Category: Sue’s New Page

Sorry it’s been so long since I posted. I have to admit that the Facebook group is keeping me busy!

Sue has written 11 pages on topics including research on several supplements (bilberry, resvertrol, astaxanthin, CBD Oil), independence (what it means to Sue, how to get food to come to you), AREDS2 & geography atrophy, how to conduct an experiment on yourself, non-genetic causes of MD, research on calcified eye spots, money for assistive technology.  Check them out by going to…

Sue on Assignment: Special Topics

Do you have a topic you’d like Sue to research and write about? Let me know at light2sight5153@gmail.com.

One of the risk factors for developing AMD and having it progress is exposure to the harmful rays of the sun.  Good sunglasses are a must! Years ago I found my first pair of Cocoon sunglasses which fit over my eyeglasses.  It was love at first sight (I know, that is really corny! ::grin::).  I have to admit, though, that I found their website to be a bit confusing, so I contacted the company and received a lot of help. After a few emails, I asked the great customer service person I’d been working with for something knowing that “Sorry, no” could have been the answer but the answer was “Sure!”  There’s an early Christmas present for everyone who reads BOTH of these pages…

Me and My Cocoons – A Personal Story, Not a Sales Pitch Page 1

Did you find that early Christmas present? If not, email me at light2sight5153@gmail.com.

We’re continuing with the topic of independence.  In our first post, Sue wrote about what independence looks like for her. In the Facebook group, we talked about one aspect: how it is possible to be independent without being able to drive by using the many sources of transportation that are out there that most people don’t know about. I recommend that those in the US check out the Ride in Sight website even if you don’t yet need it.  You enter your zip code and get a list of transportation options in your area. I was personally surprised to find 25 options not just for rides to medical appointments but for other reasons as well.

In one of Sue’s 2016 pages, she wrote about what it was like to not be able to drive while her husband was in the hospital.   One of the issues was how she was going to get groceries. You can read about that in Out of Milk and Eggs. I asked her to revisit that page and update us on the latest options for…

Sue on Assignment: Getting Food to Come to You

What Independence Looks Like When You Can’t Drive

In the Facebook group, I listed several scenarios and asked this question: “This is what independence means to me now and what I agree would mean independence in the future with visual impairment.”  Here are the top ones that were chosen:

• Asking a friend, neighbor, family member for a ride when needed
• Finding a transportation service and using it to go where I want and need to go (locally subsidized, Uber, Lyft, taxi, etc)
• Accepting the offer for a ride made by someone who really wants to help; you’ve done the same for others in the past
• Asking a friend, neighbor, family member for a ride when needed & bartering/exchanging services with them in exchange for transportation

Do YOU have a scenario to add to these?

If you are a member of the Facebook group, you know that on Sunday I asked the question, “What is your number one concern about your future related to your diagnosis?”  By far the responses were about the fear of losing independence.   One of the most independent people I know is Sue.  Yes, Sue who has advanced dry AMD/geographic atrophy.  Sue who quit driving over 2 years ago when she realized it was not safe anymore.  Not being able to drive is – to many people – the end of independence.  If that is the case, how has Sue continued to live as full a life at 65 as she did before her vision declined?  I asked her…

Sue on Assignment: Independence

Spoiler Alert – why should you read Sue’s Journal Pages?

After less than a year of learning how to deal with her visual impairment both physically and emotionally, Sue has a ‘normal for her’ life: At age 65 and with advanced dry AMD/geographic atrophy, she works, attends regular exercise classes, rides her bike safely, travels, walks her dogs, 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 600+ of them, here’s our suggestion of where to start.

Sue’s Best Pages: Part 1

I’m sorry that it’s been so long since I’ve posted.  Life has a way of interfering with plans as you know too well.

Sue’s been accepting more “assignments” and has written about 2 supplements that are talked about in relation to AMD.   As we both do when we are researching, we look for objective, scientific evidence of claims for AMD.  We may find many claims made by testimonials and anecdotes, but we don’t consider that to be evidence. I’ve included a great video below to help explain anecdotes and why we don’t include them in our reporting to you.

We stress that you should always talk to your medical doctor before you take ANY supplement ESPECIALLY if you are taking medications including other supplements and if you have other health issues.

Sue’s On Assignment Pages

Astaxanthin: Has Potential But Not Backed by Scientific Evidence or AMD

Bilberry: Safety & Efficacy of Supplement Form Not Supported by Research for AMD

More coming soon!

