Category: Sue’s New Page

There continues to be evidence that AMD is not one disease but a collection of them, some of which are based on genetics.  A recent article says “APL-2, a complement C3 inhibitor, has met its primary endpoint in its phase 2 clinical trial, reducing the rate of geographic atrophy (GA) associated with age-related macular degeneration (AMD).”  We have reason to hope for…

Another Potential Treatment

What’s the difference between ‘low vision’, ‘legally blind’, ‘visually impaired’?  Sue helps you to…

Know the Terms

Start at the beginning…

Are these pages the first ones that you’ve read in Sue’s Journal of her Journey with AMD?  We recommend that you click here to read In the Beginning.

 

Lin/Linda here:  I am having difficulties with the software I use to maintain the website.  I will be sending a few posts from days past that I do not think went out.  Sorry for filling up your inbox!

Sue has said this before “This really is the best time in history to be going blind.” In this page she adds “And we in the developed nations are geographically in the best places to be.”

Your Good Fortune

The topic of this page is clean living.  Sue says “Lifestyle changes are one way we can take some of our power back from this disease.” She knows she is a…

That Preachy Zealot

Start at the beginning…

Are these pages the first ones that you’ve read in Sue’s Journal of her Journey with AMD?  We recommend that you click here to read In the Beginning.

A large study which started in 1987 showed some relationship between macular degeneration and sunburns in youth.  Wear your sunglasses, put on sunscreen and…

Rock On

Sue no longer drives but she decided that she should renew her driver’s license for several reasons.  She says she spent the morning acting like…

Someone I Am Not

Start at the beginning…

Are these pages the first ones that you’ve read in Sue’s Journal of her Journey with AMD?  We recommend that you click here to read In the Beginning.

Sue is inquisitive, we know that.  She’s been wondering if there is any information that we can get when we know the ending of a medication name, specifically the drugs ending in -ximab or -zumab.  Turns out there is and you can…

Thank a Mouse

There is so much information out there about AMD that it is hard to keep up!   Read what she found in her…

Piles of Articles

Start at the beginning…

Are these pages the first ones that you’ve read in Sue’s Journal of her Journey with AMD?  We recommend that you click here to read In the Beginning.

As you know, Sue has advanced dry AMD, specifically geographic atrophy. In the next several pages she writes about wet AMD.  With the use of anti-VEGF injections, there’s been…

A Dozen Years of Progress

What was done for wet AMD before anti-VEGF injections?  Here’s a…

Blast From the Past

Start at the beginning…

Are these pages the first ones that you’ve read in Sue’s Journal of her Journey with AMD?  We recommend that you click here to read In the Beginning.

Sue was finally able to get to New York City.  She used her monocular to view art at The Cloisters and animals at the Bronx Zoo.  Read about her overall experience of visiting…

Lions & Tigers & Bears…Oh My!

We both try to keep up with the current findings in the field of AMD.   Sue talks about what she found by…

Reading Modern Retina

Start at the beginning…

Are these pages the first ones that you’ve read in Sue’s Journal of her Journey with AMD?  We recommend that you click here to read In the Beginning.

One of things that the recent eclipse brought out in people is intellectual curiosity.  How can we foster that curiosity despite visual impairment?

Keep On Learning

Sue says “We are very often good pickins for the quacks and scam artists of the world.”  There have been stories of Medicare fraud related to eye care and experimental treatments costing thousands of dollars.  Sue urges…

Keep Your Heads

Start at the beginning…

Are these pages the first ones that you’ve read in Sue’s Journal of her Journey with AMD?  We recommend that you click here to read In the Beginning.

I’m just going to let you read the page to figure out where Sue got THIS idea!  Is it time to take away her Internet access? ::smile::

Counting Toe Hairs

We’ve talked about audio description for TV and movies.   There is also audio description available for some live performances.

Enjoy the Show

Are these pages the first ones that you’ve read in Sue’s Journal of her Journey with AMD?  We recommend that you click here to read In the Beginning.

