Retina NZ Inc

 

August 2005 Winter Newsletter, No. 26.

 

In this issue:

 

1        Editorial

2        From the Retina NZ President's Desk

3        Diabetic Retinopathy

4        Research – Damaged Gene in NZ family Identified

5        RNZFB Guide Dogs

6        Being Blind - Six Years On by Camille Guy

7        Coping – Watching TV with Low Vision

8        Letter to the Editor

9        Book Reviews

10   Branch News

11   Notices

 

 

1     From the Editor

 

Many of you will have family and friends in London whose lives have been affected by the bombings.  I had lunch recently with a friend whose son had arrived in London from New Zealand the day before the bombings.  She described her fear at not knowing, of frantically attempting to make contact, and staying up most of the night hoping he would ring.  A text message the following morning told her he had been evacuated from a train following the one bombed at Edgeware Rd Station.  Her fear, a week later, was still very obvious.

 

In June I spent a day at the National Agricultural Fieldays at Mystery Creek working on the stand for Bayley's, the guide dog sponsors.  It was wonderful to meet so many people and be able to talk to them about the independence and joy that having a guide dog brings.  The general lack of knowledge about the breeding, training, and use of guide dogs inspired me to ask staff members at Guide Dog Services to write a series of articles about the training and use of a guide dog.  The first two of these articles appear in this newsletter, the third will be published in the November newsletter.

 

In this newsletter we have an article written by Camille Guy about her journey coping with blindness, and Marion Maw reports on some exciting new research being undertaken here in New Zealand.  I have included some information and research on diabetic retinopathy which has become one of the most common eye conditions requiring treatment.  The book review section is proving popular.

 

I attended a RNZFB forum meeting in Hamilton where issues of importance to members of the Foundation were discussed with the CEO Paula Daye, and the Chairman of the Board, Don McKenzie. Employment was the focus of a talk given by Chris Inglis of the Blindness Awareness and Prevention Division.  The Foundation, in conjunction with the Body Shop, ran a 'beauty' afternoon for women members in Hamilton.  Making new friends and sharing our experiences of visual impairment and blindness was as important as trying out the various products on offer.

 

I received the news in late June that I have been awarded my Masters Degree with Distinction, a huge thrill for me. By the time you receive this newsletter I will have moved into my new home and the stress I am experiencing having to make a multitude of choices will have become a distant memory.  I am excited at the prospect of planning and developing a brand new garden with lots of roses and other flowers.

 

Susan Mellsopp/Editor

Ph: 07  8533  612

Email:  editor@retina.org.nz  

My new address is:  108B Comries Rd, Chartwell, Hamilton  

 

 

2     From the President's Desk

 

With organisation for the conference well in hand, we are looking forward to catching up with some of you on the 27th August.  A lot of hard work has gone into producing the telephone peer support manual and the training to be carried out on the Sunday following the conference.  Elizabeth East, the National peer support co-ordinator has been responsible for collating the information, but we have had help and input from many other organisations and people, such as RNZFB, NZ Association of Optometrists and other individuals.  Some funding was received from AMD Alliance International to help towards training some MD peer supporters.

 

I had a look at the list of honorary members that the society has.  Many of these people will be at the Auckland conference.  Our hononary members are Dr Dianne Sharp, Dr Mike Dention, Dr Marion Maw, June Ombler, Veronica Liggett and Sally Ferugson.

 

Janet Palmer (our secretary) has been without her computer for nearly a month while it is getting fixed.  Instead of emailing all the time, we have had to resort to good old-fashioned phone calls and sending documents by post.  In some ways it is not such a bad thing to slow things down a bit even though it is less efficient.  It is amazing really, that the email communications do not cost anything to send as well as being instant, and so easy to copy to others at the same time.

 

We don't always realise that our eye condition affects other people around us too.  We think we are the ones who have to put up with it, but others have to put up with us too.  Recently, I got told by a work colleague that I need to wear a cow bell.  It was said jokingly (and not in front of anybody else), but made me realise that the others do try to keep out of my way when  they see me coming.  I haven't learned to slow down yet, so when I charge out of my office, as I do many times a day to go to the printer and photocopier etc., I don't remember to pause to check to see if anyone is already on my path.  I need retraining to look right-left-right before stepping out.  Outside in the city I still have to remind myself to go to the corner to the traffic lights, not cross the streets jaywalking as I have done all my life.  Some risks become no longer worth it.

