Author: Linda Moore

Sue continues to wait to hear if she’ll be invited to participate in a stem cell clinical trial being planned at Wills Eye Hospital in Philadelphia. She writes about a recent article “Researcher ‘cautiously optimistic’ about future of regenerative medicine to treat AMD.” Dr. Vavvas reports where stem cell research is currently, and where he predicts it will be in the future. He warns about “false hope.” Sue writes about where HER hope is and asks…

Where’s Your Hope?

On the subject of hope, we have quite a few guest authors who share their stories, stories of challenges, fears, and also of hope.

Our Guest Authors: Their Stories

 

Sue writes about tedium.  What’s that? Partly, it’s…

Same Stuff Different Day

AREDS/AREDS2

This weekend we’re having a big discussion of the AREDS2 supplements. Do you think that you know all about them? Take the quiz to find out.

Take the Quiz

It’s a complicated topic but I hope I can answer some of your questions in my Short Answer to Should I take the AREDS/AREDS2 supplement?

This is the second year that Sue participated in Summer Academy on Career Day.  Summer Academy is for kids with visual impairment.  There were totally blind kids (“no light perception, no nothing”) who were facing their fears and doing amazing things. “They faced their fears daily,” Sue writes. Since there’s no camp (yet) for ‘big kids’, she’s lining up her adventures.  She has chosen to…

Rage, Rage Against the Dying of the Light

From 2016

Sue sometimes had problems finding things.  Now, with low vision, it happens more often and is more frustrating.  Where are her things going? Maybe to ….

A Black Hole?

From 2017

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

 

With over 600 pages, Sue’s journal continues to grow.  We added a rating system last year.  This is the result of those ratings.  We encourage you to continue or to start rating which gives us great feedback!

Sue’s Best Pages – Part 3

Other Compilations

Recommended Pages & More about Sue

Dealing with the Emotional Reaction to Vision Loss

Sue’s Toolkit – 2 Years Later – Part 1

Sue’s Toolkit – 2 Years Later – Part 2

Sue’s Musings

There are currently 4 pages in this series.  Start here & you will go from one to the next.

Sue’s Musings: short summaries of her pages starting from the beginning

Sue regularly reports on the latest advances in research. APL-2 is a promising treatment for dry AMD.  The big news is that it’s been ‘fast tracked’ which means it’s been given priority status with the FDA who approves such things for use with patients.  If you are concerned that the drug companies don’t want to develop drugs for those with AMD, Sue shares the earnings for two big companies. That means there’s…

Gold in Them There Eyeballs

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

Sue had a meal, ran some errands, and stopped at a low vision store near her.  She was able to try IrisVision, a headworn magnifying device that uses a Samsung smartphone in a virtual reality (VR) headset.  She writes about what she liked and what she didn’t about it.  All in all, she decided it was…

A Pretty Good Monday

From 2017

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

 

 

 

There are many ways we can get things done. Sue writes about one of them: commitment.  We make commitments all the time, but we might not be aware of them.  When we make a commitment to you who journey with us, it helps us to continue to work toward meeting our goals.  We also watch with you as researchers are committed to finding a cure. So, the word of the week is…

Commit!

From 2017

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

One of the most difficult-to-accept consequences of AMD is not being able to drive. We have members of our Facebook group and others who have said that they continue to drive “but only on roads I know.”  Does it matter how far you drive if you can’t tell the difference between a…

Mailbox or Child?

If you’ve not read the first page of Sue’s journal, we encourage you to do so.  She writes:

June 2015

I am driving down Route 11 with the windows open. Something gets in my right eye. No biggie. Wipe it out. With my right eye closed, the car in front of me disappears. Oh shit. Open the right eye again and the car in front of me is back. Close the right eye again and it disappears. There seems to be a problem here.

In The Beginning

There’s quite a lot of research in the works.  Sue observes that much of the successful clinical trials have been for treatment of wet AMD.  That’s frustrating for those with dry AMD. Sue did get her carpet shampooed which she sees as a miracle, so she concludes that miracles can happen. Hang in there…

Denizens of the Dry Side

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

For some rare conditions (AMD is not considered one but Stargardt’s is), developing treatments for them is difficult because companies may not make money on them or recover the cost to develop them.  In the US, the FDA provides funding for some of these…

Orphan Drugs

From 2016

This is a follow-up to yesterday’s post about Sue’s 100th page (About Our Project).

Time Flies When You’re [not] Having Fun