Category: Inspiration

Happy New Year 2022!

In real time it is Christmas Eve, 2021. Next week at this time we will be ushering in a new year. 2022 will be here and 2021 will be done. Thank God.

I dare say 2021 has stunk! I have lost parts of my life I value. COVID has tried its best to demoralize me and defeat me. Come the end of March, I will have been working from home for two years. We closed the physical office the third week of March 2020. I miss my colleagues. I miss the change of scenery.

My transportation – less than desirable to begin with – has become even more unsatisfactory. We are now “allowed” to grocery shop two days a week. With no spare drivers, they turn into pumpkins at 4:00 pm. They also no longer work Saturdays. I no longer have the option of going to the gym, and the work-outs I do get are on Zoom. While I am glad to at least have those, they do leave a bit to be desired. It seems the only “legitimate” place I can go on transportation is the doctor’s office. Great fun.

While I snuck in a couple of adventures in the fall, more than local travel has been adversely effected as well. I had hoped to see more of the world before I went too terribly blind. How am I going to see the world when the pandemic has me sitting at home?

Although I could go on, I will spare you my pathetic whining. Suffice it to say, 2021 has been pretty stinky and the longer I live in these conditions, the more frustrated I get. The pandemic and pandemic restrictions, while necessary, have dimmed my normally sunny outlook. I am pretty sure many feel the same.

COVID has been limiting our lives and truncating our horizons. Or at least so it seems. And Covid is not the only debacle/ disaster of 2021. But perhaps not all is doom and gloom. Perhaps there are some areas in which we are actually being provided with even wider horizons.

Behind the scenes, in vision research, they are working hard to provide us with more options that will improve our lives as visually-impaired people. Even casual scanning of research titles show us they are continuing to make progress in such areas as gene therapy and stem cells. Recently, they approved a port delivery system (now called Susvimo) meant to significantly decrease the treatment burden for those with wet AMD who required monthly injections.

This past spring, I completed my term in the third phase of the APL-2 trials. I then moved into a long-term study of the same medication. How will this medication work for people who are on it for years? I am part of the group that will allow them to find out.

Oh, and if and when APL-2 is approved by the FDA? It will be the first treatment for dry AMD in the world. Cool.

I guess what I am saying with all of this is 2021 was a pretty horrific year. For many of us, our vision loss actually became one of the least of our worries!

Yet, with all of this nonsense happening, it appears medical research on age-related macular degeneration has barely missed a beat. Progress was made.

The more I reflect, the more I am reminded of Pandora…and no, I am not talking about music or jewelry. I am talking about that pesky, little girl who, in modern versions of the tale, could not stand to not know what was in the box. When her elders were not paying attention, Pandora opened the box and all proverbial hell broke loose. Fire, flood, pestilence, plague, war, crazy storms and famine were all released.

Pandora looked around at what she had done and was devastated. She desperately looked in the box. Maybe she could fix this? In the box, Pandora found there was still one thing left, hope.

The moral of the story for me is this: I don’t expect 2022 to magically solve all our problems. I still believe we are in for a bumpy ride. Things are out of the box. However, like Pandora, I have hope.

One of my reasons for hope is vision research. Vision research is going at a breakneck pace.

I still hope – believe – a cure for AMD will be found in my lifetime. After all, I say this is the best time in history to be going blind for a reason!

So, welcome to 2022! Fasten your seatbelt and hold on tight! …and when I find Pandora, that little lady is going into time-out!😜

Feeling Grateful!

Good morning! I am feeling grateful this week. I guess that means this is a gratitude page. Gratitude is a good way to help weather the storms of life. We teach it in therapy. It is also a bedrock piece of every religion I know anything about. Gratitude is good stuff.

First of all, a shout out to Cracker Barrel restaurants. We ate at one of their locations yesterday. .When we came up to the hostess stand, my husband noted a sign saying large print and Braille menus were available.

Now, this is not a perfect world. The sign was about six inches by four inches. It was on the front of the podium. In a perfect world, the sign would have been multicolored neon and include audio. In other words, there was no way on God’s little, green acre anyone with visual impairment would see the sign to know the menus were available. But they are trying!

I mention Cracker Barrel by name for two reasons. The first reason is this: I was never going to see that sign. You probably would not, either! However, now you know to ask for the large print menu.

The second reason is this: efforts to accommodate impairments should be acknowledged. That means, if you know of a business that goes the extra mile for the visually impaired, let us know! It will help your fellow VIPs as well as send a message to the business that they “done good”.

And now for the potentially controversial part of the program. Hear me out before you hang me. Ok?

Of everything that could have gone wrong in my life, I am grateful it was age-related macular degeneration. What do you think about that?

Why would I say a “crazy” thing like that? For the first reason, it struck me in my “old age” (not that I am OLD, of course). I have a friend who has a teen with a chronic, fatiguing condition. When I was this teen’s age I had school, activities, friends. No time for those things when all you seem to do is sleep. Would I have wanted that condition? Nope.

Another reason a late in life condition was good? I was already established. I had my education and over 35, career years under my belt. My financial and personal lives were in good shape.  Basically, if you can be prepared to lose your central vision, I was prepared.

I also have a former coworker diagnosed with bone cancer. Yikes. Do I need to actually state the positives of having dry AMD instead of bone cancer? Lethality, pain, constantly going for treatments, financial drain, just to name a few. Dry AMD is not lethal and there is no pain. Since there presently are no treatments, my life does not revolve around doctor’s visits. There is some financial cost, but since most of my “toys” are durable goods, those purchases were one time events and mostly paid by state vision services. If I had the choice between dry AMD and bone cancer, AMD is a shoo in.

And one last thing: my AMD started out atypically. It hit me like a Mack truck, but most of the time, dry AMD is slow, slow, slow. After the initial shock, it has been giving me time to adapt.  I am learning how to deal with central vision loss at a doable pace.

And one more last thing, the more time it takes, the closer we are to treatments and maybe even cures. This is the best time in history to be experiencing a sight loss.

Still ready to hang me?

Written February 19th, 2019

Next: I DON’T MISS DRIVING

Why Read My Pages? My Answer

Hi! I have an assignment! I knew if I made a nuisance of myself, I would get one! Lin asked me to sell myself. Why would anyone want to read my pages?

The short answer to why anyone would want to read my pages is this: I am one of you, and I am doing well. Not 100%, but well. If someone has suggestions on how to make the journey easier, is it not wise to at least listen to what she has to say?

