Please Note: If you are receiving this newsletter on tape it is yours to keep. You have paid for it as part of your Retina NZ subscription. If you do not wish to keep it you may dispose of it or return it to the library with other library cassettes.

1. From the Editor

2. Letters to the Editor

3. From the President’s Desk

4. Retina Australia Conference Report

5. Retina New Zealand Conference Speakers

6. Snippets

7. Survey Results

8. People: Maraenui Taituha

9. Notices

10. Book Reviews

1. From the Editor

It was very exciting to meet so many members at our AGM/Conference. We had very interesting speakers and reports on their speeches have been included in this newsletter, along with a photograph of our executive and other members who attended our planning meeting the following day.

I remained in Wellington for a week to conduct some interviews, and was privileged to be a part of the function held jointly with the New Zealand Association of Optometrists at the Wellington Public Library. This was to promote the Save Our Sight campaign, and the Minister of Health, Pete Hodgson spoke. I also visited the Constable exhibition at Te Papa, and on returning home my neighbour enquired if I had taken an umbrella-the paintings are certainly full of clouds and sky.

Interest is growing, spurred by several television programmes, in healthy eating and healthy lifestyles. The diets of some people continue to astound me, cakes, chips, pies, takeaways of all kinds seem to form the basis of many people’s diets. The growing relationship between poor diet, obesity, and eye health is a growing field of research. As discussed by Andrew Sangster at our conference, simple measures can be taken to ensure we continue to offer our eyes the best possible chance. There has only been room in this issue of the newsletter to discuss part of his talk, in future issues we will report on minerals, phytochemicals, free radicals, and eating healthy fats. The message is one we hear daily; eat more vegetables, fruits, wholegrains, nuts, seeds and fish. There is a wide variety of books, websites and other information available to help us with our food choices. From personal experience I can assure you that following a healthy diet is no more expensive than one high in saturated fats and lacking the 5+ a day fruit and vegetable recommendation.

The structure of this newsletter is somewhat different from normal. Kaye Newton, our President, attended the Retina Australia Conference in Canberra and her report is on page 6. As promised we have the survey results, and a very interesting member’s story. For those of you who enjoy the coping and research sections, these will return in the next newsletter. The wide variety of reports meant space was very limited for this edition.

Susan Mellsopp

Phone: 07 8533 612

Email: editor@retina.org.nz

2. Letters to the Editor

Many thanks for the newsletter. It contains a wonderful amount of useful information, particularly about screen reading software and how the TIS system works. I am rapidly approaching the need for both! Please keep practical day-to-day coping information coming in future newsletters. The article about eating at home and eating out is also great.

Is anything being done to make life easier for people with visual difficulties to get about in the community, for example clearer delineation of the edges of the kerbs and steps? It would also be wonderful if door handles could somehow be made easier to see. If there are any moves afoot or approaches to local councils on such matters it would be good to know. Other forms of disability are well catered for by way of disabled parking spaces, ramps for ease of access to public buildings, toilets for those in wheelchairs; but it seems that not much consideration is given when planning public amenities to those of us with a visual impairment.

Marilyn Marshall

Dear Susan,

Just a wee note to say I am enjoying the Retina NZ newsletters. I particularly liked the article on page 13 about the update on vitamins, also the dining out hints. Keep up the good work.

Pauline McLeod.

Dear Susan,

I found your last newsletter very interesting. It was difficult for me to read of vitamins that help AMD. I had bought Ocuvite tablets, but the dietician and doctor said ‘no’, I must not have them as I cannot eat meals and am on a food supplement. It was found that I was obtaining far above the recommended daily dose of most vitamins. Also, I am taking warfarin and there are many vitamins someone on this drug must not take. Ocuvite then became obsolete, and vitamin C and E must not be taken in large doses. I feel more people should be warned that if they are on warfarin they cannot take the antioxidants normally recommended.

Congratulations on such an informative and interesting newsletter.

Elva Robert

Quote: If we did all the things we are capable of doing we would truly astound ourselves: Thomas Edison:1847-1931

3. From the President’s Desk

Thank you to the Wellington Branch for organizing a successful AGM/Conference held on the 26th of August. We appreciated the attendance of three directors of the Board of the Foundation, none of whom live in Wellington. The executive remains much the same as last year, but I am very pleased to welcome Kiran Valabh as our new treasurer. He put his name forward after the meeting when the role remained vacant. On Sunday the executive had a meeting, along with branch delegates, who were welcome to join in. It was great to have Marion Maw’s input as chair of the Scientific and Medical Advisory Board.

