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My blindness condition, perpetual degeneration or future regeneration Six years in the murk, but not lights out.

THAT’S LIFE

I’ve been up and down and over and out
And I know one thing
Each time I find myself flat on my face
I pick myself up and get back in the race

The Chairman of the Board, Francis Albert Sinatra

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According to the WHO dated 11 October 2017, “an estimated 253 million people live with vision impairment: 36 million are blind and 217 million have moderate to severe vision impairment.”  Inclusive within the above statistics, there are about more than 450,000 Australians with a vision impairment.  I am one of these persons.

My purpose in posting this article is to establish a reference bench mark to note my progress, if any, in respect of my blindness condition, nearly six years after achieving the unenviable status of becoming legally blind.  Intentionally, others may benefit  from my commentary.

My wife Gillian is my confidante, gSight and amanuensis in all matters pertaining to my personal coping with my sight loss trauma.  From the beginning, Gillian has carried this burthen, enduring all the ups and downs, and at times, our road has been rocky.

I cannot see your face

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As a person impacted upon by the wet form of Macular Degeneration (MD) in both eyes for nearly six years, I have necessarily developed a serious interest in matters related to the improvement of the vision enhancement of persons affected by this disease.

Based on my personal experience, the three most important directions that may give hope to persons with sight loss due to wet MD, and not necessarily in order, are -

1.  Future possible medical breakthroughs in the restoration of sight loss.

Currently in Australia, there is no medical procedure or cure for the full or partial restoration of sight for persons affected by the wet form of MD.  In my case, my maculars became dead moonscapes known as disciform scarring and associated geographic atrophy, causing complete central vision loss, leaving me with only degenerating peripheral vision.  I guess I inherited the full genetic package.

Research work being undertaken in Japan and California, and at London’s Moorefield Hospital, may bring us some hope for the future.  In my layman’s understanding, gene and stem cell therapies are being trialled on selected patients with wet MD, for the purpose of vision restoration.  This is a work in progress and not currently available in the public domain.

Oddly enough, I still do not lose hope that a serious medical breakthrough may turn up one day, which may offer in the minimum, a partial restoration of sight for those who really know what vision loss is all about.  Fate will determine this.

2. Mental health coping mechanisms to live with a blindness condition.

My personal therapy repertoire, to get me through the day, is to try to avoid thinking about or dealing with my problems associated with my serious central vision loss.  But, and there is always a but, something always smacks you in the face to remind you of your place.  A structured day always helps.

The predominant stressor precipitated by my central vision loss, is that I have been transformed from a competent professional consultant to an illiterate person prior to the development of the Gutenburg printing press in 1450.  My bonus being that illiterates, through necessity, develop strong memory capabilities.  Simply, I now cannot read text in a normal way and rely excessively on Gillian to assist me here.

My Digitech radio has become a primary information and amusement source, which has replaced my previously, taken for granted, reading ability.  I possess a substantive library of books in my former office, which I now cannot read.  I have developed a positive practise with Gillian, who reads to me a chapter or two from a book or an ebook almost every afternoon.  Lucky Robbie.

Working together with Gillian, we have created numerous personal podcast MP3 recordings as a therapy to deal with my blindness condition issues.  This has proved to be a successful technique, with substantial ribald humorous content as well.

Derek Daniel’s three chapter PDF book titled “Lost in Transition”, relating to his experience of sight loss and strategies for coping, is recommended reading.

The following podcast which I listened to recently, presented some invigorating ideas – reference :  “Holding on to Hope: Thoughts from a Therapist” – Episode 37 “Life after Sight Loss Radio” podcast by Derek Daniel, dated 22 November 2017.

The other most useful thing I have found in the last 6 months is information found through Youtube concerning blindness issues.  Have a look at Sam and the Blindspot, Sam and the Blind Life and Derek Daniel’s website and his podcasts, “Life after Sight Loss Radio”.

I cannot see my face

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3.  Modern technological devices, which may improve the vision experience of persons with wet MD.

I have had the opportunity of testing and trialling four different types of wearable eyesight devices, and currently, I have had long-term possession and use of one of these.  My experience is that these devices only provide a marginal lift in my personal vision enhancement.

I am acutely aware that wearable vision devices may not suit varying eye conditions, particularly where the intensity of vision loss is high.  Possibly the extent of my vision loss falls into the lost cause category, and therefore I cannot  currently be assisted by this new type of technology.

From my perspective, a more serious integration of the relevant expert medical fraternity and device manufacturers, could benefit the end user much more.  One size fits all, doesn’t necessarily work.

