Category: Sue’s New Page

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