There have been some changes in the membership of the Scientific and Medical Advisory Board (SMAB). Dr Carolyn Hope and Dr Joanne Dixon have now both retired and we thank them for the many years they made their expertise available to Retina NZ Inc. We are delighted to welcome Stephen Robertson who is joining the SMAB. Stephen is the Professor of Pediatric Genetics at the Otago School of Medicine. I hope he enjoys his association with our organization.

The weeks following our AGM were busy as we tried to promote World Retina Week which was the third week in September. In some ways our work has only just started with the publishing of ‘The Good Look Book’ as we now face the task of getting 400 of these books sold to recoup our printing costs.

Camille Guy attended and spoke at a function in Auckland hosted by Yates which was primarily aimed at garden media. They launched the NZ version of the Bright Eyes Cosmos seed packets. We will be getting 40 cents per packet sold, so we urge you to buy some and tell your friends, even if you are not a gardener. I recently bought a couple of packets at a local Pak N Save supermarket, so they are readily available now. They will easily slip into your Christmas cards as a little gift. I have planted some seeds here in Christchurch and will report on their progress next time. Camille let her Auckland snails eat hers so has sown some more.

I was fortunate to attend the Retina Australia National Biennial Congress for the first time (my report follows this article), and made some useful connections which are to be followed up. Once it was known I was going to Canberra I was invited to attend a function in Sydney the day before the congress which was hosted by Retina New South Wales. This was a fundraising midday dinner which included an auction and was held at Parliament House. It is a privilege to hold it in that restaurant as apparently it is not often allowed while Parliament is actually sitting. This was evident from the bells ringing a couple of times during proceedings. I was impressed with the stature of the attendees and speakers. The most expensive item auctioned was a scale model of Nelson’s warship Victory. After obtaining a bid of $5000 the successful bidder donated the ship back so it can be auctioned again next year! The occasion is also an opportunity to publicly acknowledge and receive a giant cheque from Yates, who donated $10,600 this year. They have been sponsoring Retina Australia for a number of years.

The Foundation of the Blind is currently drafting up a strategic plan for the next few years. Retina NZ has been involved in attending a consumer groups meeting and submitting ideas for consideration. By the time you read this we will also have met with the Board’s stakeholder relations committee so they can gain a better understanding of who we are and what we do.

Kaye Newton

Phone: 03 3795 807

Email: president@retina.org.nz

Quote: Take calculated risks, this is quite different from being rash: George Patton: 1885-1945

4. Retina Australia Conference Report

I was off to a flying start as I was given a ride by car from Sydney to Canberra by Graeme Banks and his wife Lyn. Graeme is President of Retina New South Wales and also Vice-President of Retina Australia which is a national body incorporating the autonomous Retina organizations from each state. I learned that they are much more focused on fundraising for research and also need to raise funds just to operate. There is no national Australian equivalent of the Royal New Zealand Foundation of the Blind which provides support to Retina NZ.

Graeme will be briefly in Christchurch in November so we can catch up to talk further about our common goal to establish a patient database of people with retinal disorders for research purposes, and for identifying people who can benefit from new treatments coming on stream.

There were eight speakers on Saturday, the first day, as well as an afternoon workshop with three choices on living and coping. It was great to take a break from the speakers to learn about aromatherapy, head, shoulder and hand massages.

The keynote speaker was Professor Gerald Chader from the USA who is an excellent speaker and targeted his presentation to the lay person. He gave an overall summary of the progress of clinical trials for inherited retinal disorders. The majority of the remainder of the speakers were from Australia and spoke about research they were currently undertaking. Michael Kalloniatis from Auckland University spoke about light induced photoreceptor death. All these people acknowledged their funding support from Retina Australia.

Professor Chader outlined what is happening in research for RP and AMD under the following headings: 1. Gene Therapy; 2. Pharmaceutical Therapy; 3. Transplantation/Stem Cells; 4. Nutrition; 5. Retinal prosthetic devices. I do not have the space to elaborate here, but if anyone would particularly like to read a copy of his address please contact our secretary.

Up until now a lot of work has gone into developing reliable RD mutations in animal models so that they can be studied. Much is now understood about what is happening when the cells die off, this understanding can lead to the designing of strategies to halt or reverse the degeneration. Human clinical trials are now taking place with many more to come in the next few years.

