Sue’s New Page 10/9/2016

Sue’s come a long way since February of this year. She has been surprised by the positive feedback from those around her including from the subscribers here and the Facebook group members.  One of the folks from Blind and Visual Services called her a success and mentioned the word ‘calendar’.  Sue suggests that since there are hundreds of thousands of people like her getting by each day that she says “Maybe we can all be calendar girls (and guys)!”  What do YOU think, want to be on a calendar page?

Calendar Girl

Sue’s New Page 10/6/2016

Sue has a lot of connections in the town where she lives. She has lots of friends who work together to help her get where she needs to go.  But she also has people who know her and have missed her at places like the mechanics at the car repair garage and the people who work at the Chinese food take-out place.  She is back in the routine that reminds her that she knows where she belongs.

My Place in the World

 

Sue’s New Page 10/4/2016

Sue is the most positive person I know.  But she is also realistic and knows that we all have negative things happen or said which can create negative feelings.  She has gone through this herself since her vision declined at the beginning of 2016.  In this page, she shares the DBT techniques that help us to prevent negative feelings from ‘sticking’.

Teflon Mind

Sue’s New Page 10/2/2016

Sue loves shoes & admits that she’s bought many of them because they are ‘cute’ & many of these have high heels.  These days, though, she’s had to do a lot of walking so she’s been wearing shoes often called ‘sensible’.  If she wanted to add more stuff to what she has to take with her these days, she could wear heels more often but let’s face it, she admits she has some difficulty keeping track of things as it is.  This is a day when she doesn’t have any need to wear sensible shoes so she’s going to enjoy it.

Today, I Wear Heels

Sue’s New Page 9/30/2016

Sue spent some time alone while her husband recuperated from back problems in the hospital and then in a rehabilitation center.  She has had to do things by herself that were no problem before her vision changed. She now knows that she can order food to be delivered so she won’t starve and she can arrange for transportation so she can get where she needs and wants to go.  But there are things that she’s realized she still needs to learn.

Always Learning

News: Change of Website Features

I just wrote a LONG explanation and you can read it below but for those of you who prefer short stories, here it is:
  • Sue writes the journal pages which was the original intention of creating the website and will always be our main objective.
  • I format those pages & insert the links.
  • Early on, I told Sue some of my ideas to expand what we were doing and I volunteered to do research, write & publish posts from the website and run the Facebook group.
  • I can no longer continue to do all of that (the reasons are below).
  • However, I can easily share what others in the field write in a timely manner through the Facebook group.
  • If you are an email follower but NOT in the Facebook group, you are missing out on:
    • current information put out by major AMD organizations;
    • what others like you with AMD have to say (we currently have 105 member & add new members almost every day);
    • my interaction with members with help I can provide them to research specifics concerns.

I highly recommend that you join us on Facebook.  Here’s the link:

If you need help figuring out how to do that, please let me know by leaving a comment on this page or by emailing me directly at light2sight5153@gmail.com.
Don’t worry that you will miss any of Sue’s pages.  Every time I publish a page or post from the website, I share it with the Facebook group.  You can continue to remain an email follower, you might just occasionally get duplicate information.
Thanks so much for your understanding, Lin/Linda..

Here’s the long story
As you know, Sue & I started this website in February 2016.   The initial goal was to publish Sue’s journal pages, the one’s she’s been writing about her experiences with AMD.  I took it upon myself to add a blog where I could share links (in addition to the links I insert in her page) that I found related to AMD.   My first job was to try to put together a page of links called Resources where I have an outline of topics with links related to them.  I try to keep it updated but I don’t always do such a good job.
Because it’s not easy to have conversations with followers on the website, in May I set up a Facebook group so we could offer that option. Many of the vision-related organizations and companies have Facebook pages and I can easily share their posts.  In that way, I can keep Facebook group members informed of the latest information and issues.
We have 2 groups of people with whom we share information:
  1.  email followers on the website who receive emails with new posts from the website;
  2. Facebook group members with whom I not only share daily posts but who also receive a link to any of the pages and posts published from the website.

We currently have 84 email followers and 105 Facebook group members.  Some email followers are also in the Facebook group.  Some Facebook group members are NOT email followers.

 In July, I thought about the fact that I wasn’t able to keep writing new posts for the website about news and developments in the field as easily as I can on Facebook so I started to create website posts with the daily links.  These posts have subjects starting with the word ‘News:’ followed by a date or dates.  The last one I sent out was for September 20-21st.  You can see that I have gotten behind.
Why can’t I keep up?  I’ve had lower back problems for some time but I recently developed sciatic issues from sitting too much & have pain even with frequent breaks.  I also am helping a friend who runs a dog shelter do much-need computer work.  This is something I volunteered to do last year and she has just now asked for my help.  Plus, there’s the rest of my life! 😉
Woman on the computer saying “I was going to clean my house…but then someone commented on my status.”
OK, that’s my story and I’m sticking to it!  Come join us on Facebook, hope to see you there!

Sue’s New Page 9/28/2016

One of the major issues for those who have had to quit driving because of vision problems is transportation.  Sue has been able to set up a complicated transit system for herself made up of rides from friends and co-workers and public transportation.  There is no room for error, there is no deciding at the last minute that you want to go to the grocery story.  Every day she has a previously-scheduled way of getting where she needs to go.