For the past three years, with the help of Lin and a few others, I have been slashing my way through the jungle of vision loss. Where did I start? A slightly less crass and heartless version of “You have dry age related Macular Degeneration. You will lose your sight. There is no treatment. There is no cure. Co-pay, please.” Yikes! I believe many of you started there as well.

While it sounded hopeless, it was not. We went to work. Our metaphoric machetes flashed. We found there are agencies to help, technologies to make life easier and new treatments coming out at an ever increasing rate. These things are all in my pages. [Lin/Linda: Just look for the option above “Sue’s Journal Pages” and you’ll find them!]

I was able to draw from my background in psychology and as a long-time yoga student. Since I actually teach the fine arts of emotional balance and endurance in the face of hardship, it seemed only logical to practice them. And if I am practicing them and they are working, should I not share them? Those are all in my pages, too. [You can read about the fine arts she refers to starting on her page Teacher, Teach Thyself.]

Is it all super, high quality stuff? Lord, no! I chat. I ramble. Did I mention I get bored? But Lin has made a compilation of the stuff that was actually helpful. You can start there. [You can start with the pages Sue’s Best Pages and Musings.]

She has also made indices for all of my pages. It is easy to search by topic. There are almost always multiple pages on a topic. If your question is not answered then, please ask. [On all of our pages, there’s a search option and ways to find pages by categories and tags.]

While we advertise this as a two-woman show, Lin does all the heavy lifting. I am pretty much the crash test dummy. I bumble through all of the pitfalls of vision loss (I break my CCTV. My pups eat my glasses, etc.) Then I write about how I got out of the mess. Otherwise, Lin runs the show. [Wish we had an artist: I see a cartoon of Sue as a crash test dummy!]

And what a show it is! There are now approximately 2300 people in the Facebook group. Lin does all of the moderating and most of the research. I don’t know how much work that is and, honey, I don’t want to know! But if you can find a quick answer to your question in my pages, could you do it, please? (I probably just got yelled at for writing that, but could you do it anyway?) [::grin:: I’ve said it before, I’ll say it again: I rarely yell. OK, I do sometimes but not for this!]

That is pretty much why you should read my pages…oh, and I thrive on attention! 😉

Bye!

Written January 6th, 2019

Go back to Sue on Assignment – Special Topics

Sue’s Best Pages – Part 3

continued from part 2

Part 3: The highest-rated pages

I hope you’ve seen the box at the bottom of all our pages where you can rate Sue’s pages.  It’s been helping us to see what resonates with you. It also helps us find pages that we can recommend to others.

If you haven’t been rating the pages, we really wish you would! ::smile::

  • One Foot in Front of the Other
    • Sue writes, “Accept this is happening, Recognize you are not powerless, we all have choices we can make. Understand if we take care of each moment as it comes, the future will take care of itself. Don’t get ahead of yourself. We don’t need to be hopeful or optimistic all of the time (even though there is reason for hope). If you cannot muster any faith in your future, just put one foot in front of the other and move. You will be surprised where you end up.”
  • Hindsight is 20/20
    • She writes, “First, you are not going everything black and dark blind. You may not be doomed to progress to end-stage AMD. You did not cause this. There may come a time you are seeing things. There is an amazing amount of hope for treatment and eventually a cure for AMD.”
  • Sight Loss as a Challenge
    • She writes, “Accepting you are losing your sight will free you from hopelessness. It will free the energy you are using on worrying and fretting and allow you to use that energy to find ways to enrich your lives.”
  • Not As Cut and Dried
    • Sue writes, “The takeaway message I got from the driving presentation was this: just as each of us is multifaceted, the decision whether or not to drive should also be multifaceted. How is your contrast sensitivity? How much glare can you handle? How fast is your eye-foot reaction time? How confusing and busy are the places you want to drive? All these and more have to be considered.”
  • Overcoming Uncertainty
    • Sue writes, “Remember this journey is not a sprint, it is a marathon. In fact, it is a marathon that we don’t even know the course. Keep an open mind and don’t latch onto anything out of fear. Eventually, we will find the way.”
  • Special Favors
    • Sue writes, “‘Tis a dilemma, so I am throwing it out for discussion. What is too big of a favor? When should you not ask? When should you refuse an offer? What are the rules on this????????”
  • Good Thought, Bad Thought
    • Sue writes, “Good thought and bad thought. Or actually bad thought and good thought. Bad thought that I may have reached this level so quickly. Good thought: could the slide be over? Will I soon stop losing vision?”

Next: Using the Tools from DBT (Dialectical Behavioral Therapy)

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Do I Rage or Go Gently?

Good morning! Friday morning in State College. Summer Academy Career Day was yesterday and this morning I bus home.

The ride down was delayed. We were in a traffic jam right outside of town for an hour.

The driver was nice. I really did not know what to do about when to load, etc., so I stood right next to him for a few minutes. I felt compelled to explain I am visually impaired and not at all used to buses. I knew not one thing about this stuff. It launched me into a mini, mental pity party for myself.

You know the routine. I was competent and independent and now…not as much. What the hey am I doing riding a bus?!!?

I met a totally blind woman at Summer Academy. When I said I got here by bus, she told me a story of how she cried the only time she ever rode a bus. She was afraid and the people were “nasty.”

We all have our stories. In the end, you pay your money and you take your choice. Participate with all the little indignities or stay home…. Hey, I’m here; aren’t I?

Kids were great as was the staff. Some were wonderfully intelligent and insightful. Somehow I got into a conversation about whether a boy blind from birth would ever choose to see and if I – visually impaired for a couple of years – would want what I have lost restored. My answer was a resounding “yes!” His answer was negative. He sees meaning in his blindness. Deeply religious, he believes he is showing people how one can thrive in adversity by having a relationship with Christ.

Another young man is a running back with a football team. I asked how he, with only light perception, could discern the holes in the other team’s defensive line. He said his teammates yell at him or he just runs into the other line and bounces off. That works too; I guess.

In short, where there is a will, there is a way. The adaptability of the human spirit is amazing.

The kids also did amazing things while they were here, too. They had totally blind kids – no light perception, no nothing – on a climbing wall. They had them on the high ropes and in kayaks. It appears to me they faced fears daily. I cannot imagine being that courageous.

I keep trying to get them to sponsor a camp for us visually impaired “big kids.” As of now, I have not been able to generate a great deal of interest. I would love to be able to go someplace and have all sorts of “adventures” lined up for me.

