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May 2004 No. 21
From the Editor
Thank you to everyone who responded to the request to let us know how you
like the new format newsletter. It was much appreciated. Now I would like
you to keep writing with your questions to the experts. Let us know of any
concerns you have and tell us of any useful tips you can share with others
about how you cope with your visual impairment. No one knows it all and
everyone can help others to make their lives that bit less stressful by
sharing how you managed to solve some of your daily difficulties when you
have limited sight.
It was great to meet so many new members at the Auckland Branch meeting.
All except two long standing members who came were previously unknown to
me. Meetings and socials like this one give everyone the opportunity to
ask questions of the speakers as well as to meet your Executive committee
and other local members. I have notes of Dr Dianne Sharp's talk but will
have to postpone printing them until next issue due to lack of space this
Kaye Newton and Fraser Alexander will be the two delegates representing
Retina New Zealand at the 13th International World Conference and Congress
in Nordwijk , Netherlands at the end of June. They will be bringing back
the latest research news of RP, AMD, Usher syndrome and other retinal
disorders from the world's leading experts on retinal diseases.
Included with this newsletter is the Society's latest publication, a
re designed and improved "Coping Strategies" pamphlet. These are free to
members, so if you need more to give to relations and friends, contact our
National Secretary, Janet Palmer, and tell her how many you need. This is
a good way of spreading the word to others like yourself that we are there
to help you through our free Peer Support telephone scheme.
Now that I have entered my ninth decade of life and been your Editor since
the Society became Retina NZ Inc., I feel it is time to hand over the job
to someone else. A notice at the end of the newsletter asks those
interested to find out more about this very enjoyable and vital job for the
Society. Why not give it a try? It is most rewarding and you learn so
much as you search out articles for every forthcoming issue. The main
difficulty has been that I have never had the space to print everything I
wanted to tell you about.
With best wishes to you all.
Apt. C16, Rita Angus Village, 66 Coutts Street, Kilbirnie Wellington
Phone: (04) 387 4553
From the President’s Desk
There has been plenty happening since I last wrote to you early in February. The executive has submitted a budget for the next financial year and a six monthly report to the Foundation of the Blind.
I want to thank June and Janet for their work in setting up the new format for the newsletter. We seem to have received all positive feedback as shown in the letters to the editor later in this newsletter.
The Kapiti VIP support group has now met for the third time and is now meeting monthly. It is pleasing that non RNZFB members are coming along to this group. Our thanks go to Heather Tofts, Gael Hambrook, and Athol Mitchell for driving this group along. The Manawatu group met again in Palmerston North in April and has agreed to meet quarterly. Alex and Joan Thompson have been making a real effort to get notices out to all relevant eye professionals and other agencies in the area. If anyone in these areas would like more information, contact Elizabeth East on our number 0800 233 833.
The executive had a very busy weekend last weekend in Auckland. A meeting was called on Friday night to get Auckland members together and we were very pleased to welcome 50 members and friends. Because this was held on a Friday night, there was some scepticism about whether people would manage the hurdles of distance, darkness and Auckland traffic to get there. Thanks to Camille Guy for organising this. Plans are underway for another meeting later this year.
The next day we attended the Consumer Consortium at the Foundation of the Blind, where our views were sought, particularly on the draft annual plan. Our executive planning meeting on Sunday focused on what we want to get done by the end of the year. We will try to do more to promote awareness of our society and the peer support service. We now have a new hosting arrangement for the website, so we expect to be able to get on with changes and improvements in the near future. Updating will be done more regularly once Lynn Keogh in Dunedin has been trained in how to manage the site.
For those in the Christchurch area, please mark your diaries or calendars for the 18 September. We will be having the National AGM in Christchurch this year, and we will have speakers to interest all members and families. This is a one day event when there will be plenty of opportunity to meet and talk to other people present.
Last Monday, three of us attended an inaugural meeting to look at Blindness Prevention. This was organised by Tony Haas who brought together representatives from ophthalmologists, optometrists, Diabetes Society, RNZFB, Ministry of Health and Tongan Health Society. There is work to do to decide what the main focus of this group will be, but all were keen to see the group reconvene to make progress on issues relating to preventable blindness. It was felt that there would be strength in co operation and collaboration by the organisations to present a stronger voice.
