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The Newsletter of Retina New Zealand Inc
A Member of Retina International
Winter Newsletter August 2006 No. 30
1 From the Editor
2 From the President’s Desk
3 Annual Report from the President
4 Glossary
5 The Jerusalem Eye Hospital
6 Telephone Information Service
7 Research - Update on Vitamins and AMD Therapy
8 Coping - Eating at Home and Dining Out
9 Kapiti VIPs
10 Book Review
11 Notices and Branch News
Mission Statement
To promote public awareness of retinal
Degenerative disorders
To provide information and support
And to foster research leading to treatment and
eventual cure
Editor
Susan Mellsopp
108B Comries Rd
Hamilton
Phone: 07 8533 612
Email: editor@retina.org.nz
Please note: Deadlines for articles for the spring, summer and autumn issues are the 15th October,
14th January and 13th April respectively
To order:
EMAIL COPIES: contact the National Secretary if you would like your newsletter emailed to you
TAPE COPIES: contact the National Secretary if you require your newsletter on cassette tape and advise if you also require a print copy.
National Secretary
Janet Palmer
Retina New Zealand
PO Box 17 242
Wellington 6147
New Zealand
Telephone: 04 299 1801
Fax: 04 472 9490
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
1 From the Editor
The response to our survey has been amazing, thank you to all those people who took the time to fill in the survey questionnaire, it is very much appreciated. The results will be published in due course, but as newsletter editor I have included several of your requests in this newsletter. I am also looking forward to including your ideas in future newsletters, I have enough for about 2 years! Several members pointed out that they did not understand some of the terms we used in the questionnaire, so I have included a glossary to explain some of the terms. This is something we often do when we understand a language pertaining to a world we are comfortable with, but often fail to realize that others are not au fait with the specialized language. Also, to those people who suggested some colour may be nice in the newsletter, this is not possible as the PVI printer only prints in black and white.
Setting out and producing the newsletter on my own computer is proving very valuable both in time, what can be included, and using up the available space on the pages. The final few days before printing and taping can be very stressful if articles arrive on the deadline. As a result I have moved the deadlines for articles to be included in the newsletter to the middle of the month before, therefore the deadline for the November newsletter is the 15th of October. The other new deadline dates are listed on page 2.
My garden is looking a little worse for the wear, and my lawn needs some attention also. I have pruned my roses but strawberries need transplanting, and the climbers a few extra ties to ensure they travel in the correct direction. I have been enjoying long walks in the afternoon on the fine sunny days. I am trying to get both myself and Chocolat fit to take part in a 10km walk here in Hamilton in October, a challenge from a friend who has promised to accompany us both.
This issue of the newsletter is larger than normal. I have included Kaye Newton’s annual president’s report, information about the Jerusalem Eye Hospital, an article on the telephone information service, a research article on vitamins and AMD, and the coping section explores ways of dealing with dining both at home and in a restaurant.
I am looking forward to meeting some of you at the AGM/Conference in Wellington on the 26th August.
Susan Mellsopp
Ph: 07 8533 612
Email: editor@retina.org.nz
2 From the President’s Desk
We are delighted to congratulate June Ombler and Gordon Sanderson for receiving recognition in the Queen’s Birthday Honours in June. June Ombler was the driving force behind what has become Retina NZ today and has been an honorary life member since 1999. She has held all the executive positions over the years, most recently as editor of our newsletter. However, her award is recognition for being a strong advocate for vision-impaired and blind people in the community and for disabled people generally.
Gordon Sanderson has been on our SMAB, Scientific and Medical Advisory Board, since its inception and it would have been June who brought him into the Retina NZ fold. His award is for services to people with vision impairment which he has done over many years in many organizations including many years with the RNZFB board. June will receive her Companion of the Queen’s Service Order award on the 7th of September. Gordon receives his NZ Order of Merit award on the 5th of September. Best wishes for the presentation of these well deserved awards.
We have exciting news about a fundraiser for Retina NZ. Yates sell seed packets for the flower called Cosmos Bright Eyes. Retina NZ will receive 40 cents for every packet sold in New Zealand. The new season’s packets will be available now wherever Yates seed packets are sold. I will bring some packets along to our conference. They are easy to grow and would easily slip into an envelope if you wish to give some to a friend. You don’t even need a garden as they can grow in pots.
We hope to see many of you from the Wellington region on the 26th of August at our conference. We are expecting many visitors and you are most welcome to bring friends.
Kaye Newton
Phone: 03 3795 807
Email: president@retina.org.nz
Ecoglo
Ecoglo are strips 590mm long which can be affixed to steps, stairs, handrails, paths and decks. The strips can also be cut to length. They come with a non-slip mat which provides additional safety. They glow brightly all night having absorbed natural or artificial light during the day. They are easy to install with glue. On purchase the strips must be charged by exposure to natural or artificial light. To find out more phone 03 348 3781, 0800 232 645 or email sales@ecoglo.com
3 Retina NZ Inc Annual Report from the President to the Members: July 2006
I look back over the last twelve months and take pride in some of our achievements. However, I am also conscious of areas where we would like to do more, but we are hampered by our voluntary capacity.