Sue’s frustrated.  She says “I miss my freedom and flexibility of movement. I want to be able to go where I want to go and do what I want to do when I want to do it. And I don’t want everything I do to be such a damn project!”  Then she feels guilty because she has so many great & helpful people in her life. There’s DBT advice for this but she admits she has…

Some Learning to Do

Visual impairment can change the concept of livability in terms of what resources are available such as access to transportation and accessible features such as audible traffic signals.  Sue found some cities that might be the…

Best Places for Us to Live

Sue keeps busy outside her home.    She says “I am cognizant the time is coming I will be home with…”

Time On My Hands

She’s talked about audio description for live and recorded entertainment.  How do you set it up?  Maybe put out an advertisement saying…

Wanted: Tech Savvy Teen

It was February 2016 when Sue’s vision declined such that she had to take a break from her ‘normal’ life to work with vocational rehabilitation staff who helped her get the devices & training that she needed for her ‘new normal’ life.  More than a year later, some of the things she learned to do differently – such as shopping at Walmart – result in an…

Uneventful Trip

There is power in numbers and the number of people with AMD grows as people are aging and living longer.  We know we are the good guys who can encourage everyone, especially older folks, to have thorough eye exams.  Together we are the…

Good Guy Force

Sue tells us about 2 women in the field of AMD.  Both are involved with stem cell research.

Sisters Are Doin’ It For Themselves

Not everything you hear or read about AMD is accurate or up-to-date.  We found one particular video clip where the information they shared was just wrong.   And be aware that some of what is out there is…

Yesterday’s News

Competence is important to Sue, whether it is that of others or of herself.  She says “Since I had my vision loss, I have an underlying uneasiness about becoming incompetent in my job. When will it happen? Will I recognize it when it happens? Will people cover up for me? And if they cover up for me will I leave my profession with a tarnished reputation? I never had these thoughts before but I have them now.”  To her, competence is about…

Knowing and Doing

Her shared ride transportation continues to be a problem.  Also, she wonders why there isn’t a book “Miss Manners for the Proper Low Vision Sufferer”.   On a more positive note, she has her first visually impaired client.  It’s important to remember that little irritations are the stuff of low vision and…

The Stuff of Life

Things have piled up for Sue.  Her scotoma is getting denser, it’s been rainy and she’s sleepy, and her shared ride transportation continues to waste her time.  It all adds up to…

They Get My Goat

Sue talks about 3 ways to magnify and move images to the healthy part of one’s retina, each with varying price tags.  None of them halt the progression of the disease so…

Caveat Emptor

Can you really accept being a visually impaired person?  How?  Sue tells us “Every day we accept a little more of our new identity and the ways we now have to live our lives. It is an incremental thing.”  Here’s one tool to help…

Turn Your Mind

I’ve told Sue that I am constantly amazed when after 18 months of research we learn something new.   Sue’s been looking for information about how much she can expect her scotomas (blind spots) to progress.  We’ve learned more about how doctors can follow disease progression including what it means when they see this on a particular test…

Shimmering

Sue has times when she feels sorry for herself.  That’s normal when one’s vision loss impacts daily life.  In this page, she says “We all have our setbacks. We just cannot wallow too long. Sometimes it is time for an…

Attitude Adjustment

Many of us have floaters which are not symptoms of AMD.  How do we know when they are ‘normal’ and when you should have them checked out?  If all else fails, consider them…

Cheap Entertainment

 

 

No matter how much we learn, we are always finding new information.  Sue found an article that talks about the fovea, drusen, geographic atrophy, and what happens if wet AMD is not treated.

Always Learning More

There’s more in this article including terms like PED.  Did you know that there are different forms of wet AMD?

Always Learning More and More

 

A year after her worsening vision caused Sue to take a break from what WAS her normal life, she realizes that now she’s writing about…

My Uneventful Life

We’ve discovered that getting answers to questions about what happens when AMD progresses isn’t always easy.  Sue has found that she’s not the only one who thinks that figuring all this out is like…

Playing Clue

When Sue wrote this, it was a little over a year after her vision changed such that she had to take a break from doing some of the things she loved to do.  It was hard to give up some of her freedoms but she was able to get most of them back. She talks about one of them on a…

Beautiful Day for a Bike Ride

Sue loves quotes, here’s one of her favorites from Victor Frankl: “The way in which a man accepts his fate and all the suffering it entails, the way in which he takes up his cross, gives him ample opportunity – under even the most difficult circumstances to add a deeper meaning to his life.”

Meaning and Purpose

One of our readers who is a member of our Facebook group shared her preparation for and experience of driving after not driving for 3 years because of the visual problems from her AMD.   She agreed to let us include what she told us in a series of pages.

The 3 pages are linked together so you can start here and continue to pages 2 and 3:

Behind the Wheel: Part 1

Here are the links to pages 2 & 3:

Behind the Wheel: Part 2

Behind the Wheel: Part 3

If you have any comments, please share them here or come to our Facebook group for our discussion.

Do you know what the rods and cones are in our eyes?  What do they do that is so important? What does that have to do with stem cell research?  Find out and learn why the eye would be an…

Electrician’s Nightmare

We know Sue is hard on parts. What did she do THIS time?  It’s a…

Cautionary Tale