 

Susan Mellsopp, our editor has achieved her Masters degree with distinction.  A wonderful achievement when the thesis was disrupted more than once by eye surgery and general sight deterioration.

 

A reminder that we welcome feedback.  We need you to tell us how we are doing and contributions for the newsletter are welcome.

 

Kaye Newton

Ph:  03 3795 807

Email:  president@retina.org.nz

 

 

3     Diabetic Retinopathy

 

Retinopathy does not usually occur unless diabetes mellitus has been present for many years.  A large amount of glucose in the blood increases the optical density of the eye's lens causing myopia and blurred distance vision.  Fluctuations in vision may be the very first indication of diabetes.

 

Diabetic retinopathy occurs in stages.  Background Retinopathy is the early stage of diabetic retinopathy in which edema (swelling) is present in the macular area.  The retina contains what appear to be tiny dots at or near the small blood vessels.  The smallest of the dots are micro‑aneurisms, bulges due to weakness in vessel walls.  The larger dots are tiny haemorrhages, and there may be yellowish spots called exudates.

 

Proliferative Retinopathy eventually develops in a small percentage of eyes having background retinopathy.  Newly formed blood vessels on the surface of the retina and the optic nerve head are likely to bleed into the vitreous humor.  This causes a pulling of the retinal tissue away from the vitreous, possibly causing a severe loss of vision.

 

In the early stages of background retinopathy there may be no symptoms at all.  However, in proliferative retinopathy, the presence of widespread retinal haemorrhages may cause severe disturbances in the vision.  The person may notice 'something red' in front of one eye:  this is the blood which has seeped into the space between the retina and the vitreous humor.

 

Annual retinal examinations are advised for anyone who is known to have diabetes.  The only known way of preventing diabetic retinopathy is to prevent diabetes mellitus of which the major risk factor is obesity.  Diabetic retinopathy has increased to such an extent that it may soon equal macular degeneration as the most frequent cause of age‑related vision loss.

The above information was extracted from Vision After 50: Preventing Age‑Related Vision Loss with the kind permission of the author Theodore Grovensor.  Further information on purchasing this book can be obtained by contacting the Editor.           

 

 

Diabetic Retinopathy:  Current Research

 

Retinal blood flow and oxygenation of the retina is currently being studied by Dr Bahram Khoobeni.  He is attempting to develop a practical system for evaluating oxygen saturation in the retina and optic nerve head using a recent innovation, hyperspectral imaging.  Dr Khoobeni's research utilises imaging of fluorescing blood cells to measure the velocity and volume of blood flow in the vessels of the retina.  There is great potential for the clinical application of this innovative technology in the early diagnosis of and monitoring of therapy for diabetic retinopathy, arterial venous occlusion disease, and glaucoma;  all of which can eventually lead to loss of vision.

 

Another researcher, Dr Hilary Thompson, is developing a computer‑assisted management model of ophthalmic image data for medical decision support in diabetic retinopathy.  Using this system images of patients' retinas can be transmitted from remote locations to be evaluated by specialists.  This allows them to make informed decisions about the need for immediate versus future intervention to prevent disease progression and blindness. In addition to the data transmission function, computer‑aided detection of features can signal the need for physician attention as well as integration of family and patient history data.  This would provide a medical‑record like database capable of automated risk assessment to determine which patients are at the highest risk of onset or progression of diabetic retinopathy.  In the future this approach may also be adapted for the diagnosis and monitoring of other ophthalmic diseases such as glaucoma.   

 

Sourced from the LSU Health Sciences Centre in New Orleans at www.lsu‑eye.lsuhsc.edu/Research/diabeticretinopathy

 

Diabetic Retinopathy Research

 

Multiple Insulin Injections Versus Twice

By David Kinshuck:  Ophthalmologist

 

Multiple dose insulin injection treatment (MDI), also called flexible insulin regime or basal bolus regime, is far superior to twice daily insulin in preventing diabetic retinopathy.  At present the evidence is very convincing.