The National Executive remained the same as last year. We are fortunate in the range of skills, experience and networks we have available to us.
My thanks go to our team of Janet Palmer, Secretary; Kaye Clark, Policy Secretary; Fraser Alexander, International Delegate; Camille Guy, Vice-President; Elizabeth East, Peer Support Coordinator; Denise Keay, Wellington Branch Representative; Lynn Keogh, Dunedin Branch Representative; and Susan Mellsopp, Newsletter Editor. Without their support and effort I could do little.
I would like to thank Petronella Spicer who has been sharing answering the peer support 0800 phone line with Elizabeth East. The service handled 420 calls in and out for the year to the end of June. Some of these calls can be quite lengthy. It is a valuable core service provided to all who use it and many (if not most) calls are not from existing members.
Last year we had a successful AGM/Conference in Auckland in August. About 65 people attended the day and the speakers were all awesome. I was impressed that we had people joining up on the day. That means that other members had brought them along as guests. We really do rely on members doing the talking to other people about who we are.
After the conference we had a peer support training session on the Sunday taken by Allen Little. The group was rather large, including the national executive and branch delegates, so the Aucklanders met again to have practical follow up sessions which were organized by Camille Guy. Our new peer support manual was launched which provides valuable information to the peer supporters and the executive members.
Publications
In September we published the detached retina pamphlet. This was collated and handled by Kaye Clark. Copies of these were distributed to all optometrists via their newsletter mailout at no cost to us. Although this is not a common condition, people do need to be aware of it, and the need to seek professional advice without delay to save sight.
The newsletter is the core service that reaches all members. Susan Mellsopp has taken over the whole production process, using the printer of Parents of Vision Impaired in Hamilton. Using PVI’s printer has reduced our printing costs, as well as giving Sue more control over just what content gets included in each issue. We have gained plenty of feedback from the survey for ideas for articles. What came through strongly was people wanted to hear about other people’s stories and to be kept up to date on research. Sue has provided support to me when required on executive matters as well as being an independent editor. All but one person was satisfied or very satisfied with the current content. I know Sue could easily fill many more pages, but we limit the size to what can be folded and mailed for 45 cents.
Our Macular Degeneration booklet is now out of print. We have been photocopying copies to keep us going. The RNZFB is producing a large print book on MD, so it seemed pointless for us to update and reprint our book as well.
Scientific and Medical Advisory Board (SMAB)
As always the SMAB network is in the background ready to provide advice and comment on particular issues when requested. Their professional expertise covers a range from molecular genetics, psychiatry, optometry and ophthalmology. Dr Andrea Vincent represented Retina NZ at the International SMAB meeting in Fort Lauderdale in May. I thank Marion Maw for continuing to chair this board.
Survey Questionnaire
In May this year we sent out a questionnaire to all members receiving the newsletter. There were questions about the newsletter, how people access printed media, telephone peer support service, the website, and whether people want meetings or phone contact. We have been absolutely astounded to receive back more than 165 replies. We thought we would do well if we got back 50 replies. There was an excellent response rate from people who receive the newsletter on tape, and I presume many had to get others to fill in the responses. Thank you to all of you. We are heartened by the supportive comments received. It has been a humbling experience for me to read them, and realize just how many of our members are older people who do not have access to any special equipment but just box along using magnifiers or family to read to them. As the responses have still been dribbling in, we will produce a full report of what we learned in the November newsletter.
Membership
At the end of March 2006 we had 473 members compared to 464 members at the same time last year. There have been many new members but the total remains static. We have not actively sought to join up new members. Our subscriptions were increased this year from April. Only two members have resigned rather than pay the increase. People are making donations just as generously as before in spite of paying a higher subscription.
Website
There has been little change here, other than putting up-to-date newsletters on site. We hope to get outsiders to revamp the site for us. We know what we would like to see on it, but haven't had the manpower or skills to do it ourselves. Again, the survey showed us how many people do not have access to computers.
Branches
Some branches have been meeting more than others. We need more people to get involved at a local level to ensure that meetings are held. Many of our members are elderly and do not seek face to face meetings regularly, but would welcome occasional meetings to make contact with others in their area. I would like to mention the work of Gael Hambrook and Heather Tofts in keeping the Kapiti VIPs going with monthly meetings at a community venue. This is run with only $100 input from Retina NZ.
The Good Look Book
This has been a personal project of mine. I will not say too much here as we are to launch this at out conference. However, I have been helped very much by the way everybody who was approached was so positive. Not one person has said no to any requests I have made. I hope this will prove to be a useful resource to our society and relevant to a wider audience beyond our membership. It may even boost our finances if it is popular.