Michael Kalloniatis explained how the Auckland research on a rat model of photoreceptor degeneration has shown that photoreceptor cells which are destined to degenerate are marked. They have been studying the effects of light exposure on photoreceptor agmatine labeling. Metabolic changes are accelerated by light exposure so they can now test strategies to minimize photoreceptor degeneration and confirm that environmental factors alter the rate of photoreceptor degeneration.

Professor Stone of the Australian National University talked about research on environmental ways of improving the stability of photoreceptors with the aim of working towards non-invasive management of retinal degeneration. They are able to see the oxidative damage in cells prior to degeneration. Restricting light exposure (ambient light-room or daylight) slows the degeneration and restores retinal performance significantly. They are developing evidence that the consumption of highly anti-oxidant foods can slow photoreceptor degenerations.

There were many other presentations about research being undertaken. A large clinical study is underway on the risk of age-related macular degeneration following cataract surgery. This link is not clear, but a large study hopes to clarify this and to discover whether current practices of cataract surgery management need to be modified for those patients with risk signs for progression to late AMD.

What did I take away from all this?

Keep eating those anti-oxidant foods. They are good for so many reasons as well as slowing down retinal degeneration. Keep wearing those hats and sunglasses to reduce light exposure.

There were more speakers packed into Sunday’s sessions, along with a panel discussion with all the researchers present to answer questions from the audience. All the attendees were very friendly, and I recommend that if you get the chance to go to a future congress then you will be well rewarded. The next Retina Australia congress is expected to be held in Queensland in 2008.

Snippet: Eating an egg a day could reduce the risk of AMD. AMD affects the central part of the retina which controls fine vision leaving people with only limited sight. Studies at the University of Massachusetts revealed that as well as filling you up for longer a daily egg could boost blood levels of the carotenoids, lutein and zeaxanthin and reduce the risk of AMD.

Journal of Nutrition, October 2006.

5. Retina New Zealand Conference Speakers

Andrew Sangster: Optometrist (As Andrew has kindly provided me with his extensive conference notes I will publish sections of them over the next few newsletters)

Healthy nutrition is promoted on TV, other media, and also in doctor’s waiting rooms. Healthy nutrition reduces risk of cancer, obesity, heart disease, diabetes and so on. However, the notion that healthy eating may be beneficial to eye health is still not commonly recognized.

Good diet is essential to eye health and to the health of the visual system. There are many vitamins, minerals and phytochemicals that are essential to good vision. They can be either synthesized by the body or obtained from dietary sources. Often the body cannot synthesize the appropriate nutrients or cannot do so in sufficient quantities for the body’s needs.

If the quantity of nutrient is insufficient then function is impaired, either temporarily or permanently. This can have catastrophic consequences with regards to eyes and vision.

Vitamins

Vitamins are organic compounds necessary for normal physiologic functioning. The amount required varies for each vitamin. Vitamins that are essential to the eyes and vision include fat-soluble vitamins and water-soluble vitamins.

Vitamin A

Dietary sources of vitamin A and B-carotene include eggs, fish, liver, whole milk, cheese, butter and green leafy or yellow vegetables.

Vitamin A is important;

1. To the structure and function of epithelial cells.

2. In the regeneration of retinal photopigments, especially for dark adaptation.

3. For the lens membrane and lens epithelium, a function that helps to prevent cataract formation.

A deficiency of vitamin A can be responsible for: dry eyes (loss of goblet cells); corneal epithelial defects/ulceration; a decrease in conjunctival wound healing and an associated increase in risk of infection; night blindness/nyctalopia; progressive retinal degeneration and cataracts.

Oral vitamin A palmitate has been demonstrated to slow the deterioration in common forms of RP. However, the same study indicated that vitamin E alone had a detrimental effect. The study recommended RP patients take 15, 000 IU/day (4.5mg/day) of vitamin A palmitate (not B-carotene). This is about 3x the RDI. It was suggested that this dosage could provide a further 7 years of useful vision to the average RP patient who begins this treatment at age 32.

Not all nutrient use is beneficial. I alluded to the effect of vitamin E on RP patients; but a more significant issue is the effect of B-carotene on smokers. A 1994 study showed that B- carotene supplementation in male smokers was associated with an 18% increase in incidence of lung cancer. This finding has been confirmed in subsequent studies. There are also indications that B-carotene supplementation in diabetic patients increases the risk of more severe diabetic retinopathy.

