Category: Sue’s New Page

For many of us,  high school and college are long ago and far away.  Do you get nostalgic?  Is that a good thing to do or not?  Read why Sue says that remembering good things will help us to be able to say…

I Got This

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 a page that includes the puppygirls, thanks to ‘her people’, online magazines, immunosuppressants, and retinitis pigmentosa, Sue concludes that it is getting…

Brighter Every Day

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!

As Sue comes closer to the date of retirement from her job at the school, she’s surprised to hear some of what her co-workers are saying about it.   It seems that they are thinking of the expectations for THEIR retirement and they are projecting their hopes onto her.    That got her to thinking about…

The Power of Expectations

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 think you have seen the picture of 2 little boys each holding a ball that is shown without any modification and then shown with a greyish ‘blob’ obstructing their faces with the rest of the picture blurry.  It was published by the NIH and is used to show what can happen in AMD.   No one questioned this representation until The Macular Partnership recently created 6 new variations & showed it to 6 people…and got 6 different answers!  We’d like YOU to look at these pictures to help us in…

Picturing AMD

I have drusen, does that mean I have macular degeneration?

Answers

From http://www.eyephysiciansoflongbeach.com/los-angeles/retina-center/macular-degeneration.htm
“No, not necessarily. About 50% of the population will show hard drusen and almost 100% the population above 50 will have at least one druse, but many will not develop macular degeneration. An examination by your doctor will help you better understand your risk and what to do about treatment.”

From http://www.webrn-maculardegeneration.com/macular-drusen.html
“Not necessarily. Many individuals with some drusen do not go on to develop the visual symptoms of ARMD. From a clinical standpoint, drusen must attain a threshold in numbers, size, and shape for them to become a matter of concern to ophthalmologists.” This article goes on to talk about drusen at the various stages of AMD, the difference between hard and soft drusen and can you prevent, slow down or reverse AMD.

From https://www.enhancedvision.com/low-vision-info/eye-conditions/what-are-macular-drusen.html
Article answers: what are drusen, types of drusen and questions for your doctor.

 

First, there was the news from the UK’s Moorfields Hospital in London that stem cell-derived RPEs on a patch of material had improved the vision of 2 people with wet AMD.  Recently, similar news from the US that stem cell-derived RPEs on a patch of material had improved the vision of 2 people with geographic atrophy (advanced dry AMD).  What do they have in common?  If you live in California or Arizona, you might be able to get…

The Patch

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!

Stem cell research is very much in the news, not only in studies for macular degeneration but many other diseases as well.   Those working in this area have battled regulatory restraints for some time but it looks like much of that is over and stem cell research is moving on quickly.   In the area of AMD, several research projects are following…

Different Paths

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’s DBT webinar is one of the projects that has been keeping her busy.    She writes about some of the new skills she’s learning.  What do putting ice on your face or sucking on sour candy or naming the 50 states have in common?    Read and find those answers and also what it is that she says is…

All You Have to Lose

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!

 

 

Sue continues to discuss stem cell research.  Stem cells can be harvested from various sources and in this page, Sue covers the sometimes-controversial topic of embryonic stem cells.  We respect an individual’s right to object to their use.  Sue’s goal was simply to provide a…

Dissemination of Ideas and Facts

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

In her previous page, Sue wrote about the first 2 items in the article Nine Things To Know About Stem Cell Treatments.   The first item on the list is “Currently, very few stem cell treatments have been proven safe and effective.”  The second is “There is something to lose when you try an unproven treatment.” She finishes these 2 with a discussion of finances, specifically, what you may have to pay for (travel, there may be lost wages) and what you should NEVER pay for (to be included in a clinical trial).  And then there’s the [unrelated] case of the…

Disappearing Fingerprints

Headworn Magnifiers

Here’s a good article about the head mounted (also called headworn or head worn) magnifiers, include the general advantages & disadvantages and reviews of some of the popular devices.

Head Mounted Electronic Magnifiers

 

Even though 90% of the people with AMD have the dry form, dry AMD seems to be underrepresented – even ‘underappreciated’ in clinical research.  Sue writes about an article where Dr. Philip Rosenfeld  at Bascom-Palmer Eye Institute basically says that dry AMD is a disease that gets…

No Respect

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