The Newsletter of Retina New Zealand Inc

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

1. From the Editor

2. Letter to the Editor

3. From the President’s Desk

4. Planning Meeting Notes

5. Smoking and Macular Degeneration

6. AMD and Nutrition

7. Research: Bionic Eyesight, DHA Study, Ophthalmic Shingles

8. Vision Australia

9. Coping

10. Radio Reading Service

11. People: Petronella Spicer

12. Snippets

13. Book Reviews

1. From the Editor

We are all being encouraged to get more sunlight to raise our vitamin D levels. While this seems contrary to the stay out of the sun message which has predominated of late, exposure to more sunlight is becoming necessary. Those of us with retinal disorders must still be careful to wear our sunglasses when outside, even early in the morning or in the late afternoon.

Summer, if that was it, has been and gone. My neighbours and I have been fighting a losing battle with twitch, all of us can be seen out with our noses on the lawn in the cooler part of the day searching for the runners and digging out the roots. It did not seem to be a good gardening season, nothing really flourished.

Those of you who have difficulty reading and may not yet be eligible for Foundation membership, and thus library use, may be interested in the article on the Radio Reading Service. While reception without a shortwave radio may be difficult in some areas, it is easy to access in the Wellington/Manawatu region. Information on this excellent service is available on page 15. After much thought I have started this newsletter with two articles on the relationship between smoking and AMD. The final of Andrew Sangster’s talk at the AGM on nutrition and AMD is on page 8, and in the snippets section on page 17 I have included information on the digital text centre which has books available for free downloads. One of the respondents to our survey requested information on the effect shingles can have on eyesight so I have included some information on page 11. I also received a request for information on overseas blindness organizations so Vision Australia, a much larger organization than the RNZFB, features in this newsletter.

When you receive this newsletter I will be in England. I am travelling to Britain for the first time to meet up with friends, visit long lost relatives, and to see as much of England and Scotland before my failing sight prevents me enjoying travel. Travelling alone with poor eyesight will present challenges I am looking forward to overcoming, and hopefully will encourage others to travel solo rather than relying on someone to go with them. I have been receiving lots of advice, some very useful, but some rather outdated-one person told me London’s tourist attractions all closed on Monday-they had not been there for about 25 years! I will look forward to telling you of my travels when I return.

Susan Mellsopp

Phone: 07 8533 612

Email: editor@retina.org.nz

2. Letter to the Editor

Dear Susan

I have just read the latest newsletter, good stuff. I can’t help but note the differences in my own shaving practices to those suggested in your newsletter though. I found the suggestion for holding the shaver a problem in particular. If you hold the shaver near the head you increase the chances of shaving cuts as there is room for the blade to be forced more than it is designed to cope with.

There are also problems with using an electric shaver. If these are used there is a tendency to stimulate hair growth wherever the shaver head is used. If one is used the user must be careful to contain their sweeps over the face to the areas where hair already grows or where they want hair to grow in the future. In my experience, there is less control using an electric shaver than a manual one.

Dr Jonathan Godfrey

3. From the President’s Desk

Dear Retina members. This is my last report as President as I am moving to Australia in late May. I have been on the Christchurch committee since it was formed in 1993 and on the National Executive since 1998. I have met many wonderful people through my involvement in Retina NZ and I certainly hope to maintain friendships through email and will be reading the newsletters, perhaps I can be the Australian correspondent! Retina NZ has been a huge part of my life over the last 10 years and more. It has been a privilege to meet and work with people who are involved because they care. As President I have also had contact with professionals working in other related organizations, they care too.

The way to get the most out of your membership in any organization is to get involved. In order for the national executive to operate effectively it relies on having support from people getting involved at a local level. The survey we conducted last year showed that many of you value being able to make contact with other members in your locality. While many don't want to or can’t attend meetings, there is useful stuff that can be done at the end of a phone.

Following a successful planning meeting in Wellington in late April Camille Guy, our Vice President, who lives in Auckland, will hold the reins until our national AGM in August when elections are due.

One of the main aims of Retina NZ is to support and disseminate research information. The future looks bright as there is much research being done on many fronts which will have practical applications for you and me or your family in the future.

So, in the meantime, look after your eyes, eat well, and keep using them even if you can’t see well. One day therapies will be available to halt or even reverse your eye condition.

