Category: Sue’s New Page

Sue sees Dr. Regillo for the second time. She shares why Scarlett O’Hara’s advice is a good one to follow at times.  There’s a love letter to Amazon and advice for a vision simulation app to help explain vision changes to others. The BIG news from March 2016 is that Sue goes back to work with her cool “toys” and new ways of doing things.

• 16. “Regillo suggests I refer myself for low vision therapy – already done – and AGAIN referred me to the study. He suggested that he might be seeing me ‘downtown’. I replied he would definitely be seeing me downtown. Regillo just smiled. Or at least I think he did. Do you think I was too confident?”
  • 16. Crazy Like a Fox

• 17.  “If you have an emotion you want to get rid of, do a behavior that you would do if feeling the opposite emotion. In other words, if you are sad, dance. If you are fearful, approach. I like to call pushing away the Scarlett O’Hara skill. Do you remember Gone with the Wind? The crops are burning, the slaves are running away and the Yankees are at the door. Prissy comes to Scarlett with one more problem and what is Scarlett’s reply? “I’ll think about that tomorrow.” Note, she did not say she would never handle the problem. She did not say she was going to ignore the problem. She said she would deal with it tomorrow. That is pushing away. Just put it on the shelf until you can deal with it effectively.”
  • 17. Advice from Scarlett

• 18.  “Amazon has everything from magnetic Amsler Grids to bilingual products to Old Maid cards…and more!”
  • 18. Dear Amazon: A Love Letter

• 19. “I have been using the AMD Simulator to show people how I see. A fair number of them have expressed relief; they realize my vision is not great, but not as bad as they had feared (at least not yet). The late setting scares the bejesus out of them, too. It makes me feel good that they understand and feel better. Also, being an educator at heart, I feel good that I have been able to share some knowledge.”
  • 19. Sim City for Low Vision Folks

• 20. “I’m back to me with my cool toys and under the watchful eye of my boss. I won’t let my students be affected by my ‘undue hardship’.”
  • I’m Baaacccckkkk!

Coming next!

This is the first time since her vision declined that Sue has gone into Walmart alone. She shares techniques from DBT to help deal with: asking for favors, choosing which battles to fight and when to pass them by, and soothing yourself when you’re feeling stressed. She’s seen her general practitioner and her ophthalmologist, too.  As usual, she’s been busy!

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!

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

• 12.  “For that one hour, I was improving my mood and fighting the downward spiral that could have led to more problems, such as a serious depression. Maybe I could do it another hour another time. Behavior follows emotions but emotions also follow behavior. Fake it until you make it. Put on your tutu and your tiara and dance.”
  • A Tutu and A Tiara

• 13. “I had an appointment set up with the vocational specialist they had assigned me. When I first spoke with my BVS counselor I had warned him I am not a patient person. In fact, I am a doggedly persistent pain. I suggested he give me an assignment. It would be self-defense for him and would give me something to do. My assignment? Get copies of my eye evaluations and put together some samples of the work I had done and that I wanted to return to. Yes. I was on the job.”
  • A Human Doing
  • Salvation: Vision Rehabilitation Revisited – 2018

• 14. ” have become the ‘out to lunch lady’. OK, those of you who know me know I have always been a bit ‘out to lunch’, but these times I am actually eating. People are taking me to lunch and getting me OUT.”
  • Out to Lunch

• 15. “Comparatively speaking, now is a great time to be losing your vision. Probably the best time yet in the history of the species. How do you like that for cockeyed optimism? There is so much more to help people with low vision than the hand-held magnifier of 20 years ago.”
  • Tech Talk

Coming next!

Sue sees Dr. Regillo for the second time. She shares why Scarlett O’Hara’s advice is a good one to follow at times.  There’s a love letter to Amazon and advice for a vision simulation app to help explain vision changes to others. The BIG news from March 2016 is that Sue goes back to work with her cool “toys” and new ways of doing things.

New feature: Sue on Assignment!

When Sue announced that she was going to take a break from writing journal pages, she asked if anyone had any topics that they’d like her to research. It didn’t take long for ME to find several projects for her.  This is the first one. Sue has geographic atrophy (GA; advanced dry AMD) like some of you. I gave her a recent article that looked at the data from the AREDS2 study in terms of how those with GA did compared to those with wet AMD.  Here are 2 pages from…

Sue on Assignment: AREDS2 Study & Geographic Atrophy

Have a topic for Sue?

Sue has offered to accept special assignments from us. If you have a topic, please post it in the comments or send it to me at light2sight5153@gmail.com. I can’t guarantee that she’ll take them all but we can try!

 

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