Last winter I managed to get skiing one time. This summer I have decided to try and add back whitewater rafting. The local college has an outdoor education program and I have signed up for their rafting trip.

I am going to be the only one over about 23 on the trip. I feel weird about it. Preconceived notions and prejudices against age and handicaps are everywhere. Including my own head.

My choices are, once again, simple. To borrow from Dylan Thomas, do I go gently into that good night or do I rage?

What is your choice?

Written August 2nd, 2018

Next: Same Stuff Different Day

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When the Going Gets Tough…

It seems we live for the challenge. As if my visual problems and my husband’s health problems are not enough, we just seem to ATTRACT things.

Man vs Wild, with Wild being the Maggie Monster, continues. She clears a 4’ fence (in a leap with a little boost at the end, hind feet in the chain link), so we put up a six-foot fence. She goes under a fence; we anchor it. She has now started crawling under the deck to get out. The girl is a wonder. It would not be so bad, but she gets herself into the pool, comes out and uses the furniture as her towel!

In addition to the Maggie Monster games, I have been dealing with the business office at school – can you spell SNAFU? – and trying to get fingerprinted (or not) for the mini, mini continuing education class I am teaching in the fall. Everything turns into an event!

So, life is just one, big challenge. When we don’t have any, we seem to attract them. Probably the way we live our lives. We wanted the puppygirls. I want to teach my mini, mini course on AMD.

There are essentially two ways to look at challenges. Either you consider it all an incredible pain in the tush or…game on!

The Huffington Post wrote about ten reasons to love the obstacles that show up in life. Quoting Ryan Holliday, the Huffington article suggests we succeed not in spite of obstacles but because of them.

Obstacles show us who we are, for example. Have you made a decision on how you will handle the obstacle of vision loss? What do you think about that? Can you, as who you are, live with that decision? Maybe it is not “you” at all.

Obstacles show us what we need to do next. What do we need to work on? We continue working on keeping the puppygirls enclosed and safe. Maybe you need to work on finding transportation or finding a low vision specialist to teach you skills. What do you need to do to get over the hurdle?

Holliday says obstacles make us tough. When the going gets tough, the tough get going.

I found this one intriguing. Number 8 on the list is “obstacles allow us to change our lives for the better” and the first line in it says“sometimes they are an excuse for changing our lives”.

Hate your old job? Maybe this is an opportunity to get training for a new one. Very often Blindness and Visual Services can help you switch careers. What do you REALLY want to be when you grow up? If it is reasonable for a VIP, there is a chance you can do it still.

And then there is the ever famous “I want to see the world before I go blind!”. Sounds like a great excuse for jetting off to me!

Those are just a few of the 10 reasons they listed. Check out the article for the rest. Hope this little “reframe” of obstacles into challenges was helpful!

PS The puppygirls have now pushed out the sliding side of the air conditioner and gone out the window! Maggie went next door and forced her way under the fence of the neighbor’s dog yard. This is the first time I have ever had a dog that broke IN somewhere!

Game on!??

Written July 1st, 2018

Next: In the Pipeline for Wet AMD

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My New Luggage

Hi. Waiting for transportation. What else is new?

I sent Lin a photo of my ‘luggage’ today. This is a joke. I am taking two rolling crates to work. The loaner CCTV has two parts. It has a base and it has a monitor. It is HUGE.

Yes, I am glad I have it. Practicing gratitude and mentally comparing what could be my next month without a CCTV to what it will be with the loaner machine. This is better.

DBT says clients are doing the best they can, but they can do better. Right now I am doing the best I can. Making due with this behemoth of a CCTV. However, it is possible I could do better. I am on the trail of another option. Someone said there are loaners through the library.  If I can get one of those for home and have this one for the office, I will have it made in the shade!

Stay tuned for the next update…and try your local library for equipment loans. They might be able to help.

Later in the evening:

I just sent Lin a picture of the fantastic loaner I got from the library! It is a Freedom Scientific machine and it is very nice. It is a Topaz. When I looked it up on the website I discovered it is  $3400 machine.

And I got it on my library card.

OK. So I also made a donation out of gratitude. Nowhere near the cost of the machine.

When I went in and asked, they had to dig it out from behind some shelving. There were two of them and I took the one closest to me. The better to get it out, my dear.

The library people said they had never used them. Did not know how to use them. They were just taking up space. The solution to my problem gathering dust in a corner.

And how did I get it? I asked.

Having this second CCTV means I can have one at home and one at the office. I will be able to do minimal lugging. I won’t be totally stressed wondering when my CCTV is coming back.

I am thrilled. And all I did was ask.

What else is happening? Well, Lin shared a podcast with me. The name of it is Life After Sight Loss. The narrator – perky little devil! – is a guy named Derek Daniel.

Now I really did not have time to listen to much. I was getting ready for work. There are many podcasts on a variety of low vision/no vision subjects that are included on the site. The site seems to be one you might want to check out.

According to his bio Daniel has been totally blind for some time.  He has Leber Hereditary Optic Neuropathy. (Gene therapy for LHON, by the way, is looking very promising). Daniel appears to have radically accepted his blindness and to have taken part in many different trainings as well as using many technological supports. In other words, he has paid his dues and probably knows what he is talking about.

You might want to check out lifeaftersightloss.com and see what you think. And if you have a CCTV on the blink, check out the public library. It is amazing what you might check out on a library card!

Written June 13th, 2018

Next: Glad They’re On Our Side

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The Power of Expectations

I like people. I really do, but every once in a while they drive me insane. (Then I drive other people insane complaining, but that is a different page!)

The most recent thing is this retirement nonsense. When people hear I have decided to leave my school job, they conjure up their own retirement fantasies. Then they project them on me!

Now I know projections are more about the project-er than the project-ee  but their expectations of what I would do in retirement gripe my cute, little ol’ lady tushie. Do they really know that little about me?!?!

Then I started thinking about expectations. Everyone has expectations of everyone else. Some of these people ask if I am going to do ‘fun’ hobbies, like gardening. (The last time I played in the dirt was the Dirty Girls charity mud run about 8 years ago!) Others expect me to sit in my favorite chair and watch daytime TV. None of the stuff they expect I will do is ‘me’.

