Author: light2sight5153@gmail.com

Sue watched as the Coast Guard responded to a medical emergency on her cruise ship and was proud of what she saw.  Even though her vision loss caused her to miss some things, she writes “If you have the time, money and inclination to cruise, don’t let a little vision loss hold you back.”

Postcard from the Cruise Part 1

Sue was able to be mostly independent on the ship after she learned the routes to the various decks.  There were times when it was hard for her to find her husband so they worked out a system to deal with that.  All in all, she concludes that the trip was good.

Postcard from the Cruise Part 2

Start at the beginning…

Are these pages the first ones that you’ve read in Sue’s Journal of her Journey with AMD?  We recommend that you read “In the Beginning”.

Did I have too much Halloween candy last night?  Not enough coffee?  Have the frigid temperatures frozen my brain?  Who knows but I’m sorry, the previous post had a ‘bad link’ so if you have clicked on “Yeah Team!” you got ‘page not found’!  This one will work, at least I hope it will ::grin::

Sue is a confident person but she does get nervous when she knows that people depend on her.  She’s been asked to participate in a project as second in charge and she accepted with the understanding that if her vision worsens, she may not be able to continue.  So let’s offer a…

Yeah Team!

Sue & her husband are on a cruise, a trip that she set up faster than normal so she didn’t have a lot of time to do research.  So while she’s sunning on the top deck of the ship (wearing her good sunglasses, of course), you can read about cruises for those with visual impairments. ::smile::

Cruisin’

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Are these pages the first ones that you’ve read in Sue’s Journal of her Journey with AMD?  We recommend that you read “In the Beginning”.

Another phishing attempt did not ‘catch’ Sue and she shares tips with us so we don’t get caught.  She also talks about optimism and shares thoughts from Dan Roberts “Roberts emphasized there being so much reason for optimism with all the tools and medical breakthroughs.” Sue says “Know someone without knowledge? Someone without hope? Give him…

Some of Yours

I thought that Sue was already on her way to her vacation when I got this page with information from two more articles! ::smile::  This is Sue saying “Two more things…

Before I Go

** It may be a few days before there are new posts.  Sue is on vacation and I’m having surgery tomorrow Nov. 3rd and will need some recuperation time.  I’ll be back as soon as I can.  Sue will be back on November 12th, 2017.

Start at the beginning…

Are these pages the first ones that you’ve read in Sue’s Journal of her Journey with AMD?  We recommend that you read “In the Beginning”.

 

 

Did you know that there are…

Three Types of Wet AMD

Start at the beginning…

Are these pages the first ones that you’ve read in Sue’s Journal of her Journey with AMD?  We recommend that you read “In the Beginning”.

Sue is a confident person but she does get nervous when she knows that people depend on her.  She’s been asked to participate in a project as second in charge and she accepted with the understanding that if her vision worsens, she may not be able to continue.  So let’s offer a…

Yeah Team!

Sue & her husband are on a cruise, a trip that she set up faster than normal so she didn’t have a lot of time to do research.  So while she’s sunning on the top deck of the ship (wearing her good sunglasses, of course), you can read about cruises for those with visual impairments. ::smile::

Cruisin’

Start at the beginning…

Are these pages the first ones that you’ve read in Sue’s Journal of her Journey with AMD?  We recommend that you read “In the Beginning”.

Two pages today!

Sue has a number of devices to help her with various tasks at work. She has depended on her CCTV.  It died and so she is…

Limping Along

Without her CCTV, Sue had to find some other way to read articles.  She’s written about the app NaturalReader in the past that converts text-to-speech.  It read to her an article that says “The article suggests doctors are not proactive enough in the early stages of the disease [AMD].”  NaturalReader does a great job most of the time but sometimes it can be…

Diffy Cult

Start at the beginning…

Are these pages the first ones that you’ve read in Sue’s Journal of her Journey with AMD?  We recommend that you read “In the Beginning”.

