macular degeneration, macular, diagnosis This Project – My Macular Degeneration Journey/Journal

Let Us Try

Happy Monday! Martin Luther King Day in the US so there is no school. I forgot and had my ride scheduled so I had to cancel. Oh well….

Home and doing odds and ends. Lin reminded me it was the end of January two years ago I started on this ‘adventure’ in earnest. I should have given it more thought myself. It is now ski weather here and I have been trying to find ways to the slopes. People don’t like to give me the time of day when I contact organizations.

They imagine being in charge of some decrepit, old, blind woman flailing her white cane as she flies down the slope! Not exactly the case. Many of us are actually very competent and independent given our vision losses.

Vision loss bring up thoughts of skiing? Yeah, sorry. It was right after a glorious day on the slopes that I ‘lost’ my second eye just about two years ago. I was in a tizzy. But keep in mind, I was skiing three times last year (thanks to my husband and the daughter of a friend) and I am going to try to get there three times this year. And if I get there and discover I am no longer capable? I tried.

That is probably one of the things I like to preach about vision loss, or at least my level of vision loss. (You can never tell how you may react if given a greater challenge so be kind to yourself). You never know until you try. There are all sorts of ways to skin the proverbial cat (although I am not sure why you would want to!) and you just may have to try a few of them before you hit upon one that works.

The flip side of that coin is this: if you are a caregiver, friend, spouse, child, whatever to a visually impaired person, give us a chance and let us try. As long as we are not going to cause mayhem or mass destruction, what is the harm? Sure, be there to bail us out if you insist, but let us try.

Now remember, I am not talking about operating heavy machinery – yes, such as a car – but walking, skiing, riding a bike, even things like using the microwave or the washer; I am pretty sure many of us can have those things covered if given the chance.

Our vision loss has taken away some of our independence. Please don’t take away the rest.

When we started this project, I was asked what I thought others could do to help the newly visually impaired. I said it would be to support that person in continuing to be herself. Looking back, I agree with myself.

So I guess my message for our second anniversary would be this: Find ways to be you. AMD has taken part of your sight, not part of your soul. Find people who will help you to remain yourself, foster your talents and promote your interests. If they are not in your life now. Find them.

Remember, you need you and we need you, too.

And now I guess I need to try somebody who will give me a ride to the slopes!

Written 1/15/2018 Continue reading “Let Us Try”

Some of Yours

Just logged on to check my email and the first thing I found was another phishing attempt. Oh, for crying out loud! These things are coming faster and the ‘phishermen’ are getting bolder.

This one was ‘from’ my email provider. Not only did they want my username AND password but they were also trying for a credit card number. Good grief. Do I look like I just fell off the turnip truck?

The problem is, for every 999 people who have not just fallen off the turnip truck, there is one who has. That is all the scammers need to make a killing.

So, just in case we have a reader who is not ‘scam savvy’, a couple of tips: scammers are often non-English speakers but the messages are in English. Misspelled? Clumsy wording? Be aware. Ask for your password? Run the other way. Soliciting a credit card number from you? Contact customer service and ask them. Do not give a credit card number out to anyone who asks for it. Lastly, check the details on the email. If it come from Sylvester in Syracuse you probably have a scammer.

Anything suspicious can get forwarded to your service provider. I also label anything from that sender as spam so I don’t have to deal with him again.

Just another public service announcement.

Oh! And I just noticed something wild. My service provider lists as ‘tells’ for phishing attempts the following: asking for personal information, mass mailings and details (show details). That spells AMD. How about that? [Lin/Linda: ::groan:: you are REALLY stretching it!!!]

And after all that, I want to talk about pessimism/optimism. Another good grief. I know the shady morals of so many is not necessarily a reason to be upbeat and sunny. My delivery and timing stink. However, if you look at it another way, we are looking out for one another and that is positive. Yes? Yes!

Lin asked me to read Dan Roberts article about how so many of us see a more dismal future than others our age who do not have AMD. The piece says we expect health deterioration and Lord knows how many other bad things just because we have vision loss.

The first thing I thought about was why should vision loss lead to worse health than any other sensory or orthopedic or general health issue? Sounds like the depression talking to me.

Roberts emphasized there being so much reason for optimism with all the tools and medical breakthroughs. I agree with him totally on that. That is part of the reason we continually share news on research and ‘toys’.

