Author: light2sight5153@gmail.com

In June of this year, an article was published “Can psychological stress cause vision loss?”. Sue wrote about it in her recent page “Focus.” In this page, she writes about being tired which led to her feelings of frustration and disappointment. Both of them certainly fall into the category of stressors.  She writes about techniques that can help reduce the stress and introduces us to a very interesting website called…

Zen Habits

From 2017

We’ve already talked about preconceived notions.  Here’s another one.  Have you been wearing eyeglasses & had someone question you about them, wondered why the lenses weren’t bottom-of-soda-bottle thick?  Depending on how your vision has been affected by AMD, getting your refractive errors fixed can help.  But the bottom line is that we are not all like…

Mr. Magoo!

 

Sue continues to write about the stem cell study she hopes to become part of.

Stem Cell Study Part 2

From 2016

One of the risks those with impaired vision face is that of falls. AMD affects depth perception, balance, peripheral vision and the ability to see contrast and color.  Sue tells us how yoga can help improve your balance and reduce the risk of falls.

Yoga for You

From 2017

Many of you are working and hope to continue doing so for as long as possible.  Sue writes about some things that can happen when vision loss changes the dynamics of…

Chiefs & Indians

Sue is still waiting to hear if she’ll be invited to be a participant in a stem cell study.  She was given the patient consent document and she goes through it with us.

Stem Cell Study Part 1

From 2016

Have you found that it’s harder to deal with mistakes now that your vision has become poor?  Do you have more self-doubt?  Sue has and she shares what it takes to not let this paralyze you.

I Screwed Up

From 2017

I proposed this topic to Sue because of an article I shared with the Facebook group Re-thinking Antioxidant Supplementation for Macular Degeneration which presents criticism of the AREDS research.  Considering that many doctors recommend the supplements from that research as if they were a ‘treatment’, how do we as patients deal with the conflicting information that we find? As several of the Facebook group members pointed out, it’s not only in this field that we are faced with this (is fat OK or not OK, is coffee OK or not OK, etc).  How do we deal with it?  The question becomes: is there any way of…

Overcoming Uncertainty

Sue’s had a good day/bad day.  It’s hard sometimes to remain optimistic when things aren’t going well.  I’ll let her tell you the story that ends with…

It Might Be That Pony

From 2017

We continue to talk about scotomas/blind spots in terms of Sue’s geographic atrophy.  Do you know where the term came from, what the word ‘geographic’ means? In seas of healthy tissue, there are…

Islands of Damage

The title of this page tells you what Sue has written about. There is also a link in it to a summary of ALL research & developments for both dry and wet AMD as of June 2018.

In the Pipeline for Wet AMD

Spoiler Alert – why should you read Sue’s Journal Pages?

After a year of learning how to deal with her visual impairment both physically and emotionally, Sue has a rather ‘normal for her’ life: At age 64 and with advanced AMD geographic atrophy, she works several jobs, attends regular exercise classes, rides her bike safely, travels, walks her dog, kayaks, attends social events with her friends.   We are not suggesting that reading her journal will ensure you the same results but we hope that Sue’s Journal of Her Journey will be educational and inspirational.

We’ve compiled the first part of a series of Sue’s Best Pages.  If you don’t think you are ready to tackle all 500 of them, here’s our suggestion of where to start.

Sue’s Best Pages: Part 1

When Sue wrote this, much of the country was being held hostage by high temperatures in locations that were not accustomed to them.  Since AMD is often found in those of us of a ‘certain age’, Sue shares some warnings about and tips to prevent dangers from a…

Heat Wave!

From 2016

We love it when you leave comments on our pages and posts.  Sue addresses the most recent one and offers Cookie Monster some advice.

Cookies!

From 2017

A diagnosis that threatens our independence naturally brings fear.   We can, however, establish and maintain INTERdependence which is “dependence of two or more things or people upon each other.”  Have you done something for others, for your community?  It’s never too late to be the…

First Link on the Chain of Kindness

Sue writes about the challenges we all have.  You’ve probably heard this…

When the Going Gets Tough…

2016

How much time do you have on your hands especially if you are dealing with low vision?  How do you decide what to do with that time?  Sue gives us some advice from DBT.

How’s Your Balance?