What’s An Anecdote and Why Is It Not Evidence

A lot of people believe that personal experience with a health product or intervention is good evidence that it works. Here’s why anecdotes don’t make for reliable evidence, and why the plural of “anecdote” is not “data”.

Title & date first published

27. Toy Story, Too March 26, 2016
Categories: Diagnosis: Newly Diagnosed, Eschenbach, Financial, Low Vision Aid, Technology: Phone/Tablet/Computer
Keywords: Financial, handheld magnifier, Low Vision Aid, Technology: Phone/Tablet/Computer

28. Taxman March 26, 2016
Categories: Diagnosis: Newly Diagnosed, Financial, Video
Keywords: deductions, disabled taxpayers, federal tax, free tax preparation, IRS, macular degeneration tax breaks, tax breaks for visually impaired

29. Yesterday March 27, 2016–>
Categories: Cognitive Therapy, Self-care, Sue’s Musings
Keywords: ACCEPTS, comparison, contributing, DBT, pity
30. Sue’s Terrible, Awful, No Good Day! March 27, 2016
Categories: Cognitive Therapy, Self-care, Sue’s Musings
Keywords: DBT, self-soothe

30. Sue’s Terrible, Awful, No Good Day! March 27, 2016
Categories: Cognitive Therapy, Self-care, Sue’s Musings
Keywords: DBT, self-soothe

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 600+ of them, here’s our suggestion of where to start.

Sue’s Best Pages: Part 1

We got a request from a Facebook group member for Sue to do research on this topic.  Sue found some “interesting” and unexpected information.

Sue on Assignment: Non-genetic Causes of Macular Degeneration – Page 1 (2 pages)

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!

 

It’s been 2-1/2 years since we started this project which includes the website and Facebook group. From the very beginning, Sue & I have stuck to our mission to educate & support members, but in the process to make sure the information shared is as accurate as possible and not misleading. Unfortunately, in the case of Facebook specifically, there’s lots of ‘bad’ information passed along quickly especially concerning products that offer ‘treatments.’ Not in our group, though. ::smile::

We know that we cannot stop people who want to try products that are not backed by scientific evidence to prove their SAFETY.  If you are going to experiment on yourself, we want you to do it in a rational & time-honored way: by scientific experimentation. It’s really not that difficult!

Sue on Assignment: How to Conduct an Experiment for Yourself

 

 

 

 

 

Go back to the list of “On Assignment” pages

Sue on Assignment!

Here’s another topic that Sue researched and wrote about.  There are quite a few really helpful assistive technology products out there – and more are coming out every day.  They are SO expensive, how can ANYONE afford them?  That’s the question I posed to Sue.  She found ways to get help with funding for devices and apps for those with low vision.

Sue on Assignment: Money for Assistive Technology 2 pages

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!

Previous Pages: Sue on Assignment

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 compare to those with wet AMD.  Here are 2 pages from…

Sue on Assignment: AREDS2 Study & Geographic Atrophy

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!

• 21. “The first new thing I did was go into Walmart – alone. I was not thrilled with the idea. As I said before, I cannot see faces and Walmart was full of people. What if I snub somebody again? Also, the day before I had gone to Staples and had trouble with the credit card machine. Came out of there in tears. Something so simple and I had screwed it up!”
  • 21. Attention Walmart Shoppers

• 22. “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.”
  • 22. How to Win Friends & Influence People the DBT Way

• 23.  “So that is pretty much it for rambling – least for now. I am tilting at windmills on a few other fronts. Not sure I will win but I intend to be heard. I have been having successes and failures, but those are for another post. I just hope the mind weeds I have scattered – like dandelion seeds – have taken root somewhere.”
  • 23. Mind Weeds

• 24.  “Some days we are just being ‘pecked to death by ducks’. We spin from peck to peck and never actually deal with any one of them. DBT says to deal with one of those unfriendly fowl at a time. You cannot fight a war on too many fronts. Decide where to put your resources and win that battle first. Then go on to the next battle.”
  • 24. Pecked to Death by Ducks

• 25. “So I am listening to the birds calling before night falls. Outside, I am looking at the sky and watching the clouds. I can feel a light, cool breeze on my face. I am not tasting anything, but the smell? Well, I guess it is Spring. It was a stressful day, but I am winding down with my self-soothing skills. It is going to be a restful night.”
  • 25. Soothe Thyself added 3/25/2016

Next installment: Coming Soon!