However, what I think his real message was was this: the study did not differentiate between those actually getting the information, the training and the support and those who are not. Roberts asks what the differences would be. He also asks – about knowledge and skills training lapses – the question “why not?”.

You see things and ask “Why?” but I dream things and I say “Why not?” – George Bernard Shaw

(And, yes, JFK paraphrased it a bit but he took it from Shaw.)

Part of the reason for this website is to spread knowledge and to spread hope. Every day progress is being made. Every day things are happening to make our lives – as the visually impaired – easier.

Know someone without knowledge? Someone without hope? Give him some of yours. We want to be able to say “Dan, we hear you and we are trying to do our part.”

Written October 29th, 2017 Continue reading “Some of Yours”

I Told You So!

I admit many faults in these pages. One of my many faults is enjoying saying “I told you so!”

OK, that’s out of the way, Lin suggested I write a page admitting I have run out of things to write about. My muse has taken a vacation. I have had very few clues what to write about and I have been grasping at any and all ideas.

I have also gotten busy again. The girl has all sorts of crazy things on the calendar. Lots of work and more than my fair share of play. Many years ago I decided I would go to my death-bed with very few regrets. I don’t like to say “I wish I had”.

As opposed to liking to say “I told you so!’ bringing me back to my topic. Lin said I did not need to worry. She said I would never run out of idea. Ha! Sometimes she knows me very well and sometimes she doesn’t.

The point is this: I am in a place that is almost the normal (and I use that word very tongue in cheek) me. I am living MY life. I am not living a pale substitute nor am I always settling for second or third best. My life is full.

And I am doing it visually impaired.

Is this state of affairs going to last? I sincerely doubt it. I am 64 and ridiculously, blessedly healthy. May not last. I know the 64 part is not going to last. Where do the years go? Weren’t we just 24 yesterday?

I have dry AMD with geographic atrophy. My blur is not too bad. With my toys I make do. The only thing I really (really, really) miss is driving and my support system is beyond awesome. Will my vision worsen? Probably. Will I not be able to participate as I would like? Dunno. Perhaps. Probably?

But if and when my vision does get worse, I will have a lot of thoughts about that new part of the journey. Probably be back to writing every day for a while. In many ways these pages have been my therapy. I will need to vent.

In the meantime we are again looking for people with something to say. People who are in the throes of the battle instead of on R&R for a while. Some people who can help others through the journey by sharing their unique experiences.

Until we find these people, Lin will republish earlier pages. I will occasionally chime in with something new, mostly informational at this point. Be assured I will not hope to have a decline in vision just so I have something to write about! I am hoping this lull lasts for a very long time.

There we are. I am out of ideas. I told you so!

Written September 26th, 2017 Continue reading “I Told You So!”

Bad Press!

Being a little aggravated here. I was online doing a search for what is new in AMD and came upon two, January, 2017 articles in WebMD. I found the first one, Age-Related Macular Degeneration Treatment, 1/12/17 to be wildly misleading. Nowhere in the article did it discriminate adequately between the two types of AMD and it implied anti-VEGF and similar treatments are effective with both forms of AMD. Not hardly! REALLY ticked me off.

I searched until I found a contact number and shot off an email. See if they answer me. See if they actually have the guts to admit the article is misleading. I asked they pull it and give it a rewriting.

You know Lin and I are educators in ‘another life’. You know we try very hard to bring you nothing but quality information…and a little goofiness on my part.? Therefore it is upsetting to us to see misleading information coming from what is generally a respected source. Really! We do our homework and we don’t even get paid for it! The least these people can do – being paid, by the way – is the same.

That said, no one is perfect. If you find anything, ANYTHING you question on this site, shoot us off an email and say something. We will research it further and get back to you. Don’t be afraid to upset us or to make waves. I get mad but I get over it, especially if I can be proven wrong. Then I feel stupid and apologize. [Lin/Linda: what Sue said.]

If you find anything in the press you question, send it along. We can look into it and see if we agree with you that it is, at best, ‘off’. I write a really good, intellectual-sounding and polite email that boils down to “do you have a freakin’ CLUE what you are talking about there, honey????” I don’t mind writing them and I do occasionally enjoy a good rant. Gets the juices flowing.