Kaye Newton 8 May 2004
Eye Disease could be detected sooner
by Lauran Neergaard, AP Medical writer. The Seattle
Post Intelligencer, 23 February 2004
WASHINGTON Millions of middle aged and older Americans unknowingly harbor one of three eye diseases that could blind them diseases that could be detected in time to save at least some sight if they got regular eye exams. Glaucoma, macular degeneration and diabetic retinopathy all sneak up on their victims, destroying vital eye cells before the person is aware there's anything wrong.
Risk increases with age. Indeed, the government predicts the number of people left blind or seriously visually impaired is likely to double in 30 years as the baby boom generation grays. The elderly are most at risk of these diseases, but people in their 40s can get them, too. Yet vision specialists say far too few people get regular comprehensive eye exams not where you read the "E" on an eye chart, but where your eyes are dilated so the optometrist or ophthalmologist can spot any disease deep inside.
Now, the government has awarded the eye charity Prevent Blindness America a five year grant to help fight age related eye disease by funding free screenings for older people around the country. .... And a coalition of eye doctors and geriatric advocates has begun a campaign to teach people about who's at risk.
Eye exams aside, among the advice: Protect your eyes from sun; don't smoke, which damages eyes, too; and eat lots of vitamin packed dark, leafy vegetables. Those steps may help prevent these diseases from ever forming, says Northwestern University ophthalmologist Dr Susan Taub, who chairs the Better Vision Institute.
There are no national figures on how many people over 40 follow guidelines to get a comprehensive eye exam every year or two. Diabetics and others considered at high risk, such as those with affected relatives, are urged to get annual exams. But some sobering statistics suggest skipping those exams costs vision. Glaucoma, for instance, affects more than 2.2 million Americans, half of whom are unaware they have it, according to the government. Up to a fifth of the nation's 13 million plus type 2 diabetics already show signs of sight stealing retinopathy at the time their diabetes is diagnosed, says the American Diabetes Association. And while 1.7 million Americans have lost vision to advanced stage macular degeneration, another 7.1 million are at very high risk because the disease has reached intermediate stages without symptoms, says the National Eye Institute. Worse, a startling study of Medicare beneficiaries last year found that even people already diagnosed with these eye diseases skip exams: Over half had at least one 15 month gap between doctor visits.
The three diseases all blind differently :
Age related macular degeneration, or AMD, steals vision from the center of the eye outward. Age aside, people with light colored eyes are most at risk, because the sun's damaging ultraviolet rays can penetrate the retina at the back of the eye more easily. There are two types. In the "dry" form, light sensitive cells in the macula, the center of the retina, gradually break down. The "wet" form is less common but causes more rapid damage, as blood vessels leak behind the retina. Patients with intermediate stage AMD can slow the damage by taking high doses of antioxidant vitamins plus the mineral zinc. Also, laser therapies can seal off the “wet” form's leakage; there is no treatment specifically for the “dry” form.
Glaucoma steals vision from the outside in, with gradual damage to the optic nerve that first destroys peripheral vision. Here, for unknown reasons, people with darker eyes are most at risk, as are blacks and Hispanics, and diabetics. Lost vision can't be restored but after diagnosis, eye drops or laser therapy almost always preserves remaining sight.
Diabetic retinopathy is a diabetes complication in which retinal blood vessels break, leak or become blocked, causing spotty vision. It can affect young people who have had diabetes from birth, but most diabetics are middle aged or older and retinopathy risk increases with age. Lasers can seal off blood vessels about to harm vision, making close monitoring crucial.
Results of Auckland Summer Scholarship Awarded by the S.A. and G.J. Ombler Trust in 2003 - 22 April 2004
Summary of Research and its Significance to Health
Supervisors: Mark Donaldson and Caroline Styles Dept of Ophthalmology, Manukau Superclinic, South Auckland.
Student : Serena Park
Diabetes is the most common cause of blindness in people of working age in western societies. There are about 115,000 New Zealanders with diabetes with this number predicted to increase to more than 160,000 during the next 10 years. All of these people require regular eye examinations to detect sight threatening changes before blindness occurs so that effective blindness preventing laser treatment can be given in time.
In people with diabetes the increased sugar levels in the bloodstream damage the fine capillaries that course through the retina. This results in diabetic retinopathy. The damaged capillaries can also leak fluid. If this occurs in the most important area of the retina called the macula, then vision becomes reduced due to macular oedema.
Digital photography is used extensively to detect eye problems in diabetic patients. However accessing photographs can be difficult in some people and leads to an increased burden on ophthalmology services as these people need to be seen in a clinic but may not need any treatment.
