Category: Sue’s New Page

We continue to report the results of current research. The NEI (National Eye Institute), the people who bring us a lot of the results of AMD research, will soon be starting a study of the natural history of the development of AMD.  And there is news of a possible way to stop the growth of geographic atrophy lesions by using a drug called APL-2.  When Phase 3 starts sometime in 2018, it may be…

Supplies are Limited, So Act Now!

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

 

 

Do you play the “if only” and “I wish I had” game?  That’s what is considered to be self-blame which is often part of being depressed. Sue shares information about why self-blame can have a negative effect on how we adapt.  We can look at ourselves & ask “what happened? why me?” but read why Sue writes that it’s important to realize that having AMD is…

Not My Fault, Not Your Fault

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

Double whoops! I found 2 more pages that did not go out as emails (they were posted to the Facebook group) AND I found out WHY it happened & hopefully fixed it.  Sometimes you just cannot trust an ‘update’ to software.  ::sigh::  Anyway, thanks for your understanding.

(February 19th)  With as many things as Sue does on a regular basis, she chose to write this page on a Saturday night.   Why is she cleaning out her email inbox? She says…

I Am Bored

(February 25th) Today is the 2-year anniversary of the day I published Sue’s first page on our website.   That means that it’s 2 years since Sue started on her journey with advanced dry AMD which is called geographic atrophy.  She’d been diagnosed with dry AMD    She has learned a lot and shares…

My Advice to Those Newly Diagnosed

New Website Accessibility Features

I very much appreciate feedback on the design of  the website.  There are some things I can easily change and some things that I cannot.  I received a recent comment about the color and boldness of the font in the email that you receive if you are a follower of the website.   The heading is blue as are the links to pages outside of the email (called hyperlinks) and some people have a problem reading them.  I am working on it but it’s not an easy thing to change.  If you cannot read the email, click on the title and it will take you to our website where you can read the post using the new accessibility features.

 

 

I have added a way that you can control some features of the appearance of pages and posts on the website – this doesn’t apply to the email.  You will now see a small icon on a blue background in the upper left of the pages & posts (I wish I could make it bigger but I can’t).

Click on this icon and you will get a list of options:

• contrast dark – the background will turn dark.
• contrast white – the background will turn white.
• readable font – will change the font to one that is easier to read.
• underline links – I think all of mine are underlined but this would fix ones that are not underlined.
• Three sizes of the letter A – you can choose the second A for a little larger font, the third A for the largest font.  You can then return to the original size font by choosing the first A.
• cancel accessibility – this will clear any options that you chose and return the page or post to its original format.

Please let me know if you have a problem with this new feature by putting a comment here or email me at light2sight5153@gmail.com.

 

 

Whoops, I just discovered that even though I shared the information below with those in the Facebook group, the emails did not go out for these 2 pages.  I don’t have a good excuse so I won’t give one! ::grin::

(February 27th) Even though Sue was doing something, she didn’t consider it ‘productive’ so she decided to continue to go through her email to give us…

News Briefs

(March 2nd) Sue found an article about a study done called the Coping with Vision Loss Study.  It talks about the anxiety and depression that can come with the diagnosis of AMD.  It covers many of the things we’ve already talked about such as how to maintain independence by using technology.  Whatever you decide to do…

Keep an Open Mind

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

 

 

It’s not that Sue wants to retire from her job at the school but there are many logical reasons why she will.  She’s looking forward to finding new and exciting things to do with her life, including enjoying many more…

Mountain Vistas

New Website Accessibility Features

I very much appreciate feedback on the design of  the website.  There are some things I can easily change and some things that I cannot.  I received a recent comment about the color and boldness of the font in the email that you receive if you are a follower of the website.   The heading is blue as are the links to pages outside of the email (called hyperlinks) and some people have a problem reading them.  I am working on it but it’s not an easy thing to change.  If you cannot read the email, click on the title and it will take you to our website where you can read the post using the new accessibility features.