I will be now entering my final year as president. Hopefully I will get to cross off some of those goals that are still awaiting completion before my time expires. We acknowledge the support, especially financially, of the Royal New Zealand Foundation of the Blind. They are facing difficult times with little growth in fundraising income. However, I think Retina NZ still has an important role to play with providing support to those people who have been diagnosed with retinal disorders, but whose sight is not (yet) bad enough for Foundation membership.
We also value our good working relationship with the NZ Association of Optometrists.
The society is in good heart. However, we do need new people to come on board to ensure that it has a good future in the years ahead. The more you can get involved, the more you can gain from your membership. Welcome aboard.
Kaye Newton/President
July 2006
4 Glossary
Adaptive Technology
This is a broad term for technology that is specifically designed to assist people with a disability to take fuller advantage of a range of activities. Examples are:
1. Talking screen reading software that reads out in a synthetic speech what a sighted person would see on a computer screen.
2. Paperless Braille displays which render electronic text in Braille.
3. Braille embossers which produce hard copy Braille pages from computer files.
4. Electronic notetakers and personal organizers with speaker or Braille output.
Products which magnify the display of information on a screen to make it easier to see by changing colour contrast or other settings.
Screen Reading Software
Jaws for windows is the most popular screen reader. It is a multi-lingual software speech synthesizer which supports all standard windows applications. It works with a computer to provide access to today’s software applications and the internet. Jaws internal software speech synthesizer and the computer’s sound card read information from the screen aloud.
Magic, another screen reader, combines great magnification features with low vision screen reading when purchased with the speech option. It offers the ability to choose the information you want read from the screen as you navigate through your programmes. Magic is easy to use with its talking large print instillation, colour coded user interface and hot keys.
OPENBook offers individuals a powerful tool to read, edit and manage text. It converts a printed page into electronic text to be read aloud by a voice synthesizer. Printed text can be scanned into the computer to be read. OPENBook also has settings for magnification, character spacing and contains exclusive reading enhancement features.
Quote- Books are the legacies that a great genius leaves to mankind which are delivered down from generation to generation as presents to the posterity of those who are not yet born.
Joseph Addison 1672-1719
5 The Jerusalem Eye Hospital
The St. John of Jerusalem Eye Hospital is a charitable foundation and a part of the Order of St. John. The hospital, which was founded in 1882, is located in East Jerusalem. While it treats all who seek its care irrespective of race, creed or ability to pay, the reality is that it serves the predominately Arab populations of the West Bank, Gaza and East Jerusalem (population more than 3 million). For them it is the sole provider of quality ophthalmic care. More than 51,000 patients are seen annually, and more than 3000 major eye operations are performed. 25% of the patients are children and many of those suffer from congenital eye diseases such as cataracts and glaucoma. The pediatric ophthalmic department is a recent achievement and deals with over 10,000 patients each year, most of whom have serious and complicated eye conditions.
A large number of trauma cases caused by domestic accidents and more recently from the civil and military disturbances in the area are treated.
Diabetes is very prevalent in the region and is detected late and poorly controlled. The major cause is a high incidence of consanguineous marriage and a population in which 25% are under the age of 10. One of the major causes of blindness in adults is diabetic retinopathy. They require sight-saving laser or vitreo-retinal surgery. The specialist vitreo-retinal surgeon performs an average of ten major operations per week.
For many years the hospital services were given free of charge as many of the patients were destitute. The huge increase in overheads meant that a fee for patients had to be introduced. However only 30% of the running costs are obtained from patient fees, the remainder of the money required to run the hospital is obtained by donations and grants.
Gaza has many problems, the least of which is its isolated position. In 1992 a permanently staffed clinic was opened which included an operating facility in order to do cataract surgery on a day case basis. Some 8000 patients are seen each year, and 100 cataract operations are performed.
An outreach team goes to the West Bank to provide primary ophthalmic care to the most underprivileged and socially deprived members of the Palestinian population. The objectives of the outreach service are to reach those who cannot get to the hospital and to carry out health education in the local community. Each outreach team consists of a doctor, nurse, orthoptist and driver. Non-surgical cases are dealt with immediately, these include laser treatment for diabetic eye disease. Patients requiring surgery or more detailed assessment are referred to the hospital in Jerusalem. Screening for serious eye disease is also carried out. Two clinics are usually held each week, but the frequency is increased during heightened security when road blocks and the withdrawal of travel permits make it impossible for patients to travel to Jerusalem.