There have recently been technological advances in imaging the retina in other ways besides photography. A project at Manukau Superclinic has looked at a new laser system that produces three dimensional images of the retina called the Heidelberg Retinal Tomograph. More than 100 patients were examined using this machine, which scans the retina in 3 seconds. The results showed that this new technology might be of great use in patients with macular oedema. These people can have a scan in addition to photography in one visit and the threat to their vision can be more accurately assessed without having to wait to be examined by a retinal specialist. This could significantly reduce the greatly increased workload that all eye clinics are facing due to the current and future epidemic of diabetes.
EDITOR's NOTE: I have just been informed (22nd April) by Dr Mark Donaldson that Serena Park, the Medical Student who accomplished this Project has been awarded the distinction of Wallath Prize winner for her project.
Results of Otago Summer Scholarship Awarded by the S.A. and G.J. OMBLER Trust in 2003 - 10 May 2004
A New Zealand family is affected by an inherited retinal disorder that may be associated with intellectual impairment and/or autism in some individuals. It is thought that an alteration in the human CACNA1F gene is responsible (Dr Marion Maw, personal communication).
In the present project, Boyu Xu used a technique called PCR RT analysis to investigate whether the mouse Cacna1f gene is active in the retina, pineal gland and brain of four and ten week old mice. Another detection method, called in situ hybridisation, requires that fragments of the Cacna1f gene be cloned into a vector suitable for producing the necessary probes. Boyu Xu successfully carried out this cloning step and made a single attempt to carry out in situ hybridisation on retinal sections from wildtype type mice before running out of time.
Post doctoral fellow Dr Shubiao Wu has subsequently used these probes to study Cacna1f gene activity in both retinal and pineal tissue.
Your Questions Answered
Camille Guy, our Vice President asked Professor Charles McGhee, professor of Ophthalmology at the University of Auckland the following questions on behalf of two of our members. We print his answers below. EDITOR.
Q. Something I wonder if UV light in New Zealand is stronger and that is supposed to affect the rate of development of cataracts do New Zealanders have a higher rate of cataracts? We hear about higher rates of melanoma and skin cancer because of our sunlight and outdoor lifestyle, so does that apply to cataracts too? Kaye Newton
A. Professor McGhee. says there is insufficient research data to say whether New Zealand has a higher rate of cataract, but a recent Auckland study of around 500 cataract patients showed that Maori and Pacific Islanders were developing cataracts almost ten years earlier than usual, possibly due to a higher incidence of diabetes, smoking, and more exposure to UV light. McGhee and colleagues found that they were dealing with harder, tougher cataracts than they were used to in the same age group overseas.
Q For those of us with extreme myopia, anything over minus 10, is it a likely side effect that we will develop cataracts in our 40s or 50s? Or is it just coincidental that three people I know in this category have developed cataracts when they reached this age bracket. Or is it related to the fact that we all wore hard contact lenses for many years as young adults?
A further question occurs to me: Is there a family tendency for cataracts to occur? What can be done to prevent their development? Elizabeth East
A. Professor McGhee says that cataract surgery is the most common Operation of any kind performed on over 65's in the developed world. He says we were not designed to live as long as we do. After about 45, our lenses become less transparent. Poorly controlled diabetes can accelerate this, as can ultraviolet light. But ultimately anybody who lives long enough will develop cataracts. The wearing of hard contact lenses does not seem to have any bearing on cataract development.
McGhee says that wearing UV blocking sunglasses can delay cataract development, and even children should wear them. This will also protect against a growth on the surface of the eye known as pterygium (Kiwi surfies often develop this), and sun related tumours around the eye or on its surface.
The myopic or short sighted are also more likely to develop early cataracts, he says.
"The good news about myopia is that your brain size is related to your eye size and myopes have large eyes. The other good news is that myopes have, as a rule, a higher written IQ, tend to have more tertiary education and to be more successful in an academic or professional environment".
Myopia has a genetic element, but interestingly there is increasing evidence of an environmental one too. Doing a lot of close work may promote myopia. McGhee did not have any myopia until beginning microscopic ophthalmologic work in his late twenties.
The bad news about myopia is that you are likely to be poor at sport and more introspective. The worse news is that if your myopia is moderate or worse, for reasons still unclear, you are more prone to glaucoma, detached retina, early cataracts, and myopic macular degeneration. Injury can also cause early cataract, as can use of some medications. Irradiation through X rays and radiotherapy can accelerate cataract development.
