Big, Bold and Bright...

Retinologist Number 5 referred me to Dr. Low Vision, an ophthalmologist who specializes in helping people with visual impairments.  I filled out a series of papers – questionnaires, data sheets – all in big print – and made an appointment to see her. The appointment was only a month away, but it felt like an eternity. For 15 years, I’d been grappling with my “interesting” eyes and suddenly there was a whole new dimension:  I could do something about it.   I had now acknowledged that I needed and wanted help, and I was going to get it.

On the day of the appointment, I gathered up my Kindle (I wanted the doctor to check the settings) and all my other eye paraphernalia.  Together, my husband and I drove to Annapolis.  Dr. Low Vision sees patients at several different doctors’ offices, and stays booked up well in advance. The first appointment I could get was at an Annapolis office.  We arrived a few minutes early, and were people-watching in the waiting room when we saw a 50ish woman walk in dragging two wheeled cases. She had on a comfortable long dress (like I wear) and a streak of blue in her hair. We guessed instantly that this must be her; if she’d been a patient she wouldn’t have had all the baggage, and if she’d been a drug company rep she’d have been more fashionably dressed.

Sure enough, in a few minutes the woman came out with a folder in her hand and called my name. This was Dr. Low Vision.

She had my medical record and all the pictures from Retinologist Number 5, so there were no bright lights in the eyes this time; all she had me do was read the standard eye chart. I liked her already. Within minutes, she was going through her sack of goodies and pulling out all sorts of gadgets and gizmos. “Big, bright and bold,” she said, “That’s what we’re after.” For the next hour, I was like a kid in a candy shop. I tried a variety of different magnifiers. I learned that there are lots of different kinds and that choosing the right one is almost like being fitted for glasses. I learned that I should ignore the manufacturer’s “power” rating like 3X or 4X, and look for the diopter value.  “Power” rankings are like women’s dress sizes – they vary from manufacturer to manufacturer. Diopter values are standardized across all brands, and give you a much better idea of how well they will work for you.

I learned about sunglasses. I tried on all different colors of sunglasses, and learned for the first time that the colors were for more than just fashion. Brown lenses increase contrast, especially in overcast hazy light. Yellow increases depth perception. Gray is good for color.  Who knew?

She adjusted my Kindle. I had already changed the font to the sans serif to make it more readable, but she widened the line spacing and it made all the difference in the world.

We talked about escalators. Escalators all have a yellow stripe on each step, but about half of them have the yellow line on the inside edge, not the edge you’ll fall off if you can’t see where it is. She agreed it makes no sense. For my part, I’ve started using the elevators.

We talked about driving . . . sigh . . . and she said, “we’ll keep you driving as long as we can.” I talked about my crafts and she recommended some clip-on magnifiers. She was wonderful and had an answer for just about everything.

Mid-way through the appointment, she left the room and came back pushing a cart with a machine on it. It had a small camera and a large monitor. I looked at it and said, “I don’t need that!” She turned it on, put a newspaper crossword puzzle under it and then left the room for awhile. I started playing with the buttons and I couldn’t believe that I could read the clues and see the numbers on the little boxes. I could also put my hand under the monitor and write with a pencil.  When the doctor came back into the room, I told her I thought the machine was way cool. It would help with reading paper and print (I’m all Kindle when it comes to books), AND I could do my beadwork under it! OMG!

I suppose it was a therapy session as much as an eye appointment. Dr. Low Vision was my vision from heaven. I thought about a former neighbor who had low vision, and became completely housebound because of it.  I thought about Retinologists 1 through 4 who were so focused on my retinas that it never occurred to them there was an actual person attached to those eyeballs. Every retinologist should know about low-vision specialists, and should make it a point to tell people about all the stuff that is available. 

How do people learn all this, I wondered? I’m an expert in health care delivery and in aging and I didn’t know any of this! And then it dawned on me – most people don’t know.