The problem with expectations is this: they have an effect on the person at whom they are aimed!  It has been proven scientifically a couple of dozen times. Many years ago Robert Rosenthal randomly picked elementary school children and told their teachers they were the children a test had predicted would flourish that school year. One guess who just blossomed that year.  That was the power of expectations from others.

Then there is the power of our own expectations. Ever hear of the placebo effect? Yep, that is the power of our own expectations at work.

Now so far I have mentioned positive effects of expectations. Expectations also work the other way. In the winter 2018 Education Next they concluded racial bias negatively effects student outcomes.

Now what about expectations of the visually impaired? I suspect every one of you has dealt with the expectations of others. Some people – probably few and far between the truth be known – expect you to function as well as always. Others put severe limits on you. How could she possibly do anything? She is visually impaired!

Last year Kristen Smedley wrote for The Mighty about having to revise her expectations for her two, blind sons. She went from having dismal expectations to realizing the only way her sons were going to achieve anything at all was for her to believe in them and expect the best they could give. It payed off.

So, what is my purpose here? Well, other than to rant about how people expect some pretty strange things from me in the years after my retirement from school, I imagine my purpose is to warn you about the power of expectations. Don’t sell yourself short. Don’t let other people sell you short.  Low expectations lead to low achievement of goals. And in our class, low achievement of goals means a lack of independence.

Believe in yourself. Get others to believe in you. Harness the power of expectations.

Next: coming soon!

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Believe in Fairies

One more time I am waiting for a ride to work. Yippee. Not! In case you have not figured it out, this is the part I hate most about losing my central vision.

A notice came in the snail mail. The Library for the Blind and Physically Handicapped in Philly is moving. They are going to 1500 Spring Garden Street. If you use their services, be aware.

I always love it when I get print notices from agencies for the blind. What if you are totally blind?

Do you have to put every piece of junk mail under a reader just so you don’t throw out anything important?  That could become a full-time job!

What else? Well, on a positive note,  I am going skiing tomorrow evening! Once again persistence and a positive attitude pay off.  I contacted a local, outdoor activity group and my sob story finally worked! I had been told to lie by omission, but I don’t. I told her I am a healthy, active 64 year old with a visual impairment. I cannot drive and I need a ride. You will not have to babysit me.

Of course I know nothing about my Good Samaritan except what he told me. Calculated risk. He had my number and he gave me the name of the girl at the outdoor activity group. I assume she is not pimping for some perverted sort. She sounded very sweet.

Just the same, Lin has the name and number of the guy. If I disappear, it was nice “chatting” with you all these months. Lin will give the info to the authorities .

If this works out, maybe I will see if anyone in their group is going rafting this spring!  Times like this I feel as if I am truly getting my life back. It is exciting to be getting back to being me!

Just takes a boatload of dogged persistence and a positive attitude. I don’t want to go all New Age or spiritual on you, but I feel the ‘vibes’ you send out really do decide what you get back. I looked up ‘expect good things’ and I got everything from Bible verses to talk about vortexes  and power places. Whoa. I mean, I loved Sedona – great, red rocks – but I am not sure I am really into sitting at a vortex to channel the energy. Just saying.

I have no idea who Brian Tracy is – he could very well be sitting on a vortex in Sedona for all I know – but he has a nice quote on a poster.  The quote is this: “You are a living magnet. What you attract into your life is in harmony with your dominant thoughts.”

I really like that quote. You could probably find its philosophical siblings in the religious literature of whatever faith, but Tracy says it in plain English. Positive attracts positive. And the other way around.

Last thing before bed… in answer to my Mardi Gras greeting to my contact at Wills (and a laissez le bon temps rouler to you all as well!) I got told the preparation for the stem cell research is moving along but still not ready to launch.  Basically positive news. I will take it.

So, to quote J.M. Barrie “ I do believe in fairies! I do! I do!”

Believe in fairies. Think positive thoughts. Create your own, little miracles. It is within your power. Vortexes or no!

Written February 14th, 2018 Continue reading “Believe in Fairies”

My Two Cents

Lin/Linda here.

My 2 cents which means ‘my opinion’.

This is my 4th year doing research about macular degeneration (mostly AMD), working with Sue on the website & interacting with members here. It is really frustrating not to be able to say, “take 2 pills and everything will be fine.” After all, we have pills that virtually cure other diseases, right? Or there are lifestyle changes you can make and you won’t need the pills. For example, if you have high blood pressure, you can lose weight, exercise and eat a certain diet, and you won’t need the pills. We can sometimes have blood drawn and are told we don’t have enough of …. so we take more of …. (fill in the blanks; I’m thinking of Vitamin D levels for one).

Unfortunately, we are not yet there with AMD and similar types of macular degeneration and other retinal diseases.

I’m writing this because I’ve had people tell me to be honest but optimistic. It’s hard for me to balance those two sometimes! I’ll first be honest, and then I’ll be optimistic. I hope you know that I care for and respect you. Why else would I be here?

What do we hear?

We are told by others with the disease, by doctors or in articles on the Internet about nutrients that are treatments (AREDS2? Saffron? Turmeric?) or that eating leafy greens (how much, how often?) is a treatment. Some sources even tell us of cures! We search for people like us and ask, “did this help you?” People say, “I ate … and took … but my AMD got worse.” Or “I ate … and took … and my AMD got better.”

How do we know what to believe?

There are things that we know about AMD: it is a disease with many potential causes (we don’t yet know what they are for any individual) and many risk factors and that everyone has a different combination of them (I have a recent post listing all the ones we know about so you can see what yours are). Our genetics – which includes heredity but also other genetic factors – may have the most influence on some people but not all. We can’t control that. Another big risk factor is age which is another thing we can’t control, darn it. ::smile::

What can we control?

Don’t smoke; keep your weight, blood pressure and cholesterol normal; get moderate exercise; eat eye healthy foods especially if your diet has been poor. Some people with AMD can be helped by taking the AREDS/AREDS2 supplements but some cannot. Some can even be harmed by them we now know.

Remember that they are called ‘supplements’ because they are to SUPPLEMENT our diet, not to replace eating well.

Unfortunately, we cannot yet look at a person’s genes alone or blood or diet or use of supplements and say “yep, that’s it!! That’s what caused it for you. Now do this.”

