From Diagnosis to Decision – June 2023 Since Sue has not written any new journal pages for some time, the site has been archived until we can decide if the work necessary to make sure all information is accurate and up-to-date can be made.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.
February is Low Vision and Macular Degeneration Awareness month. I’m asking members of our Facebook group – and now YOU – to write a short statement with advice as to how to deal with the diagnosis. I have these so far. I would LOVE to have our other countries represented. You can put your advice in a reply to this page or email it to me at light2sight5153@gmail.com.
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When I was diagnosed with dry AMD, my eye doctor had me look at an Amsler grid, and asked me if the lines looked wavy. They didn’t look wavy to me, but he proceeded to tell me I had early stage AMD in my right eye. He also said it was a slowly progression eye disease and maybe in 20 years there would be more treatments to help me. That was it. Nothing to tell me what to do, how to live with AMD or anything. I have since done a lot of research on my own which has helped me understand AMD better. LH Hot Springs, AR
If you are diagnosed with wet MD, don’t delay, start injections immediately, the slight discomfort and inconvenience are well worth saving your vision! If it’s dry MD, take the eye vitamins your dr. recommends, don’t forget! Do your research. PE Montgomery, Texas
Check your Amsler Grid regularly, it’s often your first indication that something is wrong. JR, Ontario, Canada
Don’t get depressed! Eight years after diagnosis, with the right lighting, I can still do almost everything, I did give up needlepoint, but it was boring. Life is good! JZ, North Carolina
Give yourself time to accept the diagnosis. A punch in the stomach takes your breath away but with time you will be able breathe again for throughout the world there is unbelievable research, support and hope. You are not alone. SH Chicago
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:
email followers on the website who receive emails with new posts from the website;
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!
There are so many things that we take for granted, one of them is the convenience of getting into the car and driving to the grocery store. Sue tells us that we need to work on our planning skills & gives us some options for getting our eggs and milk.
This will be the last page I’ll publish before I take a break (I’m ‘getting out of Dodge’, too) until Monday, August 8th. There won’t be a Daily News Post until then as well. I’ll be baaccckkk! Lin/Linda…
We all need hugs but sometimes there just isn’t anyone handy. We CAN hug ourselves.