Dr. Low Vision gave me a catalogue with all kinds of neat gadgets in it. She made some recommendations for me about magnifiers and also referred me for rehab services through the State of Maryland. I wasn’t quite sure what “rehab services” meant except that I was very interested in the machine that might help me continue my beadwork, and Dr. LV told me they could help with that.

I left the office with a big smile, ready for the next step of the journey. 

Six Little Words -- How are you dealing with this?

Some have asked me “How did this all start?” It started innocently enough.

About 15 years ago, my husband and I had afternoon appointments at Lenscrafters to get our eyes checked for new eyeglass prescriptions. My appointment was about a half hour before his – we each had different doctors.  Well, he was in and out with a new prescription, and I was still in the examining chair. My doctor clearly saw something in my eyes that concerned her. She called in the other docs and then at 5:00 pm on a Saturday afternoon she called the Wilmer Eye Clinic at Johns Hopkins Hospital to schedule an emergency appointment for me.

When my husband and I got there, a very nice M.D. / Ph.D. ophthalmology fellow was waiting for us. For the next five hours he put drops in my eyes, shined white lights in my eyes, took pictures of my eyes and asked me to read letters that were 20 feet away. Finally, he told us we should come back Monday morning to see the experts. We left exhausted, hungry and uninformed.

My vision was ok to me. I thought this was a very painful waste of time – much ado about nothing. Monday we went back to Wilmer and the doctors were again very interested – not in me, but my eyes! They examined and examined, conferred among themselves, told me they had diagnosed me with pattern retinal dystrophy and sent me on my way.

At that point, we switched from the shopping mall optometrist to a Wilmer ophthalmologist for our annual visits. Every year, I would go for my exam, the ophthalmologist would panic and send me back to the retinologist at Wilmer.  I would dutifully visit the retinologist, she would affirm my diagnosis and I would be on my way.  Nothing could be done about it, she said.  She was very nice, but unhelpful. Come back next year, and we’ll tell you how much more your vision has deteriorated.

Eventually that retinologist moved away and I stopped going to Wilmer. My vision started to deteriorate.  I started missing parts of words and things were especially blurry. I kept getting new glasses, always thinking that the glasses would help me see better. I love beadwork and I tried a million different magnifiers to help me. Nothing really helped.

I started seeing a new retinologist and it was a horrible experience. I went into the waiting room and there were probably 50 people waiting. After waiting an hour, I was called by a technician who gave me drops, then called by another one who took pictures,  then was shuffled into an exam room where I waited for the doc. He came in, shined light in my eyes and was out the door before I could ask a question. I figured he saw maybe 200 patients a day – a real Medicare factory. I went back twice and then gave up.

Because the retinologists had a doomsday attitude, so did I.

Last year, my opthalmologist encouraged me strongly to go back to the retinologist. I said I wouldn’t go back to the old one and so he gave me the name of a new one. Retinologist Number 5, I’ll call him.

My husband came with me. It was a smaller office. I was seen on time. Number 5 examined my eyes and showed me the pictures. He showed me the blind spots and told me that I had a two- to ten-year window of progression. Then he asked,  “How are you dealing with this?”

No one had ever asked me that before. I was completely taken aback. Instantly, I blurted out “I’m fine.” He then softly said “When you are ready, I have someone who can help you.”

Six months later I went back for another visit. Short wait, lights in the eyes, pictures. No change, Number 5 said. And then those words again: “How are you dealing with this?” This time it wasn’t a surprise. With tears in my eyes, I said “Not very well.”  I didn’t tell him, but I had signed up to go my annual beading convention and I wasn’t taking any classes where I would have to work with small beads. I couldn’t see them any more.

I had also washed my hair with hand lotion a few times. I misread an airplane reservation for my husband and he missed his flight. I had stumbled on an escalator at a subway stop, and banged up a knee. I was beginning to feel very uncomfortable getting around in Washington.  I found myself making up reasons not to go places if I had to drive – even familiar places. The highway signs didn’t say the same things that they used to.