It could be construed that the rule of caveat emptor applies to the purchase of the relatively expensive wearable eye devices.  An interested person should take care in critically establishing that a particular device genuinely provides a real and distinct vision enhancement experience, before purchase commitment.  Try to seperate the emotion from the reality.

My go-to technology, which provides for me the most valuable benefits for my blindness condition are the Apple Mac personal computer, together with the Apple iPad Pro 10.5”.  Entry cost is high, initial learning curve may be steep, but there are over-riding wider benefits in the Accessibility features for persons with a vision impairment.  The added significant bonus being online connection, together with all the normal digital computer facilities.  In my view, the combination of the desktop computer and tablet gives you the most bang for your buck.  Gillian and I necessarily work together to solve our sometimes maddening computer glitches.

My list for June 2018 of the best features and apps that I find useful, in respect to my vision loss, when working with my Mac and iPad Pro are as follows.

Both devices facilitate text to speech and speech to text, and have an efficient zooming capability to enlarge text and images on the screens.  Large desktop icons permit access to various websites and apps.

The iPad Pro in particular has a superior camera which allows for real-time external magnification and is straight forward to use.

The best iPad Pro apps I have found to date are – Camera, Magnification, Super Vision, PMag, Supervision + Search, Seeing AI, Prizmo Go, EasyReader, Big Keyboard, Big List, Scanbot Pro, MyScript Stylus, MyScript Calculator 2, VoCalc and MD evReader.  These apps are inbuilt or free, or can be purchased for a few dollars.

Six years in the murk, but not lights out

My summary position statement

I am not lights out yet as I am fortunate to have some remaining peripheral vision – the murk.  I work with this the best I am able, and am always driven to search for answers, which may improve my lot and others.  Now in my 70th year, I wouldn’t allow myself to guide anyone across a busy road.

I am skeptical that a cure for persons with wet MD will be available to the general public in the next six years – and at what location and cost, if and when it does become a reality.

The reason I make this statement is that an acquaintance of mine, who is also affected by serious long-term vision loss, commented that medical cures were talked about thirty years ago, and still have not eventuated.

I dearly hope that I am wrong, and be corrected in my statement in the near future.

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Robert and Gillian at Coorabell in 1986 – before the murk

Robert Prikulis ~ Emeritus NSW Registered Land Surveyor, 1 September 2016

Vulnerable escarpment lands under pressure in the Byron Shire, Part 3

Is Environmental Protection a green myth at Coorabell  ?

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Turning healthy mature native trees into poles

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Extreme branch lopping does not help mature native trees survive

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More than 30 years to grow and about 60 seconds to cut down

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Plant trees ~ grow trees ~ protect your trees ~ for the benefit of all

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What is the primary objective of multiple assaults of tree cutting and tree interference of mature native trees on the same property, on the Coorabell Escarpment, in a 7 (d) Scenic / Escarpment Protection Zone ? In my opinion, simply to attempt to enhance the property’s views for monetary gain.

Between 2008 and 2014, Byron Shire Council has issued the following enforcement penalty orders for the unlawful cutting down of multiple mature native trees on this same property, on different occasions by different owners, at the time.  Tree felling on this property was first brought to the attention of Council in 2005.

  • 2008 – The unlawful cutting down of 24 mature native trees.  Byron Shire Council issued a penalty order to the owner to implement a tree restoration plan, to replant the 24 trees, their ongoing maintenance  and noxious weed management.
  • 2009 – The extreme lopping and removal of the canopy of approximately 50 mature native trees, and incomprehensibly, no penalty issued by Byron Shire Council.  Commented upon and strongly criticized by the Senior Solicitor of the Lismore NSW Environmental Defender’s Office in a letter to Council, dated 15 October 2009.
  • 2012 - The unlawful cutting down  of 4 mature native trees.  Byron Shire Council issued a penalty order to undertake a replanting program which involved the replacement of 50 trees and weed control.

  • 2014 – 13 October; Byron Shire Council advises by email that the current owners have accepted responsibility for the unlawful felling of 12 mature native trees on 24 July 2014, and Council has issued a penalty infringement notice of a $1,500 fine.  The property owners will also be required to replant and maintain similar trees to those removed.  A notation of the Council Order has been placed on Council’s internal Property Register.  If the property owners re-offend, Council has indicated that it would issue a Court attendance notice.  Provision is also made for the owners, if they so desire, to have this current enforcement penalty referred to and determined by the local court.

Is there a better way of enforcing environmental protection of mature native trees, that are cut down to enhance property views ?

