Category: Sue’s New Page

Sue went skiing and experienced what she thinks was snowblindness, talks about having panic attacks and visual hallucinations and goes back to the ophthalmologist. She starts teaching us about she’s using DBT to help deal with what she’s going through – and she revisits how DBT has helped her and others.

If you’ve read these pages and just want Sue’s update on how DBT helped her, click here.

• 8.  “If you’re reading this website just because you have nothing better to do or out of curiosity, if you do not yet have a diagnosis of retinal disease and you become blind after coming in from bright light with long periods of recovery, get thyself to a reputable eye doctor. It is very possible you have the beginnings of a retinal disease. That’s the public service announcement.”
  •  A Perfect Storm

• 9.  “Anyway, Charles Bonnet Syndrome hallucinations involve this interesting phenomenon in which your mind tries to make sense of what it cannot properly see. I started to see weird shit. Nothing scary. Just nothing that made sense. Definitely, nothing that was actually there.”
  • What Do I Do Now?

• 10.  “The obvious question was how the devil this could have happened. My ophthalmologist had seen it before, but only in the very old. He conceded I was too young for this to have happened but yet it did. He had no theories. Perhaps I should go back to Regillo. Maybe call the local agency for the blind.”
  • It Just Happens

• 11.  “For the past two years, I have had the opportunity to teach the educational components of Dialectical Behavioral Therapy (DBT). Just by chance, the unit I was teaching was Emotional Regulation. If anyone needed emotional regulation at that time it was me. Teacher, teach thyself.”
  • Teacher, Teach Thyself 
  • Salvation: DBT Revisited – 2018

Coming next!

Sue put on a tutu and a tiara and danced for an hour, an hour that gave her a reprieve from the anxiety.  She met for the first time with her counselor from Pennsylvania’s Office of Vocational Rehabilitation (OVR) Bureau of Blind and Visual Services (BBVS) which looking back was a salvation!

Sue did her research on what AMD is, what causes it, and what she could do about it (pages 2 & 3).  She found that there’s research being done (page 4).  One of the studies she found had been conducted by Dr. Carl Regillo of Wills Eye Hospital in Philadelphia which is about a 2-hour drive for her.  Three weeks later, she had her first appointment with Dr. Regillo (page 5 & 6).  After her appointment, she did more research into what makes up a clinical trial (page 7).

You can open individual pages or start with page 2 and go from there to the next pages in order.

•  2. “The trouble comes when the Servants/RPEs are not doing their job anymore. One of the first signs of AMD is the presence of something called drusen. My reading very nicely indicated that these are fatty, metabolic byproducts of the photoreceptors’ job of turning light into sight. Basically, it seems to me that they are piles of poop. These piles of eye-poop suggest that the RPEs are not functioning as they should.”
  • The Science Stuff

• 3. “What my sweet, wonderful ophthalmologist did not tell me was how to cure what ails me. In fact, he told me there was no cure–well, ain’t that just dandy? ”
  • What to Do

• 4. ” When somebody suddenly realized what the numbers were going to look like, they decided they had better do something to ameliorate the problem. Thus, all the research.”
  • Research with links to current information.

• 5. “Carl Regillo is at Wills Eye Hospital in Philadelphia & has an office in Bethlehem, perhaps 2 hours away. And I got an appointment within 3 weeks of asking & they took my insurance. So far, it does not get any better than this.”
  • Where All Roads Lead

• 6.  “Strange, staccato, conversation followed. I told him I wanted to read the article on the phase 1 results when it came out. It was out and he gave me the citation. I told him I had every intention of being in phase 2. The conversation was a bit of a tennis match. At times we are even finishing each other sentences. I felt as if we were definitely on the same page.”
  • The Man Behind The Curtain: The Wizard of Wills

• 7.  “Let me go off on a tangent here for a moment. Until I got into this, I had no clue what happens in clinical trials. Short tutorial if I may: clinical trials are made up of four phases. The first phase is a safety and tolerability phase. Essentially, the researchers are looking to make sure that nothing serious goes wrong. They want to make sure that no one has an allergic reaction or grows stray body parts where they should not be growing.”
  • Super Lab Rat with updated links to current 2018 research

Coming next

Sue went skiing and experienced what she thinks was snowblindness, talks about having panic attacks and visual hallucinations and goes back to the ophthalmologist. She starts teaching us about she’s using DBT to help deal with what she’s going through – and she revisits how DBT has helped her and others.