Sue’s BIG on exercise and she’s not the only one.  In this page, she looks at the connection between exercise and depression.  She writes “To begin with they [researchers] found an exercise a day keeps the psychiatrist away.”

An Exercise a Day

Start at the beginning…

Are these pages the first ones that you’ve read in Sue’s Journal of her Journey with AMD?  We recommend that you read “In the Beginning”.

Sue loves it when she can find research to support what she has been telling us.  In this case, it’s about the benefits of exercise, including…

Come Dance with Me – Again

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Are these pages the first ones that you’ve read in Sue’s Journal of her Journey with AMD?  We recommend that you read “In the Beginning”.

Sue has news from the stem cell facility about one of the studies she is signed up for.  She also shares some advice to…

Drink Your Fluids

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Are these pages the first ones that you’ve read in Sue’s Journal of her Journey with AMD?  We recommend that you read “In the Beginning”.

Sue continues to talk about the stem cell trials that she has been following.  One called PRELUDE is one she is signed up for where they will be evaluating several outcomes.  She reminds us that there is…

Progress Daily

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Are these pages the first ones that you’ve read in Sue’s Journal of her Journey with AMD?  We recommend that you read “In the Beginning”.

Sue has been on the waiting lists of future research studies, some for quite some time.  The path of research is not always smooth and so timelines are often changed.  She writes about one of the stem cell studies and how a stem cell delivery system will use…

Secret Passages in the Eyeball

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Are these pages the first ones that you’ve read in Sue’s Journal of her Journey with AMD?  We recommend that you read “In the Beginning”.

Why should we be excited about a breakthrough in the treatment of diseases other than AMD?  Sue writes “What I am saying is every breakthrough in one aspect of vision research might lead to breakthroughs in other areas and – drum roll please! – there has been a breakthrough!”  That means…

Our Turn is Coming

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Are these pages the first ones that you’ve read in Sue’s Journal of her Journey with AMD?  We recommend that you read “In the Beginning”.

The eye is a complex and remarkable organ.  We’ve talked about the RPE cells which take care of the photoreceptors which are the rods and cones that give us sight.  One of their jobs is to feed them, another is…

Eye Poop Reduction

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Are these pages the first ones that you’ve read in Sue’s Journal of her Journey with AMD?  We recommend that you read “In the Beginning”.

One of the hardest things to deal with for many who have had to stop driving is that you cannot make last minute adjustments to your schedule.  Sue planned for a full day of activities but got sick.  She writes “I cannot make the marginal call any more. Sometimes I need to use a little discretion.”  That means she sometimes has to…

Make the Safe Call

Start at the beginning…

Are these pages the first ones that you’ve read in Sue’s Journal of her Journey with AMD?  We recommend that you read “In the Beginning”.

Sue’s written quite a bit about the role of retinal pigment epithelial (RPE) cells in the development and progression of AMD.  She clarifies that RPEs are not just in the macula, she writes “RPEs are under all of the photoreceptors and support all vision, not just central vision.” That means that RPEs are…

Important Cells

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Are these pages the first ones that you’ve read in Sue’s Journal of her Journey with AMD?  We recommend that you read “In the Beginning”.

Those of you with wet AMD – especially those of you who are getting injections of anti-VEGF medications – are praying for the time when you will not need them or you will not need them as often.  When the research on a topical treatment ‘failed’ (Squalamine eye drops used with Lucentis injections to reduce the frequency of injections), the news was disappointing.  However, as with many studies, there was a secondary goal which was to improve visual acuity.  About that, Sue writes that “31% of the people with ‘classic’ wet AMD lesions gained 11 letters on the chart!”  She says…

Maybe They Have Something

Start at the beginning…

Are these pages the first ones that you’ve read in Sue’s Journal of her Journey with AMD?  We recommend that you read “In the Beginning”.

