Sue’s New Page 6/24/2017

BIG NEWS!  In a few months, it looks like the first actual treatment for geographic atrophy (GA) will be available from a retinal specialist near you!  We call it “lamp stuff” and the phase 3 clinical trials will be wrapping up in July…at least that’s the plan (disclaimer: plans can change, we’re reporting the status as of this moment in time).  Phase 4 is scheduled to start in December and it appears that Sue will be part of it! And those of you with GA, you could possibly be part of it, too.   Read all about the…

BIG News!

  • categories: Diagnosis: Newly Diagnosed, Dry AMD, News, Research, Sue’s Musings, Treatment
  • keywords: clinical trials, lampalizumab, Phase 3, phase 4, phase III, phase IV, RPEs, stem cells

Sue’s New Page 6/22/2017

Sue tests the Aipoly app that she mentioned in her previous page.  Does it live up to the hype?  And in the continuing saga of maintaining a network of people who can provide transportation, she asks…

How Many Favors?

  • Category: Low Vision Aid, Sue’s Musings, Technology, Technology; Apple, Technology: Android, Technology: Phone/Tablet/Computer, Tips for living with low vision
  • Keywords: Aipoly, Android apps, Apple apps, transportation

Guest Author 6/22/2017

This is the second of 4 pages that Cathy has written.  You can read them all by following the link at the bottom of each page.

The Other Shoe, My Journey: Part 2 by Cathy Meggs

We are always looking for people to write for us.  If you are interested, let us know at light2sight5153@gmail.com.  I’ll be happy to help with the editing and I’ll put your words on the website.

Updated: Where can I get support?

There are many reasons why a person with AMD might look for and benefit from support.  Click here to read a great article about how the initial reaction to a diagnosis of AMD is like going through the stages of grief

There are support groups on the computer and off.  Some are led by peers and some by professionals.  You may find a support group that you can attend in your area sponsored by low vision professionals and organizations, senior groups, schools, libraries or that are put together privately by other people with the same problem as you.

On the computer you can find support groups that meet:

  • using video, audio or text chatting in ‘real time’ (also referred to as ‘live’).
  • using messaging systems also called discussion groups or message boards.  You can leave a message at any time for other members of the group and read messages posted by others.

Click here to read about the benefits of support groups for people with AMD.

Message Boards/Discussion Groups on the computer
By email
Meet in person
On the phone/telesupport
Start your own

This group provides free information and support through presentations to groups of senior adults affected by macular degeneration and related retinal diseases.  You can join & get access to their materials so you can use them in your own group.

More information by postal mail
  • Association for Macular Diseases
    210 E. 64th Street
    New York, NY 10021
    (212) 605-3719
    – Offers education and information on macular disease through seminars, newsletters, and a hotline. Offers counseling to patients and their families.
  • Macular Degeneration International
    is now a part of Foundation Fighting Blindness
    Toll Free Helpline 1-800-683-5555
    EMail: MDInfo@blindness.org
    – Provides support for people affected by inherited macular degenerations including Stargardt’s disease.

Do you run a group that is not on the list?   Do you belong to a group that is not here?  Please leave a comment on this page or send me an email at light2sight5153@gmail.com so that I can add it. Thanks!


Original post May 10, 2016; updated October 10, 2016, June 21, 2017.

Sue’s New Page 6/21/2017

Sue talks about 2 apps for those with low vision: LowViz Guide which helps people navigate indoors and Aipoly which identifies objects in photos that you take.

App Update

  • Categories: Low Vision Aid, Technology, Technology; Apple, Technology: Phone/Tablet/Computer, Tips for living with low vision
  • Keywords: Aipoly, Android apps, Apple apps, artificial intelligence, BeMyEyes, Dan Roberts, iBeacons, LowViz Guide, VoiceOver

Guest Author 6/21/2017

We’re extremely pleased to add a new author to the ranks of our guest authors.  Facebook group member Cathy Meggs tells us about…

The Other Shoe, My Journey: Part 1 by Cathy Meggs

We are always looking for people to write for us.  If you are interested, let us know at light2sight5153@gmail.com.  I’ll be happy to help with the editing and I’ll put your words on the website.