Kaye Newton

Email: president@retina.org.nz

4. Planning Meeting Notes

1. Members of the National Executive meet twice a year. A weekend planning meeting is held in Wellington in April, and they meet again following the Annual General Meeting in September. These notes are a summary of some of the topics which were discussed during the weekend of 21/22 April.

2. Retina NZ is looking at revising its constitution to reflect what it is doing on a day to day basis. This will also comply with registration for the charities commission.

3. The National Executive reviewed its 2006/2007 list of goals. The majority of our goals for this period have been achieved, although some are still ongoing.

4. The RNZFB has published several detailed information booklets recently. These cover the topics of Retinitis Pigmentosa, Diabetic Retinopathy, Cataracts, Macular Degeneration and Glaucoma. If you would like a copy of one of these booklets please contact the National Secretary. Her details are on the inside cover of this newsletter or at the end of the email and taped versions.

5. Did you know that every time you purchase a packet of Yates Cosmos Bright Eyes seeds a donation of 40c is made to Retina NZ?

6. The Good Look Book-copies of this are still available at a cost of $10 and $2 p and p from the National Secretary. It is available of tape and CD.

7. If you require information on any aspect of Retina NZ or would particularly like to speak with a member of our peer support team please remember to call our 0800 number which is 0800 233 833.

8. Responses to our survey last year were discussed, particularly those regarding the newsletter. Your responses to other questions will be examined in greater depth in the coming months.

9. Our annual general meeting will be held in Christchurch in September. Further information will be sent to you regarding this at a future date.

5. Smoking and Macular Degeneration

I feel it is important to print a précis of these articles but it must be noted that not all forms of retinal degeneration are affected by lifestyle factors such as diet and smoking-Editor

There is now sufficiently strong evidence to prove a causal link between smoking and age-related macular degeneration. Awareness of this link is currently low. Campaigns in Australia and New Zealand have shown the effectiveness of the message about smoking and sight loss as a vehicle to convince smokers to try to give up. Calls to quit smoking helplines increased significantly following the screening of relevant warning advertisements. A recent UK survey also confirmed the potent impact of this message with 81% of people aged 25-39 saying they would give up smoking to avoid sight loss in later life.

The only avoidable risk factor for AMD that can be regarded as proven is the link with smoking. A study published in the British Journal of Ophthalmology in April 2005 of more than 4000 Britons aged 75 and older showed that those who smoked were twice as likely to have age-related macular degeneration as those who did not. Other studies have found that the relative risk may be as high as three to four times that of a non-smoker. A review of the association between AMD and smoking in ‘Eye’ in September 2005 that examined the results of 17 relevant studies found robust and consistent evidence that smoking causes visual impairment through AMD. The causality criteria used by the authors were the same as those applied to proving the causal link between smoking and lung cancer.

Studies in a number of countries confirm that people who stopped smoking 20 years ago have a similar risk of developing AMD as non-smokers, and the risk starts to decrease after 10 years of not smoking. Some studies suggest a link between the number of packs smoked and the likelihood of developing AMD. This was recently confirmed by a UK study published in the British Journal of Ophthalmology in January 2006.

This study found the increased risk of developing AMD also extends to passive smokers who almost double their risk of sight loss. It also provided sufficient evidence to show that smoking is the main modifiable risk factor for developing AMD and is responsible for at least a two fold increase in the relative risk, though some studies suggest it could be as high as 3-4 times. There is a similar causal link between smoking and nuclear cataracts.

With the ageing of the population not all cases of AMD can be prevented. It is therefore important to modify the only proven risk factor. Introducing this information into anti-smoking campaigns is a novel incentive to quit.

Efforts to reduce the number of people who smoke and to protect society from the harmful effects of active and passive smoking are gathering pace across the world. Bans on smoking in enclosed public places have now been introduced in Italy and Ireland and are being discussed in other countries. The World Blind Union and the AMD Alliance have called on the European Commission and the European Parliament to recommend the inclusion of a warning on the link between smoking and blindness on cigarette packaging. Appropriate graphic images should support this message. These warnings are not expected to make people stop smoking but are expected to be a contributory factor.

Information obtained from RNIB and AMD Alliance position paper on Smoking and Blindness, a campaign supported by the European Blind Union, May 2006.

No Smoking

Cigarette smoke reduces levels of plasma antioxidant, a substance in the blood stream, which produces retinal cells. Smoking also causes the protective layer between the retina and blood vessels to erode, resulting in poor circulation, irritation, and scarring.

