Retina NZ Inc

Autumn Newsletter, May 2005, No 25

In this issue:

1 Editorial from Susan Mellsopp

2 From the President's Desk from Kaye Newton

3 Total Mobility Scheme Review

4 Retina NZ joins an International Alliance by Camille Guy

5 Cataract surgery and the risk of age‑related macular degeneration

6 S.A. & G.J. Ombler Charitable Trust

7 Scientists to trial cure for dog blindness on humans

8 Moderate light exposure causes retinal damage in dogs with RP gene

9 National Deafblind Camp by Kaye Newton

10 Making the Change by June Ombler

11 People ‑ Dunedin women proud at overcoming odds

12 Coping in the Kitchen

13 Book Review

14 Branch News ‑ Christchurch and Otago/Southland Branches

15 The Notices include:

Annual General Meeting

Membership Subscriptions

Change of postal or email address

Support Networks

What Should I Ask my Doctor

1 From the Editor

Thank you for the wonderful feedback I have received since the publication of the February newsletter, the phone calls and emails have been truly appreciated. Please continue to write and email. I hope to meet some of you at the AGM in Auckland in August.

In this newsletter I have included a summary of the total mobility scheme review. It is hoped more consistency can be introduced to this subsidised transport scheme, as well as wider eligibility criteria. Camille Guy, our vice‑president, attended a meeting of the Asia/Pacific AMD Alliance in March and her report is included in this issue. Kaye Newton has written an interesting account of the National Deafblind Camp, and the coping section offers suggestions for making your kitchen more user‑friendly.  Local councils are beginning to develop disability policies in line with the New

Zealand Disability Strategy's objectives and action points. On behalf of Retina NZ I attended one of the meetings held by the Hamilton City Council. I was very impressed by their commitment to ensuring all disabled people have access to council facilities and the city. Disability policies instigated by other district and local councils are being shared and incorporated to ensure a level of nationwide consistency.

I was privileged to attend the Narrator of the Year Award ceremony at Awhina House in February. The winner was Paul Barrett, an Auckland actor, who was presented with a 1950's style microphone as his award. It was exciting to meet the many talking book narrators who were present, along with library and Foundation staff.

Since writing my last editorial several exciting changes have occurred in my life. I have purchased a home here in Hamilton, a townhouse still under construction. I am able to incorporate the many things necessary to accommodate my poor eyesight. I have submitted my Masters thesis for examination at Massey University. It is the first thesis ever to be submitted in large print in New Zealand. Although relieved to finish my research it proved to be quite a sad time, it has been a huge part of my life for so long.

In March I received my first guide dog, a beautiful chocolate Labrador called Chocolat. We have learned to find our way around Hamilton together, have attended lots of events, been to hear Dame Malvina Major sing, and flew to Wellington in late April for the Retina NZ planning meeting. Collecting together for the guide dog appeal taught me how a change in attitude towards disability still needs to be a priority, some appalling comments and misunderstandings were very evident.

Susan Mellsopp/Editor

Ph: 07 8533 612

Email: editor@retina.org.nz

2 From the President's Desk

The executive of Retina NZ has been busy since our last newsletter. We have attended meetings relating to reviewing the relationship of the consumer groups to the Foundation of the Blind. It was time for reporting to the RNZFB, and a budget proposal has been submitted for the next financial year.

The executive all met face to face in Wellington at the end of April. As the charity dollar has been getting harder to obtain, we have to look rigorously at what we do and how we do things. Thanks to Kaye Clark for the use of her home over that weekend. It made the meetings much more congenial, especially with good coffee on hand. Planning has started for the national conference in Auckland in August. Also, we are planning for a training workshop for MD telephone peer supporters from the northern areas.

Elizabeth East was responsible for getting a mail out of material promoting our telephone peer support service to all ophthalmologists, optometrists, Age Concern, Grey Power and Citizen's Advice bureaux. Our thanks to Petronella Spicer in Christchurch who has been relieving on the peer support phone line.

Have you noticed the difference at pedestrian crossings? I walk over a couple of crossings going to and from work every day in the city of Christchurch. I have noticed that cars are stopping as soon as you approach the crossing. Before the recent law change you had to stand and wait until a car stopped to give way before stepping out on to the road.

