Sue’s New Post 7/12/2017

What do you do when you have an especially bad day?  If you’ve just gotten a diagnosis of AMD, you may be extremely upset and wonder when and if you will be able to accept it.  Sue talks about how we can turn a bad situation into acceptance or at least turn towards positive functioning. And she shares the Mark Twain quote: “The more I learn about people, …

The More I Like My Dog

  • Categories: Cognitive Therapy, Sue’s Musings
  • Keywords: turning the mind, distress tolerance, DBT

Do you have any suggestions for other categories or keywords?  Let me know in a comment here or send me an email at light2sight5153@gmail.com.

 

Sue’s New Page 7/11/2017

What do geese flying in formation have to do with the risk of suicide?  Why does Sue tell us to…

Be a Goose

  • Categories: Self care, Sue’s Musings
  • Keywords: mental health, social connection, social network, suicide, support

Do you have any suggestions for other categories or keywords?  Let me know in a comment here or send me an email at light2sight5153@gmail.com.

Sue’s New Page 7/10/2017

If you have wet AMD, you know how important it is to keep up with the treatments that you are getting.  If you don’t, the result could be retinal scarring.  That’s not the only reason it can occur, though.  Read about it here and then repeat after Sue…

I Promise

  • Categories: Non-AMD Eye Problems, Research, Symptoms, Treatment, Wet AMD
  • Keywords: macular hole, macular pucker, membrane peeling, retinal scarring, vitrectomy

Do you have any suggestions for other categories or keywords?  Let me know in a comment here or send me an email at light2sight5153@gmail.com.

New Page 7/9/2017

Lin/Linda here with a page.  Do you have or have you had a parent or sibling with AMD?  Was their experience so upsetting that you fear the same fate?   When I look back at what help my dad had when he had advanced AMD (geographic atrophy), he had very little beyond a handheld magnifier.  Today he could have watched TV with the MaxTV glasses and audio description, could have read the magazines & newspapers he loved with a tablet or smart phone on a stand, could have read a menu in a restaurant with a smart phone magnify app.   And he might have been able to sign up for the upcoming phase 4 trial of the first treatment for geographic atrophy!

Timeline Part 1: Advances in Treatment & Care for People with Macular Degeneration

  • Categories:  Diagnosis: Newly Diagnosed, Dry AMD, Future, Low Vision Aid, , Nutrition, Research, Self care, Technology, Technology; Apple, Technology: Android, Technology: Phone/Tablet/Computer, Testing, Tips for living with low vision, Treatment, Wet AMD
  • Keywords: AMD developments, Americans with Disabilities Act, Android, apple, AREDS, AREDS2, audiobooks, Avastin, baby boomers, CCTV, clinical trials, e-book reader, e-books, Eylea, facebook, fluorescein fundus, Google, GPS, history of AMD treatment, iPad, iPhone, large print books, large print calculators, laser treatments, Lucentis, mac, Macugen, not your parents AMD, OCT, research, senile macular degeneration, telescopic implant, VoiceOver, wearable technology, Windows, World Wide Web

Do you have any suggestions for other categories or keywords?  Let me know in a comment here or send me an email at light2sight5153@gmail.com.

 

Sue’s New Page 7/8/2017

“It’s not fair.”  Have you said this or has someone said this to you about your AMD? Is this disease a punishment for something you did or didn’t do in your life?  Is good vision a reward for a virtuous life?  Is it productive to dwell on the fairness of this diagnosis?  Someone suggested that Sue just needs a …

Good Knock on the Head

  • Categories: Sue’s Musings
  • Keywords: It’s not fair, fairness, things people say

Do you have any suggestions for other categories or keywords?  Let me know in a comment here or send me an email at light2sight5153@gmail.com.