 

Many people in the UK are using twice daily insulin treatment. They have three times the chance of developing retinopathy, renal failure, and neuropathy, compared to patients using MDI.  If you are using MDI you will need to test your sugar and adjust your insulin dose to achieve good control.

Recommendations are changing, it is believed that twice daily insulin injections should be reserved only for patients with disabilities or very ill from diabetes when tight diabetic control may be harmful.  This is for both type 1 and type 2 patients.  There are a percentage of patients with type 2 diabetes who can be very well controlled with a twice daily insulin mixture.

 

Downloaded from www.medweb.bham.ac.uk

 

 

 

 

 

 

 

4     Research

 

Damaged gene identified in New Zealand family with novel retinal disorder

By Dr Marion Maw

 

A major breakthrough has been made in understanding a severe X‑linked retinal disorder that affects a large New Zealand family

 

The inherited eye condition has been in the family for at least five generations and causes vision impairment in both males and females, but is most severe in male family members.  In addition, some male children have intellectual disability and autism.

 

The multi‑disciplinary research that led to these new insights was done in partnership with a large North Island whanau.  The research involved collaboration between ophthalmologists in Auckland, molecular geneticists in Dunedin and biophysicists in Austria.  Patricia Lundon‑Treweek, a member of the whanau and co‑author on the study, is herself affected by the disorder.  Two of her three children have inherited the condition.  She played a key role in the partnership between the whanau, clinicians and researchers.

 

Dr Carolyn Hope, previously a Clinical Senior Lecturer with Auckland University Department of Ophthalmology, is the Visiting Consultant Ophthalmologist for the Blind and Low Vision Education Network New Zealand (BLENNZ), Homai Campus, and Consultant Ophthalmologist at the Manukau Superclinic, Middlemore Hospital in South Auckland.  Dr Hope, through her work at Homai School, recognised the family had a novel disorder that was of considerable research interest.  Clinical examinations by Dr Hope and her colleagues Dr Dianne Sharp (Auckland Hospital) and Assoc. Prof Gillian Clover (University of Auckland) revealed an eye disorder similar to, but distinct from, X‑linked incomplete congenital stationary night blindness.  These findings were recently published in the international Australian and New Zealand Journal of Ophthalmology, Clinical and Experimental Ophthalmology.

 

In addition to undergoing eye examinations, family members agreed to Dr Carolyn Hope collecting blood samples for genetic analyses by Dr Marion Maw's team at the University of Otago.  Student Ariana Hemara‑Wahanui identified a subtle alteration in the calcium channel gene in 2000 during research for her MSc thesis. Dr Maw then formed a collaboration with Prof Hering at the Institute of Toxicology and Pharmacology in Vienna.  His team demonstrated that the subtle alteration in the calcium channel has profound effects on channel function.  These findings were published in the prestigious international journal, Proceedings of the National Academy of Sciences, USA.

 

This particular calcium channel is found in the light‑sensing cells of the eye.  It is part of a signalling pathway that converts light stimuli into nerve messages to the brain.  Normally entry of calcium via this channel is tightly regulated but the damaged channel is hyperactive.

 

Molecular geneticist, Dr Marion Maw, says it is not surprising that vision is impaired in family members.

 

"The healthy version of this calcium channel lets calcium enter the light‑sensing cells of the eye during darkness.  The damaged channel is hyperactive and probably lets calcium enter the cells regardless of whether it is dark or light.

 

Other forms of damage to this same gene cause a clinically related form of visual impairment called X‑linked incomplete congenital stationary night blindness," she says.

 

The association of abnormal calcium channel activity with intellectual impairment and autism intrigues the researchers.

 

"We wondered if the association was a coincidence, but a recent study suggests otherwise.  Researchers in New York have shown that Timothy Syndrome, a multi‑system disorder including autism and intellectual impairment, is caused by damage to a different calcium channel gene.  Moreover the damaged channel again permits excess calcium to enter cells," Dr Maw says.