Smoking damages the blood supply, and exposes the body to free radicals which cause cellular damage and poor circulation of nutrients to the retina and lens. It also produces cyanide, a retinal toxin, and may develop a problem called toxic amblyopia, dimness of vision not related to eye health. It has been reported that if you are 65 years of age and over, and smoke, you have double the risk of developing MD. One study also found that temporary abstinence from smoking sharply improved the night vision of smokers.

While smokers have double the risk of developing macular degeneration, that risk could be significantly reduced if their diets were rich in lutein and carotenoids, especially spinach, collard greens and kale, and low in saturated fats.

Information obtained from the MD Support website at www.mdsupport.org

Snippet

IBM is soon to launch a multi-media browser to make audio and video content accessible to people with vision impairments. It offers the same functions as using a mouse, and will be available free later this year. Video can be slowed down, speeded up, and adjusted to input from various sources, such as a screen reader.

6. Age Related Macular Degeneration and Nutrition

There have been a number of large, long term studies, performed on aging eyes. The most widely publicized are AREDS and BMES. From these studies it was shown that nutrition impacts on ARMD and cataracts.

The AREDS study found that taking high levels of antioxidants and zinc can reduce the risk of developing advanced age-related macular degeneration by about 25%. The AREDS formulation may play a key role in helping people at high risk for advanced ARMD keep their remaining vision. The supplement offered no apparent benefit to those with early ARMD. The formula was shown to have no significant effect on cataracts.

The formulation includes only 3 antioxidants; beta-carotene, vitamIn E, and vitamin C. Those older than 55 at risk of developing advanced ARMD, and without contraindications such as smoking, should consider taking a supplement of antioxidants, plus zinc, such as used in the AREDS study. It was also noted that subjects in the study had a lower intake of fruit and vegetables than recommended.

Fatty Acids

The human retina and macula contain a high proportion of polyunsaturated omega-3 fatty acids. These are found in oily fish and offal, and appear to play an important part in the functioning of the retina. The BMES study found a significant protective association between the frequency of consuming fish and ARMD, although high fish diets in the elderly have been shown to compromise the status of vitamin E. Types of dietary fat can influence the progression of ARMD, and a high intake of linoleic acid (omega-6) may cause the progression of ARMD and compromise the benefits of fish consumption.

Lutein and Zeaxanthin

These two phytochemicals are major components of the macular pigment. A preliminary study of autopsy eyes has found about a 30% reduction in lutein and zeaxanthin concentration in ARMD retinas compared to non-ARMD retinas. However, the serum levels of these carotenoids have not been shown conclusively to be associated with increased ARMD risk. A study demonstrated the possibility of enhancing macular pigment density through dietary supplementation with lutein. Although supplementation was ceased at 140 days the macular pigment density continued to increase over another 40-50 days, despite the serum levels dropping back to the baseline. This may be evidence of a slow turnover of carotenoids in the retina. Given that macular pigment functions to protect the macular from blue light damage and ARMD, there is potential benefit to be gained from the increase in macular pigment density that can be accomplished by supplementing a dietary intake of lutein. It should be noted this study was limited in its number of subjects.

Cataracts

Numerous nutrients are associated with reduced risk of cataract. These include vitamins A, C and E, riboflavin, thiamine, niacin, folate, a-carotene, lutein and fibre. High protein intake is also associated with reduced risk.

The risk for cataracts is 60% lower among persons who use multi-vitamins or any supplement containing vitamin C or E for more than 10 years. Vitamin C reduces the risk of cortical cataracts in women aged 60 or less. Lutein and zeaxanthin may retard the aging of the lens.

Safety issues are growing around the use of herbal supplements. Particular concern has been expressed about possible interactions between these products and conventional drugs. Of most concern is the bleeding tendency when herbs like ginko are taken along with aspirin or other blood thinners.

Ginko Biloba

Ginko has several biological actions which combine to make it a potentially useful agent in the treatment of glaucoma, improvement of central and peripheral blood flow, reduction of vasospasm, antioxidant activity and inhibition of apoptosis. Bleeding may occur inside the eye of patients taking ginko. Bleeding complications in the brain have also been reported. Further studies are needed to determine how the neuroprotective effect of ginko may benefit patients with glaucoma.