Bottom line is we aim to inform and we aim to inform accurately. If that is not happening, you have the right to send us your own emails and set us straight.

We are on this journey together. Feel free to help us stay on course. Continue reading “Bad Press!”

One Year Anniversary: Part 3 Our Friendship, Our Project

Lin/Linda here.  A year ago this month, Sue and I were discussing how to get together in August when I would be in Western Pennsylvania.  We had also been talking about how I might find a job because, to be honest, I really wasn’t challenging myself enough. Plus, I’d just been through several years of one traumatic event after the other and I knew it was time to move on.

On January 31st, Sue had gone downhill skiing. You can read about that in A Perfect Storm.  It wasn’t long after that when I knew things had changed. Over the years, we’d settled into a routine of exchanging emails not phone calls or texts – they were reserved for sharing mostly bad news and we both had our share of that. So I knew things had gone seriously wrong with Sue when I started getting texts from her. I got a particularly upsetting one after an appointment with her ophthalmologist so I picked up the phone and called her. “I’m not an old person! This only happens to old people!”

I cannot tell you how hard it was to be 700 miles away at that moment!

There were frantic emails, texts, phone calls. She was having panic attacks. I had panic attacks but Sue was the last person in the world I’d expect to have them so I knew this was a serious situation. She said in an email “I am pretty much sick with dread.”  What can I do to help? ::gulp:: I honestly did NOT know.

It was in an email to me on February 13th when she said “Just had a curiosity, have you ever written a blog? I was thinking it might be both good therapy and a way to share some of this ‘nonsense’ and knowledge with other people.“ I told her I hadn’t but that I was sure I could do something.

The rest, as they say, is the history of how the website got its start.

I struggled to get my very-much-out-of-practice brain focused on learning the software I needed to create the website for her journal pages. At the same time, I was emailing with Sue daily, sometimes several times a day, to keep up with what she was doing. I spent half my time in the early days trying to figure out what she meant in her emails when she was trying to learn to dictate them.

I wish I’d saved them all but I didn’t.  Two notable ones:  she wrote about her neighbor’s ‘brisket ankle’ which was a ‘broken ankle’ and ‘toxo plus Moses’ was ‘toxoplasmosis’.  ::big grin::

The website part of the project went ‘live’ with the first of her pages on February 25th. There were glitches but Sue and I we developed a routine that is still in place (you can read about it in About Our Project). Somewhere along the way, I volunteered to do research and create the blog part of our project so that we could provide up-to-date information.  We added the Facebook group on May of last year.

Sue wrote about what she learned. As for me, I have been reminded that when it comes to doing the research, it’s as Aristotle said: “The more you know, the more you know you don’t know.” I learned a lot about macular degeneration of various types, of course.

I learned that we know so much more about macular degeneration than we did 10 years ago and that there is a lot of hope for the next 10 years.

And I did learn that my brain does still work – most of the time – after some coaxing and as long as I’ve had my second cup of coffee. ::grin::

What I did NOT learn, because it is not news to me, is that my dear friend Sue, when faced with adversity, has an amazing ability to rise above uncertainly and fear. And she has done this with honesty and humor, two of her most endearing qualities (of course there are many others ::grin::). It’s been a roller coaster year for her and I’ve been beside her on the ride – we both have had enough of that. There’s some comfort taking the Ferris Wheel instead!

written 1/26/2017

Continue reading “One Year Anniversary: Part 3 Our Friendship, Our Project”

One Year Anniversary: Part 1 What I’ve Learned

First week of February, 2016 I started my life as a visually impaired individual. Those were not my finest hours. My left eye had been ‘gone’ for at least six months. Maybe longer. I still did not miss it all that much.

“In the land of the blind the one-eyed man is king.”  (Desiderius Erasmus Roterodamus).

I was able to do just fine with my right eye and never considered myself to be handicapped. I stood above that level. I was highly capable and doing just fine.

I also never considered my second eye could fail me virtually overnight. Still, believe it or not, it happened. I went from being a fully functional professional to someone who could not see to read a computer screen and who was having three and four panic attacks a night. Like I said, not my finest hours.

Fast forward to the first week of February, 2017. I write this a couple of weeks ahead of time and hope to Hades nothing falls apart until this gets published, but I want to tell you, on this the first birthday of my ‘new life’, I’m okay. (Unless all hell break loose again, in which case, all bets are off! In that case, please ignore this page ?)