This information was kindly supplied by The Order of St John in Hamilton and also downloaded from www.stjohneyehospital.org
6 TIS-The Telephone Information Service by Murray Peat
The telephone information service, or TIS as it is more commonly known, is an information delivery system that callers can access by way of a touch tone telephone. To access the service callers phone either a local or 0800 number depending on where they reside in the country. The TIS numbers are listed below:
Auckland 302-3344
Hamilton 834-2288
Napier-Hastings 835-9136
Palmerston North 354-8316
Wellington 389-3858
Christchurch 355-8381
Timaru 688-6921
Oamaru 433-1026
Dunedin 455-8833
Balclutha 418-3332
Gore 203-3001
Invercargill 218-6470
Everywhere else 0800-363 344
Getting Started
When a caller phones TIS the first thing they will hear is a welcome message. Following the welcome message there may be an announcement about new items of interest on the service. The caller is then presented with a menu of choices called the main menu. By using the keys on the telephone a caller can choose which piece of information they wish to listen to. The menu is structured in such a way that each item of information is read out and then the required key to access the information is announced. For example, at the start of the menu the caller will be presented with the following:
1. The 1 denotes the key the caller needs to press to access this information.
Menus are read out three times and at the end of the third reading if a choice has not been made the service will assume the caller has gone away and the call will be disconnected.
By use of menus the caller can move freely through various options and access a wide variety of information. If at any time a caller wishes to return to the previous menu they simply press the zero key and this will return them to the previous menu. Once a caller becomes more familiar with the key strokes they need to make they can simply press the key for the information they wish to hear at any time without having to wait for the options to be read out.
Needing Help?
Any time a caller requires help as to what they need to do they can press the hash key which is to the right of the zero. This will cause a help message to be announced which will provide specific information and helpful suggestions for the caller.
User Numbers and PIN Numbers
The Foundation of the Blind has secured permission from some copyright holders to freely provide such information as newspaper readings and radio and television listings. In return the Foundation of the Blind has been asked to set in place a system that will only allow Foundation members to access this information. This is why some menu options require the entry of a seven digit user number and a five digit PIN number. When a caller encounters one of these options they will be prompted to enter their user number by using the keys on their phone. The caller will then be asked to enter their PIN number by once again using the keys on their phone. Because the user number is a seven digit number many members simply choose to use their home telephone number and then select a PIN number.
The user/PIN number is also used to access the free directory assistance which is available to members. Following the entry of the user/PIN number combination the caller is transferred to either the national or international directory assistance at Telecom without any cost being incurred by the caller.
Helpful Hints
Many phones have a raised dot on the five key on the keypad. This can be used as a central point from which a caller can navigate around their keypad without having to rely on visual information from the keys.
If a caller has difficulty remembering their user/PIN number combination they can consider either renting a memory phone from Telecom or simply purchasing a phone with this facility. This will enable a caller to use one key stroke for their user and PIN number.
Phones are available that allow the user to increase volume and TIS also has the ability to either speed up or slow down the speed of information in bulletins to meet the caller’s requirements. When listening to an item of information a caller can simply press the hash key to the right of zero to hear more detailed information about this topic. TIS is a very user friendly system with spoken instructions and help options available at all times. The service is available 24 hours a day 7 days a week.
Some Items of Interest
Option 3 from the main menu will take the caller to a menu where they can choose to listen to various items of interest from the Foundation. This generally includes information about Foundation services and reports from the Foundation’s CEO and Board of Directors.
Option 4 from the main menu presents the caller with local information relevant to where the caller is ringing in from. Please note that for the 0800 number selections 1, 2, 3 and 4 are not available from this menu however options 5, 6, 7, 8 and 9 are available.
Option 5 from the main menu presents the caller with interactive lines run by consumer organizations such as the Association of Blind Citizens of New Zealand etc. Generally each week a bulletin is presented by a narrator and callers can leave a voice mail message which is played to callers as part of the bulletin. This is a wonderful way of sharing information and ideas.
There are many other options that are available and from time to time these may change as items are either removed or added.
Getting a User Number or Wishing to Have Further Information
Should you wish to obtain a user/PIN number combination or would simply like more information please feel free to contact the Foundation of the Blind’s Information and Advice service on either Auckland 355 6899 or 0800 24 3333.
Snippets
Sound and Touch
Did you know that if you are a member of the Foundation you are eligible to receive the library’s newsletter, Sound and Touch. It lists new talking and Braille books purchased by the library. Sound and Touch is available in print, cassette, email or in Braille. Email the library at library@rnzfb.org.nz or phone 0800 24 33 33 to be put on the mailing list.
Equipment Catalogue
The Foundation has published a new equipment catalogue. The catalogue and separate price list are available in several formats, and can be obtained from Equipment Services, RNZFB, Private Bag 99941, Newmarket, Auckland or by phoning equipment services on 0800 24 33 33. Orders can be placed by telephone, fax, email, post or at display days.
