Retina NewZ
November 2016 No.571
The Newsletter of Retina New Zealand Inc.
PO Box 2232, Raumati Beach, Paraparaumu 5255
Phone 0800 569849
In This Issue
Cover Story: Low Vision Workshop a big success! 1
From The [Acting] Editor 2
From the President … 2
Low Vision, Blindness and Our Bodies 3
Youth meet: Food, Coffee & Good Chat! 5
World Sight Day: Dunedin Celebrates 5
Nutrition for the Retina – By Emma Sandford 6
Pedestrian safety: why we need an inquiry 7
Research Project: Lighting & Low Vision 8
Phase 2 study – Can you help? 9
Retina Research Update 10
Tech Update: The best of 2016 – by Matt Rudland 10
Kapiti Vision Impaired Persons Group [VIP’s] 12
Tauranga Group 12
Support Groups 12
Easy Recipe 13
Notices 13
Cover Story: Low Vision Workshop a big success!
In recent years, our Management Committee have tried to make our AGM weekends more eventful and “outcomes driven”. Last year we had a peer support training day on the Friday, so this year we held a Low Vision Workshop, facilitated by our AGM guest speakers – Vildana Praljak and Dieu Nguyen.
Attendees included Optometrists, community-based Occupational Therapists, Orientation & Mobility and Assistive Daily Living Instructors, from across Auckland, Whitianga, Thames, Hamilton, Dunedin, as well as some of our committee members as a patient cohort.
It was great to share information, resource networks and perspectives with each other.
It highlighted the role of Retina NZ as an enabler, giving Low Vision service providers a forum to share their ideas and perspectives to ensure the best possible outcome for people with Low Vision, through a referral network of information and service providers.
From The [Acting] Editor
Well unless you’re using a screen reader or listening to the Audio CD, you will probably have noticed the newsletter’s had a makeover. As you might recall our Newsletter Editor resigned from the role in August, so while we’re “between Editors” it seemed the perfect opportunity to review and refresh the newsletter, so the next Editor has a new template design and clearly-defined production process.
So putting my Treasurer’s hat on for a minute, with a bit of clever “bean-counting”, we’ve managed to get a few pages of colour and better quality paper for the same money we were spending previously. My next “bean-counting” trick is to add an extra 4 [or even 8] pages without costing us more money.
Its clear to me that there’s loads of important stories to cover and because we publish in Large Print there’s about half the word-count of a typical A4 page. I feel we need to add some additional pages so we can cover all the important issues.
One exciting new addition [for me anyway!] is the increased Accessibility achieved by adding the EPUB format to our email options and by ensuring the PDF format is fully accessible.
EPUB’s can be read on your phone or iPad/tablet or computer using iBooks or ePub-reader. The big advantage of ePub is the ability to change the text size, font and background while still retaining the sense of reading a printed copy.
Having an Accessible PDF is really important because it contains all the visual treats for sighted readers and full description for Low Vision or Blind readers, which means the Newsletter becomes more than just a good read, it becomes a tool that promotes inclusivity for those of us with Low Vision or Blindness, by allowing us to share and discuss stories with friends & family.
FEEDBACK – Tell us what you like [or dislike] – its okay… brutal honesty is accepted and constructive criticism is welcomed! If you want more of what you like to read about, let us know what you like. We’d love to hear from you by email:
Happy Reading!
Cheers – Mike Smith
Job Vacancy
We’re calling for “Expressions of Interest” for the Newsletter Editor’s role. One aspect of the role is sourcing/writing/editing stories, the other aspect is publishing the newsletter in its various formats. If you excel in one aspect or the other [or both] we’d like to hear from you, including your skill-set and which aspect[s] of the role interest you. We’re a charity so the remuneration is modest. If you have a passion for the role and not simply “in it for the money” then please email Sue Emirali:
From the President …
It seems incredible to be wishing you all a Merry Christmas as 2016 draws to a close in what feels to me like March! We hear from a lot of our members that the holiday season can be a lonely time as regular activities close down and friends & family are not always around.
It can also be harder for many of you to see in bright sunlight and having the right sunglasses for your eye condition is key to enjoying the outdoors. It is also worth considering a sun hat with a peak to reduce the amount of direct light on your eyes.
Over the past year Retina New Zealand has been involved in various initiatives to promote the awareness of low vision issues. We have participated in the Ministry of Health Low Vision Strategy Review, put in a submission on the Marrakesh Treaty and participated in various other central and local government disability forums.
One of the reasons we do this is to highlight that there are a lot of people in the community with low vision and that with the right infrastructure they can remain part of society. An example of this is highlighting the benefits of removing steps from public areas and working towards making all public spaces accessible for all.
We are fortunate to be living in a time where technology is aiding our independence. You can now purchase talking scales, clocks, watches, phones, computers and virtually any item you require. Many of you are already downloading talking books to a tablet and using your cell phones to tell you where you are if you get lost.
For most of us, the hardest part is learning how to use all of this equipment and getting enough practice to feel competent. You may have a SeniorNet group in your area or they may be able to advise where you can get help.
I am happy to let you all know we have a vibrant Youth section within Retina, run by Zane Bartlett and Harriet Kay. They are connecting with young people and arranging to meet with them in various areas to enjoy each other’s company and share experiences.
I would like to thank the Executive Committee and all of our other volunteers for their continued work to increase awareness around low vision issues and provide peer support for our members and the public. Please remember you can contact any of us, any time on 0800 569 849.
