Category: Sue’s New Page

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