Book Review: “CURE AMD – Ancestral Dietary Strategy to Prevent & Reverse Macular Degeneration by Chris A.Knobbe, MD”

Review by Chrissie Whitfield, New Zealand, Facebook group member

READERS NOTE – some of the original emphasis and intent from the author may be lost with the brevity of this review in MY words.
CURE AMD – Ancestral Dietary Strategy to Prevent & Reverse Macular Degeneration by Chris A.Knobbe, MD (University Professor of Ophthalmology) – 2016

Last week I offered to review this book and to be honest I expected to glide through a lightweight opinion piece and write up a couple of sentences to cover it. Not so.

Bear with me, my own diagnosis is still relatively new (in the previous couple of weeks), and many of you that have been here a while may already know and be familiar with similar / same nutritional research, on that basis this review is written from the perspective of the newly diagnosed.

Let me start by saying that despite the title, the author is NOT proposing that if you change your diet today you will be able to reverse any pre-existing damage and / or restore sight that has been lost.

What he IS saying (and quotes an extraordinary amount of global research from the 1800’s through to present day to support his claim), is that AMD can be prevented and early stage AMD reversed through the adoption of an ancestral dietary strategy and the used of what he terms ‘sacred foods’. In fact he goes further to state (in brief) that:

– AMD is not ‘age related’ but diet related
– The incidence of AMD and other diseases were either extremely rare or did not exist over 100 years ago
– There is a demonstrably clear relationship between the introduction of nutritionally deficient man made and / or processed food and the incidence and prevalence of AMD (and other disease).  Additionally, the author proposes that the use of vitamins /mineral supplements and synthetically derived nutrients CAN in some cases POSSIBLY assist some AMD patients but in other cases it MAY be detrimental, whereas replacing your diet with naturally produced foods in an enriched diet (natural vitamins, fatty acids, minerals etc. is the key to good health and a natural immunity to a great number of diseases including AMD. So, essentially he claims that macular degeneration should not be considered in isolation and by changing your diet and ‘eating right to save your sight’ you would also be reducing your risk of a multitude of other diseases (for example: heart disease, diabetes, arthritis, auto immune disorders).

He further states that not much has changed in the theories and hypothesis put forward in the early 1900’s through to today and there have been many studies assessing age, genetics, ethnicity and their role is AMD but little around the parallel between the introduction of trans fats (for example) and the prevalence of AMD.

Without boring you all, there are a number of really interesting research facts and figures (including the fact that as of 2010, AMD had replaced cataracts as the most common cause of blindness in high income regions) – not just in the USA, but inclusive of all regions around the world (including little ole New Zealand, I was pleased to see!).

So in a nutshell in the 1800’s (when instances of AMD were very rare), nutritionally it was a much simpler world as foods were mostly whole and unprocessed and largely organic – there were no such thing as edible vegetable oils, refined sugars and flours, high fructose corn syrups, highly refined wheat flours, genetically modified corn and soy for example.
Tracking the main changes to the (American) diet from the 1800’s the author demonstrates the relationship between the increase of the use of sugar from circa 1850 and the introduction of harmful vegetable oils in late 1800’s with the increase in disease generally and the prevalence of AMD.

In the final stages of the book, the author discusses the use of synthetic vitamins, what he means by ‘whole unprocessed foods’, the grains to eat (and how to prepare them), an outline of the ‘sacred foods’ and a list of foods (and food types) to avoid as a plan to prevent and reverse early stage AMD.

IN MY PERSONAL OPINION – knowledge is power and at the very least, this book is worth a read if you are like me and seeking a wider understanding of both historical research (in both nutrition and AMD) as well as identification of options available to you in early stage AMD.

**Note: we receive no money from the sale of this or any other book that we mention on our website or Facebook group not do we recommend a book unless we say that explicitly.

Sue’s New Page 6/18/2017

Sue talks about some of the things she’s heard regarding pet peeves of people who are blind (eg, avoiding statements like “ya see what I mean”) vs people who are visually impaired (eg, people who come up to Sue & just start talking).  Sue asks about YOUR…

Low Vision Pet Peeves

  • Categories: Sue’s Musings, Tips for Low Vision
  • Keyword: pet peeves

Sue’s New Page 6/17/2017

Sue’s written about the depression that comes with a diagnosis of AMD.  What effect does it have on the family?

