Author: light2sight5153@gmail.com

Actually, I have 2 pages to share today.

First…

This page written by one of our Facebook group members Nancy Alberts. Thanks so much Nancy!

My Journey with Early AMD

Second…

Sue writes “Anyway, even though I am not normal, I see parallels between Nancy’s experiences, my experiences and maybe even your experiences, too.”  We are all…

Looking for Answers

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You can go to the webpage with our ever-growing number of guest writers: Our Guest Authors: Their Stories.

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.

Unfortunately, we have had too many disasters due to both Mother Nature and man.  With visual impairment, there are things you need to do to…

Be Prepared

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 ways to watch TV when you are visually impaired.  Sue is having some success watching it on her iPad where she can get very close to the screen.  It’s part of her much needed…

Downtime

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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”.

It was no surprise to me that after Sue’s page yesterday about running out of things to write about, she sent me a new page. ::smile::  She attended a vision seminar where the presentation was about what should go in to the decision to continue to drive or not.  It’s…

Not As Cut and Dried

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 been writing about her journey since February 2016.  About how things are now, she writes “The point is this: I am in a place that is almost the normal (and I use that word very tongue in cheek) me. I am living MY life. I am not living a pale substitute nor am I always settling for second or third best. My life is full. And I am doing it visually impaired.”  At one point, Sue was concerned that she would run out of things to write about as her life settled into this ‘new normal’.  I told her that would never happen and now she is saying…

I Told You So!

Since she wrote this page, she HAS given me a few more.  ::grin::  But soon there may not be a new page every 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”.

 

There are many helpful functions available to create text including autocorrect and speech-to-text/dictation apps.  Sue offers ways to avoid turning something like “Doing Beets with Grandma” into…

Doing Beers with Grandma

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 shares some links to sources of…

Free Stuff

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”.

I apologize again, another post that didn’t get posted!

Many of you have pets and understand the connection we have with them. Sue has written about her dog Lily (she called her Beastie Baby often since she was a large breed), dog #7 for Sue.  Lily was 14 and suffering from lung disease.  A few days ago, because she was suffering, Sue & her husband had Beastie Baby euthanized.  Will there be a dog #8?  Yes, there eventually will be.  In the meantime, we say…

RIP Beastie Baby

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 prides herself on being an organized, productive person…most of the time.   But it’s been a tough week after being up all night with her dog and then sleeping longer than normal the next night to recover.  She writes “In my opinion, caring for others as well as for yourself are some of the highest callings.”

Let the Horse Out of Her Harness

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”.

It’s no secret that the biggest problem that Sue has is transportation.  She uses a shared ride van service where the scheduling often means that she is picked up ridiculously early or is dropped off late to work.  It makes her angry, frustrated & resentful.  How should she deal with this?

Practice What I Preach

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”.

Once again, I sent Sue an article with research that makes her think about something in her lifestyle.  This time, it’s an article about how fats may contribute to AMD.  Sue’s honest about her diet, she’s shared that her 2 favorite ingredients are fat and salt.  Summer for her means fresh tomatoes which leads to bacon, lettuce and tomato sandwiches (BLTs for short) with…

Lots of Mayo

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”.

There are several medications being researched to treat geographic atrophy.  We are keeping track of their progress.  In the meantime, beware of emails asking for money like the one Sue got from…

My Friend in Manila?

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”.

This page falls into the category of pet peeves!  Do YOU have any?

Small Pockets

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 thrives on being busy & solving problems.  She asks “How can we maintain challenge and accomplishment in our lives now that we are older and have a vision loss?” Her answer is no surprise to those who know her…

Get Busy Living

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”.

After Sue’s last appointment with Dr. Carl Regillo at Wills Eye Hospital in Philadelphia, we reported that she would be getting an injection of lampalizumab (“lamp stuff”) in December 2017 that would be part of phase 4.  Since then we’ve found articles that are saying that phase 3 won’t end until 2019!  We are…

So Confused!

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 writes “Looking into the basics of getting around and doing what you can to get – and keep – your finances in order is crucial.” When to do this?

Preparation: Start Now!

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”.

Do you know that there are medications that can cause vision problems?  There are!

Drugs with Eye Side Effects

If it becomes time that you need help with your daily life, assisted living facilities are an option.

Home Away From Home

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 writes “Go for your shots. Investigate changes in your vision immediately. Hard to get more basic than this.”  She says this (among other things) is a…

No Brainer

If you’ve been following Sue’s journey, you know she tries to do what she can for herself and asks for help when she needs it.  When a co-worker got upset with because she didn’t think to offer to help Sue, Sue didn’t know what to say or do to help that person feel better about herself.  There really out to be a…

VIP Etiquette Book

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”.

Are you still caring for children AND your aging parents?  That puts you in the ‘sandwich generation’.  Or are you taking care of a spouse or sibling?  And what about the people who take care of us when we need it?  For all these reasons, we need to watch for…

Caregiver Burnout

Current research is showing that there are several genetic reasons for the development & progression of AMD.  Sue says “I admit defeat! Maybe I can study genetics for a decade and come back for a rematch.”  She declares…

The Winner Is: Genetics!

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”.

When someone is diagnosed with macular degeneration, many people fear that they eventually won’t be able to do the things they enjoy.  We’ll be talking about some of these things.  First, it is…

Time to Watch Some TV

Sue asks the question: Can people still be happy after vision loss?  She says “…happiness is limited because we allow vision loss to rid us of dreams and things to look forward to.”

Anticipation

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”.

There are many things that are annoying when one’s vision is impaired.  Here’s one…

Did You Drop Something?

We know that many of you are trying to conceal your vision impairment from co-workers, friends, family.  Are there ways of…

Fading Into the Woodwork

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”.

What does the term ‘bucket list’ mean to you?  Things to do before you die? Sue talks about having at least two of them:  one for the things you need to do to get through the day and the second for the dreams that you have.

Bucket Lists

Age-Related Macular Degeneration (AMD) is not the only disease of the macula, we know that some of you have a disease commonly called…

MacTel

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”.

It used to be that the Amsler Grid was the only way to monitor your vision.  Sue talks about the other ways to…

Keep an Eye on Your Eyes

It’s hard enough for people with ‘normal’ vision to read the small print on a medication bottle, what do you do if your vision is impaired?  There are ways to help in…

Managing Medications

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”.

Lin/Linda here:  I am having difficulties with the software I use to maintain the website.  I will be sending a few posts from days past that I do not think went out.  Sorry for filling up your inbox!

Sue’s transportation system continues to schedule her with lots of time to spare some days.  This day it started a mini pity party for her along with the not-so-good news that one of the 2 parallel clinical trials of lampalizumab didn’t meet its primary endpoint for the 1st of the 2 trials.  Unfortunately, both Sue & the research hit some…

Bad Patches

On the plus side, Sue found a review article that highlights the…

Recent Advances in 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 admits that her life is cluttered.  Things like doing laundry and ironing bring challenges for those with visual impairment.  Sue offers suggestions for…

Fighting the Mess

There’s conflicting information about whether there’s a relationship between cataracts and AMD.  They are both diseases where the risk increases with age.  Read more about…

Cataracts and 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”.