7. Research

Bionic Eyesight

People who have been blind for most of their lives have been able to see everyday objects with the help of a bionic eye that may one day restore sight to people with degenerative eye diseases. Results of the first clinical trial of an artificial retina in six blind patients have been so successful the sophisticated Argus II artificial retina is to be implanted in 75 volunteers. The artificial eye is a tiny video camera embedded in a pair of spectacles that sends images to electrodes implanted in the retina. If the research progresses well a device could be on the market early in 2009 at a likely cost of $45,000.

“We expected that all they would be able to see is just light and dark” said Mark Humayun, Professor of Ophthalmology at the University of Southern California. “But the subjects can differentiate in a test environment between a cup, a plate and a knife. They can detect motion…..and large objects without stumbling into them”.

The first clinical trial began in 2002 and involved a retinal implant with 16 tiny electrodes. The next stage, the second generation device, involves an implant with 60 electrodes which should give better picture quality. In 5-7 years a 1000 electrode implant will enable previously blind people to recognize faces. Millions of people with macular degeneration and retinitis pigmentosa could benefit from the device if it could be further refined and produced cheaply.

The bionic eye consists of 3 elements. The tiny video camera embedded in a pair of spectacles sends information to a receiver implanted behind the ear and from there to an electrode-studded chip implanted behind the retina. The chip’s electrodes stimulate the ganglion cells which transmit visual information to the optic nerve and then the brain. It should take one hour to implant the device because of its smaller size said Professor Humayun. Patients have to practice with an artificial retina for several weeks before they can begin to distinguish different objects. The speed at which they learn depends on how smart the patient is and how long they have been blind. An unexpected outcome of the experiment is that patients can often see in colour, when in reality they are seeing only in black and white. The technology cannot restore sight to patients who are blind due to severe optic nerve damage.

Sourced from the NZ Herald 21/2/07 and London Times

DHA to be Studied as Treatment for X-Linked RP

An investigative team from the Retina Foundation of the Southwest is conducting a Phase 2 clinical trial of docosahexaenoic acid (DHA) for the treatment of x-linked retinitis pigmentosa (XLRP).

Some retinal experts believe that DHA supplementation may slow the progress of XLRP and other forms of retinal degenerative disease including age-related macular degeneration and the dominant form of Stargardt disease. DHA is an omega-3 fatty acid that is abundant in the retinas of humans and other mammals, and it is important for optimal retinal health. People can obtain DHA through dietary supplements or the consumption of cold water fish such as salmon, tuna or mackerel.

Though the overall findings of two previous clinical trials of DHA supplementation were not strongly conclusive, it is believed that a larger trial with higher doses may show that DHA can slow disease progress and vision loss. In earlier studies subgroups of participants under 12 years of age who took DHA supplements had significant slowing of disease progression. A total of 66 patients will be enrolled for the upcoming study. They will be randomly assigned either a high dose of DHA supplement, or a placebo, for 4 years. Participants must be males between the ages of 7 and 32 with a diagnosis of XLRP (XLRP is most severe in males). Participants must have sufficient visual function so that disease progression and vision changes can be followed for the entire trial. Participants are being recruited in the US and Canada.

Information provided by the Foundation Fighting Blindness and the Retina Foundation

Ophthalmic Shingles

The human herpesvirus-3 (HHV3) lies dormant following childhood chicken pox but may flare up many decades later and produced ophthalmic herpes. It affects the area covered by the ophthalmic division of the trigeminal nerve.

Old age is the commonest risk factor, but it is also common in immunocompromised patients. In ophthalmic shingles photophobia may occur, and the forehead is often tender. The eye is only affected in about half of the cases. If the tip of the nose has a rash the nasociliary branch of the trigeminal nerve is involved. This branch supplies the globe and so it is very likely that the eye will be affected, this is called Hutchinson’s sign.

The eyes can be seriously affected with little evidence of a shingles rash. If Hutchinson’s sign is seen it may be wise to obtain an urgent referral to an ophthalmologist. Acute lesions of the orbit or globe develop within three weeks of the onset of the rash. They may resolve swiftly or recur over years. Symptoms include pain in the eye, redness, impaired vision and tears falling down the face.

Early effective treatment reduces complications. Among these are neuropathic keratitis, secondary glaucoma, conjunctivitis, optic neuritis and acute retinal necrosis. A permanent herpes infection may include chronic ocular inflammation, loss of vision and pain.

