Category: Sue’s New Page

Sue’s New Page 4/24/2018

We think you have seen the picture of 2 little boys each holding a ball that is shown without any modification and then shown with a greyish ‘blob’ obstructing their faces with the rest of the picture blurry.  It was published by the NIH and is used to show what can happen in AMD.   No one questioned this representation until The Macular Partnership recently created 6 new variations & showed it to 6 people…and got 6 different answers!  We’d like YOU to look at these pictures to help us in…

Picturing AMD

I have drusen, does that mean I have macular degeneration?
Answers

From http://www.eyephysiciansoflongbeach.com/los-angeles/retina-center/macular-degeneration.htm
“No, not necessarily. About 50% of the population will show hard drusen and almost 100% the population above 50 will have at least one druse, but many will not develop macular degeneration. An examination by your doctor will help you better understand your risk and what to do about treatment.”

From http://www.webrn-maculardegeneration.com/macular-drusen.html
“Not necessarily. Many individuals with some drusen do not go on to develop the visual symptoms of ARMD. From a clinical standpoint, drusen must attain a threshold in numbers, size, and shape for them to become a matter of concern to ophthalmologists.” This article goes on to talk about drusen at the various stages of AMD, the difference between hard and soft drusen and can you prevent, slow down or reverse AMD.

From https://www.enhancedvision.com/low-vision-info/eye-conditions/what-are-macular-drusen.html
Article answers: what are drusen, types of drusen and questions for your doctor.

 

Be Patient

It has been a wicked weekend. I ran all over yesterday and today has turned into our own little version of Man vs. Wild. Personally I sort of think the best we can hope for is a draw!

Wild in our case is the puppygirls. They are channeling the Beastie Baby aka Houdini Dog. The girls have escaped twice today. They escaped twice last week, too.

My husband is a bit distraught. He thought he had built the Alcatraz of dog pens. Oops.

We have one neighbor who finds it amusing. She coos over the girls and gives them treats when they escape to her house.

Another neighbor is up in arms. What are we going to DO about this?

Well, we plug the holes as the girls find them. We are watching them more carefully. The pups are seven months old and this is all a work in progress. Be patient with us. You don’t always get things right the first time.

Patience is a virtue I often think I lack. Yesterday, waiting for the ‘Nerd Corps’ guy to do his magic, I was all over the place. But often you just have to wait for things in their own, good time. To use an old cliche, “Rome wasn’t built in a day”.

St Francis de Sales is quoted as saying “Be patient with everyone but above all with yourself…do not be disheartened with your imperfections but always rise up with fresh courage.” Wise man, Francis.

I was looking for articles written by psychologists and quoting research. What I found were pastors quoting saints. Not the usual fare of these pages but what the hey. Saints were leading and advising before the discipline of psychology was ever thought of.

As I said, I am not a patient woman. I have high standards for myself. I need to be active and independent. Therefore whenever things don’t come together like they ‘should’, whenever I cannot do what I want to do because of something like vision loss, I am upset. I want to do what I want to do!

It would appear coping with vision loss is rather like training puppies. It doesn’t matter you want results NOW. It doesn’t matter how upset you are with the situation. Things need time to develop and they will resolve in their own good time.

One of these days the girls will be dogs instead of puppies and they won’t want to wander and explore as much. One day my husband will find all the vulnerable spots in the fence and plug them…and one day we will learn to be just as efficient with vision loss as we were without vision loss.

…but that day is not today. In the meantime, be patient with everyone but above all with yourself. Rome wasn’t built in a day.

Next: Send Money

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Sue’s New Page 4/22/2018

First, there was the news from the UK’s Moorfields Hospital in London that stem cell-derived RPEs on a patch of material had improved the vision of 2 people with wet AMD.  Recently, similar news from the US that stem cell-derived RPEs on a patch of material had improved the vision of 2 people with geographic atrophy (advanced dry AMD).  What do they have in common?  If you live in California or Arizona, you might be able to get…

The Patch

It’s been 2 years since Sue started writing her journal pages and I added content from my research.  With all that content, we know it is hard to know where to start if you’ve not been following from the beginning.  Earlier this year I went through her journal pages and highlight some of her words to help you to find pages that may be helpful to you.