7 Research-Update on Vitamins and AMD Therapy
The use of vitamin therapy for age-related macular degeneration (AMD) moved into public awareness with the publication of the Age-Related Eye Disease Study (AREDS). AREDS was a 10 year trial looking at the use of antioxidants and zinc. It showed that a combination of antioxidants and zinc is most effective in slowing the progression of the disease and vision loss in people with intermediate macular degeneration. People taking the antioxidants only or the zinc only did not have as good a result. Participants in the study could also take a daily multivitamin, Centrum. Many people with AMD now take a vitamin with the AREDS formulation.
Other substances may have a positive effect on macular degeneration. These include lutein, zeaxanthin, omega-3 fatty acids (DHA and EPA). AREDS ll, a continuation of the AREDS trial, will now study these ingredients separately and in combination. Another arm of the study will contain people who take variations of the original AREDS formula, specifically either the AREDS supplement; the supplement with no beta-carotene; the supplement with a low dose of zinc; or the supplement with no beta-carotene and a low dose of zinc.
Other Vitamin Research
It will be many years before we see results from this new AREDS ll trial. Meanwhile, other research on vitamins continues and can be contradictory.
Lutein and Zeaxanthin-There are many studies that support the use of lutein and zeaxanthin for macular degeneration. The macula of the eye is made up of these two pigments. They can be reduced by smoking, sunlight and other stressors that trigger free radicals that attack the macula. There is a logic to replacing them through diet and supplementation.
The Melbourne Collaborative Cohort Study presented data that showed no evidence that lutein is protective for AMD. The study involved over 41,000 people in Australia. They also noted that a higher intake of ‘healthy oils’, specifically olive oil, was protective for AMD. It did show a connection between a diet high in transunsaturated fats and development of AMD.
This study supported previous research on fats, which also indicated that the quality of fat in a diet is at least as important as the quantity of fat. High quality oils such as olive oil and avocados seem to be good for the eye, whereas saturated and trans fats are connected with more AMD.
Another study, which used people without AMD, reported that a daily supplement of 18mg of lutein and 2.4mg of zeaxanthin did slightly increase the macular pigment. The density of macular pigment seems to be related to the health of the macula, with a denser pigment indicating a lower risk for AMD.
Multiple Vitamins
It has been reported that the benefits of vitamin supplementation are questionable. The National Institute of Health Conference recognized that some supplements were proven, specifically the AREDS formula for AMD, calcium and Vitamin D for bones of postmenopausal women and folic acid for women of childbearing age. They were concerned people may be taking multiple formulae and may be getting well over the recommended daily value of some ingredients, particularly vitamins A and E which accumulate over time. There needs to be more research done to identify the optimal level of vitamins for both healthy individuals and those dealing with some disease.
What to Do?
The AREDS data for intermediate AMD is solid. It was not shown to prevent AMD or effect the early stages. Lutein and zeaxanthin are contenders and you should discuss this with your ophthalmologist or optometrist. The best thing you can do is to eat a varied, healthy diet with lots of fruit and vegetables, fish, low consumption of red meats and a limited number of products with transfats (snack food and pastries for example).
This information was downloaded from the Macular Degeneration Partnership at www.amd.org
Cortical Implants
Several researchers are exploring the possibility of creating vision in the brain through an implant in the cortical area of the brain. The patient would wear specialized head gear consisting of a miniature camera and sensor, connected to a computer and then to the implant. This surgery was first done over 20 years ago, with the ensuing improvement in technology the patient can now discern large letters against a white background.
Retinal Chips
Could an electronic device in the retina replace damaged photoreceptor cells? Scientists are exploring several different avenues to see if this can be done successfully. Researchers recently demonstrated an electric ‘artificial retina’ that allows blind people to see spots of light. A two millimeter square chip was placed on the non-functioning retina of 15 patients. Dots of light were transmitted wirelessly to the chip by an eyeglass mounted device. The patients reported being able to see these dots and to count sequences of light flashes. Some could make out colours and shapes and even read letters held before their eyes. The chips only remained in place during the 45 minute surgery. Animal studies are planned to discover if the device can be implanted safely.
This research is very experimental and it will be some years before it is available to patients. Additional human trials are several years away. People with macular degeneration will benefit, but those will total blindness will be the first candidates. These devices will provide just enough vision to navigate, but will not be good enough for reading and driving. The surgery involves risks which may be acceptable to a person with no vision, but might be too much of a chance for an AMD patient with useful peripheral vision.
Two major hurdles are the long term stability of mechanical devices in the neural retina and the visual impressions created by such artificial stimulation.
This information was downloaded from www.amd.org If you would like more information about this surgery it is available on the Optobionics and Harvard University websites.
