Author: Linda Moore

If you’ve not heard or read the news from the UK with headlines like “Macular degeneration: ‘I’ve been given my sight back'” (BBC News) and “Scientists on brink of miracle cure for blindness within five years” (Daily Star), I’d be surprised.  While Sue and I are very positive people, we do not want you to put your hope in something that we do not believe will be available in five years, there’s just too much else that needs to be done.  We offer for your consideration…

Another Cautionary Tale

It’s been 2 years since Sue started writing her journal pages and I added content from my research.  With all that content, we know it is hard to know where to start if you’ve not been following from the beginning.  Earlier this year I went through her journal pages and highlight some of her words to help you to find pages that may be helpful to you.

There are 4 Sue’s Musings pages, you can start here:

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

I know that some of you save your favorite journal pages. Do YOU have a page you’d like to recommend?  If you do, add it in the comments section or email you recommendations to me at light2sight5153@gmail.com.  Thanks!

In Sue’s previous page, she mentioned drusen but didn’t go into detail.  What is it?  You can find out why Sue calls it…

Eye Poop

You can read Sue’s previous page What’s the Difference which is about the difference between wet and dry AMD.

---

It’s been 2 years since Sue started writing her journal pages and I added content from my research.  With all that content, we know it is hard to know where to start if you’ve not been following from the beginning.  Earlier this year I went through her journal pages and highlight some of her words to help you to find pages that may be helpful to you.

There are 4 Sue’s Musings pages, you can start here:

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

I know that some of you save your favorite journal pages. Do YOU have a page you’d like to recommend?  If you do, add it in the comments section or email you recommendations to me at light2sight5153@gmail.com.  Thanks!

 

 

One of the questions we often get is about wet AMD vs dry AMD. Sue answers the question…

What’s the Difference?

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

Sue shares some money-saving tips as well as her advice to get power strips for your electric plugs.  She also writes about why the risk of developing AMD has been decreasing by 60% every generation.  She says “The folks who wrote the JAMA (Journal of the American Medical Association) article suggested we just may be healthier. Rates of cardiovascular disease and dementia are also down.” So that means…

Things Are Getting Better

It’s been 2 years since Sue started writing her journal pages and I added content from my research.  With all that content, we know it is hard to know where to start if you’ve not been following from the beginning.  Earlier this year I went through her journal pages and highlight some of her words to help you to find pages that may be helpful to you.

There are 4 Sue’s Musings pages, you can start here:

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

I know that some of you save your favorite journal pages. Do YOU have a page you’d like to recommend?  If you do, add it in the comments section or email you recommendations to me at light2sight5153@gmail.com.  Thanks!

 

A few days ago, I published Sue’s page about what looked like the very positive results of phase 2 clinical trials of APL-2 to stop the growth of geographic atrophy lesions.  Phase 3 trials are to start sometime in 2018.  In that page, I mentioned we’d seen some contradictory information.  We have both studied what we found and Sue has written about what is…

Another $64,000 Question

It’s been 2 years since Sue started writing her journal pages and I added content from my research.  With all that content, we know it is hard to know where to start if you’ve not been following from the beginning.  Earlier this year I went through her journal pages and highlight some of her words to help you to find pages that may be helpful to you.

There are 4 Sue’s Musings pages, you can start here:

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

I know that some of you save your favorite journal pages. Do YOU have a page you’d like to recommend?  If you do, add it in the comments section or email you recommendations to me at light2sight5153@gmail.com.  Thanks!

 

One of the first questions people ask when they get a diagnosis of AMD (after the shock wears off) is “What can I do to cure it?”  And one of the sources of information is other people with the same disease.  Sue has written about some of the things to be wary of when someone tells you…

“Take This & You’ll Be Cured!”

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

We continue to report the results of current research. The NEI (National Eye Institute), the people who bring us a lot of the results of AMD research, will soon be starting a study of the natural history of the development of AMD.  And there is news of a possible way to stop the growth of geographic atrophy lesions by using a drug called APL-2.  When Phase 3 starts sometime in 2018, it may be…

Supplies are Limited, So Act Now!

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

 

 

Do you play the “if only” and “I wish I had” game?  That’s what is considered to be self-blame which is often part of being depressed. Sue shares information about why self-blame can have a negative effect on how we adapt.  We can look at ourselves & ask “what happened? why me?” but read why Sue writes that it’s important to realize that having AMD is…

Not My Fault, Not Your Fault

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

Double whoops! I found 2 more pages that did not go out as emails (they were posted to the Facebook group) AND I found out WHY it happened & hopefully fixed it.  Sometimes you just cannot trust an ‘update’ to software.  ::sigh::  Anyway, thanks for your understanding.

(February 19th)  With as many things as Sue does on a regular basis, she chose to write this page on a Saturday night.   Why is she cleaning out her email inbox? She says…

I Am Bored

(February 25th) Today is the 2-year anniversary of the day I published Sue’s first page on our website.   That means that it’s 2 years since Sue started on her journey with advanced dry AMD which is called geographic atrophy.  She’d been diagnosed with dry AMD    She has learned a lot and shares…

My Advice to Those Newly Diagnosed

New Website Accessibility Features

I very much appreciate feedback on the design of  the website.  There are some things I can easily change and some things that I cannot.  I received a recent comment about the color and boldness of the font in the email that you receive if you are a follower of the website.   The heading is blue as are the links to pages outside of the email (called hyperlinks) and some people have a problem reading them.  I am working on it but it’s not an easy thing to change.  If you cannot read the email, click on the title and it will take you to our website where you can read the post using the new accessibility features.

 

 

I have added a way that you can control some features of the appearance of pages and posts on the website – this doesn’t apply to the email.  You will now see a small icon on a blue background in the upper left of the pages & posts (I wish I could make it bigger but I can’t).

Click on this icon and you will get a list of options:

• contrast dark – the background will turn dark.
• contrast white – the background will turn white.
• readable font – will change the font to one that is easier to read.
• underline links – I think all of mine are underlined but this would fix ones that are not underlined.
• Three sizes of the letter A – you can choose the second A for a little larger font, the third A for the largest font.  You can then return to the original size font by choosing the first A.
• cancel accessibility – this will clear any options that you chose and return the page or post to its original format.

Please let me know if you have a problem with this new feature by putting a comment here or email me at light2sight5153@gmail.com.

 

 

Whoops, I just discovered that even though I shared the information below with those in the Facebook group, the emails did not go out for these 2 pages.  I don’t have a good excuse so I won’t give one! ::grin::

(February 27th) Even though Sue was doing something, she didn’t consider it ‘productive’ so she decided to continue to go through her email to give us…

News Briefs

(March 2nd) Sue found an article about a study done called the Coping with Vision Loss Study.  It talks about the anxiety and depression that can come with the diagnosis of AMD.  It covers many of the things we’ve already talked about such as how to maintain independence by using technology.  Whatever you decide to do…

Keep an Open Mind

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