A year ago, I had my doubts. Big doubts that life could ever be livable again. You might be there right now. You might be wondering where you will be in a year.

I stand here to tell you it is not the same, it is not perfect, but it is not as bad as you imagine it could be. Humans are highly adaptable creatures if they give themselves permission to be so.

Allow yourself to grow and you will surprise yourself. Promise.

What else have I learned in the past year? More than I EVER wanted to know about eyeballs and progressive, degenerative retina disease. It has become my ‘hot topic’. Get me started and I can clear out a room! Suddenly everyone else has something he needs urgently to do!

I have learned I am surrounded by some of the finest people in the known Universe.

That is both on and off planet?. People are incredibly kind and want nothing more than to help.

I have learned there are amazing devices and futuristic research out there.

Much of it is aimed at improving the functioning levels and the lives of us, the visually impaired. When I say this is the best time in history thus far to be going blind, I am not blowing sunshine up your skirt! It is ever so true. We live in amazing times.

Am I going to be able to function this well for ever? No. Progressive, degenerative disease here. I know it is eating away at things in there. I know one of these days I will have to quit work and become even more dependent on others. But see paragraph above. I do not believe I will be blind forever. I have serious hope and I believe that even if I go blind, I will see again.

So for now, 365 days down. One day at a time for however long it takes. Continue reading “One Year Anniversary: Part 1 What I’ve Learned”

My Soapbox

October 18th and it is above 80! Not sure what is happening. Global warming?

Anyway, I have an offer to go to the last, open-air yoga session of the season. Sold!

People are too dang good to me and I love it! I would be a sniveling lump in the corner without everyone’s support. I don’t do well twiddling my thumbs.

Worked hard all day. I am thinking I goof off less now because I have something to prove…or I think I have to try harder so they get value for their dollar and to make up for my disability or something! Be that as it may, a few things got done. You know how it is: nothing is ever straight forward. 27 things you need for the job have to be found or fixed before you can get one thing done.

I was at a conference yesterday. Six continuing education credits down and 24 to go! At least I am doing better than I was.☺

They said they were going to have a low table for me. No such luck and I ended up sitting on the floor again. I arranged my Justand, papers, diet Pepsi, etc, around me and got as comfortable as I could.

Thank goodness I am a floor sitter from way back. Learned a lesson, though: don’t expect a table even if they promise you one.

The Justand caused a stir. People asked about it and I gave out the website address a few times. Everyone has a mother, a brother or a cousin with AMD, it seems.

Lin and I have decided it is time for business cards. Ain’t we just so professional??

I guess the lesson from yesterday was to not be afraid to talk about your vision. People are receptive. They are helpful. For every one of us out there in the world trying to make it, how many are there huddled at home, depressed and afraid? How many have no idea of the support that is available? I am thinking it is part of our job to make sure the word gets out. Also, lead by example.

OK. Off my soapbox, but I thought I was rather stirring!?

And speaking of supports, I emailed my low vision specialist today. I wanted to know how to get a replacement for my Max TV lenses. The one lens has fallen off about a dozen times and now it won’t focus well.

I have to return the bad pair and she is mailing me a replacement. Yippee!  She said she has never had a pair break before. What can I say? My husband always says I am hard on parts!

Gotta get ready for yoga. Chat with you later! Continue reading “My Soapbox”

I Have Macular Degeneration…Now What?

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.

Where can I quickly find information about AMD?

One of the best resources available is from the Prevent Blindness organization’s website called Guide Me.  You answer a few questions and you will get a personalized guide with important aspects of AMD based on your answers:

Click here to go to Guide Me.

Click here to watch a 4-minute video that explains what AMD is, what causes it, and what can be done about it.

Click here for a good list of Frequently Asked Questions.

Click here to go to a great site maculardegeneration.net where you will find articles written by people with macular degeneration and caregivers. They also have a Facebook page.

What other websites are helpful?

Here are some of our favorites:

Click here to find out should I take the AREDS or AREDS2 supplements?

Click here for a video that covers important information about AMD

Click here for a description of dry vs. wet AMD (we are not recommending any products in this article, but be aware that the site may profit from some products they advertise.)