We have been accepted as a member of AMD Alliance which creates opportunities for us to network with other countries, and obtain the latest information available. Camille Guy, our Vice President, attended a regional meeting which is covered elsewhere in this issue.

Dr Andrea Vincent attended the Retina International Scientific and Advisory Board meeting at Fort Lauderdale in the USA early in May on behalf of our New Zealand SMAB. The ARVO conference is held annually for researchers in the vision field to learn and share what is happening around the world. Several clinical trials have been reported in the media following presentations at this meeting. There seems to be many areas of research which look promising for treatments in the future.

Elder Care Canterbury is a stakeholders committee of organisations involved in providing services to elderly people in Canterbury. Last year they set up a group to look at access to cataract surgery and services provided by the eye department of Christchurch hospital. I have been attending these meetings as a consumer representative. The group included hospital eye department staff, optometrists, a GP representative, and people from Elder Care Canterbury and the DHB. As a result of work by this committee, forms and documentation have been provided to GPs and optometrists to allow them to assess patients and determine the number of points they have towards accessing publicly funded cataract surgery. Patients can now find out quickly if they will qualify rather than waiting months to get an appointment to be seen at the hospital. Early indications of data collected back from optometrists carrying out assessments show a substantial proportion of people who could do with surgery and will not have enough points, but can not afford private surgery. The aim is to give the eye department more time to concentrate on specialist eye care and operations, rather than seeing patients who will not qualify anyway. It has been a privilege to witness different professions working together to look for solutions.

We welcome feedback from members.

Kaye Newton

Ph: 03 3795 807

Email: president@retina.org.nz

3 Total Mobility Scheme Review

The Ministry of Transport is reviewing the total mobility scheme. A series of consultations with assessment agencies, transport operators, disability organisations and people who use the scheme have been held throughout New Zealand to discuss issues identified by Land Transport New Zealand. The review aims to improve the adequacy, consistency, portability, sustainability and coverage as outlined in the review's terms of reference.

The current scheme has no agreed definition and no clear parameters and objectives. Different stakeholder groups have different expectations about the scheme's purpose. It is hoped to develop a statement of purpose that will be accepted by all local authorities. This would allow all eligible people with impairments to access appropriate transport to enhance their participation in the community and reduce social exclusion.

Problems exist with the current eligibility criteria. Different local authorities interpret the criteria in different ways. People who live in smaller towns or rural areas do nothave access to taxis and are therefore ineligible for the scheme. It is hoped to develop consistent eligibility criteria with one key effect being an increase in the potential number of scheme users. Including those with non‑accident related short‑term impairments, those living in residential care settings, and older children is being considered.

Fare subsidies are not standardised. Currently a small number of regions do not subsidise fares up to 50%. In some areas the subsidies change during the year, making it particularly difficult for users on low incomes to access the scheme. It has been proposed that all users pay 50% of the maximum subsided fare.

Scheme users have different levels of entitlement depending on local policies. However, travel needs differ and costs vary. Some people make short trips which cost below the subsidised minimum fare so it has been proposed that the minimum fare be removed. Developing a maximum fare subsidy would make the scheme consistent and transparent.

Several local authorities allocate specific numbers of vouchers to each user, or only allow them to be used for specific types of trips. This can reduce access to the scheme and prevents users from deciding themselves the type of trip they wish to use the vouchers for. It is proposed to develop a nationally consistent process to determine regional voucher allocation with no restriction on trip purpose.

Voluntary agencies play a major role in assessing potential users of the scheme. Eligibility criteria are not applied consistently, and potential users sometimes have to pay a fee to join a voluntary agency in order to have an assessment. It has been suggested that the cost of assessment could be funded by local authorities or Land Transport NZ. Assessors may be asked to attend regular training sessions.

The total mobility scheme is labour intensive and vouchers are issued on a local basis. An administration system that could be used by local authorities nationwide is to be investigated, and the scheme is to be promoted to ensure eligible people are aware it exists.

Local operators have a variety of contractual arrangements. It is recommended that national guidelines be established for contractual arrangements between taxi operators and the scheme. Their current fare structure does not take into account

the extra time needed to help people with high needs. It is hoped to increase the number of wheelchair accessible vehicles.