 

The Health Research Council and Lottery Grants Board provided the major funding for the genetic and clinical research.  In addition, Ariana Hemara‑Wahanui was supported in her MSc studies by grants from several Maori trust boards, the University of Otago, and the Ministry of Science, Research and Technology.

 

The project has been running since 1998, but the work is by no means complete.  "We still need to find out precisely how the damaged channel causes each of the clinical symptoms.  In current work, Retina Australia have funded generation of a genetically‑engineered mouse model for the disorder and generation of reagents to enable detection of the calcium channel while the University of Otago has funded investigation of the role of calcium channels in the pineal gland" said Dr Maw.

 

 

5      RNZFB Guide Dogs

 

Guide Dog Breeding Services

By Lauren Elgie

 

The Guide Dog Services Breeding Facility is where many of the guide dog puppies lives begin.  95% of the puppies that eventually enter the Puppy Development Program are born and raised on site at the guide dog breeding centre.

 

The breeding services program and staff make sure that our breeding stock (21 brood bitches and 12 stud dogs) are kept in optimum condition so that they can produce and rear guide dog litters extremely well.  All of the guide dog breeding stock are owned by GDS but live in family homes around the Auckland area. When our requirements determine that a dog is required to produce a litter they come and reside at the breeding centre where they can receive optimum monitoring and care from the GDS staff.

 

The dam of the litter (Mum) delivers her pups in a specially designed 'whelping room' and then raises her pups in a private, quiet room for the first 3 weeks. 

 

Between 3 and 7 weeks of age the puppies are progressively introduced to new things so that they have a well rounded experience with excellent socializing opportunities.  They are gradually introduced to a range of sounds that they may encounter in their guide dog lives, as well as the coats and collars which they are required to wear on the Puppy development Program. Puppies are encouraged to cope with being separated from their litter mates so that their confidence increases as individuals and they learn good settling behaviour when they are alone.

 

Because the breeding centre is organized like a lounge room in your home, the puppies get to experience the vacuum cleaner, television, stereo, banging of bowls at wash up time, as well as large dogs outside, cars coming and going, hoses and lawn mowers.

 

During their time in the breeding centre the puppies health and nutrition is very important and great lengths are taken to ensure that the pups enter the outside world in the best possible condition.  They have so many new things to experience in the environments they are entering that their little bodies need to be strong to handle the pace!

 

When it is time for the pups to be placed in new homes to be raised, the breeding centre staff passes on any observations or aspects of the puppy's temperament which might help to ensure that the puppy is placed with the most suitable person.

 

 

Puppy Walking

By Paula Gemmell

 

Our puppies are all placed (generally at around 7 weeks of age) in homes with wonderful volunteers that we call 'puppy walkers'.  These are people that give up their home and time to socialize our future Guide Dogs.

 

It is not an easy task and some people even think that our puppies are perfect guide dogs at 7 weeks of age - but they are sadly mistaken.

 

Some of the early things that puppy walkers 'teach' the puppy

are - their name, wearing a collar, toileting on command and sleeping through the night.  There is a lot to take in for a young puppy's new environment, new handlers, no littermates around and of course wearing their little red puppy coat.  This coat, clearly identifies that they are a 'Guide Dog Puppy in Training', and allows them access into most public places - just like a Guide Dog.

 

Puppy walkers are expected to fulfil many requirements while they have the puppy.  Puppy Development representatives (from Guide Dog Services) visit regularly (every 2 - 4 weeks) and observe the puppy and walker in a variety of different environments, everywhere from the city to the country, on public transport and at night.  As we don't know how each dog will go in training and where they will eventually work, we try to expose the puppy to as many different environments as possible.

 

Our purpose built kennel facility is used to house the puppies for kennel breaks or stays.  This is important as they must get used to being in this environment prior to them entering their assessment and training stage. 

 

The pups are assessed regularly for their potential to fulfil the guiding role.  This involves not only looking at their general temperament - soundness, willingness, confidence, but also their health.  We do our best to ensure all puppies that come off the puppy development programme are in the best

shape - both physical and mental, to enter training.