A lifestyle

I hope that you see that dealing with your AMD is very much a self-help process with input from your own research, your doctors, Sue’s pages and this group. What I’m talking about is that you need to develop an overall plan – a lifestyle – for YOU which includes:
– managing your blood pressure, weight, and cholesterol.
– getting moderate exercise.
– eating an eye-healthy diet.
– working on keeping the stress as low as possible, and if you can’t eliminate it, you can learn to deal with it in positive ways.
– taking supplements IF they’ve been proven safe & effective.
– keeping an open mind about using the MANY low vision aids that are available when and if you need them. There are so many more of than in any time in history and more are being developed every day.
– accepting that you may have to learn different ways of doing the things you used to do. We have examples of people who did this and have created ‘new normal’ good lives (Sue is one).

Supplements

We do not discourage talking about supplements and procedures. We are doing it, too. You may think that we are trying to keep you from taking or doing something that will make a difference when we share the results of our research that often says that something hasn’t yet been proven to be safe and effective. Why would we hide helpful information? Sue & I have been volunteering our time for years. I am here every day of the week doing what I can. My life would be easier if I could say “Take this and do this.” ::smile::

If we can’t tell you what to do, we can at least help by using our experience with proper scientific research to keep you from doing something that could harm you.

I’m constantly looking at the news in the field with the expectation that one day I’ll be able to share with you the good news that there is something that really CAN help control and reverse the damage that’s been done. There’s research that is making great strides in both of those aspects of the disease.

Are there reasons to be optimistic?

You bet there is! If you are even just reading the headlines of the posts in our group, you will see reasons to be optimistic. I’m not talking just about ongoing research. I’m talking about posts and pages from people in the group and elsewhere who have the disease and who live good ‘new normal’ lives – even thrive – with vision loss.

What can I do NOW?

1. Keep a positive attitude and know that you are doing the best you can with what you and the experts know currently. We are learning more as time goes on and there is to learn ahead!

2. Work on creating a healthy lifestyle. If you are new to your diagnosis, putting your lifestyle plan together is a critical process that takes time, education, help and support. You may not be ready to start down this path yet. When you are, we are here to help you every step along the way.

3. Think about ways you can adapt your life, your home, your workplace using the many low vision aids available both electronic and non-electronic.

OK, I’m done…for now! ::grin:: Thanks for listening.

Written 2/2/2018. Revised 1/7/2019.

Next: Making Elmo Proud

Home

Research: Dry & Wet AMD

Hello! I am going to get to the article Lin found on BrightFocus Foundation’s website about ‘lamp stuff’ aka lampalizumab but first I wanted to quickly mention a Google Talk by Isaac Lidsky. The title is Eyes Wide Open.

Lidsky began losing his sight to retinitis pigmentosa when he was 13 years of age. Although he has been totally blind for many years, Isaac Lidsky is extremely accomplished and has developed a philosophy that includes all sorts of concepts such as being present in the moment, doing what works and not abdicating responsibility for your life to your personal heroes and villains. His half an hour Google Talk may make some people rethink their attitudes towards their sight losses.

While I don’t expect many people to feel ‘lucky’ they are going blind – and Lidsky does consider his blindness to have been a blessing – Lidsky’s perspective on things can be thought provoking.

OK, onward to ‘lamp stuff’. We have quoted Joshua Dunaief before. One of the most helpful things he does for me in the current article is give us a pronunciation guide for lampalizumab. It is lamp-uh-liz-you-mab. Sort of like “Lamp!…uh, Liz, you mad/b?” You know, what you say when you knock over Elizabeth’s favorite light.

We have gone over the study results already in these pages. Complement factor I variant folks got kickin’ results. The rest of us, not so much. A reason for genetic testing for us before we submit to needles in the eyes, literally!

Dunaief says results are expected in 2018. Yep, December is their target date for publication. He does not mention phase 3 is over this December as is indicated in clinicaltrials.gov.

So, basically, still not really sure what is happening with ‘lamp stuff’ and me. May be offered it in December. May not be. May accept the offer. May not. I would love to know my genotype as compared to the SNPs they found in the experimental sample. Being a responder would be incredible. Being a nonresponder would be very bad. Dilemma.

And information for our ‘wet’ friends for my last 200 words. In JAMA Ophthalmology Jackson, Boyer and Brown reported the results of an experiment with an ORALLY administered vascular endothelial growth factor (VEGF) inhibitor. In other words, they have been experimenting with a pill they hope would do the same thing as your anti-VEGF shots.

The stuff is a tyrosine kinase inhibitor. It caused a lot of upset tummies and diarrhea (5 and 6 subjects out of 35 respectively) but the side effects were not bad enough to stop the experiment. Some people did stop because of liver problems. Those with liver issues would probably not be candidates for the treatment.

Only 40% of the total required rescue shots. Even those people received fewer injections than they had without the pills.

Before you all rush out for your X-82 pills, bear in mind this was a phase 1 experiment. That is safety and tolerability, guys. They are moving on to proof of concept, phase 2, with a bigger n. (n being the number of subjects in the study, remember). Check clinicaltrials.gov if you are interested.

Remember we all do our part in this fight. If you have a strong liver and a strong stomach, X-82 might be your kind of research. You might get to be a lab rat before I do!

written September 2nd, 2017

Continue reading “Research: Dry & Wet AMD”

Let The Good Times Roll!

Laissez les bon temps roulez! Today in real-time was Mardi Gras and everyone in America was an honorary Cajun. [Lin/Linda here: for those of us who don’t speak French, the first sentence is a Cajun French phrase that is literally translated from the English expression “Let the good times roll.”]

Elementary school had its traditional luncheon, paid for by the money made by the soda machines. There was no real, Cajun food served but we still enjoyed it.

Good cake. In the past we had a King Cake, complete with a little, plastic baby Jesus baked inside. Whoever came up with the idea of BAKING the Christ Child? Is it a sin to swallow the baby Jesus doll? Mid Atlantic state Methodist here. I have no clue.

Just the same, no plastic Jesus this year because he would have doubled the cost of the cake. Guess we did not need to worry about swallowing it although we remembered the year someone almost did just that!

Be that as it may, we have had the tradition of decorating the teachers’ lounge and wishing we were all in New Orleans for a number of years now. (High school has a couple of pots of jambalaya brought in. I probably should eat over there!) Groups form traditions and traditions are a good thing.

Vision loss and isolation (such filthy language I use!) tend to get us away from traditions. This is not a good thing. Ten Benefits of Family Traditions (and, yes, school is a family) lists the benefits of maintaining them.

Traditions help us maintain a shared identity and feelings of belonging. They generate wonderful memories that we can share and increase that feeling of belonging. “Exactly who was that who almost choked on baby Jesus?….That’s right!”