Vitamin B1

Also known as thiamine, vitamin B1 is an essential part of enzyme systems that metabolise carbohydrates. It also plays an important part in the maintenance of neurons. This is very important for the eye.

Dietary sources include meats, yeast and unpolished grains and nuts.

Thiamine deficiency can have significant effects on the cardiovascular system and also neurological effects. In the eye these effects include:

1. Degeneration of myelin sheathing on the optic nerve and optic tract.

2. Nystagmus.

3. Ophthalmoplegia

4. Altered blood flow to the brain, eye, skeletal muscles and the muscles of the eye.

Vitamin B2

Is also known as riboflavin, and is involved in the metabolism of carbohydrates as well as proteins and fats. Vitamin B2 deficiency affects the eye and has signs/symptoms such as:

1. Photophobia

2. Corneal vascularisation

3. Decreased visual acuity

4. Cataract

5. Keratoconjunctivitis sicca (inflammatory dry eye).

Vitamin B12

Also known as cyanocobalamin, vitamin B12 is converted into co-factors involved in carbohydrate metabolism and the production of:

1. Red blood cells

2. Lipids

3. Amino acids

4. Nucleic acids

5. Myelin sheath for neurons

Dietary sources include liver, red meat, milk and milk products. Vitamin B12 deficiency can produce clinical manifestations of:

1. Pernicious anaemia

2. Ultimately permanent neurological damage

This neurological damage manifests as:

1. Paraesthesia of the hands and feet

2. Loss of memory, mental confusion

3. Nystagmus

4. Loss of central vision

Vitamin C

Also known as ascorbic acid, vitamin C is obtained from dietary sources such as citrus fruits, potatoes, tomatoes, cabbage, kiwifruit and strawberries. The eye has 20x greater concentration of vitamin C than blood plasma. Vitamin C facilitates the absorption of iron from the GI tract, has antioxidant properties, and acts as a co-factor in many enzymatic reactions throughout the body. Diabetics again must be aware of the greater risk of increased diabetic retinopathy with increased vitamin C intake. No studies have conclusively shown that vitamin C helps prevent or treat viral, bacterial or malignant diseases.

Vitamin E

Dietary sources include legumes, egg yolk, vegetable oils, leafy vegetables, margarine and wheat germ. Vitamin E acts as an antioxidant, and may also have an anti-inflammatory effect. Tocopherols occur in retinal tissues and are shown to offer protection from UV radiation and some drugs, metals and chemicals that can initiate the formation of free radicals. Excess vitamin E can be toxic to lungs, liver and blood. Diabetic patients not taking insulin may have an increased risk of increased severity of diabetic retinopathy.

Dr Toni Marks: Psychiatrist. Member of Retina NZ SMAB ‘Changes That Are Making a Difference’

Dr Toni Marks, who has RP, spoke on his experience of using technology to enhance both his personal and professional life. He has harnessed the power of computers, the internet, and a variety of technological advances to make his life easier, faster and more time efficient. Using screen readers such as Jaws has been both time saving and has allowed his practice to become more efficient. The use of computers to store his practice records and the advantages of email in ensuring up-to-date information about his patients is available has brought a reliability to work practices.

The internet has offered Toni Marks an explosion of information!! He is now able to access a wide range of information, medical journal articles, online books, magazines, and knowledge about subjects as diverse as opera, fishing and heat pumps. He noted that his biggest difficulty is now in knowing not what to read.

A demonstration of a Muvo, an MP3 player available from Dick Smith Electronics which stores up to 6 talking books downloaded from Audible.com and the PacMate, an electronic note taker, concluded his talk.

Neil Jarvis: Head of Adaptive Technology RNZFB

Neil Jarvis spoke about the constantly changing field of adaptive technology suitable for the blind and vision impaired. Much of the technology becomes outdated very quickly, especially as it becomes more high-tech.

Mainstream technology includes mobile phones, talking ATM’s and computers. The use of the internet has revolutionised the access to and availability of information for blind and vision impaired people. They can access newspapers, radio stations, and even audio described videos.

Low cost screen readers are available online. These include Freedom Box which costs $US20 per month to subscribe to, Systems Access, and Thunder which is very basic but is suitable for email and web browsing.