In February 2016, I published Sue’s first journal page (if you don’t know who Sue is – where have you been?! ::smile:: – check out ‘Spoiler Alert’ below). 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 readers

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

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.

I hope that you will ALL read this even if you’ve never read any of our posts or pages. This is an update about the journey that is part of the name of our website and Facebook group: My Macular Degeneration Journal/Journey or Journey/Journal.  It’s the journey my friend Sue has taken in the last 3 years with advanced dry AMD/geographic atrophy. It’s a message of HOPE to all of you who have AMD and wonder how anyone can cope with vision changes like hers.

It’s a message that says, “Yes, there is life after vision loss.”

Sue has been writing about her experiences since February 2016 (you can read her first page In the Beginning) when her vision changed so much that she could no longer work without new tools and skills.  Of the 625+ pages that she’s written since then, we’re not sure when things changed, but somewhere along the line, she crossed from her “old normal” to her “new normal.”  What does that mean for her life? What does that mean for her journal?

Life After Vision Loss?

Ok, so you’re wondering where the message of hope is, and why I said that there is life after vision loss, right?  Sue will explain…

Taking Some Time Off

You will read that Sue asks 2 questions:

• “…anything special you want me to write about?”
• “…who among you – especially those not far along this road – would like to write a few pages about his/her challenges and successes? Any takers? There have to be some frustrated authors among you. This is your chance.”

If you have requests for topics and/or would like to write for our website as other Guest Authors have done, let me know in the comments or email me at light2sight5153@gmail.com.

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.

Sue continues to wait to hear if she’ll be invited to participate in a stem cell clinical trial being planned at Wills Eye Hospital in Philadelphia. She writes about a recent article “Researcher ‘cautiously optimistic’ about future of regenerative medicine to treat AMD.” Dr. Vavvas reports where stem cell research is currently, and where he predicts it will be in the future. He warns about “false hope.” Sue writes about where HER hope is and asks…

Where’s Your Hope?

On the subject of hope, we have quite a few guest authors who share their stories, stories of challenges, fears, and also of hope.

Our Guest Authors: Their Stories

Sue writes about tedium.  What’s that? Partly, it’s…

Same Stuff Different Day

AREDS/AREDS2

This weekend we’re having a big discussion of the AREDS2 supplements. Do you think that you know all about them? Take the quiz to find out.

Take the Quiz

It’s a complicated topic but I hope I can answer some of your questions in my Short Answer to Should I take the AREDS/AREDS2 supplement?

This is the second year that Sue participated in Summer Academy on Career Day.  Summer Academy is for kids with visual impairment.  There were totally blind kids (“no light perception, no nothing”) who were facing their fears and doing amazing things. “They faced their fears daily,” Sue writes. Since there’s no camp (yet) for ‘big kids’, she’s lining up her adventures.  She has chosen to…

Rage, Rage Against the Dying of the Light

From 2016

Sue sometimes had problems finding things.  Now, with low vision, it happens more often and is more frustrating.  Where are her things going? Maybe to ….

A Black Hole?

From 2017

Competence is important to Sue, whether it is that of others or of herself.  She says “Since I had my vision loss, I have an underlying uneasiness about becoming incompetent in my job. When will it happen? Will I recognize it when it happens? Will people cover up for me? And if they cover up for me will I leave my profession with a tarnished reputation? I never had these thoughts before but I have them now.”  To her, competence is about…

Knowing and Doing

With over 600 pages, Sue’s journal continues to grow.  We added a rating system last year.  This is the result of those ratings.  We encourage you to continue or to start rating which gives us great feedback!