Mi Depression, Su Depression

  • Categories: Research, Self Help: Depression, Tips for living with low vision
  • Keywords: depression, emotional contagion, families, family members, mental health support, overprotection, separation and divorce, stages of grief, stress

Sue’s New Page 6/16/2017

Sue continues to search for information about how much of her sight she could possibly lose and shares some early information about the extent of both central and peripheral vision (more to come).  On another topic, she’s not the only one who says “if we have to be losing our sight, this is the best time in the history of man to be doing it.”  Not only are there injections to manage the symptoms of wet AMD, we have a lot of visual aids – computer and non-computer – plus the body of scientific knowledge & research is growing by leaps and bounds.  You may recognize this page’s title from the X-Files TV show.  Should we have the “MD-Files”? ::smile::

The Truth is Out There

  • Categories: Cognitive Therapy, Sue’s Musings, The Science Stuff
  • Keywords: central vision, counting positives, DBT, ending blindness, peripheral vision

 

Sue’s New Page 6/14/2017

Whoops, this should have gone out 2 days ago…sorry!

There is a company in the UK who has created low vision goggles that they say gives many of the functions of a CCTV that you can wear.  Here’s more information in this page.  We’d love to have a volunteer to test this and give us a report.

UK Volunteer Wanted!

  • Category: Low Vision Aid, Technology
  • Keywords: Give Vision, Sight Plus, wearable tech, wearable technology

Vision Loss: The Early Pages 6/12/2017

Title & date first published

  • 33.  Three States of Mind  March 30, 2016
    • Categories: Cognitive Therapy, Sue’s Musings
    • Keywords: DBT, dialectic, emotional mind, rational mind, wise mind, three states of mind, turn the mind
  • 34.  ChaChaChanges March 30, 2016
    • Categories: Low Vision Aid, Self care, Tips for living with low vision
    • Keywords: adapting the house, bump dots, colors, contrast, habilitation, rehabilitation, using the microwave

Do you have suggestions for keywords? Please let me know here or send me an email at light2sight5153@gmail.com.

Sue’s New Page 6/10/2017

One of the limitations of our website is that it doesn’t easily allow people to interact with each other (there is the option of the reader leaving comments but everyone doesn’t see them necessarily, it’s a way to be in contact with Sue & me).  We have a Facebook group which at the moment has 663 members (growing steadily) where we can easily have conversations.  Last weekend we had a very lively one about how our friends and loved ones react to our vision loss or fears of vision loss.  Sue’s not in the group because she is so busy but I do keep her appraised of what’s going on.  She shares her research and experience on the topic.

“I Don’t Want to Go There!”

To find out more about the Facebook group, click here.

Sue’s New Page 6/9/2017

In September of 2016, National Geographic had as its cover story “Why There’s New Hope About Ending Blindness”.  Of course, we hope that means an end to AMD which is only 1% of the world’s cause of the total picture.  What about the other 99%?

Avoidable Blindness

  • Categories: Future, Prevention, Research, Statistics
  • Keywords: Audacious Goal Initiative, Audacious Goals Project, Lions Club, Nat Geo, National Geographic, SEE International, Walmart Optical

Vision Loss: The Early Pages 6/8/2017

Title & date first published

  • 31.  A Watch Hunt March 28, 2016
    • Categories: Cognitive Therapy, Sue’s Musings
    • Keywords: DBT, turning the mind
  • 32. Never Say Always  March 28, 2016
    • Categories: Cognitive Therapy, Sue’s Musings
    • Keywords: dilectics, DBT, handicap

Do you have suggestions for keywords? Please let me know here or send me an email at light2sight5153@gmail.com.

Sue’s New Page 6/7/2017

Sue sees her retinologist regularly unless she has a change that she’s concerned about in which case she sees him more often.  Her geographic atrophy (advanced AMD) is bad enough that she wonders if the good thought is that maybe her vision loss has stopped.  But then there’s the bad thought.