Sue’s New Page 7/7/17

Many of us – Sue and I included – have had a first-degree relative with AMD (parent, sibling, child).  My dad was diagnosed in 2005 and lived with geographic atrophy until his death in 2012.  During that time he was the primary caregiver for my mother who had Alzheimer’s Disease.  The only resources he had available were handheld magnifiers and AREDS supplements (not AREDS2, those results weren’t released until 2013).  Sue has geographic atrophy now and what a difference a decade has made! It is DEFINITELY…

Not Your Parents’ AMD

Tomorrow I’ll be publishing my page “Timeline: Advances in Treatment & Care for People with Macular Degeneration”.   You may be surprised at how much of what we have now has been developed in the past decade!

  • Categories: Diagnosis: Newly Diagnosed, Dry AMD, Future, Low Vision Aid, , Research, Self care, Sue’s Musings, Technology, Technology: Phone/Tablet/Computer, Tips for living with low vision, Wet AMD
  • Keywords: audio descriptive services, BARD, books, CCTV, clinical trials, glasses to watch TV, handheld reader, iPad, Justand, KNFB reader, maxTV glasses, monocular, newspapers, research, TV glasses, ZoomText

Do you have any suggestions for other categories or keywords?  Let me know in a comment here or send me an email at light2sight5153@gmail.com.

 

Sue’s New Page 7/6/2017

What does ‘mortal coil’ mean?   Wikipedia says it’s “a poetic term that means the troubles of daily life and the strife and suffering of the world. It is used in the sense of a burden to be carried or abandoned…”  Sue gives us research that tells us “…there really is such a thing as a self-fulfilling prophecy when it comes to aging, disability and, yes, even death. Believe you are no longer competent and able to engage in life and that is exactly what will happen.”

Mortal Coil

  • Categories: Sue’s Musings, Tips for living with low vision
  • Keywords: disability, mortal coil, self-fulfilling prophecy, senior citizens, seniors

Do you have any suggestions for other categories or keywords?  Let me know in a comment here or send me an email at light2sight5153@gmail.com.

Sue’s New Post 7/5/2017

Not being able to drive can be one of the biggest challenges of having a vision impairment.  Sue has a circle of people who help her get where she wants to go but she is always concerned about whether she is asking too much and being a burden especially when she asks for…

Special Favors

  • Categories: Sue’s Musings, Tips for living with low vision
  • Keywords: rides, transportation, asking for favors, being a burden

Do you have any suggestions for other categories or keywords?  Let me know in a comment here or send me an email at light2sight5153@gmail.com.

 

Sue’s New Page 7/4/2017

Sue, like many people, has found that yoga is more than just good for the body, it’s good for the spirit as well.  Read on to find out what yoga has to do with the Rolling Stones, Wonder Woman, Supergirl and the…

Cowardly Lion

  • Categories: Inspiration, Sue’s Musings
  • Keywords: courage, virtues

Do you have any suggestions for other categories or keywords?  Let me know in a comment here or send me an email at light2sight5153@gmail.com.

Sue’s New Page 7/3/2017

Sue gives another ‘helpful household hint’, this one related to appliances including how to possibly get help replacing them.   She also tells us what happens when our clothes dryer is…

Full of Lint

  • Categories: Financial, Sue’s Musings, Tips for living with low vision
  • Keywords: Low Income Energy Assistance Program, low income

Do you have any suggestions for other categories or keywords?  Let me know in a comment here or send me an email at light2sight5153@gmail.com.

Sue’s New Page 7/2/2017

Have you been told there is nothing more that can be done medically about your AMD? If you have dry AMD, you probably HAVE heard that. How do we cope when we face news like this?  Sue shares coping skills from DBT that can help us in the midst of a crisis (acronym IMPROVE) and coping skills that can help us endure in the long term (acronym ACCEPTS).  What do the letters stand for?   Read how to use them to…

Keep On Keeping On

  • Categories: Cognitive Therapy, Sue’s Musings, Self Help: Anxiety, Self Help: Depression
  • Keywords: ACCEPTS, DBT, distress tolerance, IMPROVE

Do you have any suggestions for other categories or keywords?  Let me know in a comment here or send me an email at light2sight5153@gmail.com.

 

Sue’s New Page 7/1/2017

We love to hear from our readers.  We thank A.F. for her email about what others said to her when she told them about the AMD in one of her eyes (“At least you have one good eye!”).  Sue writes about why that is so stressful and also why we fear going blind.

