Author: light2sight5153@gmail.com

Are you having problems figuring out what you are seeing when you are looking straight ahead or down at something? People with AMD can develop scotomas which are often referred to as ‘blind spots’ but can be blurry spots, too.  Have you heard of ‘eccentric viewing’ and don’t know what it is and how it relates to these scotomas? Sue explains what it is and how she uses it in several pages.

Not Your Eccentric Relative NEW!

Sue on Assignment: How She Sees What She Sees

Spoiler Alert – why should you read Sue’s Journal Pages?

After less than a year of learning how to deal with her visual impairment both physically and emotionally, Sue has a ‘normal for her’ life. At age 66 and with advanced dry AMD/geographic atrophy, she works, attends regular exercise classes, rides her bike safely, travels locally and abroad, walks her dogs, 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 600+ of them, here’s our suggestion of where to start.

Sue’s Best Pages: Part 1

Website follower, active Facebook group member, and our ace reporter Joann Davis recently attended the seminar ‘Your Eye Sight Matters! 2019’ in Skokie, IL, on September 21st, 2019 . This is one of several awareness programs organized by the Macular Degeneration Association. These seminars are held in various locations in the US.  She’s written 2 pages for us about what she learned.  Thanks Joann!

Sept. 2019 Our Cub Reporter: Notes from an Awareness Program by Joann Davis

Other Guest Author Pages

Read the pages written by our Guest Authors and then write your own! It’s easy, just write your words and send them to me. I’ll edit them and format them into a page and pages.  Hearing the voices of others reminds us that we are not alone!

If you don’t want to write something long, how about sharing a short statement of advice for those who are new to the diagnosis.  I’ll make a webpage of them.

Send your story or advice to me at light2sight5153@gmail.com.

Sue was able to get help from her state’s (Pennsylvania) Bureau of Blindness and Visual Services (BBVS) in 2016 when she took a break from working to learn how she could continue to do what she wanted to do.  Recently, her former casework came to visit. He gave her a resource for the rental of CCTVs. You’ll find out why she was busy…

Shopping

Sue has always been a productive person whether it’s in her career or in her personal life. Lately she’s been thinking about what ‘progress’ means when you have AMD. She writes, “The brutal truth is we are not going to ‘win’ this battle against AMD any time soon.” She says that it’s time to choose new goals and…

Fight the Good Fight

People are surprised when I tell them that Sue still rides her bike even though she has advanced dry AMD (geographic atrophy) in both eyes and is legally blind.  Being legally blind means a person’s visual acuity is below a certain level. To help you understand how she does what she does, we have to ask…

What Is Visual Acuity?

Spoiler Alert – why should you read Sue’s Journal Pages?

After less than a year of learning how to deal with her visual impairment both physically and emotionally, Sue has a ‘normal for her’ life: At age 65 and with advanced dry AMD/geographic atrophy, she works, attends regular exercise classes, rides her bike safely, travels, walks her dogs, 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 600+ of them, here’s our suggestion of where to start.

Sue’s Best Pages: Part 1

As a psychologist, Sue uses and teaches a form of cognitive therapy called Dialectic Behavior Therapy (DBT). She uses it herself and shares it with us as she continues her journey with advanced dry AMD also called Geographic Atrophy (GA). In DBT, the cope ahead skill helps you to imagine yourself in a situation that you expect will elicit an emotional reaction. You then mentally rehearse and see yourself having an appropriate reaction to that situation.  She’s written about it before, but I asked her to give us an example of how it might be used by someone who is anxious about an upcoming anti-VEGF injection.

Cope Ahead Redux

Sue on Assignment

Sue loves to write and has asked for assignments!

Photobiomodulation 

AREDS2 Study & Geographic Atrophy (2 pages)

Money for Assistive Technology (2 pages)

Non-genetic Causes of Macular Degeneration (2 pages)

Got Milk? Research on Calcified Eye Spots

How to Conduct an Experiment for Yourself

How She Sees What She Sees

Altitude and AMD (2 pages)

Be My Eyes

Coping Fatigue (3 pages; Coping Fatigue, It’s Not Your Fault, and Exhausted by Life?)