 

 

I have added a way that you can control some features of the appearance of pages and posts on the website – this doesn’t apply to the email.  You will now see a small icon on a blue background in the upper left of the pages & posts (I wish I could make it bigger but I can’t).

Click on this icon and you will get a list of options:

• contrast dark – the background will turn dark.
• contrast white – the background will turn white.
• readable font – will change the font to one that is easier to read.
• underline links – I think all of mine are underlined but this would fix ones that are not underlined.
• Three sizes of the letter A – you can choose the second A for a little larger font, the third A for the largest font.  You can then return to the original size font by choosing the first A.
• cancel accessibility – this will clear any options that you chose and return the page or post to its original format.

Please let me know if you have a problem with this new feature by putting a comment here or email me at light2sight5153@gmail.com.

 

Sue writes “Times like this I feel as if I am truly getting my life back. It is exciting to be getting back to being me!”  How has she been doing this?  She is persistent and believes that if you expect good things, you will get them.  And it doesn’t hurt to…

Believe in Fairies

February is Macular Degeneration and Low Vision Month!

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.

One of the many challenges of macular degeneration is dealing with the emotional reaction to vision loss and the fear of it.   Here are some of Sue’s quotes and pages that offer advice.

Sue’s Best Pages – Part 2

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 writes “Life really is the funniest thing that ever happens to you.”  She, like many of us, knows that laughter IS…

The Best Medicine

February is Macular Degeneration and Low Vision Month!

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 spends a LOT of time waiting for transportation.  She shares some ‘interesting’ ways to deal with the frustration including imagining how things could be worse which for her involves not being able to get into the bathtub and the puppies shunning her! ::grin::  So do…

The Ends Justify the Means

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.

We love when people share their stories with us. Rick, a friend of Sue’s friend, wrote 2 pages about his journey with a macular pucker then a cataract.  He’s updated us about how things have been with him and he offers GREAT advice!

Rick’s Story: Part 3

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.

On Valentine’s Day and always, remember that you are not alone!

Happy Valentine’s Day a day early!  It’s also AMD and Low Vision Month.  And February 25th will be the 2-year anniversary of our project.  In honor of all of this, Sue and  I ask you to consider writing about your journey.  We have wonderful pages written by our website followers and Facebook group members.  Sue writes “How about that? We have our…

Our Own Month

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 page and pages.  Hearing the voices of others reminds us that we are not alone!

 

Whoops!  After I published yesterday’s page about Sue’s Toolkit, Sue emailed me and said “Where’s the first part?”.  “I thought the page I just shared was to replace that one?  No?  OK,  my bad!”  So here we go, Sue writes about what she still uses 2 years later.

Sue’s Toolkit – 2 Years Later – Part 1

You can read these pages in order by using the link at the bottom of this page to go to part 2.

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

** I guess the few days without my laptop has made me rusty!  I had an incorrect link for Sue’s Toolkit – 2 Years Later in the previous post.   It has been corrected.  Thanks for your patience.

Sorry for the pause in publishing new pages.  The hard drive in my laptop died so it was ‘in the shop’ for a few days.  It’s fixed and I’m back in business!

I’ve changed the direction of this series to share the pages Sue wrote about the apps and technology that she uses or has tried.  This is just the first page, more to come.

But first, see what she started with…

When Sue’s vision declined in early 2016 & temporarily prevented her from being able to work, she contacted Pennsylvania’s Office of Vocational Rehabilitation’s (OVR) Bureau of Blindness and Visual Services (BBVS).  They helped her financially & with advice from Vision Rehabilitation Therapists (VRTs), she put together a ‘toolkit’.