Traditions organize our world, give us a sense of structure and help us navigate change. They prove comfort and security through the familiar in contrast to that change. In that way they can help us deal with loss and even trauma.

Traditions give us the opportunity to work together to solve problems. They teach us practical skills (like the Heimlich maneuver when somebody chokes on said plastic baby Jesus?…. Ouch! Don’t hit me!) and impart values, beliefs, culture and heritage. All told not a half bad return on our soda machine profits.

So the next question becomes how can you maintain traditions in your lives? Doesn’t have to be big or elaborate. We have lots for the kids. For example, March 2 is Theodore Geisel’s birthday. You know him better as Dr. Seuss. The menu that day? All together now…GREEN EGGS AND HAM. Everyone also reads The Cat in the Hat. Almost mandatory.

After that we are all Irish for the day on March 17th. Wearin’ of the green and “Kiss me. I’m Irish.” even if the other 364 days of the year we are Asian or Black or Heinz 57 Varieties.

And the 11th reason to maintain traditions is they are often just plain fun. Don’t have to be elaborate. Don’t have to be involved. Traditions are what you make. Go make some. Continue reading “Let The Good Times Roll!”

Our Mission

Just got a comment via email. It was enough to make me blush and puff with pride…then wonder how the hell I am going to live up to all that!!! My heavens! Thank you!

Then I started wondering about ‘mission’. Ever been part of a committee writing a mission statement? Don’t be! They are killers. Still, every endeavor should have some goals; right?

Today I was waiting for sixth grade to come in from recess. One of ‘my’ kids, a lovely young lady, stopped to tell me she had seen me in my glasses. She meant the telescopic ones I use to do classroom observations.

I started to think what my being in school was doing for – or maybe to! – our kids. What I came up with is I am helping them to be comfortable with the visually impaired. I am helping them to normalize vision loss.

In sociology normalization process theory relates to the social processes by which new ways of thinking, working and organizing become routinely incorporated in everyday life. In my case it does not mean to make the different into ‘normal’ people (in my case, I believe that may not be possible!?) but instead to allow others to see us as just part of normal life.

I get a kick out of the acceptance and ‘ownership’ the students have of my vision loss. The other week a new student asked if I had virtual reality glasses! Not hardly. I stopped to give him the Cliff Notes version of the talk on my assistive technology. A couple of his classmates joined in and helped me explain the situation! For them, it is pretty routine.

If I had to define our ‘mission’ here, I would have to say part of it needs to be normalization of vision loss. Acceptance. Not complacency with avoidable blindness or an attitude of throwing up your hands in the face of unavoidable blindness. We cannot stop fighting vision loss and say it is inevitable. Instead I would like to see us work towards a more generalized acceptance and understanding that there are millions of us and we can and should be part of the community. The more we get out there, the more we will be part of the social landscape. As we adjust to our vision loss within our society, society can adjust to us.

So that is my thought on one destination for this journey we are on. Normalization of low vision in a community. How can we get low vision out of the closet?

The person who wrote that lovely email talked about being more open with people about her vision loss. She also talked about starting a local support group! I am thrilled! One person can make a difference.

And if one person can make a difference, what can an online community – physically spread out across the globe (I still find that a wild concept to wrap my head around!) – do together/separately?

What is your mission? Continue reading “Our Mission”

The Cowardly Lion

My yogini generally starts class asking everyone to set an intention for the class. Pretty standard stuff in yoga classes.

Saturday she started class by asking what we would want to ’embody’ on and perhaps even off the mat. That got my head going. After wondering if I should channel Wonder Woman or Supergirl, I started thinking about the virtues.

Which virtue would I want to embody? Which one would suit not only my personality but also serve me the best?

To begin with, I wasn’t even sure what is considered a virtue. I went to Virtues for Life and found a list of 78 of them. (I think. I lost count. Twice.) That was a lot more than I thought there would be. Which made me wonder what the definition of virtue might be. After all, a whole lot of things seem to qualify.

According to the online dictionary a virtue is “a behavior showing high moral standards.” It could also be “the seventh highest order of the nine-fold celestial hierarchy”, but I have no idea what that means. We will therefore stick with definition number 1.

Virtues run the alphabet from acceptance to wonder. They also go from determination to flexibility and detachment to enthusiasm. Hmmmm. Maybe it has to do with how well the virtue matches the situation? If it doesn’t match and ‘work’ then the virtue is not a virtue? Yes/no/maybe?

Anyway, leaving the really heavy philosophical lifting behind, which of those 78 virtues do you think you would need to embody to get through the day? Which ones do you lack but you think it would be helpful to have?

I know I am obstinate, stubborn and pig-headed. Dressed up to look pretty, that is determination. I use that a fair amount.

I could probably use more of the flip side of determination. Especially now that I am older and have low vision, I could probably use more flexibility and acceptance. In the words of those wise philosophers, The Rolling Stones, “you can’t always get what you want but if you try sometime, you just might just find, you get what you need.” Being open to other possibilities and trusting the Universe to provide good alternatives is not a bad thing. Sometimes it just takes a little courage.

And speaking of courage….Experiencing vision loss, I believe we all have embodied courage. We just may not recognize it. Being courageous is not an all or nothing thing. Sometimes we express it and sometimes we don’t but it is always there. Think the Cowardly Lion. He needed a medal to recognize it, but his courage was there all the time.

Going back to speaking personally, I have a tendency to be pretty confidence. Go ahead and read arrogant there if you wish. I am self-aware enough to know that. After 63 years, it comes as no surprise.

However, what also comes as no surprise is life teaching the lessons I need to grow just at the time I need them. Humility? You folks are (trying ?) to teach me humility. AMD limiting my abilities just makes me mad. Then I feel ‘noble’ fighting it (See? Arrogant.) Hearing your stories, what you are going through and the kind comments you make? Those are humbling.

So back to the question: which virtues do you think you need to embody to get through? Make yourself a ‘medal’ and pin it to your underwear. You just might find you have had that virtue the whole time!

Continue reading “The Cowardly Lion”

No Mud, No Lotus

 

No mud, no lotus
Yesterday the theme for our yoga practice (and remember it is yoga practice not yoga perfect. There is nothing in life we ever truly perfect. We are all seekers and strivers) was “no mud; no lotus”. Cool. A page topic.