There are 4 Sue’s Musings pages, you can start here:

Sue’s Musings: Then and Now – Part 1 – 1/18/2018

I know that some of you save your favorite journal pages. Do YOU have a page you’d like to recommend?  If you do, add it in the comments section or email you recommendations to me at light2sight5153@gmail.com.  Thanks!

Sue’s New Page 4/19/2018

Stem cell research is very much in the news, not only in studies for macular degeneration but many other diseases as well.   Those working in this area have battled regulatory restraints for some time but it looks like much of that is over and stem cell research is moving on quickly.   In the area of AMD, several research projects are following…

Different Paths

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

Sue’s Best Pages: Part 1

Sue’s New Page 4/17/2018

Sue’s DBT webinar is one of the projects that has been keeping her busy.    She writes about some of the new skills she’s learning.  What do putting ice on your face or sucking on sour candy or naming the 50 states have in common?    Read and find those answers and also what it is that she says is…

All You Have to Lose

It’s been 2 years since Sue started writing her journal pages and I added content from my research.  With all that content, we know it is hard to know where to start if you’ve not been following from the beginning.  Earlier this year I went through her journal pages and highlight some of her words to help you to find pages that may be helpful to you.

There are 4 Sue’s Musings pages, you can start here:

Sue’s Musings: Then and Now – Part 1 – 1/18/2018

I know that some of you save your favorite journal pages. Do YOU have a page you’d like to recommend?  If you do, add it in the comments section or email you recommendations to me at light2sight5153@gmail.com.  Thanks!

 

 

Sue’s New Page 4/14/2018

Sue continues to discuss stem cell research.  Stem cells can be harvested from various sources and in this page, Sue covers the sometimes-controversial topic of embryonic stem cells.  We respect an individual’s right to object to their use.  Sue’s goal was simply to provide a…

Dissemination of Ideas and Facts

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

Sue’s Best Pages: Part 1

All You Have to Lose

Morning. Do you ever think that if it were not for feeling stressed you would feel nothing at all? Yep. Insanity still reigns. Just when I got things going the right directions with retirement and the webinar we need to listen to – not to mention other work for the psych office – the accountant sends the tax forms back. What I thought was going to be a credit is a debit. Somebody made a blunder. One hint: not me.

So, you may be hearing from me requesting bail money, but in the meantime I am going to use some skills on myself.

They have made some additions to the DBT skill set since I was trained. We are finding them in this webinar. One thing they are stressing is the brain-body connection. They are talking sympathetic and parasympathetic nervous systems, Vagus nerve and all that good stuff.

I know I hit on this a bit before. Bear with me. There is some neat stuff here and if you get very, very stressed out by life, the state of the world and/or the state of your vision, these things might help.

First of all, ever hear of the mammalian diving reflex? That is what happens when the toddler falls in the frozen river, is fished out from under the ice half an hour later and lives, no worse for wear.

Bending over, putting cold water on your face and holding your breath (15 seconds or so at a time for our purposes) will trigger this response. The reason we want to trigger it is it is fantastic for reducing stress reactions. Flipping out? Ice on your face, bend at the waist and hold your breath. It is sort of a quick, temporary fix but sometimes that is all we need.

There are other ways to stimulate the parasympathetic nervous system. That is the system that brings us down after the sympathetic system revs us up. For one thing you could eat a sour candy. Getting the saliva flowing is one way to reduce stress. Then there is always a good yawn or three or four. Yawning kick-starts the parasympathetic nervous system as well.