Click here for an explanation of the stages of AMD (we are not recommending any products in this article, but be aware that the site may profit from some products they advertise.)

Click here to read about what happens if you have AMD in only one eye

Click here for some answers to common questions about depression after diagnosis

Click here for an article about how vision rehabilitation helps prevent long-term depression

Click here for a very comprehensive page about wet AMD

Click here for a very comprehensive page about dry AMD

Click here for an article about how fast AMD progresses

Click here for 10 questions to ask your doctor

Click here to find a support group (I’ve been told that this site may not be up-to-date. Ask your eye specialist for a referral.)

Click here for eye-healthy foods including a Healthy Vision Grocery List (2/14/2022 site wasn’t formatting properly.) Click here to read the answer to the question ‘What should I be eating or not eating to hopefully slow the progression of my AMD?’

Click here to find out what vision changes/symptoms to look for (we are not recommending any products in this article, but be aware that the site may profit from some products they advertise.)

Click here to find out about the people who can help you (what are the differences between the types of eye doctors, do I need to see a specialist, etc)

Click here for tips on how to make the most of the vision you have (section toward the bottom of the page; lots of other good information on the whole page)

Click here for a FAQ (Frequently Asked Questions) from the Macular Disease Foundation Australia.

Click here for a FAQ (Frequently Asked Questions) from our Facebook group.

Where can I do more research?

You can do searches on the Internet – there is a LOT of information there.  We have done a lot of research and here’s how you can find it.

Click here to go to How to Navigate and Search Our Website.

Join our very active Facebook group Our Macular Degeneration Journey. There’s lots more information there as well as support whenever you need it.

How do I move around on the website?

Click here to go to How to Navigate and Search Our Website.

To find about more about me, about Sue, about our project, go to the menu at the top of the page.

Reviewed 02/14/2022

 

 

 

 

Your Cards and Letters

I step out of the sequence because I believe in prompt reinforcement. It is a basic tenet in learning theory. If there is a behavior you like, reinforce quickly. Otherwise too many things happen in between and the kid may decide you have reinforced him for another behavior. We don’t want Johnny thinking he has gotten the sticker for picking his nose in class, for example. (Sorry. Mind works in mysterious ways, but you get my point.)

I want to say how pleased I am with the comments that have come in! I love class participation! Things go better when we share our experiences and help one another.

Many of you may not think you have anything to share. Not true. You are accumulating experiences and knowledge along the way just as I have been doing. The only difference is I have the digital age version of ‘diarrhea of the mouth’ and I don’t know when to stop dribbling these things out! This page is getting sort of ‘I C K!’ Isn’t it? [To Lin: And, no, that does not need to be capitals but autocorrect insisted 7 TIMES that I was trying to write ‘pick’! Does that make sense????? Nooooooo. Lin, I tell you half of the mistakes are not my fault. It is autocorrect. Really.]

Anyway, back on track, if I am actually capable of that…..I love the sharing. I like the idea of the LED lights and the thoughts on transportation and shopping as well as the other helpful comments.

I like the personal reflections on how AMD is affecting lives. I even like the compliments although sometimes I think people lay it on a bit thick! ? (That’s what comes of having friends as subscribers. My ‘ringers’ in the crowd who make me look good!  Thank you!!!! Love you, too, but I am still just your simple, country psychologist. ?)

The other nice thing I like about comments is they are food for thought for me. Those of you who have been living with AMD know there are long stretches of time when pretty much nuthin’ is happening. Sometimes I really have to dig and work this poor little head to come up with ideas. Everyday is not joy or angst. Some days are just plain old dull.

So there you go, keep those cards and letters coming. Love to hear from you!

written 8/20/2016

Continue reading “Your Cards and Letters”

About Our Project

Lin/Linda here: You may wonder how we manage this website.  I’ve had a few people ask me about it because they know that Sue and I live about 700 miles from each other.  There’s also an international connection…read on!

The reason there is all of this is because of Sue’s mission to help others who are going through something similar.  Soon I will be publishing her 100th page!  I published her first page (In the Beginning) on February 25th, 2016.  I’m writing this on July 26th, 2016, which is 5 months, 1 day, later.

