Category: Sue’s New Page

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