 

Of course one of the hardest things about being a puppy walker is giving them back at about 12 months of age.  Many people say that they finally think they have a well mannered, easy going dog in the house and then it leaves to start training.  Of course we always try to offer them another puppy to replace the one they have just lost - but for some people once is enough.

 

All at Guide Dog Services value and appreciate the work that our puppy walkers do with the pups, and we know that we wouldn't have the success that we do without them making this huge commitment.

 

 

6.     Being Blind:  Six Years On

By Camille Guy

 

Like many Retina members I see the world as though through ill focusing spectacles that have been smeared with vaseline and dusted with ash.  On a good day it doesn't matter but on a bad one I have been known to thump some inanimate object.

 

My sight loss began six years ago, suddenly and unexpectedly. Having worn increasingly thick spectacles since the age of seven, I was a high myope.  A small minority of us develop macular degeneration in middle age.  While only one eye was affected I coped well.  But within 18 months the second had begun haemorrhaging and I rapidly lost most of my central vision..

I embarked on the roller coaster ride of adjustment to sight loss.

 

My eye doctor did all that could be done.  She put a newly approved drug into my blood vessels and repeatedly cold lasered the leaking ones in my retina.  Some peripheral vision, blurred, colourless and shadowy, was salvaged. 

 

It is hard to explain this particular form of sight loss to those who have not experienced it and I can understand why casual observers are sceptical.  High contrast helps a lot, so I can see a tiny piece of lint on a dark carpet or road markings in bright sunlight.  But I often go to stroke the cat only to discover it is a dark jersey left on the sofa.  I cannot recognize my son when he enters the room. 

 

I have a friend with a quite different eye disorder, who is legally blind, but so far can still read through a tiny tunnel of vision.  She is too embarrassed to carry the white cane she needs, since people who see her reading might judge her a fraud.

 

In fact the bulk of the 11,500 members of the RNZFB don't fit the blind stereotype at all.  Only 300 have guide dogs and the same number can read a book in Braille.  Only six per cent of the membership is totally blind.  But as many of those losing sight discover, criteria for membership are strict.

 

To get a handle on that, there are hundreds, perhaps thousands, of New Zealanders in the process of losing sight.  They are too sight impaired to hold a driver's license, but are not yet eligible for Foundation membership or the kind of assistance that might allow them to continue to hold down their jobs.

 

While my sight was still deteriorating, I tried to find out all I could about how others had coped with sight loss.  Often their autobiographies were curiously discreet about the awful transition.  One minute the authors could see and the next they were busy adjusting to the fact that they could not.  I was ready enough to concede that most people would be pluckier than me, but really, was the adjustment that trauma free?

 

Now that I have met and talked with dozens of blindies, I think the answer is no.  Going blind is tough.  There is not a day that passes that I don't feel some grief about it.  I miss eye contact, facial expressions, and seeing the natural world in all its glorious colour and detail.  I was not surprised to learn that depression is closely linked to macular degeneration.

 

But on a good day I hardly think about my sight loss.  I can see enough to make a decent cup of espresso coffee.  I can tell somehow that the tui are enjoying the blossom on the flowering cherry.  When the cat lies on my chest and purrs I don't need to be able to see his face. 

 

Most of my pleasures have had to become non‑visual ones.  If I spend the day at the computer, ignoring the screen and working almost entirely by sound, I am unbothered by sight loss.  Listening to music or the radio is just as satisfying as ever. I still love camping and spending time in the surf.  That I still enjoy gardening puzzles me.  I can spend a day weeding by touch and feel satisfaction at just knowing it all looks better, even though I cannot see the results.

 

Perhaps the most depressing thing about sight loss is that sense of having lost one's tenuous grip on life.  My life was always less ordered than I would have liked, but I muddled through in a way that is no longer so easy.  I have had to become way more organized, and settle for life in the slow lane.  Although I can now do most things without help, it is of course way quicker to enlist the help of sighted friends or family.