Submissions on the review of the total mobility scheme closed on the 29th of April. A submission has been forwarded on behalf of Retina NZ. These will be heard later this year. I will keep you updated on any changes to this scheme.

4 Retina NZ Joins an International Alliance

By Camille Guy

Last March I had the good fortune to represent Retina NZ at a meeting in Melbourne which established an Asia/Pacific council of an international organisation known as AMD Alliance.

The AMD Alliance was founded in 1999, and currently has 51 member organisations from 20 different countries. Member organisations are split into three regional councils: the Americas; Europe, Africa and the Middle East; and now Asia/Pacific.

The Alliance is run by an 18 member board consisting of 12 elected members and two members from each region. Currently Jane Gallo from Australia and Grace Chan from Hong Kong represent our region. Of the nine representatives attending the Melbourne meeting two were from New Zealand. Chris Inglis, manager of blindness awareness and prevention, represented the RNZFB. I was interested to note that only three of the nine of us were sight impaired. Others present were from Canada, Australia and Hong Kong. The meeting provided a good opportunity to find out what other blindness organisations and volunteer groups such as our own are doing.

Since our two days of meetings were held at The Vision Australia Foundation offices, which are the equivalent of our RNZFB offices in Auckland, I was also able to get a sense of that service. An open day for the elderly was underway and I was most impressed with the sense of openness and busyness there. When I entered the equipment shop at the entrance I was immediately offered guidance by a young woman who showed me everything on display. She also introduced me to various visual aid manufacturers who were present for the open day.

As for the equipment being sold, it was similar to that available here, but I did find a large dial, high contrast watch that was also attractive to look at.

Back at the AMD meeting we listened to an excellent talk by John Stokes from Novartis, the pharmaceutical company that manufactures Visudyne, the drug used for photodynamic therapy for macular degeneration.

John provided a good overview of the latest understandings about MD and treatments available. Novartis provides much of the funding for the Alliance, so I was relieved to hear John himself stress the importance of keeping any corporate involved in funding AMD Alliance at arms length from the running of the organisation.

I was interested to hear John make the point that measuring vision loss due to MD using only acuity testing is no longer appropriate, and that a chart which tests contrast sensitivity should also be used. I have often felt that my failure to identify letters on the conventional eye chart gave little sense of what I actually did or did not see. Another issue that emerged during our discussions was that it is now clear the link between AMD and depression is stronger than for any other retinal disorder MD patients suffering depression are probably under diagnosed and under‑treated.

The Alliance works internationally with other organisations such as the United Nations. It also works regionally, where members from the same region work together on projects, and thirdly, member organisations work locally on individual

projects.

As a member of AMD Alliance Retina NZ may have a link on the AMD website to our own. We may also, with permission, use the AMD Alliance logo on our publications. Just what the Asia/Pacific Council elects to do is over to its members.

Those at the meeting agreed that our highest priority was raising awareness of AMD and related disorders. To this end the organisation will be recruiting more member organisations from the Asia/Pacific region, including both volunteer groups such as our own, and eye professional groups. A strategic plan is currently being drawn up.

NB As this goes to press we have just been advised that Retina NZ was one of only six organisations to succeed in winning a grant for AMD work from AMD Alliance International this year. Our US$2700 grant will go towards the production of a peer support manual. This will help us provide information to those losing sight but not yet eligible for RNZFB services.

Research

5 Cataract Surgery and the Risk of Age‑Related Macular Degeneration

The University of Sydney is to undertake research into cataract surgery and the subsequent risk of developing age‑related macular degeneration. The researchers are: Jie Jin Wang, Paul Mitchell, Anthony Malouf and Wayne Smith.

Cataract surgery currently ranks as one of the most frequently performed and successful surgical procedures in Australia (125,000 operations per year). Age‑related macular degeneration (AMD) is the principal cause of moderate visual impairment and blindness, currently accounting for blindness in between 17,300 and 30,400 Australians. Past studies have not shown a definite relationship between cataract and AMD.

Follow‑up data from clinical case series and from two older population‑based studies (the Beaver Dam and Blue Mountains Eye Studies) suggested that cataract surgery might increase the risk of subsequent development of AMD in operated eyes of older persons. Such an increased AMD risk in eyes after cataract surgery appears to be both short term (observation from clinical case studies) and long term (evidence from population based studies), and persist after taking into consideration age, sex, smoking, pre‑existing early stage lesions of the disease and correlation between both eyes.