For those tempted to delay their cataract surgery in case there is some fantastic new treatment just around the corner, McGhee is not encouraging. Extensive research work is being done on ways of delaying cataract development, on the grounds that slowing it until people are in their 80s would mean fewer operations.
"But that's not on the clinical horizon for at Least ten years."
In the meantime, cataract surgery as performed today is highly successful, providing improved vision for 95 to 98 per cent of patients. The complication rate is typically only one or two per cent.
Computer Glasses for Blurred Vision and Other CVS Symptoms By Wendy Strouse Watt, O.D.
This information was supplied by Macular Degeneration Support at
www.mdsupport.org. This is the conclusion of an article about Computer Vision syndrome, printed in the previous issue (February 2004 No 20). One printed copy is provided for personal use only.
Computer glasses are prescription glasses designed to be worn when working on a computer. They allow you to focus your eyes on a computer screen, which is at arms length, further away than the normal reading distance. There are other activities, such as playing the piano, tying flies, or shooting, that also require lenses that focus at a certain distance. These specialty glasses are designed to meet the patient's visual needs while performing the activity.
Computer work involves focusing the eyes at close distances. Computer monitors are often placed too close to the user because of space constraints or lack of understanding on how the eyes function while working on a computer. Some young people, whose near focal point are at around 16 inches, can compensate for the closeness of the monitor without significant eyestrain, but others who have focusing and binocular problems, uncorrected hyperopia (farsightedness), or uncorrected astigmatism, have significant eyestrain and symptoms.
Studies have shown that the constant effort needed to focus near objects and to sustain that focus can result in accommodative spasms, in which the focusing muscles lock into position and the eyes won't relax easily. This will lead to increased myopia (nearsightedness) or pseudo myopia (looking nearsighted when you aren't). Pseudo myopia is when you look up and it takes awhile to focus in, the eyes are locked in focus at near and won't relax easily. When the eyes are examined, they will accept nearsighted lenses, but when the eyes are dilated (the focusing muscles are relaxed and the true prescription is found) the patient is actually farsighted or requires significantly less nearsighted correction. If the cause of over focusing is not corrected, the pseudo myopia can become structuralized and the patient will truly become nearsighted and need to wear glasses full time.
By wearing glasses that are set for the computer working distance and decreasing the accommodative effort younger computer operators need to focus on the computer screen, permanent vision changes can be prevented. Even contact lens wearers may need to wear glasses over their contacts for computer use.
Starting around age forty, the ability to focus on closer objects decreases and books and newspapers have to be held farther away to bring them into clear focus. This is the first sign of the condition called presbyopia (the inability to focus up close). Another sign of presbyopia is that the ability to refocus quickly between near and far objects decreases. For a while, it is possible to compensate for these difficulties, then, all of a sudden, the person just cannot focus at near. Most people over forty require vision correction for reading or performing other near tasks. The most common correction that allows for near vision without compromising far vision is a bifocal lens. The bifocal lens has an upper part that allows clear vision at a distance and the lower part is for reading or viewing close objects.
The conventional bifocal correction (general purpose bifocals) is not recommended for working with a computer. Wearing bifocal glasses forces a computer user to tilt the head back and move closer to focus on the screen to see through the lower part of the bifocal lenses. Such a position can cause neck and shoulder pain, as well as back pain and headaches. In this situation, a lens that corrects at the intermediate distance (armslength, not near or far) is needed to adequately focus on the computer screen. Old and young alike experience blurred vision and eyestrain that arise from their correction or lack of correction, which adds to the fatiguing effects of Computer Vision Syndrome. Computer glasses can make a world of difference in your comfort while using a computer. Not only do they correct blurred vision, but they also relieve symptoms caused by struggling to focus, such as headaches, eyestrain, tired eyes, and burning. If you already wear regular glasses or reading glasses, you may be tempted to dismiss the need for computer glasses. Unfortunately, regular glasses are not right for computer work. Most people wear glasses that do not correct the intermediate zone (armslength). Reading glasses correct near vision only. Multifocals correct distance and near and even those that do correct the intermediate area, such as trifocals and progressive (no line bifocals), have only a small portion for the intermediate area, which is not nearly large enough for comfortable computer work.
Without appropriate eyeglasses, computer users end up with blurred vision, eyestrain and, often, headaches. Worse still, many people try to compensate for their blurred vision by leaning forward, or by tipping their head to look through the bottom portion of their glasses. Both of these actions can result in a sore neck, sore shoulders and a sore back.