Neil noted that many home appliances were becoming more accessible again. They have been difficult to use due to the instillation of LCD screens with screen menus.

The future holds great promise for suitable technology. A hand held reading machine about the size of a video tape is being developed. This will fit into a handbag and could be used to read menus, bus timetables, and prices in the supermarket. Mobile phone technology is also being upgraded. Mobile phones now have talking software pre-loaded at almost half the price it has been in the past.

Neil also spoke about the advent of digital talking books from the Foundation’s library. A member will only have to phone in, pick a book, and it will be downloaded into their player automatically.

6. Snippets

Auckland Meeting/Camille Guy

Around 50 people turned out for the Auckland meeting on October 1st. Minnie Baragwanath, who deals with disability issues for the Auckland City Council, was the guest speaker. It proved to be a lively session with some useful contributions from the floor. We were pleased to have RNZFB Board member John White and his wife at the meeting. We were also lucky to have Kaye Newton in town that day so she was able to do an Auckland launch of The Good Look Book. As well as a lengthy tea and coffee break we opened a couple of bottles of wine at the end and members were happy to linger and chat. Several got in touch the following week saying how much they enjoyed the chance to meet fellow members and how relaxing they found being at a social event with the fellow sight impaired.

www.vegetables.co.nz

This website promotes vegetables as healthy, fresh, tasty and quickly prepared. It offers a recipe finder listed by vegetable or course, links to other resources, and always has a new recipe to try out. This website offers information about the nutritional value of vegetables, has links to new cookbooks, and a news section with précis of up-to-date research about the value of vegetables for one’s health. The photos of the various dishes on the website encourage one to try their appetizing dishes. It appears to be an easily navigated website although I did have difficulty attempting to change the recipes to a larger font size.

Dell Recycling

If you are upgrading your computer equipment your old computer can be recycled. Phone Dell Computers on 0800 440 603 and for a flat fee of $10 and $13 an item in metropolitan areas or $15.50 if you live more than 40km from a city they will collect your old computer. Auckland and Wellington also have drop off points where the charge is $8.50 for larger items such as screens and hard drive boxes.

7. Survey Results

We received an amazing 171 responses to our survey in the last newsletter. Just under a third of those respondents were male. Around two thirds came from the main centres, including Hamilton and Palmerston North, while the remaining third were from smaller towns or rural areas well spread around the country. By a small majority the over 70’s outnumbered the younger age group, with three respondents over 90. There was a good spread across the age range from 40 upwards. Two thirds of our respondents were also members of the RNZFB.

Of those who disclosed their eye condition, 81 had some form of macular degeneration while 45 had Retinitis Pigmentosa. Five had Ushers and two Stargardts. Four had Diabetic Retinopathy. There was a scattering of more unusual conditions. A dozen respondents mentioned cataracts or glaucoma as secondary to their main eye problem.

Newsletter

170 members responded to the question ‘does the newsletter provide the type of information you require’? 146 either agreed or strongly agreed that it did. The survey produced a wide variety of suggestions for future newsletters. The increased range of topics has appealed to all members. Requests for a wide range of information from the practical to précis of up-to-date research and help with understanding a wide variety of retinal conditions predominated. Practical suggestions for coping with vision loss were a popular inclusion in the newsletter, this included meeting other members and setting up more support groups for members. Knowledge of equipment for coping with sight loss and suppliers of such, including computer software, was mentioned several times. This was of particular importance to members who are not yet eligible to join the Foundation. Reading the stories of other people was seen as a very important coping strategy.

163 members replied to the question ’do other people (family, friends) read the newsletter’? It turns out that a majority of members did report friends and family browsing through it.

We asked ’what do you like or dislike about the layout of the newsletter’? That question drew little response, although 10 thought it ‘very good’ and 16 liked bold print.

Adaptive Technology

We wondered how many members used some form of technology to read the newsletter. So we asked ’Do you use a CCTV (closed circuit television), Jaws, another speech programme, or any other type of technology to read the newsletter’? Responses showed that relatively few members are taking advantage of advanced technology for the vision impaired. Two said they used a CCTV and computer screen software. Three said they just used the screen reader, while seven used magnification software. Three people asked ’what do you mean by these words’?