Sue on Assignment: Mitochondria – Part 1 (2 pages)

Independence

Independence

Getting Food to Come to You

Supplements

Resveratrol: Efficacy Not Yet Proven for AMD

CBD Oil: Safety and Efficacy Not Yet Proven for AMD

Bilberry: Safety & Efficacy of Supplement Form Not Supported by Research for AMD

Astaxanthin: Has Potential But Not Backed by Scientific Evidence for AMD

If you’ve been reading Sue’s pages, you may not be surprised to find out that she is a self-professed control freak. In some people, that may not be a good thing, but Sue makes the case that taking control is necessary for those with vision loss.

Control Freaks of the World UNITE!

Sue does a great job of cutting through some of the questions we struggle with such as, “Why did this happen to me? I thought good people were supposed to have good things happen. Isn’t life fair?” She writes, “No, it is not fair. Somewhere along the line, someone told you life is not fair. You should believe him. Bad things happen to good people and this time it was your turn. Why? Dunno.”

Life is Not Fair

Sue writes, “Emotions call to their brethren in others. If someone addresses us in anger, we get angry. If we go where people are laughing, we laugh as well.” That’s called emotional contagion. There are many examples of the positive and negative effects in history.  It can happen on social media, too. Sometimes it’s a good thing, other times not so much.

It’s Contagious!

Speaking of social media, have you joined our Facebook group?  It’s a safe place where you can get both support and education. It’s our experience that both are needed to cope with macular degeneration.

When some people hear that Sue rides a bike, they don’t believe she’s visually impaired! With geographic atrophy which means she has blind spots and visual acuity of 20/63 and 20/80 in her right eye and 20/200 in her left, I assure you she is legally blind. She is also a very careful person so she plotted out her route ahead of time so there are no dangerous crossings and she doesn’t ride too fast. Even with this, she fell off her bike but not because of her vision.

Wanna See My Boo Boo?

Spoiler Alert – why should you read Sue’s Journal Pages?

After less than a year of learning how to deal with her visual impairment both physically and emotionally, Sue has a ‘normal for her’ life: At age 65 and with advanced dry AMD/geographic atrophy, she works, attends regular exercise classes, rides her bike safely, travels, walks her dogs, 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 600+ of them, here’s our suggeson of where to start.

Sue’s Best Pages: Part 1

Many people say, “Want to hear the good news or bad news first?” We’ve already decided that you should hear the ‘bad news’ first  so we can end with the ‘good news’!

Bad News, Good News

Guest Authors

Read the pages written by our Guest Authors and then write your own! It’s easy, just write your words and send them to me. I’ll edit them and format them into a page or pages.  Hearing the voices of others reminds us that we are not alone!

If you don’t want to write something long, how about sharing a short statement of advice for those who are new to the diagnosis.  I’ll make a webpage of them.

Send your story or advice to me at light2sight5153@gmail.com.

March and April were crazy months for me. In that craziness, I missed a page that Sue wrote about her experience getting started in the APL-2 clinical trial she is participating in.  Here’s the correct sequence of pages. If you start with the first one, there are links at the bottom of the page that will take you to the next page.  You can continue through the series by using the links at the bottom of each page.

Is the Waiting Game Over?

** The one I missed: Like Sorting at Hogwarts

Finally a Lab Rat

Lab Rats Unite!

Spoiler Alert – why should you read Sue’s Journal Pages?

After less than a year of learning how to deal with her visual impairment both physically and emotionally, Sue has a ‘normal for her’ life: At age 65 and with advanced dry AMD/geographic atrophy, she works, attends regular exercise classes, rides her bike safely, travels, walks her dogs, 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 600+ of them, here’s our suggestion of where to start.

Sue’s Best Pages: Part 1

What is photobiomodulation besides a long word that looks intimidating? It’s photo-bio-modulation which is “light used to trigger processes that repair cells and promote healing” as Sue writes in:

Sue on Assignment: Photobiomodulation 

Other pages in the ‘Sue on Assignment’ series:

AREDS2 Study & Geographic Atrophy (2 pages)

Money for Assistive Technology (2 pages)

Non-genetic Causes of Macular Degeneration (2 pages)

Got Milk? Research on Calcified Eye Spots

How to Conduct an Experiment for Yourself

How She Sees What She Sees

Altitude and AMD (2 pages)

Be My Eyes

Coping Fatigue (3 pages; Coping Fatigue, It’s Not Your Fault, and Exhausted by Life?)