Computer Lens Designs
Depending on the individual's vision and type of work, there are several options the type of lenses for computer glasses. Single vision, bifocal, trifocals, and progressive lenses are the main types of lenses prescribed for computer glasses. Most often, a separate pair of glasses is needed for computer work, in addition to the patient's dress glasses (general purpose glasses).
Single vision glasses provide the appropriate correction for the working distance between the screen and the computer user's eyes. This option allows users to have the same power the whole way across the lens and the whole screen can be seen with a minimum head movement. For presbyopic patients, the disadvantage of this option is that both distant objects and reading materials that are closer than the computer screen will appear blurry. When they look up, things at distance are blurry and when they want to read small print, they cannot pull things closer to see because the lenses only focus at armslength.
Bifocal glasses can be prescribed so that the focus of the upper part is set for the distance of the screen (armslength) and a lower area is set to focus at the regular reading distance. The disadvantage of this option is that distance is blurry. If distance viewing is desired, the computer bifocals must be removed and those who need a correction for distance will need to put on their regular glasses.
Trifocal lenses have the top part for distance, the bottom part for near vision, and a third for armslength (sits above the bottom part). The disadvantage of using trifocal lenses the small viewing area of the trifocal and the need for head movement.
Progressive lenses have basically three distances of focus as a trifocal, but there are an infinite number of focus points in between each of them. The disadvantage of progressive lenses is the distortion in peripheral vision (where they eliminate the lines), a small intermediate area, and a lot of head movement is required to use the lenses.
Occupational lenses or readables (the Sola Access lens or the Zeiss R lenses) that are a modified type of progressive lenses work the best for presbyopic computer users. They have three different zones of vision. The center is the largest and focuses the computer distance. If the chin is raised slightly and reading material is pulled closer, there is a comfortable power at the bottom for smaller print and focuses at the regular reading distance. If the head is dropped and the patient looks out through the top, the lens focuses out to about 10 feet, room type vision. They do not have the lines blurred out and there is no distortion off the side. They address all of the disadvantages of the other types of lenses and are the most functional lenses. Most people working on computers need to focus at many distances for other tasks while doing their work. They are not intended for driving because they do not have a true distance focus in the lens. Distance viewing would require removal of the computer glasses and looking at distance without glasses or with the general use glasses.
If two pairs of glasses are not an option, there are clip on magnifiers available that clip on like clip on sunglasses. Also, there are frames available that have a magnetic sunclip. It is possible to buy a second clip that has the armslength correction in it to focus on the computer. Caution should be used concerning buying ready made magnifying or reading glasses off the rack in stores to use as computer glasses. The perceived advantage of buying off the rack is price. The problem is that they are single vision lenses (they correct the vision at only one distance), the correction is exactly the same in each eye (few people have the exact same correction in each eye), and there is no option available for prism, a tint, a UV coating, and an anti reflective coating.
There is no one type of computer glasses that fits all or is the best for everybody. Visual ability, personal preferences of the computer user, the type of work, the distance between the computer user's eyes and the monitor, and lighting in the workplace are all factors that should be taken into consideration when selecting and prescribing computer glasses. Each of the options listed above can be beneficial for computer users, if properly fitted and corrected maximally. It is very important that the selection of computer glasses is made based on consultation with an eye doctor (optometrist or ophthalmologist) who is knowledgeable in Computer Vision Syndrome.
Added Options for Lenses that Further Decrease CVS
A computer tint is used to decrease the amount your eyes have to focus on the characters on the screen. Lens tints provide added comfort for some computer users. Tints affect the perceived brightness and color of the computer screen. They also filter out the unwanted effects of certain colors (blues in fluorescent lighting) which have been known to cause discomfort and eyestrain for computer users. The most common tints used are beige (the PRIO tint), gray, and pink.
Most daylight or cool white fluorescent bulbs emit harsh, short wavelength light. This blue light is difficult for the human eye to focus due to its scattering characteristics. Improper lighting can account for up to 30% of the visual symptoms computer users experience. So, adding an Ultraviolet (UV) coating would eliminate at most of the blue component light. Most of the lens options discussed above come in polycarbonate (a light weight lens material) that has a built in UV coat.
Anti reflective (AR) coating cuts down glare coming from the computer screen, overhead lights, and windows that cause over focusing, eyestrain and headaches. The AR Coat has a scratch coating. No lens is scratch proof, but this extends the life and quality of the lens.