Downloaded from www.patient.co.uk

Quote: Knowledge advances by steps, not by leaps-Thomas Macaulay 1800-1859

8. Vision Australia

In 2004 Australia’s first truly national blindness agency, Vision Australia, was formed following the merger of the Royal Blind Society (RBS), the Royal Victorian Institute for the Blind (RVIB), Vision Australia Foundation (VAF) and the National Information Library Service (NILS).

Collectively these organizations had more than 400 years of experience in making a difference to the lives of Australians who are blind or have low vision. The organization was expanded further in December 2006 through amalgamation with the Royal Blind Foundation of Queensland.

Vision Australia is seen as a living partnership between people who are sighted, blind, or have low vision. They are united by a passion that in the future people who are blind or have low vision will have access to and fully participate in every part of life they choose.

It is the leading provider of blindness and low vision services in Australia, enabling more than 41,000 children and adult clients to live the lives they choose. Most of their services are provided free of charge. Vision Australia aims to excel in four main areas; making information accessible to clients, in problem solving that helps overcome barriers to a full range of life choices, training the community in solutions, and access; opening the door to new possibilities for their members.

Services offered by Vision Australia are wide ranging. They include access advice, accessible information solutions, audio description (of theatre performances), children’s services, and independent living. They have a large online equipment catalogue, educational bursaries, and of course a large talking book library.

Of particular interest are the human interest stories which are available to be read online. A family in which three children have recently been diagnosed with Stargardts Disease is the feature story this month. There is a wide range of eye conditions represented in the stories, though MD seems to predominate.

People who have difficulty reading various websites can access tools which may be downloaded to change colours and other features on websites to suit their own particular vision needs.

If you would like further information about Vision Australia it can be obtained from www.visionaustralia.org.au or at info@visionaustralia.org.au

Help At Hand: The New Adaptive Daily Living Helpline

The new ADL helpline for members is to be trialed between March and the 29th of June. It will be staffed by experienced ADL instructors three times a week: Monday 9.00am-12 noon; Wednesday 9.00am-12 noon; Thursday 1.00pm-4pm. Call the usual toll free number 0800 24 33 33 and option 1 will take you to general enquiries who will transfer the caller to the ADL instructor rostered on. If a call is made outside these hours the 0800 team will record contact details and make a time for the member to be called back during the rostered time.

Members may call for all sorts of daily living problems related to sight loss. Some problems may not be resolvable by phone, in this case a referral is made to a local ADL instructor and follow up will take place.

In addition to the Help at Hand phone line an appliance marking kit has been developed to supply to new members. This includes 5 ‘bump ons’ (small adhesive-backed raised dots) and some simple instructions to enable the member and/or their family to affix the dots to the appliances of their choice (stove, TV remote control, washing machine). Queries relating to these can also be answered by ‘Help at Hand’.

Instructions for Marking Your Home Appliances Using Bump-Ons

· Ensure surface is clean, grease-free and dry

· Bump-ons stick best on flat surfaces

· Keep marking simple-put on one or two temperature settings for oven

· Keep your finger on the bump-on while turning the dial of the stove so you match the pointer of the dial with your finger

· Do not lean over your stove to try and see the dial and bump- on-you risk being burnt

· Continue to use other safety methods when using your stove or other appliances

Pouring Liquids

Many people have difficulty pouring liquid into a cup and knowing when to stop.

Getting the Liquid Into the Cup

Use adequate lighting to help you to see, a task lamp or mounted light over your work area if necessary. Pour liquid over a sink area in case of spills.

Alternatively, use a plastic tray beneath the cup to limit any overflow. Use lighter and smaller kettles or jugs, being careful not to overfill as this makes it harder to control the flow of liquid. A rubber band around the spout can assist in holding the teapot or kettle in place. If you have difficulty lifting a kettle, tilting aids are available to help support the weight of the kettle. Use a plastic funnel with a shortened spout to direct the flow of liquid into the cup. Rest the funnel inside the cup to safely assist in pouring boiling water.

Knowing When to Stop Pouring

Pour liquids slowly estimating liquid level by weight and touch (cold liquids only). Feeling the temperature on the outside of a cup can give you an indication as to whether a cup is full or not.

Listen for changes in the water pitch as the cup fills, you can detect the level of liquid being poured into the cup by sound. Counting can also assist in judging the level of liquid being poured into a cup. Using a white or lightly coloured cup can provide colour contrast to dark liquids such as tea or coffee and assist in determining the level of the liquid. Add the milk last. Placing your finger inside the rim of the cup for cold liquids can provide an indication as to whether the cup is full. A ping pong ball can be placed inside a cup as a level indicator, it will rise to the top when the cup is full.

