Author: Linda Moore

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

February 25th is the 2 year anniversary of our website.  During these 2 years, Sue has written over 500 journal pages and there have been over 600 posts!  We have been busy, haven’t we? ::smile::

With all that content, we know it is hard to know where to start if you’ve not been following from the beginning.  In honor of our anniversary, from now until February 25th, I am going though the journal pages and highlighting some of Sue’s words to help you find pages that may be helpful to you.  There may not be a post in this series each day.

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’s New Page 1/17/2018

Skiing is something that Sue loves to do.  It, however, evokes one day on the slopes 2 years ago that she associates with vision loss.  That hasn’t stopped her, she went 3 times last year and hopes to do the same this year.  It may not work out well but at least she’ll be able to say she tried.  And she advises caregivers/family/loved ones to…

Let Us Try

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 New Page 1/16/2018

Sue continues to try the app Seeing AI.  She tried the scene and person recognition options and she was…

Underwhelmed

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 New Page 1/15/2018

Sue writes “How can sight loss be a challenge? Challenges have a chance of being overcome. How am I going to overcome THIS ? I cannot accept this. I can never resign myself to going blind!”  Read more about…

Sight Loss as a Challenge

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

Correction: New Guest Author 1/14/2018

Whoops, I need to correct this sentence in my previous post: “Both [Bob & Sue] have been accepted into clinical trials investigating treatments for advanced AMD/Geographic Atrophy (GA). ”  Sue has not been accepted into clinical trials at Wills Eye Hospital, she has been referred.  Unfortunately, that makes a difference.

New Guest Author 1/14/2018

Sue and Facebook group member Bob O’Connell have the same highly-respected ophthalmologist Dr. Carl Regillo at Wills Eye Hospital in Philadelphia, PA.  Both have been accepted into clinical trials investigating treatments for advanced AMD/Geographic Atrophy (GA).   Read Bob’s story to find out how he got to this point and how he’s come to a decision about one of the clinical trials.  And find out what he means by…

Impossible Dream? Part 1

We are looking for people to write for our project.  All you have to do is to write your story and a short biography, send it to me and I will edit it and put it into the appropriate format for the website.   You may be surprised at how good it feels to share how life has been for you, the good news and the no-so-good news, since your diagnosis.  These stories give assure others that…

YOU ARE NOT ALONE!

Our Guest Authors: Their Stories

New Guest Author 1/13/2018

A few days ago I published a post from Facebook group member Vickie Hoecherl who compiled quotes from a recent article: Do our choices or our genes impact the development & progression of AMD?  She has written about her journey with AMD for our Guest Authors section.  You find her story here…

Always a Silver Lining

We are looking for people to write for our project.  All you have to do is to write your story and a short biography, send it to me and I will edit it and put it into the appropriate format for the website.   You may be surprised at how good it feels to share how life has been for you, the good news and the no-so-good news, since your diagnosis.  These stories give assure others that…

YOU ARE NOT ALONE!

 

 

 

Sue’s New Page 1/11/2018

Sue has been very busy so there hasn’t been a page published every day.  She is facing a major life decision, one that she would have eventually faced but has come sooner partly because of the changes in her vision.  She asks the question “…how do we know when it is time to give something up? A job, a car, whatever.”

Tough Decisions

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

UPDATED: Are there eye drops instead of injections to treat wet AMD?

The short answer to that question: not yet.  There is a major problem in developing eye drops for AMD.  One article states it as “Ophthalmic drugs have traditionally been administered topically, which in general provides therapeutic levels to the anterior (front) chamber of the eye but not to the posterior (back) segment. Therefore, topical administration of drugs has been largely infeasible for posterior segment diseases such as AMD and diabetic macular oedema.  In contrast, intravitreous injection [for wet AMD] provides direct delivery to the posterior segment and allows therapeutic levels to be attained.”

Here are the studies so far (there is other research that I’m not including that is currently only being done with animals).  Keep in mind that there are four phases to clinical trials.  Click here for more information about clinical trials.

  • PAN-90806/Panoptica: topical Lucentis
    • clinicaltrials.gov Phase I completed
    • “A phase I/II trial of the next generation of the formulation is set to begin in the first and second quarters of 2017.” Click here for an article.
  • OHR-102 (originally “Squalamine”): squalamine has been shown to interrupt and reverse the process of angiogenesis; used in conjunction with Lucentis injections, goal is to reduce number of injections or eliminate them.
    • clinical trials phase III not recruiting subjects,  completed in mid-2019.
    • click here for an article.
    • Temporary suspension of clinical trial phase 2, not due to safety issues.  Going forward with phase III.  “Effectiveness: Unfortunately, Squalamine Eye Drops failed to decrease the average number of Lucentis injections required by the study participants. This was the primary goal of the clinical trial and the result was disappointing, both to researchers and to people with wet AMD, who were hoping that Squalamine Eye Drops could possibly reduce, or even eliminate, the need for eye injections.”
  • CPP: cell-penetrating peptide (CPP) can be used to deliver therapeutically relevant doses of ranibizumab (Lucentis) and bevacizumab (Avastin)
    • University of Birmingham, England
    • click here for an article.
    • “This is exciting for both patients and practitioners,” said Dr. Jayanth Sridhar, assistant professor of clinical ophthalmology at the Bascom Palmer Eye Institute. “But this was a preliminary study in animal eyes only. Further research must be undertaken in human subjects first to establish safety, and then to establish effectiveness. Still, this study offers at least a glimmer of hope that in the coming years we may see a topical drop option emerge to supplement or replace injections.”
  • OC-118: “solubilizing nanoparticle” technology
    • Article Jan. 6. 2018 says “This technology, the company hopes, can boost the drug’s ability to reach the front and the back of the eye — something that previous drugs haven’t achieved unless delivered via needle to the eye.” It is currently being looked at to treat Diabetic Macular Edema (DME). I couldn’t find anything to confirm or deny that it could be used to treat AMD.

Updated & verified 1/8/2018

Sue’s New Page 1/8/2018

It’s a new year.  How optimistic are you that 2018 is going to be a year when there will be great strides in our understanding of how the eyes work and knowledge of what can be done when they don’t work properly?  Sue writes “So, optimistic about 2018? Oh, yeah. You just gotta believe. Every small step is progress. Once again: this is the best time in history to be going blind.”  Read why she is…

Optimistic for 2018

Coming soon…A new Guest Author page with the highlights of an Award Lecture from December 2017: “Macular Degeneration Epidemiology: Nature-Nurture, Lifestyle Factors, Genetic Risk, and Gene-Environment Interactions – The Weisenfeld Award Lecture”.

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