Thirteen respondents put tape, and two put magnifying glasses. One said 'cant read’, and another said ‘cant afford’, while 20 stated the question was not applicable. 69 members responded to the question ’how accessible is the newsletter to you eg using your adaptive technology’? 30 said good or ok, 5 said not very good or very slowly. One person was awaiting adaptive technology and three were waiting for a CCTV. Two said they had no computer. The rest indicated the question was not applicable. So we then asked ‘how do you read books and magazines’? 143 people replied to this question. 19 used a magnifying glass, 54 used tapes or talking books, 15 used large print books only. 12 used glasses or special low vision glasses. Four used a CCTV. Three mentioned using halogen lamps or said they just read headlines. Five people said they still had one good eye, while 16 said they found it hard or they just could not read at all now. Another mentioned using radio or listening to CD’s.

Peer Support

We asked if members had ever used the peer support telephone 0800 service. 32 of the 164 who responded to that question said they had. Most had heard about it through a Retina NZ publication or through the RNZFB. Only four had heard through a health or eye professional. Most who had used the service agreed it had met their expectations. Asked whether they would like ongoing telephone support with another Retina NZ member about half of the respondents replied they would and half did not. About half would like some face to face meetings with other Retina NZ members.

WebSite

Only 28 respondents said they had visited our website. We suspect this is because so few members have computers.

We have summarized our survey responses in detail for close examination by the executive committee. We were gratified to received much positive feedback and comments such as ‘wonderful to know I am not alone’ and ‘just grateful to know that you are there and communicating’ and ‘doing a marvelous job, thank you’. We also appreciate all criticisms and suggestions for improvement and we will try our best to take them on board. Many thanks to all who participated in the survey.

8. People: Maraenui Taituha

For the past 21 years Hamilton member Maraenui Taituha has paddled on Taheretikitiki, a Tainui waka taua or ceremonial canoe. In August Taheretikitiki was one of two waka taua flanking Tumanako, the waka taua which carried Te Arikinui, Dame Te Atairangikaahu on her final journey from Turangawaewae Marae down the Waikato River to Taupiri Mountain, where she was laid to rest. Her casket was carried up the mountain in stages by groups of kaihoe (paddlers) and Maraenui was part of the final stage. Despite low vision caused by Retinitis Pigmentosa, he remembers the sea of black on the mountain as the waka rounded the last bend of the river approaching Taupiri-the crowd of mourners in black mourning clothes. He remembers the same crowd of people pressing in on the casket as the kaihoe carried it up the steep narrow path. That night he went home with stubbed toes from the freshly laid gravel and gorse thorns in his feet, which of course he couldn’t see! The jobs the wife of an RP gets to do!

The past 9 years have seen Maraenui steering Taheretikitiki on the Waikato River at the annual Ngaruawahia regatta. Steering has become increasingly difficult for him as his field of vision has narrowed. Glare on the water does not help either. He had decided the 40th anniversary celebrations of Te Atairangikaahu’s coronation back in May would be his last time steering the waka taua, so for her tangi he took his place back paddling on the waka, promising to sit in front of the new steerer and offer support.

2006 has been a busy year for Maraenui on the waka, as the waka were also part of the opening and closing ceremonies at the World Waka Ama (outrigger canoe) sprint championships at Lake Karapiro. He will take part at the opening of a new marae on the shore of Lake Taupo. Other highlights for Maraenui have been paddling the waka supporting the America’s Cup challenge in Perth in 1987, and supporting Dame Te Ata on Taheretikitiki when she was invited to the Henley Royal Regatta on the River Thames in England in 1990.

Taheretikitiki was built in 1972 from totara logs. It’s colour scheme was chosen by Dame Te Atairangikaahu and instead of the traditional red and black is red only below the waterline, and the rest is clear varnished to retain the natural colour of the wood. It is 20 metres (66ft) long and 1.5 metres (5ft) wide. It is 2 metres high with its taurapa and usually carries 36 kaihoe (paddlers).

Although Maraenui’s tribal affiliations are Nga Puhi and Te Arawa, he began paddling for Tainui on Taheretikitiki in 1985 while at Wesley college near Pukekohe. He says Taheretikitiki has a number of Nga Puhi kaihoe and he sees his role as serving the Queen (and now her son King Tuheitia) and representing his Iwi. The waka also provides Maraenui with a physical workout, but he still misses being able to play rugby and rugby league. Dame Te Ata’s tangi was a time for grieving both her passing and his own loss of sight and mobility, but mates on Taheretikitiki are learning to look out for him and help him get around. When the weather and conditions are right Maraenui cycles to Ngaruawahia (20km) to practices or events. Conditions can change fast and these days he gives the waka leader a hurry-up if practices are looking like encroaching into twilight.