Good Thought, Bad Thought

  • Categories: Dry AMD, Testing, The Science Stuff
  • Keywords: central vision loss, choroid, dry AMD, eccentric viewing, geographic atrophy, photoreceptor, retinologist, RPEs, tomography, wet AMD

Vision Loss: The Early Pages 6/6/2017

Title & date first published

  • 29.  Yesterday March 27, 2016
    • Categories: Cognitive Therapy, Self care, Sue’s Musings
    • Keywords: ACCEPTS, comparison, contributing, DBT, pity

Do you have suggestions for keywords? Please let me know here or send me an email at light2sight5153@gmail.com.

Sue’s New Page 6/5/2017

One of our readers asked a question about where to get the telescopic glasses that Sue uses to watch TV & do similar tasks.  In tracking down the MaxTV glasses by Eschenbach, Sue found a pair that was quite a bit cheaper so she ordered them. This is her review of them and some information about several text-to-speech readers.

Comparison Shopping

  • Categories: Low Vision Aid, Sue’s Musings, Technology, Tips for living with low vision
  • Keywords: assistive technology, Dan Roberts, Daniel Roberts, Enhanced Vision, Eschenbach, KNFB reader, Living Well with Low Vision, Max TV, MaxTV, telescopic glasses, telescopic lenses

Vision Loss: The Early Pages 6/4/2017

Title & date first published

  • 27.  Toy Story, Too March 26, 2016
    • Categories: Diagnosis: Newly Diagnosed, Eschenbach, Financial, Low Vision Aid, Technology: Phone/Tablet/Computer
    • Keywords: Financial, handheld magnifier, Low Vision Aid, Technology: Phone/Tablet/Computer
  • 28.  Taxman March 26, 2016
    • Categories: Diagnosis: Newly Diagnosed, Financial, Video
    • Keywords: deductions, disabled taxpayers, federal tax, free tax preparation, IRS, macular degeneration tax breaks, tax breaks for visually impaired

Do you have suggestions for keywords? Please let me know here or send me an email at light2sight5153@gmail.com.

Sue’s New Page 6/3/2017

This is the final page in Sue’s response to a follower who brought up the subject of what happens to communication when a visually impaired person cannot see nonverbal cues.  Can we learn to recognize emotional content by listening to a person’s voice?

Improving Communications: Part 3 

  • Categories: Research, Self care, Sue’s Musings, Tips for living with low vision
  • Keywords: communication, communication styles, disability, language therapist, loneliness, nonverbal communication, nonverbal cues, social isolation, speech therapist, Thomas Pocklington Trust

Sue’s New Page 6/1/2017

Sue continues to write about communication when visual impairment reduces the ability to interpret visual cues.  Who is responsible for ‘fixing’ it when there are problems?

Improving Communication: Part 2

  • Categories: Sue’s Musings, Tips for living with low vision
  • Keywords: Adult UK sight loss pathway, communication repair strategy, communication skills, Eye Clinic Liaison Officers, language therapist, nonverbal communication, social isolation, speech therapist, support groups, UK Vision Strategy, visual cues

Vision Loss: The Early Pages 6/2/2017

Title & date first published

  • 25.  Soothe Thyself  March 25, 2016
    • Categories: Cognitive Therapy, Diagnosis: Newly Diagnosed, Sue’s Musings
    • Keywords: 5 senses, DBT, five senses, self-soothing, stress
  • 26.   Toy Story March 25, 2016
    • Categories: Diagnosis: Newly Diagnosed, Low Vision Aid
    • Keywords: Blind and Visual Services, BVS, CCTV, Eschenbach, Low Vision International, magnifier, magnifyer, Magnilink

Do you have suggestions for keywords? Please let me know here or send me an email at light2sight5153@gmail.com.

Sue’s New Page 5/30/2017

We are always happy to receive questions from our email followers and Facebook group members.  Sue has written 3 pages about a recent observation/question about how isolating it can be to not be able to pick up on social cues because of visual impairment.  Here’s the first page…

Improving Communication: Part 1

  • Categories: Depression, Self care, Self Help, Sue’s Musings, Technology: Phone/Tablet/Computer, Tips for living with low vision
  • Keywords: aging, assistive devices, assistive technology, depression, facial recognition, loneliness, recognizing faces, social isolation