The proposed study is to follow a large number of older patients who are undergoing cataract surgery in Western Sydney Eye Hospital and four ophthalmologists' private rooms. Rates of subsequent development of AMD will be compared between operated and non‑operated eyes, and also between the surgical cohort and the Blue Mountains Eye Study cohort. Macular conditions will be documented carefully before and after surgery to exclude the possibility of confounding issues.

The researchers will also investigate whether the increased risk occurs in certain subgroups of patients at high risk of AMD. If an increased AMD risk from cataract surgery is confirmed in sub‑groups of patients, a modified clinical practice may be indicated to maximize cataract surgery benefit and minimize the risk of loss of vision from AMD after surgery. Changes may include additional patient information and consent of this risk, delay of cataract surgery within limits of visual function and close postoperative follow up.

This article has been reprinted from 'Rods', March 2005, with the kind permission of Retina Australia. Their website is www.retinaAustralia.com.au

6 S.A. & G.J. Ombler Charitable Trust Summer Research Scholarship 2004‑2005.

Student: Abdulmnaem (Monier) Al Shoarb

Supervisors Drs Shubiao Wu and Marion Maw, Department of Biochemistry,

University of Otago

Lay Title and Abstract:

A mouse model for inherited blindness: characterization of an antibody for detection of the causative protein.

A large whanau is affected by a disorder that causes severe visual impairment. In partnership with this whanau, genetic analyses have implicated the calcium channel gene CACNA1F. An important resource in understanding the biological roles of CACNA1F protein will be antibodies that recognise this protein. For any given piece of protein there is no guarantee that a useful antibody will be generated. Dr Maw has had antibodies raised against two pieces of CACNA1F protein. In this project, it was found that only 1 of the two antibodies was capable of labelling retinal sections, a tissue known to contain CACNA1F protein.

7 Scientists to Trial Cure for Dog Blindness on Humans

A breakthrough treatment to cure blindness in dogs will soon be trialed on humans. Scientists at the Lions Eye Institute in Perth are studying the ethical and regulatory requirements for clinical human trials of the therapy which restored sight to congenitally blind dogs in a month. It is hoped that human trials can begin in 2006.

This therapy, delivered via a single injection into the eye, could be the key to curing diseases such as diabetic retinopathy, age‑related macular degeneration and retinitis pigmentosa. LEI research director Elizabeth Rakoczy said: "This has never been done before and it is really excellent. We are now one of the top two or three research centres in the world exploring gene therapy and the implications of something like this are huge".

Professor Rakoczy's team is using the therapy to correct faulty cells that cause neovascularisation or leaky blood vessels. In diseases such as diabetic retinopathy and macular degeneration cells start to grow and form blood vessels. These blood vessels are not fully developed so they are leaky. Certain cells, because of a faulty gene, become sick.

The team studied 14 puppies with the same genetic mutation that, in humans, causes Leber's congenital amaurosis, which attacks the photo‑receptor cells. Cells containing the correct genetic material were delivered into the eyes of the dogs via a virus. A virus is used to target specific cells and deliver the good cells which create an independent reproduction of cells within the eye. Scientists decided to use an injection directly into the eyeball to guard against the cells circulating elsewhere in the body. Three years later all the dogs are healthy and have good vision. One injection may provide a cure for a lifetime. It is hoped that if they can cure MD they may be able to cure other eye diseases of abnormal vascular development.

This information was kindly provided by the Research Directorate, Lions Eye Institute, Perth, Western Australia. Further information on this and other research they are undertaking can be found on their website www.lei.org.au or on the

PubMed website.

8 Moderate Light Exposure Causes Retinal Damage in Dogs with RP Gene

Researchers at the University of Pennsylvania, along with investigators from Cornell University, who were funded by the Foundation Fighting Blindness, have discovered that dogs with mutations in their rhodopsin gene experienced retinal damage when they were exposed to moderate amounts of light. The rhodopsin mutations in dogs mimic the same mutations in humans with the dominant form of retinitis pigmentosa caused by rhodopsin mutations.

