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”

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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!”

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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”

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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”

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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”

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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”

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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”

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