ‘its over there’... Please say when you are leaving
or you may find the person is talking to an empty space.
If you find someone you think needs assistance offer help and
introduce yourself. If your offer is accepted ask the person where they
want to go and how they would like to be guided. Ask if they would like
to take your arm. Some people will be used to this technique whereas
others may like to put a hand on your shoulder or follow you closely.
Allow the person to take hold of your arm with their fingers in the
crook of your elbow. You need to keep your upper arm straight. The
person you are guiding will be at least half a pace behind you which
makes it easier to tell when you are turning by the movement of your
body.
If you need to walk in single file in shops or busy areas the person you
are guiding will need to walk behind you. Tell the person you are
approaching a busy or narrow area, and move your guiding arm to the
middle of your back, keeping it straight. When you are able to walk
side by side again move your arm back to its normal position.
Kerbs and Roads
When approaching a kerb say so and whether it is up or down. Pause
before stepping up or down and the person you are guiding will feel
the change in your body movement. When approaching a rounded
kerb make sure the person reaches it at the same time as you. Do not
assume that because a person is standing by a roadside they want to
cross, and your offer of help may be declined. Always cross roads
straight across, use a pedestrian crossing if there is one, and allow
plenty of time for the person you are guiding to cross at a normal pace
and without taking a risk. If you are parting company on the other side
of the road do tell the person which way they are facing.
Steps, Stairs and Slopes
Tell the person you are guiding whether the steps go up or down. If
possible place them on the side with the handrail. If you need to
change sides ask them to stand still, show them the handrail. The
person you are guiding will feel your arm move when you put your foot
on the first step. When you are on the second step they are on the
first. Tell them when you have reached the last step and allow them to
find it with their foot. When they feel their arm resume its normal
position they will know you are both on the level again. Going
downstairs is more hazardous so give the person you are guiding time
to hold onto the handrail and gauge the edge of the first step. Let them
know when you have reached the bottom step. If you are shorter than
the person you are guiding take your first step on the same side as
your guiding arm. If the person you are guiding has a guide dog they
may prefer to descend the stairs themselves.
Escalators and Lifts
Many blind and partially sighted people prefer to avoid escalators. If
they are happy to use one guide them to the moving handrail and say
whether you are going up or down. It is often best if the person you are
guiding negotiates the first step by themselves as escalators are often
too narrow to take two people side by side. If possible move ahead on
the escalator so you can help the person off. If there is no alternative to
an escalator and the person is not happy travelling on one arrange to
have it turned off while you negotiate the steps.
Lifts are
straightforward, move in side by side and say whether you are moving
up or down.
Doorways
These can be a little complicated. Tell a person you are guiding if a
door is opening towards or away from them. Always try to go through
a doorway with the person you are guiding on the hinge side. Open
the door with your guiding arm and they will be able to tell whether the
door is moving inwards or outwards... If you are going through a
swing door tell the person so they do not try to close it. If you are in
doubt it may be easier to let the person go through the doorway by
themselves. Revolving doors are better avoided, particularly if the
person has a guide dog. Tell people if you are approaching an
automatic door and ensure it has opened properly before guiding the
person through.
Seating
Never back someone into a seat, always guide them to it and describe
it to them. Tell them if it is a dining chair, low sofa or office chair. Ask
them to let go of your guiding arm and place their hand on the back,
arm or seat of the chair. If the chair is pushed under a table put their
hand on the chair back and tell them that there is a table. It is very
important to say if a chair is on wheels.
Rows of Seats
Most people prefer to be led into rows of seats, you may need to
change sides to do this. You will need to side-step until the person
you are guiding is central to their seat. When you are leaving you will
need to step to the other side of them so you can lead in the same way.
Cars and Taxis
If you are travelling by car or taxi tell the person with a sight problem
whether they will be getting in the front or back seat. If you are using a
van or a ‘people carrier’ say so because the height of the step and
space inside is very different from an ordinary car. Place your guiding
hand on the car door handle and tell them whether the car is facing left
or right. This allows them to find the top and corner of the car door to
avoid a nasty bump on the head. If you open the door place your
guiding hand on the roof and leave the rest to them. Ask if they need
help with locating and fastening their seatbelt.
Buses, Coaches and Trains
There are no hard and fast rules as these vehicles vary so much in
design. Make sure you tell the vision impaired person about any wide
gaps between the steps and the platform or footpath, and lead the
person you are guiding on and off. Walk in single file along corridors
and aisles showing the position of backs of seats.
Guiding People With Other Disabilities
You can use many of these techniques with someone who has a
combined sight and hearing loss. It is important to understand they
may have different communication needs. It is best to approach
people from the front speaking as you do so. This enables people to
use their remaining useful sight and hearing. If someone does not
respond place a hand on their upper arm and leave it there. People
who are frail or who do not wish to be touched may need a different
approach.