FDA Approves Lucentis
The United States Food and Drug Administration (FDA) approved the use of Lucentis for wet macular degeneration on the 30th of June. The latest in a group of anti-angiogenic drugs, Lucentis acts against the growth of the new blood vessels of wet or exudative macular degeneration. 95% of patients treated with Lucentis maintained their vision in the Phase lll clinical trials. Vision improved by at least 3 lines, or 15 letters, on the study eye chart in up to 40% of these patients at one year. One of the most exciting results of the trial showed that 40% of patients treated with Lucentis achieved vision of 20/40 or better. This is particularly good news for those who were able to drive prior to an episode of wet AMD. There is hope that after treatment many of them will be able to regain enough vision to return to driving.
Lucentis is injected into the eye on an monthly basis for best results. The average patient is expected to receive 5-7 injections in a year. The cost of Lucentis is higher than other therapies for AMD.
Early detection and treatment are key to good results of any therapy for wet macular degeneration. Patients with both wet and dry macular degeneration should assess their vision regularly with the Amsler Grid to determine if vision changes have occurred. Use of the Amsler Grid may identify changes that would indicate a worsening of wet AMD or a shift of dry AMD to wet AMD. In either case patients should contact their eye specialist if a change of vision occurs.
Gene Therapy for Halting AMD
GenVec Inc. has announced that its gene therapy for the treatment of wet form AMD has shown good results in a 12 month, 28 patient, Phase 1 trial. Though the study was primarily conducted to assess safety, higher doses of the treatment were effective in halting disease progression. GenVec’s treatment, known as AdPEDF, involves the delivery of a gene that leads to the production of a therapeutic protein called pigment epithelium-derived factor (PEDF). Earlier pre-clinical trials funded by the Foundation Fighting Blindness showed that PEDF blocks the development of unhealthy blood vessels that cause vision loss in people with wet AMD.
Phase 1 trial participants received AdPEDF through an intravitreal injection. The researchers believe it is a treatment that requires fewer eye injections than other emerging AMD treatments and can positively impact on developing therapies for other retinal degenerative disorders.
A Phase 2 study is underway for treating patients with early to moderate wet AMD. A total of 20 patients are receiving a single dose of AdPEDF at either of two dose levels.
The results of the Phase 1 trial were published in ’Human Gene Therapy’ in February 2006. This information was downloaded from www.retina-international.org
Snippet
Notice from Wellington City Council Library
Wellington Central Library is now home to a great new magnifying device, a Smartview 5000KP, which greatly magnifies any text well beyond large print. It will be ideal to read magazine and newspaper articles, access discrete bits of information which may be inaccessible in ordinary print books such as recipes or council plans, and to read family letters or bills. It is very easy to operate and there are several colour contrast options available.
Quote- There are two ways to live your life. One is as though nothing is a miracle. The other is as though everything is a miracle.
Albert Einstein: 1879-1955
8 Coping-Eating at Home and Dining Out
There are many ways to make it easier for people who are blind or vision impaired to eat food at home or when dining out.
Locating Items at the Table
The saying ‘a place for everything and everything in its place’ applies when it comes to organizing a dining table. Set your table the same way each time and encourage others to do the same.
If you need to locate objects on a table use the ’trailing technique’. This involves placing your open hand face down on the table, relax your fingers and slightly cup your hand. Gently move your hand forward, from the edge of the table, in the direction of the object you are trying to locate. Use dark tablecloths, or a similar dark background. Use coloured or patterned drinking glasses rather than transparent glasses.
Tactile markers can help to distinguish items. Salt, pepper or sauce containers can be marked with Velcro or wrapped in elastic bands. Use a placemat to highlight the boundaries of your utensils and crockery.
Lighting
It may be useful to have a lamp on the table shining directly onto your plate. Make sure it is positioned below eye level to avoid glare. If you use natural daylight, sit side on or with your back to the window to avoid glare.
Locating the Food on a Plate
Ask someone to describe where the contents of your plate are sitting. You can use the clock face method eg. peas are at 3 o’clock and meat at 6 o’clock. Food should be placed with the meat nearest to you, as this is easiest for cutting. Explore the contents of a plate by tapping lightly with a fork to identify the various foods. Avoid plates with patterns. The pattern can be visually confusing when you are trying to locate your food.
Cutting
Cutting meat: Find the edge of the meat using the knife and fork. Move the fork about 2cm (1”) from the edge towards the centre of the meat. Cut around the fork to cut a bite sized piece. Pull the bite size piece away to check it is free. Lift from the plate and check that the meat is still on the fork by running your knife down the fork.
Cutting lettuce: Place a fork into the nearest part of the lettuce and cut around it. Keep placing the fork a step farther and cut around that spot. Anchor the bowl or plate during the cutting with the pressure of the fork. Anchor the remaining lettuce with the knife while pulling the fork away.
Spreading
Position one hand on the bread with your fingers at the top and your thumb at the bottom. Drag your knife over the bread from top to bottom in 3 sections, starting from the left side to the right. You can identify the edges of the bread when your knife touches your fingers at the top and your thumb at the bottom.
