Yet another new page from Sue:
Category: Sue’s New Page
Never Say Always
While there is a lull in the action here, I am going to backfill and write a little bit on Dialectic Behavior Therapy. This is the stuff that usually comes first when we teach but I have been hitting skills as I have had to use them instead. Time to double back and fill in some of the holes.
First off, what the hey are dialectics? Dialectics assume there is truth in every stance/belief/opinion. Somewhere in what someone believes there is a grain of truth. Dialectic thinking has as a purpose moving us off of our previously inflexible beliefs and opinions, helping us to reduce our black and white thinking. By reducing black and white thinking and recognizing that everyone has some truth in what they think, we can move towards a common ground and find resolution to our conflicts.
Dialectics assume that somewhere in what someone believes there is a grain of truth.
For example, some people believe I am totally handicapped and need help with everything. They try to do everything for me. I would like to believe I am not handicapped at all and capable of doing everything I was always capable of doing. This black and white, all or nothing thinking can cause conflicts and stress. I get peeved when people do things for me I can do for myself. I am not helpless! Other people get peeved when I fumble and make mistakes because I am too proud to ask for help. You are so stubborn!
I would like to believe I am not handicapped at all and capable of doing everything I was always capable of doing.
The truth of the matter is somewhere in the middle. Can I do somethings? Yes. Can I do everything? No. Coming into the middle ground and agreeing there are some things I can do but some things I cannot do will reduce a lot of disagreements and stress. That is a dialectic.
So dialectics strive for balance. They move you away from the black and white. Does that mean you have to give up your moral code. Nope. Think about it; how often does your moral code get challenged? Most black and white sort of dilemmas are about silly stuff anyway. “I always take out the garbage.” or “You never empty the cat box!”
Can I do somethings? Yes. Can I do everything? No. The truth of the matter is somewhere in the middle.
Notice the absolute words in those sentences. Always and never are overused words. How often is something always? Always never? Dialectics try to steer us away from the use of absolutes.
FYI – must is another one of the words that does not go along with a dialectic point of view. I must keep driving. I must keep my own financial records. What happens when must meets cannot in those situations?
How often is something always? Always never? Dialectics try to steer us away from the use of absolutes.
Dialectics attempt to hold two things that are opposite or conflicting in balance. If you have lived to be old enough to have AMD and have lived a reasonably successful life, you have had a lot of experience with dialectics. How many times have you balanced wants and needs when budgeting? How about balancing needs for distance and closeness? For example, “Give Daddy time to relax and then you can tell him about your school project.” I would suspect you have been practicing dialectic thinking for some time and never even knew it!
So that is what dialectics are. Balancing two opposite things, recognizing the validity in each and moving towards the center for resolution of the conflict.
As you experience wants and needs, abilities and limitations related to your AMD, keep dialectic thinking in mind.
Written March 2016. Reviewed September 2018.
Sue’s New Page 3/28/2016
Sue’s been busy. At least she can turn a bad day into something better!
Sue’s New Page 3/27/2016
Sue’s New Pages 3/26/2016
Welcome!
June 2023 There’s an announcement that since Sue has not written any new journal pages for some time, the site has been archived until we can decide if the work necessary to make sure all information is accurate and up-to-date can be made. In the meantime, you’ll get some pages ‘not found’ or ‘private’ until that decision has been made. The emphasis for several years has been on the Facebook group.
You are here to follow the journey & misadventures of a woman named Sue who became visually impaired with Age-Related Macular Degeneration (AMD or ARMD) seemingly overnight. Join in the tears and laughter. Join in the discussion. Learn more about Age-Related Macular Degeneration. Find resources for your own journey or that of someone you know.
We’re going on a bear hunt….can’t go over it, can’t go under it, got to go through it.
Sue is a psychologist trained in Dialectic Behavior Therapy (DBT) and is using it to help her cope with this vision loss. Her trusted and invaluable friends bring computer, research and occupational therapy skills to this endeavor. Yeah team! We hope you benefit from the fruits of our labors.