We’ve had several people ask how Sue can produce so many pages for the website (almost 500!) as well as prepare written reports for her various jobs.  She has geographic atrophy which is the advanced stage of dry AMD which means she has scotomas/blind spots in the central vision of both eyes.  She writes about her process which has produced some funny autocorrect and speech recognition interpretations such as ‘a broken ankle’ becoming a…

A Brisket Ankle

Start at the beginning…

Are these pages the first ones that you’ve read in Sue’s Journal of her Journey with AMD?  We recommend that you read “In the Beginning”.

Sue’s written several pages about atrophy that can occur in the periphery.  She says  “Can’t change your genes just yet at any rate. Cannot get any younger. That leaves taking care of your circulatory system. Do what you can to improve it.” We hope you will also take this advice…

Keep Calm and Carry On

Start at the beginning…

Are these pages the first ones that you’ve read in Sue’s Journal of her Journey with AMD?  We recommend that you read “In the Beginning”.

Sue continues to dig through the article about geographic atrophy.  Would you want to know where the atrophy will spread?  There’s a test for that and tests for wet AMD and a test for dark adaptation.

Testing…1…2…3

Start at the beginning…

Are these pages the first ones that you’ve read in Sue’s Journal of her Journey with AMD?  We recommend that you read “In the Beginning”.

Sue has written several pages about an article that details what is known about geographic atrophy which is the advanced form of dry AMD.  She writes that with all these terms & details she feels like she is falling…

Down the Rabbit Hole

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Are these pages the first ones that you’ve read in Sue’s Journal of her Journey with AMD?  We recommend that you read “In the Beginning”.

There are so many ways that tension impacts our lives, not the least of which is through the fear or reality of sight loss.  Sue shares specific ways to…

Just Relax

Start at the beginning…

Are these pages the first ones that you’ve read in Sue’s Journal of her Journey with AMD?  We recommend that you read “In the Beginning”.

We’ve read so many articles about peripheral retinal atrophy & related disorders that we are swimming in confusing information!  Sue writes “I have more than enough to worry about with my macular degeneration and I expect you do too. I am not going to buy trouble. I could waste every minute of every day worrying about a bunch of what-ifs. I have better things to do with my time. I suspect you do, too.”  We advise you to take former Beatle Paul McCartney’s advice to…

Let It Be

Start at the beginning…

Are these pages the first ones that you’ve read in Sue’s Journal of her Journey with AMD?  We recommend that you read “In the Beginning”.

We’ve talked about drusen but we’re also reading about something called pseudodrusen.   What is it and why do we care?  When we talk about vision with early AMD, what’s the difference between visual acuity (eg, 20/20) and functional vision?  Here we go with more articles that we are…

Slogging Through Again

Start at the beginning…

Are these pages the first ones that you’ve read in Sue’s Journal of her Journey with AMD?  We recommend that you read “In the Beginning”.

She’s back with the first of a series of pages on something that her retinologist told her.   She takes a detour through Panda Pop and the Rocky Horror Picture Show but she ends the page with an article that says there’s a connection between prostate cancer and AMD so the page is…

Not a Total Loss

Start at the beginning…

Are these pages the first ones that you’ve read in Sue’s Journal of her Journey with AMD?  We recommend that you read “In the Beginning”.

Two pages again today to celebrate those of you who are sharing your journeys with us.

First…

We are always happy to hear from our email followers and Facebook group members.  Mary has been with us for quite some time and recently told us that she leads a full life which includes her involvement with a support group in Massachusetts that she helped start.  Sue writes about some things that help us to create…

A Full Life

Second…

We have 2 new pages from Facebook group member Joann Davis who is one of our charter followers.  She’s been with us for 1 year 5 months which makes her one of our first!

Rookie in Training: Part 1  (there’s a link to the second page)

Want to join them and tell others about YOUR journey?  You can send me an email with the words you have or an email with an attached file with the words (Word .doc file is great). There’s no word limit, if I need to create more than one page, I’ll do that.  I’ll edit it & create the webpage, work with you on anything that might need to be changed, show you the finished product before I release it to the world.  If you have any questions or want to go ahead and send me something, it’s light2sight5153@gmail.com.