Sue on Assignment: Mitochondria – Part 1 (2 pages)

Independence

Independence

Getting Food to Come to You

Supplements

Resveratrol: Efficacy Not Yet Proven for AMD

CBD Oil: Safety and Efficacy Not Yet Proven for AMD

Bilberry: Safety & Efficacy of Supplement Form Not Supported by Research for AMD

Astaxanthin: Has Potential But Not Backed by Scientific Evidence for AMD

Soon after Sue’s vision declined in January of 2016, she decided that she wanted to be a participant in a stem cell clinical trial. She had hoped that it would be a stem cell trial, but she was not accepted for that. Read about what she chose and why.

Is the Waiting Game Over? You’ll find a link at the bottom of the page which will take you to Finally a Lab Rat.

In her newest page in this series she salutes the Facebook group members who either are in a clinical trial or waiting for a clinical trial to start:

Lab Rats Unite!

Spoiler Alert – why should you read Sue’s Journal Pages?

After less than a year of learning how to deal with her visual impairment both physically and emotionally, Sue has a ‘normal for her’ life: At age 65 and with advanced dry AMD/geographic atrophy, she works, attends regular exercise classes, rides her bike safely, travels, walks her dogs, 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 600+ of them, here’s our suggestion of where to start.

Sue’s Best Pages: Part 1

Sue loves to travel. Has her advanced dry AMD/geographic atrophy stopped her? No!  In April, she visited Ireland.

Traveling Blind Again

You can read about her vacation in Iceland:

Travelogue: Iceland!

1. AMD causes blindness.
2. AMD is a growing epidemic.
3. Wet and dry AMD are separate diseases.
4. Reading in dim light will make AMD worse.
5. “Viewing cell phone, television, and computer screens damages the eyes.”
6. “Cataract surgery causes AMD”
7. “Stem cell replacement can cure AMD”
8. “Anti-VEGF drugs for wet AMD will reverse vision loss.”
9. “Special glasses, eye exercises, electrical stimulation, acupuncture, and nutritional supplements can reverse AMD.”
10. “Nothing can be done”

We’re back after an unscheduled hiatus.  You can blame it on me (Lin/Linda). On March 23rd, I went to the emergency room with severe chest pain. Two days later, I had 2 major surgeries in 2 days to fix a hole in my esophagus. To make a long story short, since then I’ve been in the hospital 3 times for a total of 21 days over 10 weeks. I’m still recuperating from this ‘adventure’ and hope there are no more hospital stays in my future.

Sue had actually written some pages that I have only now edited.  Here’s the first one about how she feels about…

Goofing Up

Spoiler Alert – why should you read Sue’s Journal Pages?

After less than a year of learning how to deal with her visual impairment both physically and emotionally, Sue has a ‘normal for her’ life: At age 65 and with advanced dry AMD/geographic atrophy, she works, attends regular exercise classes, rides her bike safely, travels, walks her dogs, 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 600+ of them, here’s our suggestion of where to start.

Sue’s Best Pages: Part 1

Sue is very active. She works, teaches, and attends exercise classes regularly.  There are people in those classes who know she is visually impaired or should know that she is. Since she can’t see faces well, sometimes she stares too long which gets some interesting reactions. Sometimes she has to remind people…

Visually Impaired Old Lady Here!

Spoiler Alert – why should you read Sue’s Journal Pages?

After less than a year of learning how to deal with her visual impairment both physically and emotionally, Sue has a ‘normal for her’ life: At age 65 and with advanced dry AMD/geographic atrophy, she works, attends regular exercise classes, rides her bike safely, travels, walks her dogs, 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 600+ of them, here’s our suggestion of where to start.

Sue’s Best Pages: Part 1

One of the fears people have when diagnosed with AMD is that they will have to stop driving.  Sue had to in 2016 when her vision declined from advanced dry AMD/geographic atrophy. She has a ‘system’ in place for transportation, but she writes…

I Don’t Miss Driving…

Spoiler Alert – why should you read Sue’s Journal Pages?

