Tag: Facebook group

I’m Bored – Again!

Hi, there! Again, I have not been given an assignment but I AM writing for a very good reason: I am bored! Nothing I should do is appealing. So I am going to write about…whatever. Send me an assignment if you don’t want this to continue happening. [Lin/Linda: yes, PLEASE give her something to do. She’s not happy if she’s bored, and “if she’s not happy, …” Do you know the rest of this phrase? ::grin::]

First of all, I understand we have had a large number of new Facebook group members. Although I am not one of your number, welcome! I think you will find we are a “country” without strict borders. Nearly all are welcome.

We do keep a dedication to the scientific method of inquiry. That means we like to have information that has been researched and proven to have, if not a definite answer to our communal problem, at least a flicker they are on the right road. In other words, if your great aunt heard that burning pocket lint in the microwave and huffing the smoke is a cure, we don’t want to hear about it. If that same process is being written up in a scientific journal, let us know!

We are also – as of this instant – nonprofit. Very nonprofit. If we are not making money on this project, NOBODY is making money. Therefore we do not take advertising, either straightforward or covert. People who have blatantly tried to sell things on these pages have been asked to leave.

If we can get you a hot discount on something we have used ourselves, we will do so. Occasionally you will see a page about a particular brand of merchandise. It s because one of us has been able to get a good deal.

That is pretty much it. Beyond basic civility, two rules: research-based and no advertising. Simple.

From what I understand – remember I am telling you my version of the “rules”, and I am not even ON FB! The girl can have attitude! – Lin has asked some people to watch the professional and lay media and report back. Want a job? I suspect she could use volunteers. [Absolutely LOVE volunteers!]

Leaving me something like 165-160 – words to share some info. I try to keep these pages to about 500 words. I cannot say for you, but my reading speed is significantly slower than it was. I don’t do well with dense prose. I assume you have the same problem.

News? Healio is reporting there may be a new anti-VEGF “kid” in town. Klondike Sciences recently finished a phase 1 trial on a compound called KSI-301. I am thinking the 301 means the 301st attempt. Maybe? In that case they are nothing if not persistent!

Be that as it may, the results were promising enough to do what will probably be a phase 2a study. That is another safety and tolerability study with more subjects. It is still early in the game for KSI-301 but it might prove to be of value.

Running out on my word count, so allow me to again say welcome! If you have a topic you would like researched, please let us know. As you can see, I get in trouble when I have nothing to do! [She does!]

Please ask! As a value we also have member empowerment. You remember Scholastic Rock? We learn because “Knowledge is Power!” Let us empower one another.

Bye!

Written January 4th, 2019

Next: THE TIME TO PREPARE IS NOW

First Link on the Chain of Kindness

“From each according to his ability, to each according to his need.” – Karl Marx

I thought that was from the Communist Manifesto. It appears it is not. It is from the Critique of the Gotha Programme…..Huh?….Nope. No clue. I could probably look it up and give you a full critique of the Critique, but that is too much like work and I rather doubt most of you are all that interested.

What made me think of Marx and his quote – other than my mind works in really weird ways! – was a comment Lin made. She said many people in the Facebook group are concerned about their independence.

I was right there with you folks. There are times I am still right there with you. I would love to be able to drive and have all the freedom that brings. However, as my husband pointed out to me the other day, just about the only thing I have given up is driving. I still work. I still exercise. I still socialize. I get the job done with a few new tools and a little help from my community.

Community – Communism. Like I said, my mind works in strange ways.

These days it is not so much I am independent as I am interdependent. Interdependence is the dependence of two or more things or people upon each other. From each according to his ability. To each according to his need. If you think about it, that is exactly the way a community is supposed to work.

The other week I paid for a young lady’s skiing. I wanted to go and she could get me there. Her problem was money. My ride home from school is devout but knows little about the Bible she has started to read. I am not devout, but know more than she about the Testaments. We sometimes do a Bible study on the way home. I need a ride and she wants the information. (Proving the old saying that even the devil can cite Scripture?)

And it does not have to be a direct exchange. Sometimes I ‘pay’ the people doing something for me by doing something for someone else. Passing on the favor is a great way to improve your day as well as the world. You might even want to pay it forward and do something for someone who has never done anything for you just ‘because’.

Start the chain of kindness and be the first link.

Which brings up another thought: I suspect many of you are of a ‘certain age’. I also suspect many of you have done for your community for some time. Don’t forget you just may have a positive balance in your community account. It is alright to occasionally make a withdrawal.

Perhaps what I am saying is, to a certain extent, independence is a delusion. We have all always been interdependent. With a vision loss, you just become more so.

How can you contribute to your community? What do you need from your community? From each according to his ability. To each according to his need. Together it really is possible to maintain lives worth living. Support one another. Take the support you need. Continue reading “First Link on the Chain of Kindness”

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!
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