I would also like to thank you all for your continued support by choosing to be a member of Retina NZ. There is still a lot more work to be done on this journey of awareness of low vision issues in New Zealand and with the support and feedback from the membership our work is made easier.
Merry Christmas!
Sue Emirali
President – Retina NZ
Low Vision, Blindness and Our Bodies
The journey that led Vildana Praljak and Dieu Nguyen, pioneers in low vision and blindness services in Australia to visit New Zealand.
Neck tension, headaches,back pain, musclecramping, visual fatigue, tripping, falling, loss of balance, do these symptomssound familiar? These issuesare often experiencedby people withvision loss, but rarely associated with the loss of sight.
Vision loss has a significant impact on the human body. In this article we’d like to share some of the learnings that have come fromour personal and professional experiences through working with patients over the past nine years.
Vildana's Story:
When I was diagnosed with cone-rod dystrophy which resulted in low vision, I thought the biggest problem was not being able to see to get around, recognise faces, experience colours and details of objects.
I quickly realised it also meant night blindness. What I didn’t expect was to feel constantly fatigued; some nights I wasn’t sure whether I had passed out in bed or fallen asleep. My posture, balance and co-ordination was deteriorating along with my eye sight. I had an increase in headaches, in addition to neck pain, muscle cramping and developed a curve in my spine with poor posture. I hadn’t realised that the way I walked had changed, twisting my body to lead with my left side because I could see better with my left eye. I carried a lot of tension in my body, which in turn affected my mental health. It took me a long time to realise that all of these symptoms related to my vision loss.
Living with low vision is like living between two worlds; the world of light where I can see enough to get by, and the world of dark, where I rely on all other senses and my intuition. Everyday, I need to negotiate between these worlds.
Dieu’s clinical experiences:
As an occupational therapist specialising in the field of blindness and low vision for the past 9 years, I have developed a strong under-standing and appreciation for the need to directly address the impacts of low vision on the human body.
My work has since involved providing practical strategies and information for people to better understand and deal with the secondary symptoms related to vision loss.
A few years ago, I met a patient whose personal perspective would come to redefine my understanding of vision loss and our bodies.
‘Lisa’, aged 23 at the time, wished to become independent in cooking. Lisa was blind from birth. During our sessions, Lisa explained she had a history of anorexia and bulimia and had been hospitalised a number of occasions due to an eating disorder. I was perplexed. In that moment, I realised I had only understood body image for persons with low vision and blindness in a limited way. Part of my role includes finding strategies for identifying clothing, make-up application, personal grooming and maintaining one’s health & wellbeing through food and exercise. But my thinking had not considered the gamut of this topic in a holistic way, coming from a focus on the impact of vision loss on our bodies. Over the the next 2 years, conversations with my colleague Vildana who has low vision deepened my practice and led us to developing workshops that focus specifically on the impact of low vision and blindness on the body and our personal identities.
Strength, Balance and Positive Thinking: Workshops on Body Movement and Self Expression for Persons with Vision Loss.
This a 2 day workshop that has been developed to explore and reduce the impact of low vision and blindness on the human body. We work in small groups and provide one-on-one advice for patients to understand the effects on the body including:
Increased tension in the muscles;
Headaches and migraines;
Reduced balance and postural issues;
Changes in the positioning of our feet, hips and shoulders;
The impact of these symptoms on mental health.
Patients who have attended the work- shops reported a better understand-ing of the impact of vision loss on their physical bodies and have also expressed a reduction in visual fatigue by applying some of the strategies gained.
In August 2016 we were privileged with an invitation by Retina New Zealand to share our learnings with service providers from across the country. It was a unique opportunity that saw Retina NZ, the Blind Foundation and other health professionals come together to innovate services for persons with low vision.
There was a general consensus that improved low vision services could result in greater levels of independence, employment and social inclusion for these patients. Low vision aids to improve lighting, contrast and magnification, orientation and mobility services, daily living skills training and employment services were highlight-ed as essential. Furthermore, it was acknowledged that a streamlined approach engaging governments, health organisations and service providers in the sector would facilitate better outcomes for the blindness and low vision community.
We were honoured to speak at Retina NZ’s 2016 AGM in Hamilton on the last day of our visit. We presented the topic: “The impacts of vision loss on our bodies”, which was well received among the members present. The concerns identified were the same as those expressed by patients of our services in Australia, suggesting a need for programs like strength, balance and positive thinking. We hope our visit was the start of an ongoing conversation between health and disability providers and look forward to be a part of this dialogue.
We would like to thank the Executive Committee of Retina New Zealand for creating the platform that enabled these conversations to be possible.
Youth meet: Food, Coffee & Good Chat!
On August the 27th, Retina NZ held its Annual General Meeting which Zane and I attended and supported, as we’re both now part of the Executive Committee.
A small group of young vision impaired people attended, which we were thrilled with. Zane and I are so often talking for, and advocating on behalf of our Retina Youth, so it was nice to put some names to faces, or in some cases voices to names!
We enjoyed a large and tasty lunch with the rest of the Members, who were naturally a fair bit older than us, but they were engaging and interested to know what it's like to be vision impaired now with so many advances in technology.
We then headed off to do our own thing at a local cafe. We very happily had a tag-along, who was Benji Wright, a young doctor who received a Retina NZ scholarship last year.
It was really interesting to talk with someone who was both a peer and a medical professional. We were able to have a meaningful conversation on what it's like to live with this disability, the differences in our eye conditions, and how we have been treated by medical professionals in the past.