9. Notices

Newsletters on Tape

Members who receive their newsletter on tape are also entitled to receive a print copy. If you would like your newsletter in both formats please contact the National Secretary by writing to Janet Palmer, Retina NZ, PO Box 17 242 Wellington 6147, by email at secretary@retina.org.nz or by telephone at 04 299 1801.

The Foundation has decided that taped newsletters do not need to be returned to the library. You may keep the tapes for your reference, or if you wish you can return them to the library with other magazine tapes.

Support Groups

Are you interested in setting up a support group in your area? If you are interested in having a get-together to meet other members please get in touch with us by ringing the peer support number, 0800 233 833 to be put in touch with other members who live near you.

Christchurch Branch

Christchurch members please keep Saturday the 2nd of December free for our end of year gathering at 5.30pm. Details will be posted out to you in November about this event.

The Good Look Book

This Retina NZ publication was launched at our conference. It is the story of 8 members’ journey’s with sight loss, and was collated by Kaye Newton. If you would like a copy please contact the National Secretary. The cost is $10 plus $2 postage and packaging and it is available in print, on CD, and tape.

Change of Address

If you change your postal address, email address or phone number could you please notify the National Office at PO Box 17 242 or on telephone 04 299 1801. Mail and email is being returned to us and sometimes it is difficult to trace people.

Volunteers

Please note that the executive of Retina NZ are volunteers of a consumer group made up of members of the Foundation and other people with a retinal disorder. We are not employed by the Foundation and are unable to access services for you such as volunteer drivers or library services. You need to approach the appropriate Foundation staff to be able to utilise these services. Please ring the 0800 24 33 33 number for advice.

Quote: I know of no more encouraging fact than the unquestioned ability of a man to elevate his life by conscious endeavour: Henry David Thoreau-1817-1862

10. Book Reviews

The First Year: Age-Related Macular Degeneration. An Essential Guide for the Newly Diagnosed by Daniel L. Roberts. Published by Marlowe & Co.

From the moment of his own diagnosis Roberts made it his mission to provide the most up-to-date knowledge about AMD through his website www.mdsupport.org He has now applied his wealth of knowledge to this book which provides crucial information for everyone who wants to be an informed, active participant in the management of their condition. The First Year covers a wide array of subjects including diseases of the retina, the visual symptoms of AMD, and living life as quality versus quantity. Strategies for slowing AMD progression, research, approved and experimental treatment options, and alternative medicines are discussed in depth. Roberts also discusses low vision devices, technology, rehabilitation training, coping with depression and boredom, and methods of self monitoring one’s eye condition. The sections on coping include exercise, diet, stress management tips, driving, traveling, and other key lifestyle issues. The book also includes several personal accounts of living with AMD.

Set in large type for ease of reading, The First Year: Age-Related Macular Degeneration includes a glossary of ophthalmic terms, a comprehensive reference section of more than 100 resources for low-vision devices, audio books, research publications, and lists drugs and supplements that have an adverse effect on ophthalmic conditions. A glossary of terms related to retinal disease concludes this book.

Age-Related Macular Degeneration: What You Should Know-RNZFB

This booklet has been published by the Foundation for those with AMD, their families and friends. It aims to answer questions about AMD, its causes, symptoms, diagnosis and treatment. It also explains many of the common terms associated with AMD, the difference between wet and dry AMD, how to protect your vision after diagnosis, what the AREDS formulation is, includes an Amsler Grid, and offers several options for gathering more information both within New Zealand and overseas. If you would like a copy of this publication please contact your local RNZFB office.

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.

DO YOU NEED HELP OR ADVICE

The Retina NZ Peer Support programme is a free and confidential service operating nationwide. To make contact with one of Retina NZ’s peer supporters telephone 0800 233 833. All calls are treated in strictest confidence.

Ring any of the following free-phone numbers if you want to speak to a geneticist or genetic counselor about your own diagnosis or RP, macular degeneration or other retinal degenerative disorders.

Auckland Genetic Hotline (Northern Regional Genetic Service)

0800 476 123

Wellington Genetic Hotline 0508 364 436

Christchurch Genetic Hotline 0508 364 436