One of the distress tolerance skills we teach in DBT is distracting with thoughts. For a long time I thought it was distracting with complicated thoughts like doing calculus in your head. It potential could be, but it can also be simple, repetitive thought. In fact, simple repetitive thought function to disrupt the action of the default mode network of the brain.

According to Wikipedia the default mode of the brain activates when we are thinking about others, ourselves, past and future. Hmm….sounds like brooding and worrying to me.

A great way to block the action of the default mode and reduce worry is to do something verbal that is repetitive or tedious. You can mentally count or say the alphabet. Name the 50 states. Think of a name that starts with each letter.

Or you can go old school. How about the Lord’s prayer or om Shanti, Shanti, om? There are hundreds of mantras, religious and secular. Find one you like and repeat it over and over. All you have to lose is your worry.

Next: Different Paths

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Sue’s New Page 4/12/2018

In her previous page, Sue wrote about the first 2 items in the article Nine Things To Know About Stem Cell Treatments.   The first item on the list is “Currently, very few stem cell treatments have been proven safe and effective.”  The second is “There is something to lose when you try an unproven treatment.” She finishes these 2 with a discussion of finances, specifically, what you may have to pay for (travel, there may be lost wages) and what you should NEVER pay for (to be included in a clinical trial).  And then there’s the [unrelated] case of the…

Disappearing Fingerprints

Headworn Magnifiers

Here’s a good article about the head mounted (also called headworn or head worn) magnifiers, include the general advantages & disadvantages and reviews of some of the popular devices.

Head Mounted Electronic Magnifiers

 

Sue’s New Page 4/8/2018

Even though 90% of the people with AMD have the dry form, dry AMD seems to be underrepresented – even ‘underappreciated’ in clinical research.  Sue writes about an article where Dr. Philip Rosenfeld  at Bascom-Palmer Eye Institute basically says that dry AMD is a disease that gets…

No Respect

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

Sue’s Best Pages: Part 1

Sue’s New Page 4/6/2018

One of the low vision devices that Sue depends on is a CCTV which stands for Closed Circuit TV – not to be confused with what is used for security purposes. It’s a device that has a video camera that points down onto what you want to see. The image is shown on a monitor at eye level.  You can magnify and do other things depending on the capabilities of the device you are using.  They are expensive but Sue has written about how to turn an iPad into a CCTV for about $90.  Sam of The Blind Life has a less expensive way to do the same thing with any tablet.

DIY CCTV

It’s been 2 years since Sue started writing her journal pages and I added content from my research.  With all that content, we know it is hard to know where to start if you’ve not been following from the beginning.  Earlier this year I went through her journal pages and highlight some of her words to help you to find pages that may be helpful to you.

There are 4 Sue’s Musings pages, you can start here:

Sue’s Musings: Then and Now – Part 1 – 1/18/2018

I know that some of you save your favorite journal pages. Do YOU have a page you’d like to recommend?  If you do, add it in the comments section or email you recommendations to me at light2sight5153@gmail.com.  Thanks!

Sue’s New Page 4/4/2018

Would you be surprised if I published a page of Sue’s that talked about her relaxing with her feet up?  Or her writing about being caught up with everything such as housework,  report writing, etc? I would be! She does find time to share the latest low vision news, this time in regard to an interview with Professor Pete Coffey about the recent UK stem cell results which clarifies some points. Here’s the next installment in…

Bedlam Continue reading “Sue’s New Page 4/4/2018”

Disappearing Fingerprints

I am back. Yes, we have snow. About three inches. Shirt sleeves and sandals back to ski jackets and mukluks in less than 18 hours.

I am trying to get back into the webinar. When I lose the connection it kicks me right back to the beginning of the session and I have to fight with the scroll bar again. Thinking it may be the friction ridges on my fingers. They are barely there.

This is a real tangential subject – and I promise to get back on topic soon – but many of us are ‘of a certain age’ and might be interested in this. The simple fact is, as we age, our fingerprints disappear. If you ever wanted a life of crime, now may be the time!