The investigators recommend that people with the dominant form of RP caused by a mutation in their rhodopsin gene limit their light exposure. The effect of moderate light exposure was not investigated for any other form of RP. This is a major breakthrough in preserving vision for a sub‑set of people with RP says Stephen Rose, FFB's chief research officer. He said it was important for people with dominant RP caused by the rhodopsin mutation to talk with their ophthalmologist about minimizing their light exposure.

Also, for people who have never been genetically tested, it is an excellent reason to do so. Genetic testing, and determining the form of RP, enables patients to respond immediately to these critical findings, they can take vision‑preserving action right away. Investigators also recommend that physicians who conduct retinal examinations of patients with rhodopsin mutations do so as quickly as possible, and with as little light as possible. They suggest that retinal photography be avoided, and light exposure during intraocular surgery minimized.

This information was downloaded from www.blindness.org/research

9 National Deafblind Camp 18‑21 March

By Kaye Newton

Somewhere in the middle of the North Island, not far from Lake Taupo and Mount Ruapehu, is the Sir Edmund Hillary Outdoor Pursuits Centre known as the OPC. It is completely hidden in the bush away from the roads, and the chalets and dining hall are tucked away in the bush so you never see more than one building at a time.

Deafblind members, with disabilities ranging from vision and hearing impairment through to the profoundly deaf and blind, some with intellectual disabilities, and a couple in wheelchairs, converged from all over the country. Also taking part were some RNZFB staff members, volunteers, carers and interpreters, and some guide dogs. The weather was perfect; calm, warm and no wind. Unfortunately eight people from Christchurch didn't make it at all, as Wellington airport was fogged in for days.Included in this group was Richelle Frantz, the main organiser, but the camp still went very smoothly.

There were heaps of activities for people to try. With OPC instructors in charge of every group it was surprising just what some of the disabled people were able to do. For example, anyone could go on the flying fox; you are strapped in and race down a valley suspended over a stream. Carers and volunteers were able to try activities too. There was canoeing, kayaking, tramping, horse riding, quad bikes, caving and more. All equipment and wetsuits etc were provided. Each group decided which activities they would do over the two days. The lake is big enough to allow people to paddle their own canoes, even if they could not see where they were going. Our group tackled the high ropes obstacles slung between high trees. Just climbing up the trunks to reach the obstacles was a challenge. The groups made the most of the fine weather to go up the mountain which involved riding two kinds of chairlifts up to where they ski in winter. A bus took most of us to a hot pool on the Sunday evening.

The OPC staff provided the lunches, snacks, cooked meals and even did the dishes. All we had to do was clean our chalets when packing up to leave. So it was a real holiday as well as a chance to try things you haven't done before.

10 Making the Change

By June Ombler

In August 2003, having felt for some time that my RP was getting worse, everything was permanently a foggy black and white contrast, I made an appointment at my optometrist for my bi‑annual eyesight check. The results of this test shocked me as I learnt I was developing two cataracts additional to my severe RP. Two ophthalmologists in Dunedin were consulted and a full test was done at the hospital which confirmed the existence of two fairly small cataracts. Both specialists said they did not recommend their removal.

Reluctantly I decided to sell my much loved Dunedin home and move to Wellington nearer to my daughter Kay and her family. Kay found several different retirement villages and rest homes for me to view. We checked those that seemed suitable and I paid a deposit on an apartment, not yet built, in a retirement village which was to be ready in early February. The village complex was situated across the road from suburban shops, was within total mobility reach of the Foundation of the Blind, the airport, and the Lower Hutt bus route where my daughter and her family live.

Back in Dunedin I put my house on the market thinking that perhaps it would sell by Christmas. It was spring; surrounded by rhododendrons, camellias, spring bulbs and blossom, recently re‑roofed and painted, the house sold within a week! I had to move early in February so the unhappy task of sorting everything out began. By Christmas I had the sunroom filled with things I wanted to take with me and steadily got rid of the excess by various means. Kay flew down for the last week to help me pack up before the removal firm loaded what remained into their van and set off for Wellington.

