Category: Sue’s New Page

Here we are again looking forward to the beginning of our 4th year with you. Sue reviews 2019 and shares her hopes for 2020.

Happy New Year 2020

Who is Sue?

She’s my friend of 40+ years who became legally blind (20/63 to 20/80 in one eye & between 20/160 and 20/200 in the other) from advanced dry AMD/geographic in 2016. 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, takes photographs, walks her dogs, kayaks, attends social events with her friends, co-workers, exercise class buddies, and and new friends she’s been making along the way!

There’s a quote that is making the rounds of the Internet which is supposed to give us ‘the rules of life.’ One of them is ‘expect less.’ That stuck with me because it’s not something I agree with.  I asked Sue for her thoughts. We both agree that it is better to…

Expect More, Not Less

We both wish you a blessed holiday, however you celebrate it.

Today is Thanksgiving day in the US. Sue and I thank you for continuing to follow our website and Facebook group. We are on this journey together. You are NOT alone!

Sue has a group of women with whom she’s been friends for a LONG time! Like many of us, she is separated from them by distance and tricky scheduling. They did get together recently, but there was a very important, albeit sad, reason. She recommends that we all…

Rage Against the Dying of the Light

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

Sue is a psychologist who uses and teaches a type of therapy called Dialectical Behavioral Therapy (DBT). It started out as a therapy for personality disorder, but has been adapted for use with other conditions. It really is a way to teach people to cope with stress, regulate emotions, and improve relationships with others.  She’s teaching her students about myths which basically are expectations for “people like us.” She found a GREAT but maybe unexpected way to demonstrate the concept!

Good People Do Have Vision Loss

Who is Sue?

She’s my friend of 40+ years who became legally blind (20/63 in one eye & between 20/160 and 20/200 in the other) from advanced dry AMD/geographic in 2016. 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, takes photographs, walks her dogs, kayaks, attends social events with her friends, co-workers, exercise class buddies, and and new friends she’s been making along the way!

Sue’s recently back from yet another trip and another cruise even though she usually gets sea sick.  What is it about cruises that she recommends?

Rocking and Rolling

Our Facebook Group

One of the reasons that there aren’t a lot of posts from this website lately is that our Facebook group keeps me busy.  Currently, we have 3,600 members with various types of macular degeneration (most have AMD) and with varying visual challenges. We also have many caregivers in the group. The purpose of our group is to provide both education and support, two things we think are critical to living a full and meaningful life.

Come join us! I don’t think you’ll be disappointed!

Our Facebook Group

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