No, seriously. They disappear. A few years back I had to renew my clearances and I had to go back to be fingerprinted at least three times. We finally just gave up and declared me safe to work with kids. It was crazy frustrating.

Another Aging Puzzle: The Case of the Disappearing Fingerprints has all sorts of neat info on this topic. You might want to look at it. Especially if you need to be fingerprinted for volunteer work or something. Get you prepared for having to go back and back and….

Back on subject: the article on nine things to think about when considering a stem cell trial. I am still looking at the bullets under the first point so this review might take a while.

Expense was another thing to consider that they mentioned. The last I looked the pay for the trial I want was $75 a day. Holiday Inn Express was giving discounts on rooms if you needed to stay. So basically, we might be able to stay for ‘free’ but meals, gas and wear and tear are going to be all ours.

Knew that. Actually, it is part of the reason I am retiring. Retired I have a pension, a guaranteed income even if I need to spend days in Philly. If you are still working and looking at clinical trials of any type, you will need to consider the possibility of lost wages. Nasty thought but it may need to happen.

Oh, and we have said this before but it is worth repeating:

We do NOT pay to be in stem cell trials or to get any other experimental treatment.

If some ‘doctor’ says he has a great, experimental treatment but you need to pay? Get out of there as quickly and graciously as possible and call your local medical ethics board. There is something wrong and it needs to be looked into.

Second bullet is covered. Yes, we know there are different types of stem cells. There is a whole bunch of science involved here but they have done all these manipulations to be sure the stem cells in my chosen trial are appropriate.

The caveat here is know your provider. Wills Eye Hospital has been ranked the second best in the nation. (What’s first? Bascom-Palmer in Miami.)

Carl Regillo, my retinologist, has credits as long as your leg. Open a page covering an ophthalmology convention and the boy’s picture is there. Too legit to quit…or to do shoddy research.

OK. That covers points 1 and 2. Bye!

Written April 2nd, 2018 Continue reading “Disappearing Fingerprints”

Behold the Turtle

Two days down on a three-day weekend. I am doing reasonably well with my ‘to do’ list. Progress through those is a good thing. It makes me feel a bit more accomplished.

I sent an Easter greeting to the researchers who will be conducting the clinical trial I have been trying to get into.  The answer I got was the trial that was slated to launch in March (never believe those predictions!) is now in startup phase and should be ready this Summer. Maybe.

Of course, I was hoping – still AM hoping! – to be a first draft pick lab rat and for the research to actually begin this Summer.  It will work out better for my schedule.

Not that the world revolves around moi…although it would make things a lot easier. You know what I am saying?

Of course, the treatment I have been wishin’ and’ hopin’ and thinkin’ and prayin’ (with apologies to Dionne Warwick way back in 1958) for is a stem cell treatment. Regenerative medicine. Therefore it was with interest that I read the article Nine Things You Should Know About Stem Cells that was shared in the Facebook group.

The article says there are complications that may occur with any treatment. The trial I am signed up for involves a vitrectomy.  Vitrectomies almost inevitably lead to cataracts. The stem cells themselves may trigger an innate, immune response that could cause more damage. Then there is the possibility the stem cells could be contaminated and cause infection. Or they might migrate and cause a growth.  There are dozens of potential SNAFUs. Most of us are old enough and wise enough to know there is no such thing as a sure thing.

If clinical trials were sure things they would not be called experiments. They would be called certainties. Who said “Behold the turtle. He only makes progress when he sticks his neck out”? (Found it. James Bryant Conant). Sometimes you have got to stick your neck out. You do it with thought. You do it with your eyes wide open but you do it.

Doing this trial will automatically make me ineligible for any other trials. That is just the way it works.  It is important the researchers know the results they got are a result of THEIR treatment. Not the result of a treatment you had somewhere else.