Prism is an additional type of correction for eyes that are not working together as a team. When your eyes work independently of each other, you suffer eyestrain from trying to focus and prism can alleviate this problem. If your eyes do not work together because of vision loss due to a retinal problem (macular degeneration, Stargardt's disease, etc.), prism can move your vision more straight ahead and allow the two eyes work better together and will reduce eyestrain.
Vision Impairment No Barrier During Eight Days on Outward Bound Course as Dunedin Women Meet the Challenge
By Jane Dennis, 23 March 2004. (Reprinted courtesy of "The Star" Dunedin)
Two visually impaired women achieve a dream they never thought possible, tackling an outdoor adventure unseen. Earlier this month Leanne McCraw and Lynn Keogh, along with 10 other members of the Royal New Zealand Foundation of the Blind, experienced an eight day course at Anakiwa, in the Marlborough Sounds.
For the women it was a time to build confidence in tackling the unknown and forming friendships. Miss McCraw , a university student, said the course had taught her more about herself and others.
Mrs Keogh was amazed how motivated it made her. "I was on cloud nine the whole time," Mrs Keogh said. It also made you realise that anything is possible.
It was the first course for the blind and vision impaired run by Outward Bound, with the support of CallSouth. "The feedback has been wonderful," recreation advisor and pair support co ordinator Marina Hanger said. "The plan is now to organise an outdoor experience every couple of years." The participants, from throughout the South Island and aged from 18 to more than 50, were tested in rock climbing, bush walks, camping, sailing and kayaking.
Mrs Keogh, who is in her 50's, has suffered from poor eyesight since 11. In the past few years her vision has deteriorated to the point she no longer has central vision. However, with a supportive husband, she wants to live life to the full. "I was really excited and chuffed to be chosen on Outward Bound. Although I was nervous I was determined to succeed," Keogh said. "Without sight your other senses kick in and take over. Your sense of touch and smell all comes into focus," she said. “Being on the course you learned to trust and encourage one another. There is no such word as 'can't' on Outward Bound." Miss McCraw, who wears focal lenses to correct her vision, was not as impaired as some on the course, but had to take care when walking on uneven ground.
To prepare for the course, the members of the group had to be able to swim 20m and run 3km under 25 minutes. "At times I was tested," Miss McCraw said. "We had to do four climbs and on the second one I was blindfolded to get an idea of how others felt." It was also time for members of the group to do some soul searching, to talk about their loss of vision and the realisation that they are not alone. Other times there was the feeling of escapism," Mrs Keogh said "One of the highlights of the trip for me was sailing out at sea. I felt a sense of freedom as it was so peaceful and calm. We arrived not knowing each other and left as a united team" she said.
Photo: Lynn Keogh lends a helping to Travis before going sailing.
Lack of Sight No Barrier for this Blind Adventurer
By June Ombler
Ian Cunningham (68) made a ten day New Zealand stopover in April, meeting Retina members in Auckland, Wellington and Christchurch on his round the world holiday trip from the UK, stopping off at San Francisco and Fiji on his way. His main reason for this trip was to visit old friends of some 50 years who now live in Melbourne and Newcastle, NSW. They all originated from his home village of Tighnabruaich, situated near the Firth of Clyde and overlooking the Isle of Bute in Argyll, Scotland. He will then continue to Port Elizabeth in South Africa before returning home to the UK, having been "on the road" for about three months.
When I met him Ian told me he had worked in the shipping, forwarding and household removals business until he retired. This gave him the incentive to visit some of the places he knew about in other parts of the world. He has made six exciting and testing sponsored adventures so far to raise money for the Guide Dog Society of Britain and has raised nearly $30,000 by his efforts to date.
At the age of 11 Ian Cunningham found out that he had poor eyesight. "I was diagnosed with Retinitis Pigmentosa (RP)," he said. "Then in 1971 I was registered as being legally blind and a couple of years later was re diagnosed as having Choroideremia, one of the rarer RP diseases". "At present I can see light and shadows as contrast and I wear blue blocking glasses to cut down the remaining glare" he explained.
Photo: Ian Cunningham with his guide dog Oak, a pure bred golden retriever.
His first sponsored trip was to Mount Sinai, which has religious significance for Islam, Christians and Jews. Ian's party walked across the desert for a week, sleeping out on the desert floor in sleeping bags under the star filled sky by night. The temperature was in the thirties centigrade but he found it quite tolerable, as it was a dry heat. The walk was arduous as it took them over mountain ridges as well as across flat, scrub covered desert. They were supported by a camel train which carried their drinking water and supplies, the camels surviving on the green tips of the dry looking shrubs. "I found the Bedouin people to be very friendly and welcoming," he remarked. "Climbing Mount Sinai was an experience as the last four hundred feet is a series of uneven steps, which varied in size and height and there were substantial drops on one side or the other at intervals and no handrails to help guide the way". "Coming down was even more dangerous as we had to pass the many pilgrims coming up".