• A Day in the Life – about her non-work days
• A Day in the Life: Work Day– about her work days

Now check out what Sue is using 2 years later…

Sue’s Toolkit – 2 Years Later

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 mother, like others in her generation,  never thought to question their family doctor; for Sue and family that was Elmo.   Sue became a ‘horrible’ patient and writes “My favorite questions to any doctor are ‘Why?’ and ‘Explain that to me.’ ”  Shared decision making in medicine is popular now because it empowers & educates patients.  Sue writes that her questioning would…

Make Elmo Proud

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

Our Facebook group has grown to 1317 members as of this morning, I added 24 new members just this week!   We started the group to enable members to interact with each other and share information.  I’ve been moderating the group since May 2016.  Over the years, I’ve observed that as people enter the group they often ask questions about what supplements they should take and what foods they should eat.  Often the AREDS/AREDS2 supplements are recommended by physicians and other people with AMD as if they were a ‘treatment’.  They are not and the research behind them shows that they don’t help everyone.   The research also shows that AMD is a disease with many risk factors and possible causes.  I wrote this page hoping that in addition to sharing some honesty I can also share some optimism.

My Two Cents

Are you new to the diagnosis?  Just starting your research?  The page I Have Macular Degeneration – Now What? will get you started on your own journey.

To read about Sue’s journey with AMD,  you can start In The Beginning.

Are you confused about whether the AREDS/AREDS2 research showed if they can help you?  Go to Review of the AREDS & AREDS2 Research Results: An Attempt of Make Them Clearer for Patients and Family Members.

 

There’s a lot of talk lately about our genes in many diseases including in macular degeneration.  Gene therapy techniques are an especially hot topic that Sue writes are…

Cool Things

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

Sorry for the pause in publishing new pages.  The hard drive in my laptop died so it was ‘in the shop’ for a few days.  It’s fixed and I’m back in business!

I’ve changed the direction of this series to share the pages Sue wrote about the apps and technology that she uses or has tried.  This is just the first page, more to come.

But first, see what she started with…

When Sue’s vision declined in early 2016 & temporarily prevented her from being able to work, she contacted Pennsylvania’s Office of Vocational Rehabilitation’s (OVR) Bureau of Blindness and Visual Services (BBVS).  They helped her financially & with advice from Vision Rehabilitation Therapists (VRTs), she put together a ‘toolkit’.

• A Day in the Life – about her non-work days
• A Day in the Life: Work Day– about her work days

Now check out what Sue is using 2 years later…

Sue’s Toolkit – 2 Years Later

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 is teaching another DBT course and writes about the topic of justified and unjustified emotions.  How do you decide when an emotion is one or the other?  Who decides that?  What about intense emotions?  With vision loss Sue writes “we may have some pretty intense reactions to some of the strangest things.”  And what about…

Just the Facts

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 wrote this on Friday and she was a little, well, she calls it ‘slap happy’. ::grin:: The serious content of the page is about Medicare which is the US federal government’s insurance for people over 65 and others.  There are many options to check out so she’s singing Smokey Robinson’s lyrics…

Shop, Shop Around

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

Lin/Linda here: Call Ghostbusters!  I have gremlins in the website!  There were some ‘broken links’ in several recent emails.  All I can say is that this happened at the same time our website was moved from one computer (called a server) to another. Shouldn’t have happened but it did so we go on.

If you get the “oops, can’t find the page”, it’s OK to tell me either by leaving a comment or emailing me.  I test every post before it goes out but I think the problem occurred after that.

We continue to share quotes from Sue’s journal pages in anticipation of our 2nd anniversary on February 25th.  We hope this will encourage you to explore our ever-growing website that has over 500 journal pages and over 600 posts!

Here are the links and dates for the most recent 3 pages.  They do link from one to the next but you may have already looked one.

Sue’s Musings Then and Now – Part 2 – 1/20/2018

Sue’s Musings: Then and Now – Part 3 – 1/24/2018

Sue’s Musings: Then and Now – Part 4 – 1/25/2018

Want to start at the beginning?

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

Have a favorite page or two?

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!

 

Sorry, I had a bad link in the first email I sent out…here is the corrected post.

We continue to share quotes from Sue’s journal pages in anticipation of our 2nd anniversary on February 25th.  We hope this will encourage you to explore our ever-growing website that has over 500 journal pages and over 600 posts!

Sue’s Musings Then and Now – Part 2 – 1/20/2018

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!