It is for that reason you chose a clinical trial with a treatment you have researched and believe in. We have a Facebook group member whom Lin told me was offered a trial with a treatment he was not sold on. He turned it down. You get one trial. You get one shot at this. Pick something you know about and believe in. [Lin/Linda: you can read about Facebook group member Bob O’Connell’s decision making process on page 2 of his Guest Author’s pages]

Those were just two points under the first of the nine reasons; believe it or not. I will look at the rest and may just write a follow-up page. Maybe not.  Right now, it is bedtime for this ‘turtle’.  Catch ya later!

Written April 1st, 2018 Continue reading “Behold the Turtle”

Sue’s New Page 4/2/2018

If you’ve been following Sue’s pages, you’ll not be surprised that she is again writing about something that she does that you should not.  This time it’s related to her love of bacon, lettuce & tomato (BLT) sandwiches with mayonnaise.  She writes about prostaglandins & their role in autoimmune disorders which is related to continuing evidence that AMD may be an autoimmune disease.  So…

Do As I Say – Again

Headworn Glasses/goggles for low vision
There are several types of glasses or goggles that help SOME people with low vision – not everyone, though. Most of them are actually hands-free magnifiers, like a CCTV (Closed Circuit TV, not security devices or Closed Caption FOR TV). Several things to do in evaluating them:
 
– make sure they have a return policy
– make sure they have the kind of support where you can call or email “How do I do…”
– make sure it has a good warranty in case something goes wrong
– make sure you have tried them for more than a few minutes
– if you have a problem with motion sickness, you may have a problem with these glasses. They are not intended to be used while walking and definitely NOT for driving
– find reviews that are not from the company who makes them
– consider getting a CCTV (you can use an iPad on a stand to do some of what a CCTV does) or at least compare the capabilities of each
– go to YouTube and find out if Sam of The Blind Life has reviewed them. He’s someone with low vision who reviews all kinds of devices and apps and is independent of any companies. Here’s his channel—> https://m.youtube.com/channel/UCNbzN3eHbLKPzltSB560DkA
 
I’ve created 2 pages to share the general features, prices, tasks for the most popular ones:

Sue’s New Page 3/31/2018

To say that Sue keeps busy is, well, an understatement.  And sometimes it leads to her feeling…

Overwhelmed – Again

Reading, large print materials. Can you still read large print? Don’t know where to find large print materials?
In the US
Here’s a GREAT list of places where you can buy or get a loan of all kinds of large print materials, from books to newspapers, to games, to religious books to dictionaries to magazines…and MORE! This is a page from the US National Library Service (NLS) in the US but I’m sure that many of these resources are available outside the US–>https://www.loc.gov/nls/resources/general-resources-on-disabilities/large-print-materials/
 
Also, many US libraries have a special-format library service that can help you find large print materials. Here’s a way to find a library near you that has this service–>https://www.loc.gov/nls/braille-audio-reading-materials/find-a-local-library/
In the UK
The RNIB has large print books to sell and to borrow—>http://www.rnib.org.uk/information-everyday-living-reading/large-and-giant-print
Around the World

Amazon has separate retail websites for the United States, the United Kingdom and Ireland, France, Canada, Germany, Italy, Spain, Netherlands, Australia, Brazil, Japan, China, India, and Mexico.   Find the book department & you should see an option for large print.  If you have a specific title, enter it in the search and add ‘large print’.

Sue’s New Page 3/28/2018

During the last week, we’ve had quite a diverse selection of headlines related to the UK stem cell research that showed vision improvement in 2 people. One of them caught my eye so I sent it to Sue: “Breakthrough treatment may cure 50% of all cases of blindness!”  We did some digging and confirmed what we knew and that is that AMD is a small % of all cases of blindness.   We found that there are 12 million children in the world with refractive errors. Sue writes “In other words, we could CURE 12 million cases of childhood visual impairment with glasses!”

Children Cannot See!

So you do not have a computer or tablet or smartphone but you want to continue to read?  Want to listen to audiobooks?