General Hints
Use your knife and fork to keep checking that the food is not too close to the edge of the plate, and push it towards the middle. Mashed potatoes, gravy or sauce can be used to lift peas and beans up on your fork without dropping them. When raising your fork to your mouth lean forward over the plate so any dropped food will fall back onto the plate, not into your lap. If you are not sure which shaker is salt and which is pepper, sprinkle a little of the contents onto your palm. The smell of the pepper or the heaviness of the salt will help with identification. This will also let you know how quickly it pours. Salt and pepper can be poured into your hand first and then sprinkled over food. Grasp a small salad or dessert plate around the edge with your thumb and forefinger and use them to stop food falling out of the plate. The cutting edge of a serrated knife can be detected by dragging it along a plate and listening or feeling for the buzz of the uneven surface. When transferring from A to B, for example putting sugar in coffee, move the containers next to each other to avoid spillage.
Adaptive Equipment
Non slip placemats: These provide a firm grip for your plate when you are trying to cut food or for a bowl when you are stirring.
Splayds: These are utensils shaped like a spoon, with prongs like a fork. They can be useful for eating casseroles or soft foods which can be cut by pressing down on the edge of the splayd.
Plate Guards: These are plastic semi-circles that are a couple of centimeters high. They clip to the rim of a dinner plate. A splayd or fork may be moved in a scooping motion towards the plate guard, which then assists to position the food onto the fork. There are also plates with sides that may assist with positioning food onto your fork, particularly if eating with one hand.
Dining Out
Where Should I Sit
If you have a guide dog you may like to choose a table out of the main thoroughfares as waiters and patrons don’t have to keep stepping around the dog.
Request a well-lit table near a window when you make the booking. Be prepared for poorer lighting than at home. You may like to bring your own contrasting serviette or placemat from home to discreetly place in front of you as you sit down.
What’s On the Table?
Ask a sighted person to describe the table setting, mentioning items in relation to the clock face. As items are mentioned trail your hand to locate them. Move items so they are where you want them. You may ask for candles, plates or other items to be removed it they are in the way and are not required.
What’s on the Menu?
Ask for the menu to be read out to you. Start with the headings, and then decide which category you want read in more detail. Select a meal that will be easy for you to manage. If you know a particular restaurant you may even be able to phone in advance and ask them to prepare a certain dish for you.
What’s On My Plate?
Be aware that some restaurants sometimes put garnishes or condiment containers on the plate. Ask for a description of the contents of the plate. You can ask for the meat to be cut up in the kitchen. This enables you to enjoy your meal without the worry and concentration of cutting. You can swap plates with a companion and ask them to cut your meat up. If you need to transfer food move the containers close to one another. Food tends to move towards the edge of the plate as you progress through a meal, try to keep the food centralized. Periodically check for spillage by placing four fingers of each hand under the rim of your plate with thumbs on top, lightly run your finger around the edge of the plate.
This information was downloaded from the Vision Australia website at www.visionaustralia.org.au
Assistive Media
assistivemedia.org is a website working to heighten the educational, cultural and quality of living standards for people with disabilities by providing free, copyright-approved, high caliber audio literary works to the world-wide disability community. They provide audio access to reading materials for anyone with a reading access barrier. Volunteers record magazine articles and other short works which are then available for download or in their podcast. There are over 800 recordings from magazines like the New Yorker, Smithsonian, Wired and Audobon as well as newspapers. A wide range of subject areas is covered from the arts and humanities through to history and world issues.
9 Kapiti Visually Impaired Persons Group
The Kapiti VIP group held its inaugural meeting in September 2003 in the recreation centre of a Paraparaumu retirement village. Elizabeth East organized the meeting in response to what she saw as a local need, including members of Retina NZ being able to meet face to face for the first time. About 30 people attended this first meeting where Kaye Newton (current President of Retina NZ) and Petronella Spicer (one of the peer support team from Christchurch) spoke.
A further meeting was arranged for February 2004 at the Kapiti Community Centre, at this meeting members indicated a desire to meet monthly. Gael Hambrook and Heather Tofts offered to co-ordinate the group. The Kapiti VIPs now do meet monthly, and have an outside speaker every second or third month. These speakers have included a local librarian talking about large print and talking books, a civil defence officer on emergency preparedness, and the falls prevention coordinator from Sports Wellington. Other speakers have included the manager of a local bus company talking about local bus routes, and Tim Prendergast describing his success as a vision impaired middle distance runner. Members have shared their stories, coping hints, and the frustrations they have faced coping with vision impairment.
The Kapiti VIPs meet on the third Monday of each month at 2pm at the Kapiti Community Centre. 12 to 15 people attend each meeting. For further details and information about our next meeting please phone Gael Hambrook on 04 904 3575. If you would like to set up a similar group for Retina NZ members in your area, or have a meeting to gauge interest, please contact Elizabeth East on 04 299 1800 or at pejeast@xtra.co.nz
Snippets
www.big.com
This is a search engine with the most readable results on the web. There is no squinting or straining to read small type, the font is large to begin with, and there are options to make it bigger. This is a great find for people with vision loss. The site also offers a big.com toolbar you can download which enables you to enlarge everything on a page.