One Good Eye

  • Categories: Diagnosis: Newly Diagnosed, Tips for living with low vision
  • Keywords: aging, fear of loss of sight, sensory loss

Do you have any suggestions for other categories or keywords?  Let me know in a comment here or send me an email at light2sight5153@gmail.com.

Sue’s New Post 6/30/2017

We continue to report on research being done into various aspects of macular degeneration.  There have been several drugs used to treat other diseases that are possibly helpful in treating AMD – in this case it’s doxycycline which is given to people and animals who’ve been bitten by a tick.  It may become a treatment for geographic atrophy.

Biochemistry Redux

  • Category: Dry AMD, Research, The Science Stuff
  • Keywords: clinical trials, complement pathway, complement system, complementary immune system, doxy, doxycycline, geographic atrophy, inflammation, Oracea, oxidative stress

Do you have any suggestions for other categories or keywords?  Let me know in a comment here or send me an email at light2sight5153@gmail.com.

 

Sue’s New Page 6/29/2017

Why do we put off doing some things?  Are they things that make us uncomfortable?  Is there anything we can do about it?  Why do I ask so many questions? ::grin::

Stop Procrastination…NOW!

  • Categories: Cognitive Therapy, Sue’s Musings
  • Keywords: acceptance, negative reinforcement, procrastination

Do you have any suggestions for other categories or keywords?  Let me know in a comment here or send me an email at light2sight5153@gmail.com.

Sue’s New Page 6/28/2017

If you are not familiar with the word “kvetch” it is based on a Yiddish word for “complain” (verb) or “one who complains” (noun).  Sue’s not a kvetch but sometimes she just has to vent especially when things just don’t go as smoothly as she plans.  Is complaining always effective and helpful?

Kvetch, Kvetch, Kvetch

  • categories: Cognitive Therapy, Sue’s New Page
  • keywords: complaining, journaling, kvetch

Do you have any suggestions for other categories or keywords?  Let me know in a comment here or send me an email at light2sight5153@gmail.com.

 

Sue’s New Page 6/27/2017

Sue says it best: “If I had to define our ‘mission’ here, I would have to say part of it needs to be normalization of vision loss. Acceptance. Not complacency with avoidable blindness or an attitude of throwing up your hands in the face of unavoidable blindness. We cannot stop fighting vision loss and say it is inevitable. Instead I would like to see us work towards a more generalized acceptance and understanding that there are millions of us and we can and should be part of the community. The more we get out there, the more we will be part of the social landscape. As we adjust to our vision loss within our society, society can adjust to us.”

Our Mission

What is YOUR mission? Tell us about it.

  • Categories: Inspiration, Sue’s Musings, Tips for living with low vision
  • Keywords: community, our mission, assistive technology

Do you have any suggestions for other categories or keywords?  Let me know in a comment here or send me an email at light2sight5153@gmail.com.

Sue’s New Page 6/26/2017

How well can you see in the dark?  Despite being legally blind, Sue can see better at night without a flashlight! She talks more about the “lamp stuff” that is still BIG news and also about research in the UK where they are working on a delivery system that would mean no injections in the eye…that would be GREAT news indeed!

Geez, It’s Dark in Here!

  • Categories: Dry AMD, Research, Sue’s Musings
  • Keywords: complementary immune system, complementary system, dark adaptation, GA, geographic atrophy, inflammation, lampalizumab, low-luminence visual acuity, night vision

Do you have any suggestions for other categories or keywords?  Let me know in a comment here or send me an email at light2sight5153@gmail.com.

Sue’s New Page 6/25/2017

Sometimes I get tired reading about Sue’s schedule! She does, luckily, understand the benefits of balance of activity with rest especially when she runs…

Out of Gas

  • Categories: Sue’s Musings, Self care, Cognitive Therapy
  • Keywords: balance, cortisol, Deepak Chopra, exercise, rest, Sanja Gupta, sleep, stress hormone, weight

Do you have any suggestions for other categories or keywords?  Let me know in a comment her or send me an email at light2sight5153@gmail.com.

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.

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