The US National Library Service (NLS) has a FREE service called Talking Books where if you qualify they will send you an audiobook player and audiobooks (also includes audio magazines). They have hundreds of thousands of titles that you can see here–>https://www.loc.gov/nls/braille-audio-reading-materials/online-catalog-search/

You can also find the library near you that has a special-format library service that can help you find the equipment and the audiobooks–>https://www.loc.gov/nls/braille-audio-reading-materials/find-a-local-library/

Next time: Where can I get large print materials?

Sue’s New Page 3/26/2018

Many of you were told very little about the disease process of AMD when you were diagnosed.   And it is likely you were not told how to live with the visual impairment you had then or will develop in the future.  Sue writes that it makes her furious!  On the other hand, she writes about how proud she is because every day we are educating people about all aspects of AMD.

Furious and Proud

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

Sue’s Best Pages: Part 1

Sue’s New Page 3/24/2018

If you’ve not heard or read the news from the UK with headlines like “Macular degeneration: ‘I’ve been given my sight back'” (BBC News) and “Scientists on brink of miracle cure for blindness within five years” (Daily Star), I’d be surprised.  While Sue and I are very positive people, we do not want you to put your hope in something that we do not believe will be available in five years, there’s just too much else that needs to be done.  We offer for your consideration…

Another Cautionary Tale

It’s been 2 years since Sue started writing her journal pages and I added content from my research.  With all that content, we know it is hard to know where to start if you’ve not been following from the beginning.  Earlier this year I went through her journal pages and highlight some of her words to help you to find pages that may be helpful to you.

There are 4 Sue’s Musings pages, you can start here:

Sue’s Musings: Then and Now – Part 1 – 1/18/2018

I know that some of you save your favorite journal pages. Do YOU have a page you’d like to recommend?  If you do, add it in the comments section or email you recommendations to me at light2sight5153@gmail.com.  Thanks!

Sue’s New Page 3/22/2018

In Sue’s previous page, she mentioned drusen but didn’t go into detail.  What is it?  You can find out why Sue calls it…

Eye Poop

You can read Sue’s previous page What’s the Difference which is about the difference between wet and dry AMD.

It’s been 2 years since Sue started writing her journal pages and I added content from my research.  With all that content, we know it is hard to know where to start if you’ve not been following from the beginning.  Earlier this year I went through her journal pages and highlight some of her words to help you to find pages that may be helpful to you.

There are 4 Sue’s Musings pages, you can start here:

Sue’s Musings: Then and Now – Part 1 – 1/18/2018

I know that some of you save your favorite journal pages. Do YOU have a page you’d like to recommend?  If you do, add it in the comments section or email you recommendations to me at light2sight5153@gmail.com.  Thanks!

 

 

Furious and Proud

Morning! Odds and ends this morning. First off: I have done a lot of contemplating ‘puppicide’ as of late. Last week they got hold of my good yoga mat. They chewed the rolled end so when I unrolled it it was this ‘lovely’ pattern of indentations regularly down the mat. Both sides, of course. Alternating. Replacement: $80.

Yesterday they got into my purse and got out the charger for my handheld magnifying reader. I found a company that will replace it for $60 plus tax, shipping and handling of course. I am going to try to see if I can get the same type from an electronic store or Eschenbach. Hopefully for less? Wishful thinker here.

Take away message for you? Replacement parts are expensive. Lose or destroy your charger and you are in for a replacement fee of the better part of a C note. Be careful!

I serve as a dire warning on the first point of this page. Hopefully I can be seen as a shining example (Paraphrasing Catherine Aird) on this next one.

I took my CCTV to a seminar on Friday. I set up in front and to the side. The better to see and still not block your view, my dear.

Was I a little extra work for maintenance? Yep. They needed to get me an extension cord and tape it down. But on the plus side, I was an example of a visually impaired person FUNCTIONING and in the world. I demonstrated my ‘toys’ to my neighbor at the table (and I suspect also to the people behind me. I am a shameless eavesdropper and I suspect most other people are, too).