Five weeks later I was able to move from Kay and Neil's home into my newly built apartment. The delay was caused by having to get a large corner desk top built and installed to hold all my essential equipment (CCTV, TV, computer, tape recorder, printer and phone) before I could manage to live independently. In the meantime I received Orientation and Mobility (O & M) lessons from Foundation of the Blind staff to teach me how to safely navigate the village complex and local shops. Adaptive Daily Living lessons to mark and show me how to use my apartment's up‑to‑date electrical equipment and to sort out my clothes were also welcome.

A kitchen cupboard was built over the sink bench but the lighting was abysmal so I was living in almost complete darkness. Finally a lighting expert installed strong

suitable lighting everywhere and I could see contrasting shapes. More than three months after moving in the rest of the desk arrived and I had unpacked most of the boxes and had installed bookcases for my files and books. After living here for almost a year it is beginning to feel like my home.

Did I do the right thing? Yes, I believe I did. There are advantages to living in this retirement village. I have come to appreciate these now I am over 80 and have several disabilities. Everyone if very friendly and helpful as I wander the dimly lit corridors with my white cane trying to locate the place I am looking for. I do not lack companionship and the complex is secure at night. I can eat a meal in the dining room if I don't feel like cooking. There is a hairdresser and a small shop on site where I can also buy stamps and post my mail.

Staff members organize trips and entertainment for every day of the week. Outside there are flower gardens, a bowling green, croquet and petanque areas. There is a large swimming pool, spa and gym; best of all is the large atrium with a high glass roof, internal formal garden, goldfish ponds and waterfalls. It is so peaceful to relax here away from the fierce Wellington winds that seem to blow most of the time. Yes, Wellington is a windy place and where I now live is the windiest area of New Zealand according to the weather department!

People

11 Dunedin Woman Proud at Overcoming Odds

Lynn Keogh is in her early 50's, partially sighted....and has just completed her first triathlon. The Dunedin woman achieved the notable feat in the Special K women's have‑a‑go triathlon in Christchurch. While she is not the first sight‑impaired person to compete in multi‑sport events, the mother of two adult children is naturally proud of her achievement. "I got a great satisfaction from finishing. I just thought being able to do something like that was a bit awesome".

While Mrs Keogh has always enjoyed the outdoors, it took some significant events in 2004 to encourage her to take part in a triathlon. In March she was one of the Blind Foundation's representatives at an Outward Bound course. Later in the year she received her first guide dog, Namo. "When I came back from Outward Bound, because I had done so much, it was suggested I have a go at a triathlon. I was on such a high I said yes. At the time I was probably not aware what I was letting myself in for".

Photograph: Caption. Lynn Keogh receives a congratulatory lick from her guide dog Namo after she completed her first triathlon on Sunday. Photograph taken by Craig Baxter, courtesy of Otago Daily Times.

When she received Namo, Lynn found her fitness levels naturally improved as she went walking with her dog. "Getting a guide dog from the Blind Foundation has given me back the independence and confidence that I was starting to lack in myself". Mrs Keogh was diagnosed with eye problems as an 11 year old. Her vision deteriorated as she got older, to the point where she now has little central vision but some peripheral.

Competing in Sunday's triathlon, with the help of sighted guide Darlene Thompson, was daunting, particularly as she was knocked about in the 300m swimming leg at the Queen Elizabeth II pool. "It was pretty chaotic and I felt quite disorientated because I'd never swum in that pool before". She and Mrs Thompson then used a tandem bike in the 10km cycle leg before setting out on the 3km running section. "My lack of vision makes it difficult to run. We didn't quite power walk but we walked at a reasonable pace" she said. Mrs Keogh was unsure of her final placing or time, but was "just happy to finish".

Lynn Keogh is the Chairperson of the Otago/Southland Branch. This article and the photograph have been reproduced with the kind permission of the Otago Daily Times.

Coping

12 Coping in the Kitchen

People who are blind or visually impaired develop and adapt many suggestions to help them to cope in their kitchen. Below is a selection of ideas sourced from the internet and other visually impaired people to allow you to continue to enjoy your kitchen.

Install good directional lighting in your kitchen, preferably with a spotlight positioned to shine into your pantry, or a light inside the pantry.

Contrast in the sink area is essential, a dark coloured sink bench against light walls is the ideal. To aid in this purchase white or a set of inexpensive plastic chopping boards to use on the sink. Buy brightly coloured pot scrubs, dishcloths and the like.