 

Unfortunately, not all clinical trials give us positive results.  The lampalizumab/”lamp stuff” for dry AMD that we’ve talked about before has failed phase 3.  They’ll be looking at the data to see if there’s something they might have missed. As for the other proposed treatment for dry AMD, the Lumithera Photobiomodulation device, although it is listed on the US clinicaltrials.gov website, it’s listed as “not applicable.”  That’s not necessarily bad news, it means that for those of with dry AMD, we are…

Keeping Our Eyes Open

From 2017

Are you concerned that being visually impaired means you won’t be able to travel & take vacations?  Sue’s found several articles with suggestions, including one where you can go…

Eating Our Way Around the Globe

Sue’s been working in her basement to deal with things that have accumulated over the years.  She’s taking a walk through memory lane.  Too much time there can be counterproductive so she offers some advice about things we can do to be more active, even if it’s storytelling.  We all have…

Stories to Tell

From 2017

One thing Sue and I have in common with many of you is our love of furry critters especially dogs.  You might not expect that there’s anything connecting IBM with them but read on to find out about the…

Puppies!!!

 

It’s been shown that stress and other mental health issues can affect our circulatory system so it makes sense that means they can affect our eyes. Mindfulness and meditation can help us cope with these problems.  Sue writes about one important thing we can do and that is to…

Focus

From 2016

It’s no secret at this point that Sue is a social creature.  She has many friends, several places where she works and two or three exercise classes that she attends each week. These are her priorities and sometimes she has to go to people with demands to help fulfill them.  How does she keep from this becoming a problem?

I Want, I Want, I Want

From 2017

It is so easy to get caught up in all the things that are involved in day-to-life with visual impairment but don’t forget to…

Stop & Smell the Roses

 

If you’ve been reading Sue’s pages, you know that one of her bywords is “productivity” especially since she retired from one of her 3 jobs.  She’s struggling with time management. Part of the process is to set…

Priorities

A year ago, this was on Sue’s mind.

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

Be a Goose

 

 

In 1999, a global initiative was set up for the elimination of avoidable blindness, a joint program of the World Health Organization (WHO) and the International Agency for the Prevention of Blindness (IAPB). Since then, initiatives have been set up and progress has been made.  Sue’s writes about this project called:

Vision 2020: The Right to Sight

From 2016:

Sue started writing her journal pages for reasons she tells us here.  She encourages you to start journaling if you don’t already do that.  We also would LOVE to have YOU write for our website.   The guidelines are included in her page.  The more the merrier!

Your Macular Journal/ey

From 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

 

 

As you know, there are other eye diseases that cause similar vision loss to that of AMD. One of them is Leber Hereditary Optic Neuropathy (LHON) which is a hereditary disease that usually starts in a person’s teens or twenties.  Since Sue wrote about it in a past page,  she’s finding more articles about it.  She writes about one study in which they produced “mutant, transgender, blind mice (don’t ask me) to study the disorder…” We are…

Glad They’re On Our Side

From 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

 

As more people with AMD & other causes of vision impairment learn to use mobile devices to help them remain independent, more software developers release their apps.  Sue wrote about the Apple app Seeing AI in previous pages.  A new app for Android devices has been released by Google. It’s called…

Lookout

Blasts from the Past!

July 3rd, 2016

Dealing with vision loss is exhausting.  There is much more planning that needs to be done, for one thing.  Sue shares one example of this.

Cope Ahead

July 3rd, 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

 

Sue writes about the research into how gut microbes might be involved with AMD.  After watching a Nova program “Wonders: What is Living in You” (there’s a link to it), she’s not exploring how researchers get new gut microbes into people. She considers it:

Pushing the Envelope

From 2017 on this date:

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

This week in the news there was a press release that said that the EU has granted the Lumithera LT-300 a “CE mark for treating dry AMD.” The question on our minds is: what is it, what does it do? Sue offers what she found about it.  We’ll keep you posted as we learn more.

Lights Please!

Spoiler Alert – why should you read Sue’s Journal Pages?

After a year of learning how to deal with her visual impairment both physically and emotionally, Sue has a rather ‘normal for her’ life: At age 64 and with advanced AMD geographic atrophy, she works several jobs, attends regular exercise classes, rides her bike safely, travels, walks her dog, kayaks, attends social events with her friends.   We are not suggesting that reading her journal will ensure you the same results but we hope that Sue’s Journal of Her Journey will be educational and inspirational.