After less than a year of learning how to deal with her visual impairment both physically and emotionally, Sue has a ‘normal for her’ life: At age 65 and with advanced dry AMD/geographic atrophy, she works, attends regular exercise classes, rides her bike safely, travels, walks her dogs, 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 600+ of them, here’s our suggestion of where to start.

Sue’s Best Pages: Part 1

Sue has written about gratitude before. In this page, she’s grateful to Cracker Barrel restaurants because they offer large print and Braille menus.  She also writes, “And now for the potentially controversial part of the program. Hear me out before you hang me. Ok? Of everything that could have gone wrong in my life, I am grateful it was age-related macular degeneration. What do you think about that?” Read the page and tell us what YOU think about this. Do you want to hang her? ::smile::

Feeling Grateful!

Spoiler Alert – why should you read Sue’s Journal Pages?
After less than a year of learning how to deal with her visual impairment both physically and emotionally, Sue has a ‘normal for her’ life: At age 65 and with advanced dry AMD/geographic atrophy, she works, attends regular exercise classes, rides her bike safely, travels, walks her dogs, 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 600+ of them, here’s our suggestion of where to start.

Sue’s Best Pages: Part 1

Sue writes, “Today I went to Marshalls [a department store near her]. I bought five things. No, I do not by any stretch of the imagination need clothes but they were cute. They are also a little different from things I generally buy. Deciding to go into the store, I had decided I needed a little different in my life.” Read why she recommends…

“And Now For Something Entirely Different”

Sometimes I ask Sue to read what I’ve written. We’ve known each other long enough now that she can give me advice.  Often the advice is based on what she can easily read with advanced dry AMD/geographic atrophy. I suggested that she write a page about reading and writing for someone who is visually impaired.

Reading and Writing

Spoiler Alert – why should you read Sue’s Journal Pages?

After less than a year of learning how to deal with her visual impairment both physically and emotionally, Sue has a ‘normal for her’ life: At age 65 and with advanced dry AMD/geographic atrophy, she works, attends regular exercise classes, rides her bike safely, travels, walks her dogs, 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 600+ of them, here’s our suggestion of where to start.

Sue’s Best Pages: Part 1

Sue writes, “There are a lot of ‘treatments’ for Age-Related Macular Degeneration out there. The fear that comes with the thought of going ‘blind’ ( which does not happen just from AMD, by the way) leads people to desperation and a tendency towards emotional mind thinking.”  Sue shares a way to make medical decisions from everything to finding doctors and whether products are safe for you.

Beware Snake Oil!

Wanted: Guest Authors

February is AMD and Low Vision Awareness. Telling YOUR story can YOUR way of making people aware of what it’s like to be in either of those categories or both!

Read the pages written by our Guest Authors and then write your own! It’s easy, just write your words and send them to me. I’ll edit them and format them into a page and pages.  Hearing the voices of others reminds us that we are not alone!

If you don’t want to write something long, how about sharing a short statement of advice for those who are new to the diagnosis.  I’ll make a webpage of them.

Send your story or advice to me at light2sight5153@gmail.com.

In January 2016, Sue’s vision at age 62 declined so much that she had to take a break from working to deal with the emotional and work-related challenges she then had. We’ve been friends since college 40 years ago. She’s the only person from that time that I stayed in close contact with. Sue helped me get through many of MY many challenges, and there was no question that I’d help her with hers. She asked me to set up a blog so she could share her experiences not just for her but to help others on their journey.  The blog expanded into a Facebook group that I set up in May 2016 and that I still moderate. In February 2016, we launched our website and the rest, as they say, is history.

Happy Anniversary to Us!

Spoiler Alert – why should you read Sue’s Journal Pages?

After less than a year of learning how to deal with her visual impairment both physically and emotionally, Sue has a ‘normal for her’ life: At age 65 and with advanced dry AMD/geographic atrophy, she works, attends regular exercise classes, rides her bike safely, travels, walks her dogs, 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 600+ of them, here’s our suggestion of where to start.