There is a raft of existing, varying and sometimes conflicting legislation, which impacts on enforcement penalties for the cutting down of trees, for the purpose only of obtaining views ( posted 14 December 2014 ).  A clear policy determination by Council in this regard, would be helpful to the community and provide a more effective deterrent.

In my experience, orders for replanting and/or the implementing on the ground of a tree restoration plan, have been failures.  The proper monitoring,  nurturing and maintenance of replaced trees just does not happen.  Importantly, the obligation to restore felled trees rests with the owner, and this obligation is extinguished when a property is sold, and does not seem to pass on to the new owner.  Additionally, enforcement penalties issued by Council, do not again seem to take into account a previous history of multiple infringements on the same property.

Where trees have been detrimentally interfered with by a previous owner, Council should refuse an application to fell these supposed “sick or dying” trees.

A suggested role for a property Certificate of Title in environmental tree protection.

The act of unlawful tree felling permanently alters the property landscape and recovery to the original status is almost impossible.  As an effective deterrent to repeat offenders, it is suggested that an easement on the ground, for the protection of trees and/or a management statement for tree restoration be placed on the notations section of the Certificate of Title of the subject property.  This results in enforcement conditions being attached to the property and not being extinguished on change of ownership.  An easement for tree protection can be created, together with details as to how it operates, showing the location extent in a Registered Plan of Survey.

The easement or management statement should only be removed when the existing owner demonstrates full compliance with Council directives.  These title notifications should not be effected by a change of property ownership and should only be removed on Council’s satisfaction.  When a land title’s property search is undertaken, any person can then be immediately made aware of the responsibilities attached to that property.  It is common practice for interests to be noted on a Certificate of Title.

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Robert Crumb’s interpretation sort of says it all !

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Posted : 20 December 2014

Dear Reader – making representations to the proper authority, being Byron Shire Council, concerning current and repeated offenses with respect to the unlawful felling of mature native trees, has resulted in us being intimidated by Council itself with trivial and largely officious, unenforceable directions.  So what’s new.  Simply, the shoot the messenger syndrome.  Moving at a glacial pace, Byron Shire Council don’t, won’t or can’t answer clear questions put to them by us and on our instructions, by our legal representative.  This Council does not seem to recognize that multiple penalized offenses have occurred in the same locality, issuing soft penalties, which have little or no deterrent.  From our perspective, in terms of environmental degradation, Byron Shire Council itself, through it’s ineffectual inaction, becomes part of the problem.  This Council strongly promotes itself as an environmental local government organization, but does not, in our opinion, walk the talk.  In stark comparison, under the current NSW Rural Fires Act, fines of up to $132,000 and a maximum of up to 7 years jail is applicable to offenders who deliberately break the existing fire laws ( Northern Star, 25 October 2014 ).  Contrast this with a $1,500 fine for multiple unlawful tree felling for the third separate occasion by different persons.  With respect to the aforesaid, Byron Shire Council has never taken these matters to Court.

Additionally, the amenity and quiet enjoyment of our property has been impacted upon us personally by retaliation and malice, resulting from our recent justifiable complaint  to Byron Shire Council, concerning the unlawful mature native tree felling on 24 July 2014.  It is our view, that Council itself has inflamed this situation.

Community and local government dissatisfaction with the abuse of tree and vegetation clearing rules, which came into use on 1 August 2014, resulted in amendments being made on 27 November 2014 by the NSW Rural Fire Service, while a current overall review is being undertaken.

Posted : 22 October 2015

The aforesaid review has now been completed, resulting in the following adopted policy documents -
1.   NSW Government Review of the 10/50 Vegetation Clearing Entitlement Scheme, dated August 2015.
2.  NSW Rural Fire Service 10/50 Vegetation Clearing Code of Practice for New South Wales, dated 4 September 2015

Posted : 20 November 2015

The Byron Shire Echo Netdaily report titled – Byron council downgrades key environment role, dated 20 November 2015 – appears to shed light on some of my comments made in this Journal Blog article – ” Is Environmental Protection a green myth at Coorabell ? “

Posted : 16 April 2016

Extract, page 14, Byron Shire Draft Rural Land Use Strategy, March 2016 – ” Policy Directions for Our Rural Environment - 5. Future rural lifestyle living opportunities will preserve scenic amenity, minimise environmental impacts and better manage natural or man made hazard risks. “

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Plant trees ~ grow trees ~ protect your trees ~ for the benefit of all

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Dedicated to Bill Taylor ~ master botanist.