We are not offering free psychological therapy. We are not medical people. Please read the disclaimer.
This website is divided into 4 parts:
- If you have just been diagnosed or if you are beginning your research, here’s a place to start in I Have Macular Degeneration…Now What?
- Sue’s journal pages which are like chapters in a book
- Highlights & News which are basically blog posts
- Links to helpful resources (still under construction)
For those of you who aren’t familiar with websites or blogs like this, to ensure that you will be notified when information is added to the website, you must subscribe by email. On a laptop & most tablets, you’ll find the place where you can do this in the right-hand column. On a smart phone, you will find it below the content for the page that you are looking at.
- Get information about our Facebook group
- Find out more about Sue
- Learn who Linda is & how she met Sue
- Find out how we organize our project
- Contact us if you find a problem or need help
We are still learning, we don’t know everything about this challenging disease.
Courses Coming Soon!
Thanks!
Thanks to Lesley B., Sally R., Dave M. and Gerry M. for going through the website looking for links that didn’t work, things that didn’t read well and typos. We couldn’t have done it without you.
Blog Posts
We will be regularly adding new information to the Highlights/News section as well as Sue’s Journal pages. To make sure you are notified when that happens, please go to ‘subscribe by email’. On laptops & most tablets, you will find out how to do that in the right-hand column. On a smart phone, it will be after the content.
Home
Sue’s Journal Pages
June 2023 There’s an announcement that since Sue has not written any new journal pages for some time, the site has been archived until we can decide if the work necessary to make sure all information is accurate and up-to-date can be made. In the meantime, you’ll get some pages ‘not found’ or ‘private’ until that decision has been made. The emphasis for several years has been on the Facebook group.
Update 2024 She HAS been writing about her experience with the APL-2/pegcetacoplan/Syfovre Phase 3 clinical trial, GALE follow-up study, and GARLAND Phase 4 clinical trial.
2024 Most Recent Pages
Sue’s Series on Being a Participant in the APL-2/pegcetacoplan/Syfovre Phase 3 Clinical Trial, GALE Follow-up Study, and GARLAND Phase 4 Clinical Trial
2016
Sue’s first aspiration to be a ‘super lab rat’ was not long after she considers the start of her status as legally blind. You can read about that here: In the Beginning.
2019
It was June 2019 she was accepted into the Phase 3 clinical trial for what was first called APL-2, then pegcetacoplan (Syfovre when it was approved by the FDA in 2023). Finally a Lab Rat. In July of that year, she wrote about her first injection: The Beginning of My Clinical Trial.
2022
In August 2022, before the FDA approved Syfovre (February 2023) and after that she was accepted into the long-term follow-up study, she wrote about her ‘Diabolical Plan’ to be accepted into a stem cell clinical trial while she’s still alive: My Diabolical Plan: Stem Cell Transplant for Dry AMD.
2023
She also wrote about the discussions of the studies: Pegcetacoplan Study Cliffhanger and Pegcatacoplan Side Effect Hunting.
After the drug was approved in February 2023, she revised her article from her perspective of being halfway through the 3-year follow-up study: My Diabolical Plan Revisited March 2023. In this article, you can read about her trip to Wills Eye Hospital in Philadelphia to participate in an interview for a CBS affiliate which ended up being shared internationally about this experience. You can find the link to that broadcast here.
She also wrote What Does Syfovre Mean for You?
She also helped me with the page Questions and Answers – FDA Approved Treatment for Advanced Dry AMD/Geographic Atrophy/GA.
First FDA-approved Treatment for Advanced Dry AMD/Geographic Atrophy/GA: Perspective from Sue.
2024
You can choose:
- To START AT THE BEGINNING and follow the pages from one to another like chapters in a book
- To get a list of ALL pages (some of the more recent ones may not be here yet)
- If you want to access pages by a particular CATEGORY, look to the right of this page or at the bottom and choose a category (for example, Cognitive Therapy, Research, etc)
Sue’s Toolkit – 2 Years Later – Part 1
Sue’s Toolkit – 2 Years Later – Part 2