 

That raises the dreaded issue of dependency.  I am sure most of the stigma about disability is to do with our fear that the disabled will slow us down.  Those who can bound through life don't want to revert to crawling.  Of course all of those of us who live long enough will eventually experience some dependency.  Those stricken with sudden blindness or deafness or paralysis just have to deal with it earlier.  And mighty tricky it is too.

 

It works better in some families.  Looking after sweet old mum who has devoted her life to others may not be such a sacrifice.  I met one recently blind woman who told me her family would not allow her to go out alone.

 

It is not like that at our place, nor would I want it to be.  My initial reaction to sight loss was to want others to act as my eyes.   That does not mean describe the sunset.  It meant find me stuff in the pantry, yell out when steps approached, and explain the range of pasta in the supermarket.  My demands were impossible.

 

Over the first year several wonderful friends would visit regularly and help me deal with whatever was frustrating me most.  Not all who offered were up to this.  One friend offered to read, then declined to read the particular article I wanted because it was in a magazine that was "too right wing".   Another took me to the supermarket then remonstrated that the cheese I wanted to buy was too expensive.  On a good day this amused me but such unwitting gate keeping can be the bane of the disabled (or, it slowly dawned on me, the dependent elderly) life. 

 

Fortunately there are visual aids and adaptive computer technology that can make even the most blind of us almost entirely independent again.  It takes time to learn about them. It takes patience and sometimes money to acquire and learn how to use them.  It can all be done and age is no real barrier.  

 

As I write this, I have just returned home from seeing a film festival movie.  I took the bus into the city, found the theatre, negotiated the stairs and bought my ticket.  An usher did help me find my seat, all alone in the front row.  I had chosen the film carefully, asking friends to scan the festival programme for me so that I could extract those movies that were in English with no subtitles.

 

I loved this particular movie.  Afterwards I found my way to an unfamiliar cafe and had coffee.  I did not eat since I could not see what was on offer and anyway, I need to lose weight.  Finding the bus stop for my return journey was slightly challenging, especially since the three people I asked for directions all turned out to be Asian and have as little idea as I had.   On the bus trip home I listened to radio on my walkman.

 

Like my life over the past six or seven years this was an outing of highs and lows.  The bad moments were those when I felt lost and confused.  When I had to locate a stranger, somebody I could not really see and ask for help, I would feel momentarily sorry for myself.  But six years on my roller coaster ride enjoys more highs than lows.  I have found some wonderful new friends in the blind community.  I have paid work, if less than I used to.   My life has been pushed in new directions and some of them are more gratifying than I could have imagined. 

 

So if you are at the beginning of this experience, hang in there. You are not alone.  It may feel awful right now but take my word for it, it does get better.  Heaps better.

 

 

7     Coping

 

Watching TV With Low Vision

 

It seems elementary, but sitting closer to the television means colours and faces can be seen more clearly.  A person's scotoma, or blind spot, also seems to disappear when watching television up close.  You cannot hurt your eyes, so move your chair up closer!

 

When you do this you are making the picture bigger on your retina.  For example, if you have been sitting 8 feet away, and you move up to 4 feet, you have made the picture twice as large, or 2X in your eye.  Getting up close to things is one way to improve your functional vision.

 

A smaller screen is sharper than a big screen.  Before you buy a new television go to the retailer and look at the different sizes at eye level and choose what suits you best.

 

For those with macular degeneration, or a large central blind spot, there are several things you can do which will allow you to see the television even better.  If you have one eye better than another turn your chair on a 45 degree angle towards your better eye so you are not facing the screen directly, but can make maximum use of your better eye.  Also, when up close to the television, look above the screen slightly and notice the picture as you do this.  It may take a bit of practice, but placing your blind spot above what you want to see is often better than looking directly at something ‑ this also includes looking at faces or objects.

 

Consider the glare in the room when watching television.  Light from windows, doors, or lamps can often reflect on the screen. Placing your television away from, or not directly across from these, helps tremendously.

 

Check the angle at which you are looking at the screen ‑ are you looking down or at eye level?  If your television is very low it can be hard to see when compared with straight on viewing.  Having the screen just several inches below eye level is ideal. Don't ever put the screen up above eye level as this angle can hurt your neck and may dry out your eyes.

