Author: Linda Moore

Red Hair?

Sue’s father had dry AMD, Parkinson’s and Lewy Body Dementia (a cognitive disorder associated with Parkinson’s). It appears there is a connection.  Also, both Parkinson’s and AMD are more prevalent in those with…

Red Hair?

Have you met Sam?

One of the most useful resources I’ve found is a YouTube channel called The Blind Life done by a guy with Stargardt’s whose name is Sam. His channel has videos of all kinds: reviews of products like CCTVs, magnifiers, headworn low vision devices; tips & tricks of all kinds including how to crack an egg, how to set up a smartphone or tablet (both Apple & Android); and MUCH more! He’s got a great sense of humor as evidenced by a playlist called, “Sucks To Be Blind.” He also does videos with his wife called “Couples Q & A”.

If you haven’t seen any of his videos, click here to go to his channel & check him out!  Did you find a video or videos that you especially like? Share them in the comments.

 

 

“Wrap Up” Blindness in our Lifetime!

What would you do if you had $50 million?  Or even $5 million? Two philanthropic groups decided to grant part of their riches to advance research in the area of vision-related diseases.  One has ties to where Sue lives and is a manufacturer of ribbons.

“Wrap Up” Blindness in our Lifetime!

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

In February 2016, I published Sue’s first journal page. It wasn’t the beginning of her journey with age-related macular degeneration, but it was the beginning of what has become 600+ pages of the journal that she’s shared with us.  It’s a journal that has educated and inspired many of you.

I’ll be re-publishing her early pages because they are as important to readers now as they were when she began   I encourage those of you who have not taken the time to read her first page to do so now.

In the Beginning

Fast forward to the present. I’ve asked Sue to share her thoughts about “In The Beginning” to give readers an idea of how her life is years later.  I hope it will encourage you to read these early pages to learn how she managed through the twists and turns of her journey to live what is now her “new normal.”

In the Beginning – Revisited

 

 

 

No Train for Christmas

Sue and I follow the AMD research closely. Sue writes about the proportion of research for dry AMD to that for wet AMD.

No Train for Christmas

2 Years Ago

Sue has found that since she had to stop driving arranging transportation has become a BIG problem.  It’s hard to deal with the frustrations when things don’t work out the way you plan.  She gives us some hints that can help.

Best Laid Plans

1 Year Ago

Sue was invited to participate in The Summer Academy at Penn State University which was sponsored by the Pennsylvania Office of Vocational Rehabilitation.  This was for visually impaired kids.  This was her first ‘adventure’ away by herself to do her…

Personal Appearance: Part 1

After the closing ceremony, Sue decided to set off by herself to explore.

Personal Appearance: Part 2

 

 

Sue’s been living with dry AMD for two-and-a-half years.  Some days, she’s tempted to take to her bed with a half gallon of chocolate ice cream and a spoon.  What do you do when all you are thinking is that…

Life is Not Fair

2 years ago

Sue has embraced technology so that she can continue to live and work as best she can with her current vision.  Why?  She shares the answer to that and also gives us some insight as to why some people don’t use technology.  Her BVS caseworker asked her to demonstrate her competency with assistive technology to his supervisor (it’s annual review time).

Dog and Pony Show

1 year ago

Is it possible to overdo antioxidants? Maybe we really should follow the advice…

Moderation in All Things

Once again, genetics plays a big part in an upcoming treatment for geographic atrophy: lampalizumab.  Sue is…

Studying the Study

From the Top of the Pile

Sue’s life is busy so she finds herself with piles of articles in her home office.  She writes about two articles…

From the Top of the Pile

From 2 years ago

What do you do when you are stressed?  Sue talks again about mindfulness and how different cultures/religions use prayer and meditation.  That’s where these folks come in.

Whirling Dervishes and Others

From a year ago

There continues to be evidence that AMD is not one disease but a collection of them, some of which are based on genetics.  A recent article says “APL-2, a complement C3 inhibitor, has met its primary endpoint in its phase 2 clinical trial, reducing the rate of geographic atrophy (GA) associated with age-related macular degeneration (AMD).”  We have reason to hope for…

Another Potential Treatment

What’s the difference between ‘low vision’, ‘legally blind’, ‘visually impaired’?  Sue helps you to…

Know the Terms

Coming Out

In a previous page, Sue wrote about what it means to “come out” as a VIP (Visually Impaired Person) to family, friends, and coworkers. Is this an issue for people with other disabilities?  The older we get, the more of our peers have a disability, too. Having limitations binds us to one another, makes us human.  So what’s so bad about…

Coming Out

Two years ago

There are some days when Sue has things that just don’t work out well.  She re-frames the situations and things turn out to be OK.   So where’s the pony, you ask?

There Must be a Pony Somewhere

One year ago

Sue’s Android phone is new & she’s learning how to use the magnifier.  She’s also learned more about how genetics can impact one’s treatment for wet AMD.

This and That

Filling the Pumps

Sue has been seen several times by Dr. Carl Regillo at Wills Hospital in Philadelphia. He’s a much-respected “super” ophthalmologist. One of his latest research interests (he has a few; he’s busy) is in pumps to be inserted into the eye filled with an anti-VEGF medication. That will reduce the treatment burden for those with wet AMD.  In the future, your appointment with the retinal specialist may be for…

Filling the Pumps

How to Win Friends & Influence People the DBT Way

Sue writes, “If you are anything like me, you were used to being independent. If no one did it for me, I did it for myself. Now I find myself in the position of asking for favors, asking for help. It is aggravating and depressing; yes? Yes! DBT has skills for getting what you want without alienating people and, just as importantly, saving your self-respect. None of us like to grovel or beg. Too old for that nonsense.”

How to Win Friends & Influence People the DBT Way

 

I Know Who I Am

I try to keep Sue updated on topics in the Facebook group.  We’d discussed “coming out” of the “closet” that is vision impairment.  Sue writes about the fear that we will be unfairly judged by others. Sue shares an experience she had, and why she says…

I Know Who I Am

What Can I Do to Slow the Progression of AMD?

There ARE things you can do to battle AMD. These are the recommendations backed by research. Since we don’t yet know what causes AMD in any individual, we don’t know which of these are more effective than others. We do know that there are many factors that influence the development and progression.

I have included a few self-help tips, too.

What Can I Do to Slow the Progression of AMD?

 

 

We know that many of you have just been diagnosed and are worried about what the future may bring. Sue reviews what she has found has helped her cope and offers suggestions.

Coping: A Review

About AREDS2: Should I Take it or Not?

That’s the number one topic in our Facebook group. There’s no easy answer, but I hope this page will help you go through a set of questions to make sure you are one of the ones it will benefit and to make sure that none of your medications or diseases will interact with the AREDS2 supplement and possibly harm you.

Decision Aid: Should I take the AREDS2 Supplements?

There’s also more information in AREDS/AREDS2: A Guide.