Pre-Measuring Method

Fill the cup with cold water ensuring enough room for milk if required. Place this exact amount of water in the kettle to boil. Place a teaspoon in the bottom of the kettle which will rattle when the water comes to the boil (useful for people with hearing problems who can feel the vibration when the kettle boils). Use a set of measuring spoons for coffee, tea and sugar amounts. Individual serves of long lasting UHT milk may be easier to use than pouring from a milk carton. Use sugar cubes or a sugar dispenser rather than a sugar bowl.

Other Hints

Heat the cup of liquid in the microwave. Coffee or tea can be added when the water is heated. Use a cooking timer to indicate that the water has been boiled which also serves as a reminder that the kettle has been put on.

Downloaded from www.visionaustralia.org.au

Quote: Each time a man stands up for an ideal, or acts to improve the lot of others, or strikes out against injustice he sends forth a tiny ripple of hope….and crossing each other from a million different centres of energy and daring those ripples build a current that can sweep down the mightiest walls of oppression and resistance-Robert Kennedy

10. Radio Reading Service

“Who cares if one million kiwis can’t read? We do! Our job is to turn print into sound for anyone who can’t see, hold or access everyday printed literature”.

The radio reading service is a radio station which operates out of Levin, and is a not for profit social service broadcast. It is the operational arm of New Zealand Radio for the Print Disabled Inc which was set up in 1985 to establish and operate the facility which now broadcasts the Radio Reading Service. Supported by RPH Australia colleagues who pioneered ‘Radio for the Print Handicapped’, the New Zealand Station came on air on the 9th of May 1987. It also operates throughout the United States, Canada and Australia. Recently new stations have been set up in England, Scotland, France and Mongolia.

The Radio Reading Service is on air for every person in New Zealand who might like to listen. They turn print into sound for anyone who finds it difficult to read conventional print. Research has indicated one million New Zealander’s are non-readers. Some 42% of working age people have inadequate reading skills to cope in the modern workplace. Their economic, cultural, social, family and personal welfare is at threat when reading is a problem.

The Levin studios schedule 127 hours a week of readings from a wide variety of co-operating publishers. Information is sourced from newspapers, magazines, and other publications. Content is not edited or abridged. Publications read include: Business News, Dominion Post, death notices, TV news, talking books, sport and racing, RN Euroquest, Australian Women’s Weekly, New Idea, Readers Digest, Consumer, Investigate Magazine, NZ Geographic, travel radio, people, children’s stories, farming, gardening, New Scientist, and even the Hour of Power.

Their primary coverage area on 1602kHz AM is the Mid Central Horowhenua-Manawatu region. They also run a domestic short wave outlet on 3935kHz from the same site. Contact: Radio Reading Service, PO Box 360, Levin, or phone 06 368 2229.

11. People: Petronella Spicer

I was diagnosed with Retinitis Pigmentosa 14 years ago, and my sight has deteriorated gradually over the years. Recently I was told there is scarring on my macula. It took me quite a long time to come to terms with my sight loss. Joining the Royal New Zealand Foundation of the Blind was another hurdle I had to overcome. Since then I have participated in many activities that I would never have had the opportunity to, or had an interest in, in my sighted days.

I started playing a sport called goalball, a fantastic game which is very physical and everyone on court is equal as we all wear blacked out ski goggles. I have had the opportunity to play in the New Zealand nationals and have been to Australia to play in their competition.

I have done a lot of tramping since joining the RNZFB. I have tramped the Abel Tasman and Queen Charlotte tracks, and have also done day tramps in the Milford area, Lake Ohau and Peel Forest. It is fantastic being in the bush listening to the birds and taking in all the wonderful smells. I do not take my guide dog on these trips but use a pole with a sighted person in front telling me when to lift my feet and where there are steps. I was also very privileged to be able to attend an Outward Bound course at Anakiwa with 9 other visually impaired people. An experience never to be forgotten.

I have taken up knitting again in recent years which I really enjoy and have managed to work out different techniques to help me now that I can no longer see the stitches on the needle.

With my guide dog Winnie, an Australian Shepherd, I give talks in the community. I think it is very important that the public know that a person who is losing their sight is not losing their marbles and is still capable of doing all tasks with a little adaptation. My life is also busy with 3 grandchildren, working part time as a tele canvasser, and being part of the Retina NZ peer support team.