 

Relax!  Be aware of your neck, shoulders and back when watching television.  Make sure the chair is supporting you and there are no muscles being strained.  If these suggestions do not work a specialist in low vision aids or devices may be able to help you find a device that will allow you to watch television.

 

Downloaded from the Foundation Fighting Blindness at www.blindness.org/coping     

 

 

8     Letter to the Editor

 

From:  Elizabeth East. Kapiti Coast

 

9 July 2005

 

Dear Editor

 

As one's vision deteriorates and one finds it hard to judge distances, one may find that one is more prone to have spills in the kitchen when cooking.  I have discovered that using a crock‑pot means I do not have to transfer food between containers and that I can do the meal preparation during the day when I can see better.  The smell of a casserole, corned beef, or chicken slow cooking gives my home a warm welcoming atmosphere.  One prepares the food in the same pot that it cooks in and one can serve straight from that pot.  Many nationwide appliance retailers will have crock‑pots on special from time to time with up to 60% off, so one can buy one for about $50.  Crock‑pots on a low setting cost the same amount as a light bulb to operate ‑ considerably less than using ones oven. 

 

 

9     Book Reviews

 

Book Review 1

 

D'Amato, Robert, Snyder, Joan and Robert D'Amato.

 

Macular Degeneration:  The Latest Scientific Discoveries and Treatments for Preserving Your Sight.

Walker and Company, 2000.  ISBN 0802713599

 

Written by an ophthalmological team, this book draws on lengthy clinical and research experience for an in‑depth discussion of age related macular degeneration.  Information is presented from both a practical and layman's point of view and covers definition, types, diagnosis, treatments, and coping with low vision.  Extremely comprehensive, this book also examines risk factors, genetic predisposition, lifestyle and environmental factors, the likely course of both wet and dry MD, and the retaining of peripheral vision.  The treatments section includes a comparison between standard medical treatments such as laser therapy, photodynamic therapy and the latest experimental treatments;  and alternative therapies like acupuncture and yoga. The book includes a glossary and a list of resources for further information.  

 

 

Book Review 2

 

The Journey to Independence:  Blindness ‑ The Canadian Story by Euclid Herie

 

Euclid Herie, Past President of both the Canadian Institute for the Blind and the World Blind Union lost his sight to congenital cataracts when he was 16.  His goal in writing 'Journey to Independence' was not to judge or criticise, but to clearly tell the history of blindness in Canada.

 

He became totally absorbed by the life stories of people he interviewed, and these became the basis for his book.  Through these autobiographies Herie charts the course of blindness in Canada from before Confederation to the present day.  He details the creation and successful work of the CNIB which was founded in 1918 after Canada's blind war veterans returned home.  It has continued to give the nation's blind citizens somewhere to turn for support with vision loss.

 

Several issues of importance are chronicled.  Herie explores the history of education for the blind, from teachers in Canada's first school for the blind to home teachers in remote rural areas.  He also demonstrates how Canadian attitudes to vision loss have changed, describing the suggestion that the CNIB received in the 1930's that blind couples should be sterilized so they could not have children.  He examines the bias involved in the struggle for information in alternative formats, and to move visually impaired workers from sheltered workshops into gainful employment.   

 

The Canadian National Institute for the Blind is the primary provider of support to over 100,000 blind and visually impaired Canadians.  Their website is www.cnib.ca   

 

 

10   Branch News

 

Wellington Branch

Gael Hambrook/Elizabeth East

 

Allan Little spoke at the Wellington AGM in June about travelling as a blind person.  He drew on different experiences, starting with his childhood in the South Island, and concluding with some observations about his recent visit to South Africa where he was the New Zealand delegate at the World Blind Union Conference.  His talk was entertaining and thought provoking, and was thoroughly enjoyed by all present.  The 25 people who attended the meeting shared a light lunch together.