In 2000 Ian undertook a tandem bike ride of several hundred miles across Cuba behind his friend and sighted guide. "The Cuban people were very welcoming and friendly and I was impressed by their ability to re think and re cycle just about everything in this poor third world country", he said.
Ian Cunningham's next adventure was to ride a horse across the plains of Mongolia with wonderfully skilled Mongolian horsemen. On the way his party were invited into their homes, called 'ghers'. These are round and can be totally dismantled so that they can be carried on carts to the next grazing ground for their animals. On the way Ian discovered that one must never ask a Mongolian how many horses he possesses. This is like asking a Westerner how much money he has in the bank!
Ian's latest trip to raise money for Guide Dogs was in Africa. This time he joined a group of 16, three of whom were sight impaired. This was a white water rafting expedition down the Zambesi River, which has approximately six times the volume of water flowing down it as the Colorado River in the USA. They began at the foot of the Victoria Falls and rafted straight down the river gorge through some of the world's finest white water for rafting. They rafted for a week, with no possibility of turning back as it is too steep and narrow and without roads. Some of the rapids were so dangerous that they could not attempt them and had to carry their rafts around the rocks.
At night they all slept in tents on the sandy beaches of the river flats, as at that time of year the river was reasonably low. These beaches were set back and quite high above the river water. They were warned not to go to the water's edge after dark because crocodiles often came out of the river and slept there! Further down the river out of the gorge the cliffs diminished and they were subjected to angry tirades from baboons. In the occasional slack water they watched crocodiles [some of them were up to 16 feet long] basking in the sun. Still further down, where the river widened considerably, they had to beware of the hippos which tended to attack if one got too close to them and their young. "I was told that hippos kill more people in Africa than any other animal", Ian said.
Back in his Scottish home village Ian's companion and inspiration, Oak, his guide dog, is being cared for by a neighbour. Ian acquired Oak when he was 21 months old. "Oak is a pure bred golden retriever who has been my companion for the past 12 years, and although he is now old enough to retire, I will not get another guide dog in his lifetime". "I feel I owe him this as he has been so faithful to me and deserves my full attention during his lifetime," he concluded.
On Friday May 30 Retina NZ held a meeting in Auckland. This was the first
such Auckland branch meeting for some years. Members were invited by mail
out and by email. And around 50 people turned out to hear speakers Harris
Rosensweig, manager of adaptive technology at the RNZFB, and Auckland
ophthalmologist and long time Retina member Dr Dianne Sharp.
Over the course of the evening members had a chance to share a glass of
wine and a sandwich with the speakers, the Retina executive and each other.
Several volunteered to help with the organizing of future activities. It
is not necessary to attend committee meetings to help out so if you are
interested please phone Camille on 378 7553.
A summary of the talks that evening will be included in the August
From Kaye Newton
We had a very successful AGM on Saturday 24th April with about 35 people
there. The committee remains intact with Kaye Newton, Chairperson; Jean
Asgarkhani, Vice Chairperson; Pip Burrell, Secretary; Peter McGlinchey,
editor; and Petronella Spicer. Jane Scott and Verna Simpson also provide
valuable support to the committee.
Dr Jim Borthwick spoke for an hour about Age related macular degeneration
during which time he answered many questions. He also stayed for our
refreshments when people were able to discuss more issues, particularly
relating to other eye conditions. The main message I took from the talk
was to keep eating plenty of fruit and veges, especially those dark greens,
and for people to stay in touch with their eye professional to monitor
I hope the newcomers enjoyed meeting the rest of us and we look forward to
seeing all those people back again in September.