If you haven’t had a chance to learn more about Sue, I suggest you go to these pages:

As to how we know each other & for a little more about me, I suggest you go to:

A page is born

It all starts when Sue writes her page in Pennsylvania.  She then sends it to me by email in Georgia.  When I get the email, I do minor edits and add the links.  I send it back to Sue for proofreading.

Sometimes editing Sue’s first draft (and reading her emails) means trying to figure out what her typos mean (love auto-correct).  For example, I had to figure out that ‘a brisket ankle’ meant a ‘broken ankle’ and that ‘toxo plus Moses’ was ‘toxoplasmosis’.  Great entertainment sometimes!

The international connection is with the Midlands of England where my dear friend Lesley lives.  When I send Sue the page to proofread, I also send it to Lesley to proofread and check all the links.  Lesley is amazing, she regularly finds things that both Sue & I miss!!

If Sue and/or Lesley find problems, they tell me about them and I fix them.  When the page gets the OK from both of them, I add it to my ‘ready to publish’ list.

Time Travel

Somewhere along the line, Sue was sometimes writing more than 1 page a day.  We decided to publish a page every other day so now we are publishing pages that were written in the past. For example, on July 26th, I published a page that was written on May 19th.  That sometimes makes things tricky but I reread each page before I publish it and change anything that is time sensitive.

That’s how we do what we do!  Questions?

Home

 

 

Attention Walmart Shoppers

I had two ‘firsts’ yesterday. Not that I had not done them each a thousand times before but these were the first times I had done them as the new – but not necessarily improved – me.

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!

Just the same, my husband was not going in with me, so I put on my big girl panties and sallied forth. Here goes nothing.

First thing, make sure you know where the car is, Susie Q. I have already walked up to strange cars at the dog park. If anyone had actually been in them it would have been embarrassing.

I got in the store and got a cart. I know Walmart and knew what I needed. The problem came when I had to read what was in the cases of frozen foods.

Now, sticking your nose on boxes of frozen meals so that you can read them is probably frowned upon by health officers. We won’t even discuss the possibility of getting your nose stuck! So, I did a little Radical Acceptance (DBT concept) turned my mind (DBT alert here!) and got out my near point clip-on magnifiers. Sigh.

clipons
These are my clip-on magnifiers. They look very much alike but the one on the left side is for looking at things close (called near point) & the other is for looking at things farther away (far point).

Turning your mind is a DBT concept that says acceptance of a problem does not happen in one fell swoop. Shazam! I accept that I am visually handicapped. Uh, no. Acceptance happens over a series of decision points. I did not get my clip-ons out at Staples. I did not accept that I needed them and turned away. Bad decision. In WalMart I decided I needed to turn towards the truth and accept that I needed the help. Sort of bite the bullet – a dozen times a day if necessary.

Acceptance happens over a series of decision points. I didn’t use my clip-ons at Staples but I need to use them at Walmart.

OK. So I have two pairs of really funky looking clip-on magnifiers. One for near and one for far. Let me tell you, people stare. They especially stare when I flip them up and it looks like I have…what? Antennae ?

At school I have been working on the problem by having class meetings. “This is why I look stranger than usual. ” “This is what this is.”  What am I going to do at WalMart? Put it on the PA: “Walmart Shoppers, Please do not stare at the strange woman presently in frozen foods.” ?

So, I put on the clip-ons and people stare. So be it. I was able to use the credit card machine. Score.

I even put on my far point magnifiers to find my way across the parking lot. Technically not supposed to do that. They are actually for TV viewing and you are supposed to be stationary. Having everything magnified messes with depth perception. However, I was able to find the car and did not run into anything.  Besides, the far point magnifiers make me undershoot, not over shoot. I reach for something and it is a foot beyond where I thought it was. All sorts of new problems. Sigh.

I used my far point magnifiers in the parking lot and did not run into anything.

I also took my far point clip-ons with me on my second new me first. I rode my bike! To get to the trails I use, I have to cross two fairly major roads. I “turned my mind” towards acceptance of my limitations and walked my bike across the roads. Did not want to but I wanted to be roadkill even less. Used my far point clip-ons to check for traffic. If the drivers stared, I could not see them.

Written March 2016. Reviewed September 2018.

Continue reading “Attention Walmart Shoppers”

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:

  1. 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?
  2. Sue’s journal pages which are like chapters in a book
  3. Highlights & News which are basically blog posts
  4. 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.

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.