Glaucoma NZ
If you have glaucoma you can join Glaucoma NZ at no cost due to their free membership sponsors. They publish a quarterly newsletter called ‘Eyelights’. Glaucoma NZ can be contacted by telephone at 09 373 8779, through their website at www.glaucoma.org.nz or by email at info@glaucoma.org.nz
10 Book Review
My Vision of Hope: By Lynda Cantor, Published by Buckingham Colour Press.
It’s 30 years since, as a young, recently separated mother of two, Lynda Cantor was told ‘you are slowly losing your eyesight and there is no treatment or cure’. She describes finding little or no support in the early days of her diagnosis, or any readily available information about the disease she had never heard of and could barely pronounce-retinitis pigmentosa.
With courage and determination she set out to contact hundreds of like-minded people also suffering from this group of hereditary progressive diseases of the retina. She also contacted professionals and experts in various countries who knew something about RP.
This book, which was published to celebrate its anniversary, tells the story of the British Retinitis Pigmentosa Society, the self-help group which Lynda founded, and which has raised millions of pounds to help fight blindness. Today the Society is a nationwide charity with over 25 branches in the UK and some 3000 members. It plays an important role in a worldwide network of charities dedicated to fighting blindness by raising and using funds for medical research into RP. It also provides welfare and mutual support to those with the condition.
This book is not only the inspiring story of one woman’s dogged determination, but is much more: a manual of do’s and don’ts for those setting out to organise and fund a self-help organization, and a seminar on the nature of retinitis pigmentosa and developing treatments for it. These include exciting cutting edge methods such as gene therapy, stem cell therapy, and tissue transplants. The mood is optimistic and the determination to push forward towards a cure is palpable. Proceeds from the sale of this book will go to the medical research fund of the British Retinitis Pigmentosa Society.
This book is available in 3 formats: book, CD and cassette tape. It can be ordered from the publisher or directly from the British Retinitis Pigmentosa Society. Details on how to order the book are available on their website at www.brps.org.uk
Quote- Our aspirations are our possibilities-Samuel Johnson (1709-1784)
11 Notices and Branch News
Retina NZ Inc National AGM and Conference
Our annual AGM/Conference is to be held at the Foundation’s premises, 121 Adelaide Rd, Newton, Wellington on Saturday the 26th of August at 10.00am. Speakers include Optometrist Andrew Sangster; Dr Toni Marks, a member of Retina NZ, speaking about how he has managed blindness caused by RP; Neil Jarvis, head of adaptive technology at RNZFB; and a panel discussion of Retina NZ members. Our latest publication, ‘The Good Look Book’, will be launched.
Retina Australia
Retina Australia is holding its biennial conference from the 22nd to 24th September 2006 in Canberra. Dr Gerald Chater will be the keynote speaker. He directs research on retinal diseases in the US with a focus on sight restoration. For further details check their website www.retinaaustralia.com.au or obtain a brochure and registration form from the National Secretary at secretary@retina.org.nz
ChristchurchBranch/Kaye Newton
We held our AGM on Saturday the 6th of May. Attendance was low due to illness. Barbara Mowatt from SPARC (Sport and Recreation Council) spoke about the green prescription service.
She mentioned the benefits of exercise and activity on health and wellbeing, outlining how the service can help individuals. A one to one service is offered in setting up a programme, along with information about what is happening in your area. SPARC also offers a follow up service providing support and encouragement to help people become more active. Referrals must come from your GP so SPARC can be aware of medical conditions which may affect your activity choices. Barbara Mowatt also demonstrated exercises that can be done while sitting or watching TV, all of which increase circulation. As usual our meeting concluded with lunch and lively conversations. Our next meeting will be held on Saturday the 2nd of September at 11am where we will celebrate the launch of ‘The Good Look Book’.
Auckland Branch
The Auckland Branch are to have a meeting on Sunday the 1st of October in the early afternoon. Auckland members will receive an invitation in the mail so please keep that date free.
Quote- Remember always that you have not only the right to be an individual, you have an obligation to be one. You cannot make any useful contribution in life unless you do this.
Eleanor Roosevelt:1884-1962
List of Publications
Booklets
“A Family Affair”- A New Zealand Guide to Inherited Retinal Degenerations.
Re-published in September 2000, 32 pages.
“About Macular Degeneration”-A New Zealand Guide to Macular Degeneration. Published in 2001, 32 pages.
Members will receive relevant booklet when joining Retina NZ. Extra copies can be ordered at $5.00 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
maculardegeneration
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 counsellor about your own diagnosis of 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