We’ve compiled the first part of a series of Sue’s Best Pages.  If you don’t think you are ready to tackle all 500 of them, here’s our suggestion of where to start.

Sue’s Best Pages: Part 1

Are you using your vision impairment as an excuse not to do the active, fun things that you used to do? There’s lots of evidence that staying active is one way to have a happier and healthier life.  And if you are not doing anything active, it’s a good time to start. Our advice is to…

Go Out and Play!

I’m still taking a trip down memory lane. This is what we posted on 6/27/2017, words that are definitely still important to us:

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

As Sue is waiting for the arrival of her loaner CCTV, she wonders how much equipment is in the homes of people who are no longer with us.  On the latter subject, if you have wet AMD or advanced dry AMD, you are prone to health problems that might shorten your life.  That’s why we believe that…

Forewarned is Forearmed

It’s been over 2 years since Sue and I started this project.  I wondered what she was writing about 2 years ago.  Here is our post & her page from 6/25/2016.

There are some days when our minds are focused on the many concerns we have.  Sue’s advice is to find something positive to distract you.

Driven to Distraction

Everyone who has wet AMD (and those who fear they will develop it) hopes that there will be eye drops instead of injections. Sue reports on a recent article about the 1 / 2 clinical trial with PAN 90806 which is a once-a-day eye drop for wet AMD. The article talks about the drops reducing the “injection burden” which means that they hope eye drops will prevent people from stopping the treatment as many do with the anti-VEGF injections.  Sue asks…

Why Drop Out?

If you missed it, here’s a post Highlight: Summary of Research and Development 2018.

 

Sue and I believe that people generally mean well. Sometimes, though, you hear what is said to you or others with vision impairment, and you wonder where they learned what they said. For instance,  how many times have you been told…

You Don’t Look Blind

Sue’s Musings

Too many pages to read? Here are some of Sue’s quotes with links to her pages.

Sue’s Musings: Then and Now – Part 1 – 1/18/2018

Sue’s Musings: Then and Now – Part 2 – 1/20/2018

Sue’s Musings Then and Now – Part 3 – 1/24/2018

Sue’s Musings Then and Now – Part 4 – 1/25/2018

 

Some days are better than others. On this particular day, Sue found many things that weren’t going her way. She’s become dependent on her CCTV and it is broken so she’s on a quest to get a temporary replacement.  Some days we have…

Patience…or Not

Spoiler Alert – why should you read Sue’s Journal Pages?

After a year of learning how to deal with her visual impairment both physically and emotionally, Sue has a rather ‘normal for her’ life: At age 64 and with advanced AMD geographic atrophy, she works several jobs, attends regular exercise classes, rides her bike safely, travels, walks her dog, kayaks, attends social events with her friends.   We are not suggesting that reading her journal will ensure you the same results but we hope that Sue’s Journal of Her Journey will be educational and inspirational.

We’ve compiled the first part of a series of Sue’s Best Pages.  If you don’t think you are ready to tackle all 500 of them, here’s our suggestion of where to start.

Sue’s Best Pages: Part 1

 

It’s Sue’s last day of working at the school where she’s been for 40 years.  I’ve started a new job in a field I knew nothing about.   It’s not the first time we’ve “leaped” into something and then asked…

Now What?

We love when people share their stories with us.

Read the pages written by our Guest Authors and then write your own! It’s easy, just write your words and send them to me. I’ll edit them and format them into a page or pages.  Hearing the voices of others reminds us that we are not alone!

Send your story or advice to me at light2sight5153@gmail.com.

Research continues to look for ways to make the injections for wet AMD more effective and to last longer between them.   Sue reports on a study that uses x-rays/sealed radiation with anti-VEGF medications to produce…

Combination Therapies

Sue’s Musings

Too many pages to read? Here are some of Sue’s quotes with links to her pages.

Sue’s Musings: Then and Now – Part 1 – 1/18/2018

Sue’s Musings: Then and Now – Part 2 – 1/20/2018

Sue’s Musings Then and Now – Part 3 – 1/24/2018

Sue’s Musings Then and Now – Part 4 – 1/25/2018

Over 2 years ago, Sue looked for promising AMD stem cell research and found Dr. Carl Regillo at Wills Eye Hospital in Philadelphia.  She’s seen him several times and just had an appointment with him. Unfortunately…

The Waiting Game Continues

If you missed it, here’s a post Highlight: Summary of Research and Development 2018.