Sue’s Best Pages: Part 1

If you’ve been reading Sue’s pages, you know that just like Frank Sinatra, she’s “gotta be me!” Find out why she writes, “I was once asked what family and friends could best do to help a loved one with visual impairment. My spontaneous answer was people need to help us be who we are.”

Be True to Yourself

If you are in the fast-paced Facebook group, you know that we have over 2,400 members who share their stories, questions and information. I’ve also been able to create ‘units’ there which are like lessons or chapters in a book.  In them I have saved important posts and written about related topics.  I just finished a unit with Frequently Asked Questions (FAQ).

If you’ve only signed up as an email follower,  you will still get emails with Sue’s now-occasional pages.  I also share them with the Facebook group so you can also get them there.

Here comes the ‘but’…but I can no longer keep both the website and the Facebook group up-to-date.  I have chosen to put my efforts into the Facebook group.  The website will stay as it is, it isn’t going away, but there may be out-of-date information and links that don’t work.

I’ll continue to provide you with Sue’s pages when she either gets assigned topics or gets bored! ::smile::  Thanks for your understanding.

If you read this sentence, “When it rains it pours,” I’ll bet you think the next thing you’ll see is a list of all the things that have gone wrong. Sue continues, “There really can be too much of a good thing.” Sue’s looking forward to a lot of positive activities, but that’s about the future.  What about now?  She urges us to regularly be…

In the Moment

Sue starts this page, “I am sure it escaped no one’s attention that all my future concerns, all the things I am planning for, are basically positive. A lot of work and potentially overwhelming but positive. I know more than one person silently – or not so silently – asked how I can be focused on positive concerns when – hey, folks! I am losing my central vision! I am legally blind! Why am I not putting my mental and physical efforts on the fact that I am losing my sight? What is wrong with me?!?!”  Read and find out!

Worry vs Planning

Sue’s previous page was I Am Bored – Again. She doesn’t deal with it very well, so I gave her an assignment. =I= tell people why they should read her pages. I asked her to write…

Why Read My Pages? My Answer

We had a comment on the website from someone who was starting their journey with AMD and hoped that our website would help her know what to expect. This page is a response to that.

The Time to Prepare is Now!

More of Sue on Assignment

Sue has written about a variety of topics: several supplements (bilberry, resvertrol, astaxanthin, CBD Oil), independence (what it means to Sue, how to get food to come to you), AREDS2 & geography atrophy, how to conduct an experiment on yourself, non-genetic causes of MD, research on calcified eye spots, money for assistive technology, eccentric viewing, high altitudes & the eye.  You can choose the topics from this menu page:

Sue on Assignment: Special Topics

I’ve known Sue for over 40 years, so I’m not surprised when I get an unsolicited page from her now especially when she is bored! After years of writing regularly, her ‘new normal’ life has been so, well, normal that she wrote about Taking Some Time Off.  Find out what’s on her mind now.

I’m Bored – Again!

Guest Authors

Read the pages written by our Guest Authors and then write your own! It’s easy, just write your words and send them to me. I’ll edit them and format them into a page and pages.  Hearing the voices of others reminds us that we are not alone!

If you don’t want to write something long, how about sharing a short statement of advice for those who are new to the diagnosis.  I’ll make a webpage of them.

Send your story or advice to me at light2sight5153@gmail.com.

Have you made resolutions for 2019? Sue and I both gave them up years ago since they just set us feel guilty when we break them! Sue writes about how we can work to identify our values and choose what we want to manifest in the new year.

A Minor Epiphany

We’re having an influx of new members to the Facebook group.  I urge you to spend time here on our website.  Why? Who is Sue and why should you read what she’s written in the past 3 years?

Spoiler Alert – why should you read Sue’s Journal Pages?

After less than a year of learning how to deal with her visual impairment both physically and emotionally, Sue has a ‘normal for her’ life: At age 65 and with advanced dry AMD/geographic atrophy, she works, attends regular exercise classes, rides her bike safely, travels, walks her dogs, 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 600+ of them, here’s our suggestion of where to start.

Sue’s Best Pages: Part 1

You can start at the beginning of Sue’s journal of her journey…

In The Beginning