Tie your plug to the sink in some way, or mark it to make it more visible.

Store utensils near the appliance with which they are most closely associated: pots near the stove, plates near the sink and dishwasher. Pots with a steamer can reduce the risk of burns, by using one element the risk of leaving an element on by mistake is reduced.

When purchasing new appliances ensure they have large markings and are simple to use. Modern appliances come in a variety of colours; choose a colour which best suit your eye condition, for example a white microwave with black markings is often the best.

The Foundation sells 'dots' which can be positioned on your stove, toaster or microwave at the positions you use most frequently.

Modern see‑through electric kettles with a removable lid on top are more easily seen and prevent steam burns.

Type up or write your favourite recipes in bold large print, place in a clear plastic page and file in a large brightly coloured ring binder. A3 ringbinders can be purchased and these are useful for those with little vision. Another alternative is to put your recipes on a CD or floppy disk and use your screen reader to read it out to you.

Purchase a set of white measuring cups and spoons with the amounts written in large coloured print on the handles.

If you do a lot of baking talking kitchen scales are available from the Foundation.They are priced at $214.65 for members and $286.20 for non‑members.

Use a large print timer or one with Braille dots.

Tinned food: Store specific types of tinned food on separate shelves or in separate sections of the cupboard. Place the types of tinned foods used frequently in the most convenient location.

Talking tin lids: The Foundation has for sale talking tin lids, they are priced at $7.70 for both members and non‑members. The talking lid is attached to the tin, two small buttons are held down and you can record your message as to the contents of the tin. This is then repeated for the next tin. When you wish to know what a particular tin contains attach the lid, hold down a large button, and the talking tin lid will repeat your recorded message.

Arrange tins in alphabetical order according to the contents.

Purchase several sets of magnetic letters and place these on the tins to identify the contents. Rubber bands, one for soup, two for vegetables, three for fish are a useful means of identifying tinned food. This system can be repeated indefinitely providing you store different types of tinned food in different cupboards or on different shelves.

Purchase children's sets of miniature plastic food and attach to that particular food, a tiny steak on frozen steak, corn cob on tinned corn.

Ingredients which feel alike should be stored on separate shelves or well apart.

Purchase a variety of brightly coloured plastic trays with sides. Store cooking ingredients such as cocoa and baking powder in one, bread making ingredients in another, sugars in another and so on.

Drawers should be divided up as much as possible to retain articles in their proper places. Plastic trays and adjustable dividers are available in plastic specialty and hardware shops.

Arrange your refrigerator shelves by placing the most used items in particular positions. Acquaint others in your home with the plan, and attempt to put things away in the fridge yourself. Alternatively, you could post a plan on the door of the

refrigerator.

Store different items separately in your freezer. They can be marked with a black felt pen, with the children's plastic food items as suggested above, using rubber bands or attaching large stick‑on labels with the contents marked in large print. Dividing items up into smaller amounts before labelling can also assist in identification.

When you have visitors let them wash the dishes, then you can dry and store your kitchen utensils in their proper place.

13 Book Review

Tenberken, Sabriye. My Path Leads to Tibet: The Inspiring Story of How One Young

Blind Woman Brought Hope to the Blind Children of Tibet. New York, Arcade

Publishing, 2000

Sabriye was diagnosed at the age of two with a retinal disease that caused her to go blind by the age of 12. She continued with her education and was very moved by a school visit to a Tibetan display at a museum. Despite the difficulties involved learning languages that had not been translated into Braille she went to university to study Chinese and Asian civilizations. While there she learnt of the appalling conditions that blind Tibetan children lived in. They were rejected, left to beg, or tied up all day in their homes. Sabriye knew she had discovered her mission in life.

In 1997 she travelled to Tibet alone where she battled the Chinese and Tibetan bureaucracies for permission to open a school for blind children. With two Tibetan friends she set out on horseback to track down blind and abandoned children in remote villages. Sabriye returned with a handful and founded her school in Lhasa She developed a Braille alphabet in Tibetan, and began to offer education and dignity to the children. Today she runs a school for both blind children and adults, and is planning to open more schools in China and Africa as part of the Braille Without Borders organisation she has founded with her partner.