From One Point to Another

Sue’s New Page 9/23/2016

By now you know that Sue needs to keep busy.  That hasn’t changed from before her vision change.  She has lots of things to do outside her home and if there’s a lull in that activity and she’s “stuck at home” [her words, not mine], she admits that she’s not a Susie Homemaker type.  In this page, she talks about the kinds of things that people with impaired vision can do to make home a safe place.

There’s No Place Like Home

News: September 20-21, 2016

These are the links shared in the Facebook group for these dates.

News: September 17-18-19, 2016

These are the links shared in the Facebook group for these date.

Sue’s New Page 9/19/2016

You are probably familiar with Murphy’s Law: “Anything that can go wrong, will go wrong.”  You are also probably familiar with the term catastrophizing, ie, having irrational thoughts about things.  Even as much as she is a positive person, Sue is subject to them both.  In this page, she gives us constructive ways to deal with them.

Murphy’s Law

 

News: Sept. 15-16, 2016

These are the links shared in the Facebook group for these date.

Correction: in the previous post, I said this was a support group in Austin, Texas, but it’s Austin, Minnesota.

News: Sept. 12-13-14, 2016

These are the links shared in the Facebook group for these dates

Sue’s New Page 9/15/2016

Sue says “Today gets mixed reviews.” She taught, walked the dog (Beastie Baby), ordered groceries from Amazon Prime and… “What! You walked to the grocery store after dark just for milk!” – that was me when she told me.  She justifies it here but I was still not happy being the protective (or overprotective) friend that I am.  What do YOU think about it?

Breathe and Accept 

News: Sept. 9-10-11, 2016

These are the links shared in the Facebook group for these dates.

Sue’s New Page 9/10/2016

Sue has lived in the same place for probably 30 years…or more.  She has 3 or 4 organizations that she works for, several exercise classes she attends regularly.  Her license is in Pennsylvania and that’s where she will work for as long as she can. The eye hospital where the clinical trial she hopes to be in is not far.

One of the most important parts of her life there, one that she has built and nurtured for all these years, is the community of people who have helped her since her vision changed.   This is not a time to move.  This is a time for her to say…

I Love My People

News: Sept. 7-8, 2016

These are the links shared in the Facebook group for these dates.

Updated: Is there a relationship between cataracts and macular degeneration?

Disclaimer: I’m NOT a medical person & this isn’t advice. I do research on topics & summarize what I find to try to make it more understandable. –Linda…

What is a cataract?

“A cataract is a cloudy or opaque area in the normally clear lens of the eye. Depending upon its size and location, it can interfere with normal vision. Most cataracts develop in people over age 55, but they occasionally occur in infants and young children. Usually cataracts develop in both eyes, but one may be worse than the other.” From Glossary of Eye and Vision Conditions

Here’s a good video from the National Eye Institute “Cataracts”

Here’s a very comprehensive website section with not only statistics from the UK but also sections on what they are, what medications are used with them, and where you can get more information.

Cataract removal in someone with AMD

Question is how much of one’s poor vision is from the cataract & how much from the AMD? Depends on the severity of the cataract & stage of the AMD.

Possible Benefits

From Cataracts & Age-Related Macular Degeneration

  • if it’s mild AMD, cataract removal may improve acuity even of central vision.
  • if more advanced AMD, removal may help with color discrimination, contrast, clarity or peripheral vision.
  • if it’s wet AMD which hasn’t been stabilized, see ‘Risks’ below.
  • if it’s a thick cataract that prevents the doctor from seeing the macula clearly especially if there’s a high risk for wet AMD, removal may aid the doctor in accurate diagnosis of condition of the macula.
Risks of cataract removal in someone with AMD

Basically the same as those without AMD except when the AMD is not stabilized – more below.  In general, it’s considered to be a low-risk procedure.

Considerations:
  • the natural lens (that’s what turns yellow and is called a cataract) filters blue light but you can get an IOL (Intraocular Lens) that will help to filter some of it out (no evidence this reduces vision).
  • risk of Posterior Vitreous Detachment (PVD) which can result in floaters or retinal holes or retinal detachments (holes or detachments can occur in the macula).
  • inflammation related to AMD. Solution: pre-op NSAIDS (anti-inflammatories).
    • From Cataract Surgery in the Patient with AMD
      “Additionally, growing evidence supports a pathogenic role for inflammation in AMD, and the normal inflammatory response that accompanies cataract surgery, even when uncomplicated, may be deleterious to at-risk eyes. However, epidemiologic studies to date have failed to prove definitively that cataract surgery is associated with AMD progression. “
    • From Cataract Surgery in the Patient with AMD “In summary, in the patient with a visually significant cataract, AMD should not be considered a contraindication to cataract surgery, and surgery need not be delayed for fear of causing advanced AMD. Factors such as IOL selection and peri-operative management may optimize visual outcome and reduce the risk of AMD progression.

Other references:

Cataracts and Macular Degeneration from WebRN-MacularDegeneration.com

The Impact of Cataract Surgery on Pre-existing Retinal Disease

updated 1/27/2017

News: Sept. 5-6, 2016

These are links that I shared with the Facebook group for these dates.