 

The Kapiti VIP Group met recently with two representatives from the Wellington Regional Council to talk about the proposed changes to the public transport system, and signs, later in the year.  The new system will ensure that bus and train services are integrated.  Two months previously Kapiti VIP's had met with the local bus company to discuss the local services and signs.  It was a fruitful meeting with a frank exchange of ideas.

 

Otago/Southland Branch News

 

Lynn Keogh/Chairperson

 

Our Annual General Meeting was held on Saturday, the 21st May 2005, eleven people attended.  Dr Marion Maw was the guest speaker telling us about the research project she has been helping conduct on a New Zealand family who have genetic disorders which include eye problems.  The research was published nationally the same week.

 

A discussion was held regarding the low number of members attending functions.  It was decided the committee will investigate the feasibility of holding one combined function a year, and establish a telephone service to keep members informed and provide peer support.  This suggestion was endorsed by all present.  

 

 

11   Notices

 

Retina New Zealand Inc Annual General Meeting

 

Our AGM Conference will be held in Auckland on Saturday the 27th of August at Awhina House, the offices of the Royal New Zealand Foundation of the Blind, 4 Maunsell Rd, Parnell.  The meeting starts at 10.00 am.

 

Professor Charles McGhee from the Department of Ophthalmology will speak about cataracts and intraocular lenses, and Professor Michael Kalloniatis of the Department of Optometry and Vision Science will speak about his research on retinitis pigmentosa (RP).  Dr Marion Maw, Chairman of our Scientific and Medical Advisory Board, will also give a brief presentation.  A panel discussion of members representing a range of eye conditions and visual impairments will be held in the afternoon.

 

Peer Support Training

 

Do you have a macular related problem, retinal detachment, or AMD?  If you live in the Auckland or Waikato region and have good listening skills would you like to have peer support training? A training course will be held on Sunday, the 28th of August at Awhina House.  To register your interest please phone the Peer Support Co‑Ordinator Elizabeth East on 0800 233 833

 

Hamilton Meeting, 30 August 2005

 

A meeting of the Waikato members of Retina NZ will be held in Hamilton at 108B Comries Rd, Chartwell, on Tuesday the 30th of August at 1.30 pm.  The speaker will be Elizabeth East, Peer Support Co-Ordinator.  Drivers are also welcome to attend.  For more information please phone Susan Mellsopp on (07) 853 3612.

 

New RNZFB Publications

 

Explaining the role of the Foundation is the subject of a new booklet published by the RNZFB.  Well illustrated, it describes the major eye conditions experienced by members, how to become a member, blindness awareness, and the services it offers to members.  These include orientation and mobility training, guide dog services, the vocational placement service, and Braille and talking books.   Other services such as support for the DeafBlind, Mana

Kapo ‑ the Pacific services, and the role of volunteers are outlined.   

 

Several other new pamphlets have recently been made available. 'What to do when you meet a blind, deafblind or vision‑impaired person' explains issues such as the importance of introducing yourself to a blind or vision impaired person, telling them when you are leaving, giving directions, and asking if they need help.

 

'Sharing Vision:  Guiding a blind or vision‑impaired person' explains how to be a valued and safe guide, how to make contact, the arm grip, and what to do at corners, doorways, narrow spaces, kerbs or stairs.  This pamphlet also describes how to guide a person to a chair and how to get a blind or vision impaired person into a car safely. 

 

'Gardening and Eye Safety' highlights the fact that prevention of eye injuries is essential and wearing eye protection when in the garden is both simple and important.  This pamphlet details the steps that should be taken if an eye injury does occur.

 

A bookmark with 'Frequently Asked Questions About Blindness' printed on it has also been made available.

All these pamphlets can be obtained from your local Royal New Zealand Foundation of the Blind office, by phoning the Foundation on 0800 24 33 33, or email at awareness@rnzfb.org.nz     

 

Kids With Choroideremia

 

Choroideremia is a rare inherited disorder that causes progressive loss of vision due to degeneration of the choroids and retina.  It occurs almost exclusively in males.  In childhood night blindness is the most common symptom, the disease continues to progress throughout the individual's life.  Several layers of cells, the choroid, the retinal pigment epithelium and the retina degenerate.  At present there is no effective treatment or cure.