This book is published is good sized print, and has colour photographs included. The photograph of the children being taught to use their white canes in front of the Dalai Lama's winter palace is very moving.

Further information about Sabriye and her organization Braille Without Borders can be found at www.braillewithoutborders.org

14 Branch News

Christchurch Branch

From Kaye Newton

Branch Chairperson

On Saturday April 16th the Christchurch Branch had a short AGM meeting followedby John Veale from the Low Vision Clinic as the guest speaker. He is a lively experienced speaker who was able to throw the meeting open to questions from the audience. He reminded us that the adage 'use it or lose it' applies to our eyes too. You need to have the results of a recent eye examination with you when attending the Low Vision clinic; this allows them to assess your needs more quickly and to recommend appropriate equipment.

Pip Burrell resigned as secretary and we thank her for her willing and caring support since the branch started in 1993.

Our condolences to Blair McConnell on the shock loss of his guide dog when it was struck by a truck on his way to work in the city.

Otago/Southland Branch

From Lynn Keogh

Branch Chairperson

All members are invited to the branch's Annual General Meeting to be held at the Royal NZ Foundation of the Blind, Cnr Hillside Road and Law Street, Dunedin, on Saturday 21st May 2005 commencing at 1.00 pm. Our guest speaker will be Dr Marion Maw who will update us on research about a New Zealand family.

15 Notices

Annual General Meeting

The annual general meeting of Retina New Zealand Inc. will be held in Auckland at Awhina House, Offices of the Royal New Zealand Foundation of the Blind, 4 Maunsell Rd, Parnell, in August. The date is yet to be confirmed. Please contact the National Secretary Janet Palmer for further details. Several interesting speakers are planned.

Membership Subscriptions are now due

Membership subscriptions became due as at 1 April 2005 for the year 1 April 2005 to 31 March 2006. Members who have not paid their annual subscription in advance will find a membership renewal form with this newsletter. We ask you to complete this and return with your subscription to the National Secretary, Retina NZ Inc, P.O Box 17‑242, Wellington 6033 as soon as possible.  We will post out a separate membership renewal form to members who receive the newsletter on tape and include a form as an attachment to the email version.

Change of Postal or Email Address

Would any member who changes his/her postal or email address please advise theNational Secretary, Retina NZ Inc, P.O. Box 17‑242, Wellington 6033, phone 04 299 1801, or email secretary@retina.org.nz so you can continue to receive your newsletter and maintain your Society membership.

Support Networks

Would you like to get to know other members of Retina New Zealand in your area?

If you are interested in setting up a support group, a telephone network, or having meetings in your local area please feel free to do this. Please contact the peer support co‑ordinator on the freephone number 0800 233 833 for assistance.

What Should I Ask My Doctor?

The Royal New Zealand Foundation of the Blind has produced a card for members to use when visiting their Ophthalmologist. What Should I Ask My Doctor is a wallet sized card which has 21 questions including: what is my diagnosis, how will it affect my vision now and in the future, and what kind of tests will I have?

If you would like one of these cards they can be obtained from the National Secretary, Janet Palmer, at P.O. Box 17‑242 Wellington 6033, by telephone at 04 299 1801 or email at secretary@retina.org.nz Her contact details are also on the inside front cover of this newsletter.

The cards are also available from RNZFB offices, optometrists, general practitioners, medical centres, and Dr Alena Reznichenko, RNZFB Health Promotion Co‑ordinator, Blindness Awareness and Prevention at 09 355 6931 or freephone 0800 243 3333.

For a list of publications, please contact Janet Palmer, National Secretary by telephoning 04 299 1801, email secretary@retina.org.nz or write to Retina NZ Inc., P.O. Box 17 242, Wellington 6033.

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 strict confidence.

Ring any of the following free‑phone numbers if you would like to speak to a

geneticist or genetic counsellor about your own particular diagnosis of RP, Macular Degeneration or other retinal degenerative disorders.

Auckland Genetic Hotline (Auckland Regional Genetic Service) telephone

0800 476 123.

Wellington Genetic Hotline, telephone 0508 364 436.

Christchurch Genetic Hotline, telephone 0508 364 436 and ask for Dr Caroline

Lintott.