The Kapiti Support Group has given themselves the name of Kapiti VIPs (Visually Impaired Persons). They held their first meeting in February. At this meeting they decided to have monthly meetings on the third Monday of the month in the Kapiti Community Centre at 2.00 pm. Two further meetings have been held since then. The average number attending has been around 20. A warm welcome will be extended to anyone else with a visual impairment living on the Kapiti Coast, who would like to join this group for mutual support. For details about the next meeting please contact Gael Hambrook (04) 904 3575 or Heather Tofts (04)
Manawatu Support Group
Following an inaugural meeting last November, the Manawatu Support Group held its first quarterly meeting in the centre of Palmerston North on Tuesday 20 April 2004. This meeting was attended by 10 visually impaired people. Seven were not yet eligible for membership of RNZFB. It was agreed that future meetings would be held once a quarter on a Tuesday starting at 1.00 pm. If you would like to be invited to the next meeting, and did not receive an invitation to the April meeting, please contact Mr Alex Thompson (06) 356 9611.
I wish to advise all members of the Otago/Southland branch that the Annual General Meeting is to be held on Saturday 12 June commencing at 1 pm. Guest speakers are Marina Hanger who will speak on Recreation and Leisure activities and Lynn Keogh will speak on her recent experience at Outward Bound.
All welcome, RSVP to Lynn Keogh by telephone (03) 488 1340 or email firstname.lastname@example.org by Thursday 10 June.
EDITOR's NOTE: Thank you to all those who responded to our request to let us know what you liked and did not like about our new format newsletter. The vast majority of respondents thought it much easier to read. We print below email and postal comments from you. We also had many phone replies which were not recorded, all favourable. So it looks as if our Executive may decide to make this trial permanent from now on.
FROM: June Brash, Andersons Bay, Dunedin.
I do like the new layout including the two columns but I think the print is too heavy or thick, the size is good. I have compared the new one with previous newsletters and find the leaflets from Retina NZ, for example Coping Strategies and Supporting People with Retinal Disorders are better for me.
FROM: Celia Whitworth, Katikati.
I think the new format and typeset of the newsletter are a vast improvement on the old, much easier to read. I also would like to thank everyone at Retina NZ for all the hard work they do in gathering all the international research. Their efforts are much appreciated by me.
FROM: Mrs Doreen Gibson, Howick, Auckland.
Thank you for the Summer Newsletter (my first from you). I was impressed with the bold characters (type). It is certainly easier for me to read than a
newspaper quite blurry. The articles were interesting and informative.
At age 82 I am just starting to use a computer. Good advice to rest the eyes every 10 15 minutes, as I will probably use it for letter writing.
FROM: Muriel Hancock, New Plymouth
I very much enjoy reading the Retina Magazine. It has valuable information and it helps to understand RP and what is going on.
FROM: Daphne Terpstra, Christchurch
I would like to order a print copy of the Summer newsletter. I already have the email version but it does seem to be possible to have both. Hope I am right in this assumption excellent production full of information and congratulations to the Society on the establishment of the peer phone line. I am particularly impressed that this part of the Blind Foundation's service is available to those who do not qualify as members but who have significant failing sight. I was in this position two years ago and found it a very difficult period in my life. Best wishes for more productions.
FROM: Jillian Mills, RNZFB Director and member of Feilding
Thank you to you and your team for your most informative newsletter. I learnt more about the devastating eye condition called Retinitis Pigmentosa. I was also most interested to read about ways of helping to delay macular degeneration [eg. Veges and fruit choices] and problems related with computer use. I think I have some of these most helpful!!! Keep up the great work.
FROM: John and Sally Ferguson, Epsom, Auckland.
..... John and I both wanted to comment on the new layout for the Newsletter. We think it is very good John found it easier to read and I think the two columns look very nice.
FROM: Patricia Williams, Auckland
I receive the Retina NZ newsletter. I think it is an excellent print and layout. It is very easy to read and I cannot find any faults in it at all. It is very clear, informative and helpful to me.
FROM: E. Kleyn, Trentham, Upper Hutt
Just letting you know I found the new style newsletter much easier to read.
..... I wish you all the best in 2004.
RETINA NEW ZEALAND SEEKS NEW EDITOR
Retina New Zealand seeks the services of a newsletter editor for its
quarterly publication (readership 500). Your audience will include people
with retinal dystrophies, their families, ophthalmology and optometry
professionals and rehabilitation providers. The content of the newsletter
will include scientific and ophthalmology research news, strategies for
coping with sight impairments, Retina New Zealand activities and items of
general interest to the RNZ community such as profiles of our members.
The editor will ideally be proficient at MS Word and internet applications,
can work to timelines, and can compile and write accurately and concisely.
An interest in scientific and medical research would be an advantage, along
with a knowledge of the blindness community. An honorarium will be
negotiated with the successful candidate.
Expressions of interest including a brief covering letter and CV should be
sent to: Janet Palmer
Fax 04 472 9490