Petronella, who lives in Christchurch, is often the person who answers our 0800 number.

Snippet

Not all children with sight loss receive an education. Some of these children are left to die at birth or are left or disowned by their family, particularly in the South Pacific. 3 years ago a mother on one of the islands gave birth to a blind child. She was encouraged to bury the child alive, this was done!

Sourced from PVI’s Vision Magazine

12. Snippets

RetinaComplex

During the Retina International Conference held in Rio de Janeiro in October 2006 the role of oxidative stress and oxidative damage was discussed in connection with retinal degenerative disorders. It was also shown that a special combination of antioxidants delays the degenerative processes in an animal model for RP. This unique combination of antioxidants (RetinaComplex) is now available for use. If you are interested in this product please check out the website www.retinacomplex.com for further information. (Publishing this information does not reflect any endorsement of the product by Retina NZ)

Audio Descriptive DVD’s

Auckland City Libraries now has a link to DVD’s which are audio described. Go to www.aucklandcitylibraries.com/readandrelax and look for the link worded DVD’s with audio description.

Adaptive Technology Solutions Ltd

This newly formed company specializes in the assessment and training of people with disabilities who are likely to benefit from using adaptive technology. Manager Genevieve McLachlan, who is herself disabled, offers a flexible, holistic approach to assessment and training. She is working with various technology firms to provide equipment such as CCTV’s, computer magnification software, hand held and portable magnifiers, the SARA scanning and reading appliance, and MAXTV binocular telescopic glasses. For further information contact details are 33A Tararua St, Trentham, Upper Hutt; phone 04 528 7601; Email Genevieve@adaptivetech.co.nz or website www.adaptivetech.co.nz

Electronic Books Online

Do you like science fiction? Baen Books www.baen.com/library/ provides books free in electronic form to people who are print disabled. The application form for the service can be found at www.readassist.org

Victoria University has converted the 1914 edition of the Edmonds Cookery Book into a digital format accessible at www.nzetc.org.tm/scholarly/tei-EdmCook.html

The NZ Electronic Text Centre has recently added several other digitized books to their free online collection. To access these go to www.nzetc.org

This information sourced from RNZFB Sound and Touch March 2007.

Newsletters on Tape

These are yours to keep, please do not return them to Retina NZ or the RNZFB.

Miles to Go: A Book to Make You Laugh Out Loud by Pauline O’Reagan. Published by Penguin, 2004, TB 7275

Reviewed by June Ombler

Pauline O’Reagan, a Mercy nun and retired headmistress of the Via Maria College in Christchurch, learned at the age of 68 that she had age-related macular degeneration. She could not imagine a life without books so when she joined the RNZFB she also became a member of the talking book library. At the age of 80, following a course in the use of MS Word on her computer from the Foundation, she wrote this book.

The author captures old age perfectly, telling with a gentle wisdom some of its joys and sadness. She describes the loss of extended family, friends and contemporaries, the feeling of having no one of your own age left to whom you can describe your time growing up. Loneliness is also a part of her aging process, although Sister Pauline lives with other elderly sisters who she describes as her family.

This book has 25 chapters, each written as an essay on an aspect of old age. Read by Elizabeth McCrae on 4 tracks, this humorous book is a delightful read.

Family Care: Practical Help for Family Carers

This is a new magazine designed to offer help and support to people caring for family members at home. Its first issue included feature articles on equipment and home modifications, planning respite care, delivery of meals to your door, and advice on what to do in an emergency. Several regular features are planned for the magazine which include useful aids, answers to questions, self care, gifts, health care issues, and travel and cooking columns.

I found an article about a young man who contracted polio while living in the Himalayas very interesting, along with a story on Alzheimer’s. The magazine has a very useful list of websites and also provide links to the Ministry of Health, accessible accommodation, and the Organisation for Rare Disorders website. The latest issue of Family Care has just been published. Subscriptions to this magazine can be ordered from www.carers.net.nz or by ringing the magazine at 09 406 0412. Their mailing address is PO Box 133, Mangonui, Far North 0442.

Editor

Susan Mellsopp

108B Comries Rd

Hamilton

Phone: 07 8533 612

Email: editor@retina.org.nz

Please note: Deadlines for articles for the winter, spring and summer issues are the 16th July, 15th of October and 16th of January 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 details are on page 2 of this newsletter.