Other Hints
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Match your pace to the person you are guiding
Give them time to hold your arm securely before moving off
Remember to give adequate room around obstacles
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Watch our for hazards at head height, lamp posts and bollards
Explain what loud noises are
Explain changes in ground surface, particularly if you are walking
onto grass or gravel
Keep your guiding arm still and relaxed, do not wave it around or
use it to point out things
Remember that older people and those with other disabilities may
need extra consideration
This information has been downloaded from the Royal National
Institute of the Blind www.rnib.org.uk
Some of these guiding
instructions may differ from those suggested by the RNZFB
16. Quotes
It is our attitude at the beginning of a difficult undertaking which more
than anything else will determine its successful outcome: William
James-American Philosopher
Man lives more by affirmation than by bread: Victor Hugo
17. Book Review
Surpassing Expectations by Lawrence Scadden; Xlibris Corporation,
2008. TB 8069
Lawrence Scadden spent his career working to improve the lives of
people with disabilities through the application of appropriate
technology and access to science and mathematics education.
Blinded at the age of five in a childhood accident, he knows the
empowerment that technology and education can bring to the blind.
Lawrence held senior level scientific, management, and policymaking
positions in both the private and public sector.
On graduating from high school, and with offers of scholarships from
several prestigious universities, Lawrence and his family were advised
not to allow him to follow his dreams and enrol him in a trade school
where he could gain practical skills. He dreamed of studying physics
but was told no blind person had ever become a physicist, erroneous
information, but went on to earn a doctorate and enjoy an
extraordinary and fulfilling working life as a researcher, scientist,
administrator and facilitator. His work often required extensive
international travel, often alone, and to places such as Russia and
India. Lawrence describes the techniques he uses to ensure his safety
when travelling independently.
His passion was to harness the power of new technologies to serve the
special needs of others. Answering many of the questions that people
hesitate to ask a blind person, Scadden describes how he copes with
his blindness. The initial rejection of employers and the depression
and anger this invoked, the imagery that he experiences in his
thoughts and dreams, how he writes, reads, moves around confidently,
and the adaptations he had to make as a husband and father. A long
time user of echo location, he explains how he took part in research to
try and discover the accuracy of this mobility tool.
His memoir also describes his role in drafting legislation to allow
enhanced use of computers for people with disabilities, and recounts
invitations to speak and advise in venues such as the White House,
Universal Television Studios, and his interactions with famous people
such as Swedish royalty.
Scadden wrote his book to inspire others to overcome their
difficulties, to encourage and motivate them to persist, to explain the
role that technology can have in helping them to attain a higher quality
of life.
18. Notices
Retina New Zealand AGM and Conference
Our annual general meeting and conference will be held on Saturday
the 26th of September 2009 at 10.30am in the Kapiti Community
Centre, Ngahina St, Paraparaumu. The theme is ‘Coping With Low
Vision and Macular Degeneration’... Our main speakers are Genevieve
McLachlan of Adaptive Technology Solutions and Andrew Black, an
optometrist who also works at the Low Vision Clinic in
Wellington.There will be hands-on displays for people to try during the
lunch-break. Please join us for drinks and nibbles at the conclusion of
the conference.
If you are intending to come to the AGM and conference could you
please ring us on 0800 233 833 for catering purposes and to let us
know which sessions you hope to attend.
Please note that this is the only notice you will receive about the AGM
and conference, although the conference programme is available as a
link on our website www.retina.org.nz
Nominations for President
Our President is elected for a two year term, therefore this position
becomes vacant this year. If you wish to nominate someone for the
role of President could you please ring us on 0800 233 833 or email
[email protected] to obtain a nomination form. Nominations for
all other executive positions in Retina New Zealand must be in the
hands of the secretary by 10.00am on the morning of the AGM,
Saturday the 26th of September. You may also obtain a proxy voting
form by contacting us at the above email address or telephone
number.
Accommodation for AGM
We have negotiated special rates at the Kapiti Court Motel for
members coming to our AGM and conference over the weekend of the
26th and 27th of September. Units sleeping 2-3 people are available
from $120-$150 per night, please mention you are attending the Retina
Conference and pay for your own accommodation. To make a
reservation phone 0800 52 66 83. If you would like more information
about the motel or are coming on your own and are willing to share
please phone 0800 233 833.
Retina Australia Triennial National Congress
To be held in Brisbane from the 23rd-25th of October, the keynote
speaker is Professor Elizabeth Rakoczy on ‘Is there light at the end of
the tunnel’? Other topics to be covered include gene therapies, drug
treatments for photoreceptors, vision prostheses and stem cell
therapy.
For full information and registration go to
www.retinaqld.org.au
If you require further information please
contact the editor on 07 8533 612 or by email at [email protected]
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: [email protected]
Peer Support Coordinator
Membership Officer
Elizabeth East
Email: [email protected]
PO Box 2232, Raumati Beach 5255
Telephone 04 299 1801
Please note: The deadline for articles for the spring issue is October
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 [email protected]
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
by ringing and requesting the ones you require. A charge 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 of RP,
macular degeneration or other retinal degenerative disorders.
Auckland Genetic Hotline (Northern Regional Genetic Service)
0800 476 123 or 09 307 4949 ext 25870
Wellington Genetic Hotline
0508 364 436 or 04 385 5310
Christchurch Genetic Hotline 0508 364 436 or 03 379 1898
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