Advances in treatment continue to become available

I have been noting here some of the detail of experiencing vision loss due to dry macular degeneration, an age related condition that is progressive and, until the last few years, a sentence of unrelenting progression to blindness over time.

As an artist, I may be more sensitive to or aware of some of the small and subtle changes in vision that have taken place, and have been somewhat intrigues by ow the subjective experience manifests, compared to the objective measure of reading an eye chart.

In the past few years, as research has begun to make treatments available, I have been able to participate in a research study and also to take advantage of one of the treatments that has slowed what was a rapid deterioration of my vision.  Another recently approved treatment came to my attention, only to learn that it was not tested on people whose eyes were as impaired as mine already are, and so I do not fit into the category that was approved by the FDA.  However, my doctor said that while I don’t qualify for insurance coverage, there is no reason why I couldn’t try the treatment.  He was not recommending it, because he did not think it would be helpful to me, and paying out of pocket is not cheap. But he sees no contraindications, and could do it for me.  He made sure I understood he cannot promise any beneficial results for me because patients with advanced stage disease had not been tested..

I decided to take the plunge.  The Valeda treatment consists of 9 treatment sessions over 3 weeks, repeated 3 times in a year.  It’s a light treatment, meaning that light is literally the therapeutic agent. Each treatment consists of a couple of short cycles of gazing at a pulsing red light followed by allowing light to bathe closed eyes.  Entire treatment is less than 10 minutes in a session. There is no discomfort. My understanding is that it stimulates and energizes  the mitochondria, and that they then can clear the cellular waste that results in the protein deposits on the retina which causes blind spots. If the treatment was reversing – not just slowing – vision loss for less damaged eyes, my hope was that it could reverse some of what has already happened to mine.

After the third treatment in the first series, I started noticing positive changes.  After years of watching the small incremental losses of vision, it was actually startling to start seeing things again or differently that I had watched slip away. I hardly dared hope the observations were meaningful.

One of the first things I noticed, on the way home, was that I could actually read the number on the bus stop sign.  And the number on the bus itself, both the route number and the vehicle number.  OK, I thought, that seems new.  And it’s a familiar stop and route, so maybe I just haven’t tried to read the vehicle number before.  Let’s keep watching for what’s new. (Bear in mind, I couldn’t read signage at the airport in July, not even gate numbers and restaurant names.)

A  phenomenon I have been watching since the early days of vision loss is the floating shadow that I see under low light conditions.  It was one of the very early things I noticed – it was like a water stain on the wall – just a slightly darker area with irregular edges – that moved with my shifting gaze.  Over time, it grew in size and density, and is different in each eye.  So at night, after lights out , I often check for changes by seeing how big and how dark is this shadow agains the ceiling, when there is only ambient light from the streetlight outside and the nightlight down the hall.  As I gaze around the room, I notice how much of the window does the shadow block? How much of the doorway to the hall where the nightlight burns.  The shape of the shadow in each eye has become familiar, and it grows slowly, inexorably, both in size and in density.  For a while now, the shadow has swallowed up the entire window with either eye.  And the shadow has seemed very black at it’s center in the left eye and dark grey in the right eye.

So here was something I could  test – how are my shadows doing?  It has been startling to notice that, in both eyes, the shadow has become significantly  smaller and less dense.  The door to the hallway does not completely vanish with either eye, though parts of that lighted rectangle are still dark, it no longer seems completely blacked out.  More like a darkly tinted glass has passed in front of it  rather than a solid shape blocking the entire area.. The bedroom windows are different – with the left eye,, the shadow will still cover the whole area but I think I can faintly see light through it.  The right eye, though, the shadow no longer covers the entire window.    This change was so startling and encouraging that I think I woke up a few extra times during the night to check if it was still true.

Over the next few days, it took my breath away when I suddenly realized that I could see my grandchild’s face when we were talking.  I didn’t have to look way off to the side to be able to see their eyes, their smiles.  Walking into a room, I could see and recognize more faces – not all, but more.

While I was knitting, I could see the ends of the needles going into the work.  This made me wonder about drawing, writing, anything to do with making marks.  I often describe how I “can’t see the end of my fingers” or my drawing instrument to help people understand why drawing has become so difficult.  If I can’t see the end of the pencil, then I can’t place it where I want it to go on the page.  So the next thing I did was just try to bring my index fingers together,    I could see well enough to do that,  Since I have been known to miss the hand reaching out to hand me something in recent months, this felt pretty big.  So I tried a little doodling.  And was pleased to be able to place the pen back on the page where I wanted to while doodling.  I had to concentrate pretty hard  to do it, but I could. 

I started to think about pastels. I love painting with pastel because the colors are so rich and beautiful and the sticks handle like a drawing instrument.  For a while it has been frustrating because I can’t reliably place the stick where I want the mark to go, but also because subtle color discrimination was being challenged as well.  Last winter 10 different pastel sticks of slightly different hue all looked the same to my eyes.   One of the very early signs I noticed about losing color vision was when  I was trying to read a document that a doctor had highlighted for my attention.  But when I lookedat the document, I could see no highlighting.  Until I looked left or right. With the document in my peripheral vision it was like the lights winked on.  (This was back when I could still read a printed document.)  A similar effect started happening with blue flowering plants – I could be walking along thinking the bush ahead was all lush green, but when the bush was beside me, the blue flowers suddenly blinked on, like Christmas tree lights.  So the eventual  trouble telling pastel sticks apart was not too surprising, just disheartening. 

I was a little afraid to get out the pastel box and test how this part of the story might be developing, so I waited until I started the third week of treatment before pulling them out.  Then, having no idea whether the improvements I was noticing would last any length of time after this round of treatment ended, I pulled them out and opened up the drawers.  To my astonishment and delight, I could distinguish among the pastels in ways that, six months ago, were beyond me.   What joy!

It’s exciting to see changes in a positive direction. It’s tempting to hope for still more improvement. It’s scary to contemplate whether it will last.  I guess it’s time to practice living in the now, and enjoying the improvements so far.  Here is the first of the new pastels. I am sure there will be more!