 

 

Traveling in the yoga and therapy circles I am in, I have heard that saying a thousand times. It makes a great poster. Lovely, white lotus flower growing out of a bog. Beautiful. What does it mean?

Literally it means exactly what it says. The lotus, sacred plant of India, is aquatic. It roots in the mud and makes its way to bloom on the surface. Without having its roots in the mud, the plant would perish. (Or perhaps not. Fun facts: Wikipedia reported the oldest living lotus known is over 1,000 years old and Kew Gardens reported the oldest, germinating lotus seeds were 1,288 +/- 250 years old!)

Metaphorically, no mud, no lotus is about rebirth and emerging from darkness and a ‘bad’ place (BuddhaNet). It symbolizes rising above the defilement and suffering in life. It is a way to represent hope and victory over bad circumstances.

Please note the ‘bad’ circumstances are still there. No one drained the swamp. There would be no lotus if the swamp were drained. The ‘bad circumstances’ of the swamp are necessary for the lotus just like the conflict is necessary for the victory. No conflict, no victory. Got it? We need adversity in order to prevail.

And THAT is one of the moral of the story. We don’t grow because of the ease in our lives but because of the challenges.

I looked up no mud, no lotus and found some intriguing references to a book by a Buddhist monk named Thich Nhat Hanh. BARD does not list it or I would have downloaded it. According to other sources Thich – or should I say Hanh? – sees acceptance of suffering as the first step to happiness. It is not possible to fully experience one thing without knowing it’s opposite. Ying and yang. You can only appreciate the light if you have known the darkness. And that is the Zen take on the saying. Pretty profound in its simplicity.

I leave it to you to decide how no mud, no lotus might apply to your life. Has your AMD made you grow in any way? Are you more appreciative of your vision or of things you are still able to do because you have glimpsed a future without good vision? Has anything good come of your having AMD?

And if the answers to every one of those questions is no, I am going to ask why not. Perhaps now is the time to embrace your condition and make it work for you. No mud, no lotus. Continue reading “No Mud, No Lotus”

Tales from the Wet Side: Part 5 Not Afraid

Why I’m not afraid to be blind by Jennifer Poole

Please don’t get me wrong, I am going to do everything in my power to overcome Macular Degeneration. I think losing my vision would be one of the worst things to happen to me. I need my eyes for all the things I like to do, and the things that I’m good at doing. And like so many of us, I simply must continue to see the faces of my loved ones. I must. However, if I ever become visually impaired enough to be legally blind, I am not afraid.

I have several excellent role models to teach me that life doesn’t end with disability. When it comes to blindness, I look to my Grandpa. At 10 years old, young Peter was hanging out with his friends in a field near a construction site for a new factory. They came upon a metal box, shaped like a suitcase with a big lock on the front. Dying of curiosity, first one boy, then another tried without success to open the box. They started taking it in turns to throw it against the concrete to bust it open. When it was Peter’s turn, the dynamite that was stored inside exploded, completely damaging one eye and blinding him in the other eye. He could only see shades of light and dark in his one remaining eye.

My Grandpa used to take my brother and me down to the grocery store to buy food for my Grandma, who was usually cooking. We crossed the street, entered the store and did business there, without ever considering that he couldn’t see.  As a small child, I felt confident that a capable adult was with us, and would keep us safe crossing roads and greeting people as we went by. He would spend time with us in the garden, teaching us how to know that the cucumbers were ripe and ready for picking, and that fresh dill is one of the best smells on the planet. He taught us about baseball, which he listened to on summer nights on the radio. And like a magic trick, he could pull money out of his pocket to give us, never really understanding the tricks he used to differentiate the bills and coins.

My Grandpa had a full life, a wife, a job, a home and three daughters. He struggled more than the average person, I can see that now that I am an adult myself. He knew me by voice and often caressed my face. To us, he was never ‘not able’, and he loved us as much as a grandfather ever could. I pray that I never need to face that hardship, and I pray everyone affected by macular degeneration can reap the benefits of treatments and cures in the future.

But if I do go blind, I will not be afraid. I will live. I will live like he did.

Continue reading “Tales from the Wet Side: Part 5 Not Afraid”

The Season of Hope

Pagan? Oh, yeah. I admit to the primal in my soul. A day or so ago was the winter solstice. Where we are, the sun was going down at 4:30. I admit I have said a few silent prayers for the return of the light. Where there is light there is hope.  Where there is light there is life. I understand the bonfires of our ancestors.

Hanukkah is soon. For those not of the Jewish persuasion, Hanukkah is a celebration of the retaking of the Temple and a miracle. Lamp oil enough for only a short time lasted for eight days. Where there is light, there is hope. Where there is light, there is life.

Christmas is Sunday. Christians believe God gave us his Son to be our salvation. Jesus brought light to the world. Where there is light, there is hope. Where there is light, there is life.

My point? This is the season of hope. The light is returning to our world and there is hope.

Miserable as losing sight is, we are not without hope. While my initial purpose was venting (a whole lot of venting!) and self-care, it appears our purpose has evolved. Lin and I now appear to be in the education and hope business.

We both believe the light will return. We believe those who share with us in these pages and in the Facebook group believe that, too.

In this season of hope, I would like to thank you for your interest. I want to thank you for your support. I want to thank you for your kind words. A little project intended to help me grieve has become – dare I say? – a bit of a force for good. This happened because you joined us.

Of course, none of this could have happened without Lin. I brought the lemons. She brought everything else to turn my lemons into lemonade. Thank you, dear friend. [Lin here: of course, there is no thanks necessary.  At a time when I felt helpless, you gave me a way to help.]

And now? Those of you in the northern hemisphere, watch as the light increase from day-to-day and remember we are getting closer to a cure.

Where there is light, there is hope.

Candle with words Let the light of hope shine into your dark places - Sue & Lin

Written 12/23/2016

Continue reading “The Season of Hope”

Hope

I got chocolate on my pink sweater. If I look straight at it, I can’t see it. Is that a positive aspect of geographic atrophy?

In real-time today is October 10, Columbus day, a holiday. For the past year I have had a new holiday tradition. Every holiday I email the researchers. Occasionally I become a little desperate and pick a weird holiday. ‘National Smile Day’ warranted a greeting this year!  In my own defense, there was a really long stretch between holidays around that time.

I try to keep myself in the running without being a nag. It is often better to work smarter not harder.

My first inclination is to scream and yell. I want this show on the road. Why is this happening to me? Then I remember I have a lot to be grateful for.

