Author: light2sight5153@gmail.com

Sue’s an avid reader, always has been.  She continues to read by taking advantage of low vision options for books and for magazines.  She’s found the options that are available for the magazines that she has subscribed to for years.

Get Your Magazines

• Categories: Sue’s Musings, Technology, Tips for living with low vision
• Keywords: BARD, magazines, Nat Geo Traveler, National Geographic, Reader’s Digest

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In addition to sharing her recommendations for good books and where to get them, Sue tells us about research using the eyes of pigs to study drusen.  And if you’ve heard this expression, you can now find out where it came from…

In a Pig’s Eye

• Categories: Research, Sue’s Musings
• Keywords: audio books, audiobooks, BARD, books, Bruch’s membrane, pig, research, retinal pigment epithelium, RPE

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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

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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

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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

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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

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“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

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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

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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

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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

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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

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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

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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

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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

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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

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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

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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

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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

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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

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