Sue’s Best Pages – Part 3

Other Compilations

Recommended Pages & More about Sue

Dealing with the Emotional Reaction to Vision Loss

Sue’s Toolkit – 2 Years Later – Part 1

Sue’s Toolkit – 2 Years Later – Part 2

Sue’s Musings

There are currently 4 pages in this series.  Start here & you will go from one to the next.

Sue’s Musings: short summaries of her pages starting from the beginning

Sue regularly reports on the latest advances in research. APL-2 is a promising treatment for dry AMD.  The big news is that it’s been ‘fast tracked’ which means it’s been given priority status with the FDA who approves such things for use with patients.  If you are concerned that the drug companies don’t want to develop drugs for those with AMD, Sue shares the earnings for two big companies. That means there’s…

Gold in Them There Eyeballs

Things have piled up for Sue.  Her scotoma is getting denser, it’s been rainy and she’s sleepy, and her shared ride transportation continues to waste her time.  It all adds up to…

They Get My Goat

Sue talks about 3 ways to magnify and move images to the healthy part of one’s retina, each with varying price tags.  None of them halt the progression of the disease so…

Caveat Emptor

Sue had a meal, ran some errands, and stopped at a low vision store near her.  She was able to try IrisVision, a headworn magnifying device that uses a Samsung smartphone in a virtual reality (VR) headset.  She writes about what she liked and what she didn’t about it.  All in all, she decided it was…

A Pretty Good Monday

From 2017

No matter how much we learn, we are always finding new information.  Sue found an article that talks about the fovea, drusen, geographic atrophy, and what happens if wet AMD is not treated.

Always Learning More

There’s more in this article including terms like PED.  Did you know that there are different forms of wet AMD?

Always Learning More and More

There are many ways we can get things done. Sue writes about one of them: commitment.  We make commitments all the time, but we might not be aware of them.  When we make a commitment to you who journey with us, it helps us to continue to work toward meeting our goals.  We also watch with you as researchers are committed to finding a cure. So, the word of the week is…

Commit!

From 2017

One of our readers who is a member of our Facebook group shared her preparation for, and experience of, driving after not driving for 3 years because of the visual problems from her AMD.   She agreed to let us include what she told us in a series of pages.

The 3 pages are linked together so you can start here and continue to pages 2 and 3:

Behind the Wheel: Part 1

Here are the links to pages 2 & 3:

Behind the Wheel: Part 2

Behind the Wheel: Part 3

One of the most difficult-to-accept consequences of AMD is not being able to drive. We have members of our Facebook group and others who have said that they continue to drive “but only on roads I know.”  Does it matter how far you drive if you can’t tell the difference between a…

Mailbox or Child?

If you’ve not read the first page of Sue’s journal, we encourage you to do so.  She writes:

June 2015

I am driving down Route 11 with the windows open. Something gets in my right eye. No biggie. Wipe it out. With my right eye closed, the car in front of me disappears. Oh shit. Open the right eye again and the car in front of me is back. Close the right eye again and it disappears. There seems to be a problem here.

In The Beginning

There’s quite a lot of research in the works.  Sue observes that much of the successful clinical trials have been for treatment of wet AMD.  That’s frustrating for those with dry AMD. Sue did get her carpet shampooed which she sees as a miracle, so she concludes that miracles can happen. Hang in there…

Denizens of the Dry Side

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

For some rare conditions (AMD is not considered one but Stargardt’s is), developing treatments for them is difficult because companies may not make money on them or recover the cost to develop them.  In the US, the FDA provides funding for some of these…

Orphan Drugs

From 2016

This is a follow-up to yesterday’s post about Sue’s 100th page (About Our Project).

Time Flies When You’re [not] Having Fun