What, for example? First of all, I am not in pain. I know someone going through multiple surgeries and cancer treatments. Pain? Yes. Fatigue? Absolutely. I am a nice person but I am not a saint. There is no way I would trade places with her.

If I were in pain and fighting for my life I would be an extremely unhappy camper. Better a case of the blurs than that.

I also know someone who may be starting with dementia. We are talking brain here. I am partial to my brain. I remember the sixties because I have always been protective of my brain.

Who are you if you cannot remember the things that made you what you are? That is terrifying. Maybe I won’t be able to see very well but I will still have the pictures in my head.  Memories and the personal identity they create are worth something. This sinner would not trade places with her either.

My final reason for saying I am lucky? I have hope. When my father had macular degeneration he did not have researchers to nag. There was absolutely nothing being done in medical science that was going to be able to help him. [Lin/Linda here: same with my dad when he had AMD.]

I am a youngster when it comes to AMD. Some of you are even significantly younger than I am. The projection is ten years before they can successfully implant photoreceptors. Are they being optimistic? Maybe. Say 15 years.

Restoration of my vision in 15 years may still give me ten years to see! That hope is better than none.

So there I am. Considering the alternatives? I am lucky. Continue reading “Hope”

Keep Moving Through Hell

“If you are going through Hell keep going.” – Winston Churchill

“If you can’t be a good example, then you will just have to be a horrible warning.” – Catherine Aird

Two quotes from the British. Although I generally claim Churchill as at least half American through his mother, Jenny Jerome. She was a New Yorker; you know.

All I know about Aird is that quote, but I have been a fan of Churchill for a long time. I did a history report on him in elementary school. The man was a great leader….and hysterical. If you want to improve the moment (DBT alert!) through humor, reading some of his quotes will do it.

Churchill had great quotes, including the one above. I bring it up because in about a 15 hour period I was called both ‘amazing’ and an ‘inspiration’.  I looked around to see whom they were talking to!

Now, don’t get me wrong, I have very healthy self-esteem, but amazing and inspirational I am not. Basically, I adhere to the wisdom of Lord Churchill: “If you are going through Hell keep going.” Sitting around and moping is not going to improve things one iota.  (Not to mention it is just going to stop you in the middle of Hell! )

There is no immediate way to get out of this mess  – maybe won’t ever be – so I  keep moving.

I cannot find the exact source on this quote but, here it is: “If you are going to Hell you might as well enjoy the ride.” In other words, make the most of the moment; make the most of what ya got. What is wrong with dancing on the deck of the Titanic? It might have passed the time!

Pretty morbid? I am not so sure about that.  Most of us had parents who were young in the 1940s.  We are talking about the people who somehow made it  through WW2. How often did we consider our parents to be all that special?  How often did they think of themselves as amazing and inspirational? I don’t think my father or my uncles thought that way at all. What they did was what most people were doing.

No matter what side of things your parents were on, they mostly did what they had to do. They kept moving through Hell.

I am not amazing. I am not inspirational. I am too stubborn to quit. What will happen if I give up scares me to death. I am too proud and arrogant to become ‘a horrible warning’. I am also probably too stupid to see there may not be a way out of this. And you know what? I don’t believe I am much different from you or the generations before us.

When things get rough you keep on keeping on.

In case you non-American folks have not noticed, we here like to claim all sorts of good stuff for ourselves. (I admit it. I am self-aware in at least some respects.)  This next quote is from an adopted son of whom we are proud:

“Life is liking riding a bicycle. To keep your balance you have to keep moving.” – Albert Einstein

It is not amazing. It is not inspiring. It is necessary.

Keep moving through Hell.

Continue reading “Keep Moving Through Hell”

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.

 

Blog Posts

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We will be regularly adding new information to the Highlights/News section as well as Sue’s Journal pages.  To make sure you are notified when that happens, please go to ‘subscribe by email’.  On laptops & most tablets, you will find out how to do that in the right-hand column.  On a smart phone, it will be after the content.

 

 

Home

Sue’s Journal Pages

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.

Update 2024 She HAS been writing about her experience with the APL-2/pegcetacoplan/Syfovre Phase 3 clinical trial, GALE follow-up study, and GARLAND Phase 4 clinical trial.

 

2024 Most Recent Pages

Sue’s Series on Being a Participant in the APL-2/pegcetacoplan/Syfovre Phase 3 Clinical Trial, GALE Follow-up Study, and GARLAND Phase 4 Clinical Trial

2016

Sue’s first aspiration to be a ‘super lab rat’ was not long after she considers the start of her status as legally blind. You can read about that here: In the Beginning.

2019

It was June 2019 she was accepted into the Phase 3 clinical trial for what was first called APL-2, then pegcetacoplan (Syfovre when it was approved by the FDA in 2023).  Finally a Lab Rat. In July of that year, she wrote about her first injection: The Beginning of My Clinical Trial.

2022

In August 2022, before the FDA approved Syfovre (February 2023) and after that she was accepted into the long-term follow-up study, she wrote about her ‘Diabolical Plan’ to be accepted into a stem cell clinical trial while she’s still alive: My Diabolical Plan: Stem Cell Transplant for Dry AMD.

2023

She also wrote about the discussions of the studies: Pegcetacoplan Study Cliffhanger and Pegcatacoplan Side Effect Hunting.

After the drug was approved in February 2023, she revised her article from her perspective of being halfway through the 3-year follow-up study: My Diabolical Plan Revisited March 2023. In this article, you can read about her trip to Wills Eye Hospital in Philadelphia to participate in an interview for a CBS affiliate which ended up being shared internationally about this experience. You can find the link to that broadcast here.

She also wrote What Does Syfovre Mean for You?

She also helped me with the page Questions and Answers – FDA Approved Treatment for Advanced Dry AMD/Geographic Atrophy/GA.

First FDA-approved Treatment for Advanced Dry AMD/Geographic Atrophy/GA: Perspective from Sue.

2024

 

 

 

You can choose:

  1. To START AT THE BEGINNING and follow the pages from one to another like chapters in a book
  2. To get a list of ALL pages (some of the more recent ones may not be here yet)
  3. If you want to access pages by a particular CATEGORY, look to the right of this page or at the bottom and choose a category (for example, Cognitive Therapy, Research, etc)

 

 

Sue’s Toolkit – 2 Years Later – Part 1

Sue’s Toolkit – 2 Years Later – Part 2

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