I also gave my mymacularjournal.com card to a man who has a friend with dry AMD. Once again, the way this man talked, his friend had been told nothing, as in not a bloomin’ thing, about how to live with visual impairment. Arrrrrgggggghhhhhh!!!!!!!

Encounters like that make me both furious and proud. Furious because we – as the AMD population – are being ignored by the system. Proud because we are reaching out and educating people every day.

Here is the pep talk: get out there. Talk about our condition. Talk about your ‘toys’. Make it known there are VIPs in your community and these people are functional members of society. You may not be speaking to other VIPs but someone may know someone who knows someone and you might change a life. I hope I was the catalyst to change this man’s friend’s life last Friday.  [VIP=Visually Impaired Person]

And while we are on the topic of changing lives, a big thank you goes out to Lois Pope. Apparently Lois is a nice lady with a LOT of money. She donated the biggest cash gift ever given to Bascom Palmer hospital in Miami.

What? Got you curious, huh? Alright. That figure was $12 million.

Lois made the gift in honor of her late mother who had AMD. All of the money is to be used to build a new research center that will specialize in macular degeneration and other retinal diseases.

Once again it appears our time has come. People like Lois, the researchers at Bascom Palmer and researchers all over the world are working to fix our problem and make the lives of AMD folks better. Get out there and do the same. Each of us can be an agent for good.

Written March 18th, 2018

Next: Children Cannot See!

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Sue’s New Page 3/20/2018

One of the questions we often get is about wet AMD vs dry AMD. Sue answers the question…

What’s the Difference?

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

Sue’s Best Pages: Part 1

Sue’s Journal Pages January – February 2018

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Sue’s New Page 3/16/2018

Sue shares some money-saving tips as well as her advice to get power strips for your electric plugs.  She also writes about why the risk of developing AMD has been decreasing by 60% every generation.  She says “The folks who wrote the JAMA (Journal of the American Medical Association) article suggested we just may be healthier. Rates of cardiovascular disease and dementia are also down.” So that means…

Things Are Getting Better

It’s been 2 years since Sue started writing her journal pages and I added content from my research.  With all that content, we know it is hard to know where to start if you’ve not been following from the beginning.  Earlier this year I went through her journal pages and highlight some of her words to help you to find pages that may be helpful to you.

There are 4 Sue’s Musings pages, you can start here:

Sue’s Musings: Then and Now – Part 1 – 1/18/2018

I know that some of you save your favorite journal pages. Do YOU have a page you’d like to recommend?  If you do, add it in the comments section or email you recommendations to me at light2sight5153@gmail.com.  Thanks!

 

Sue’s New Page 3/13/2018

A few days ago, I published Sue’s page about what looked like the very positive results of phase 2 clinical trials of APL-2 to stop the growth of geographic atrophy lesions.  Phase 3 trials are to start sometime in 2018.  In that page, I mentioned we’d seen some contradictory information.  We have both studied what we found and Sue has written about what is…

Another $64,000 Question

It’s been 2 years since Sue started writing her journal pages and I added content from my research.  With all that content, we know it is hard to know where to start if you’ve not been following from the beginning.  Earlier this year I went through her journal pages and highlight some of her words to help you to find pages that may be helpful to you.

There are 4 Sue’s Musings pages, you can start here:

Sue’s Musings: Then and Now – Part 1 – 1/18/2018

I know that some of you save your favorite journal pages. Do YOU have a page you’d like to recommend?  If you do, add it in the comments section or email you recommendations to me at light2sight5153@gmail.com.  Thanks!

 

Sue’s New Page 3/11/2018

One of the first questions people ask when they get a diagnosis of AMD (after the shock wears off) is “What can I do to cure it?”  And one of the sources of information is other people with the same disease.  Sue has written about some of the things to be wary of when someone tells you…

“Take This & You’ll Be Cured!”

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

Sue’s Best Pages: Part 1

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