So this time, when Number 5 asked that piercing question, I said I was ready.

Pattern Retinal Dystrophy or Multiple Scotomas

What I see with my right eye

So, what is my vision like?  Fortunately I have two eyes and one is significantly better than the other. I have multiple scotomas in both eyes but the right one is much worse. Scotoma are blind spots on the macula. The macula is the part of the retina that permits central vision, what you focus on and what you want to see. Imagine looking at a person’s face and seeing only a grayish blur. My left eye compensates some, but it distorts the upper right corner of what I see. When I look at a street sign with both eyes, I simply can’t see some of the letters. Lombard becomes Lombd.  My brain compensates some: Cradle Rock becomes Candle Rock. When I take an eye test I can’t see all of the big E; when we move down a few lines, I can’t see all of the letters.  I have to move my head around to find the letters and even then it’s hard to tell what belongs where. Straight lines become squiggly. Going down an escalator with all those silvery metal lines is really scary. There is little depth perception. Reading is a blurry mess. I’s, X’s, H’s, M’s and N’s get mixed up. R’s, S’s, B’s P’s and D’s do too. Threading a needle at 62 years of age is really hard; with blind spots, it’s just about impossible.

Right now, there are no cures or fixes. What I have is genetic.  My dad had it and some of my siblings do too. It is similar to the dry form of macular degeneration. Glasses don’t help - you can’t correct what you can’t see. My right eye corrected is 20/120. The other eye is 20/60. You need anywhere between 20/50 and 20/70 depending on the state in at least one eye to drive. So, I pass that test. BUT, I oly drive in the daytime, in good weather conditions and where I know where I am going, and not dependent on street signs.

There is test that you can take to see if you have “macula issues.” Close or cover one eye, and stare at black dot on the Amsler grid. If all the lines stay straight and perpendicular, you’re good to go.  If you see some curvy lines on the chart, time to go to the eye doctor. Check both eyes! A sudden change from straight to curvy can mean development of “wet” macular degeneration – a leak or bleed under the macula. This can actually be helped – all the more reason to go to the eye doc immediately if it happens.

Amsler Grid to Test Eyes

There is an excellent app for the iPad and iPhone called Macula Tester. it allows you to test your eyes by marking the curvy areas, take a picture and track your the progress. 

These are the blind spots in my eyes.

So, this is my story. My eyes don’t capture everything, especially in dim light.  This is a form of “low-vision.” Magnifiers help, but they don’t fill in for the blind spots.  BUT, with the right doctor and resources ...

Introduction

For the past few months I’ve been learning to accept - to deal with - the notion that I have low vision. I am partially sighted, visually impaired, physically handicapped and even disabled. The other day, a woman from the Department of Rehabilitation Services delivered a White Cane to me. It has been scary, humbling and at the same time eye-opening,  literally and figuratively. I’ve had my “disease” for years and no one ever suggested there was a significant problem or that anything could help me. The doctors all got excited when they looked in my eyes and they studied them for sometimes hours. Everyone wanted pictures of them. When I asked questions about my eyes, I didn’t get much of a response - just a “there’s nothing we can do” or “I think you should go to the retina specialist.” When I went to the retina specialist, my poor little eyes barely saw the expert doctor, much less heard anything he had to say, if, in fact he said anything at all! Later, one of my new docs would suggest that retinologists have the "personalities of fleas." How right she is. It was this doctor that put me on a new course (I’ll talk about her later.). What boggles my mind is that so little information is available to people like me and to the public at large. We hear of people with low-vision, but they are old and frail. They stay inside and use big round magnifying glasses. They give up reading and doing the things they love. They become invisible...and they wither...


I am a lucky one. I am on a journey now - accepting and learning. This blog is my way to share my experience and maybe help someone deal with his or her own visual issues or help a friend or relative. Enough for now.