Spring 2013 Update

It’s been forever since I’ve done an eye update!  Retirement is so much fun. I’m busier than ever and I suppose it's a good thing that I'm not focused on my eyes. 

But, this is a blog about my eyes and I write it in hopes that it can help someone. Here is an update.

Last summer, after a few false starts with adjustments and fittings, I received my bioptics, or my Jordi glasses, as I call them. These are a wonderful invention and they

Here I am enjoying Homecoming at the Citadel
 

served me well. I carried them to New Zealand and Australia and fully enjoyed a new ability to see off in the distance. However, driving with them was very scary for me. Because the telescope part has a magnification level of 4X, looking through the lens significantly reduces the field of vision.  Instead of seeing the road sign with the overpass above it, I was only able to see a small part of the road sign. To read the whole thing, I would have to “dip” into the telescope and then move across the sign. I missed everything else that was going on on the road. Nevertheless, the bioptics were/are a significant improvement, especially in strange places, in airports, at special events and when alone (when I am without my seeing eye husband who can read for me!).

In November, I was honored to speak to the Lion’s Low Vision Research Foundation (subject of earlier blog). I still want to do some kind of volunteer work with them, but haven’t figured out how yet. Will work on that.

In January, I had a little scare. I went to my regular eye doc, Dr. G., and she thought she saw what could have been a hemorrhage in my left, the better eye. Hemorrhages in the macula are indicative of the wet form of macular degeneration. A common remedy is laser treatment to stop the bleeding and/or regular injections directly into the eye to prevent the growth of the blood vessels that could cause the hemorrhage.  A friend who has macular degeneration gets these eye injections regularly and I don’t know how he survives it. It is a fear for me, and I hope I never have to have it done.  I panicked and was severely frightened that I might have to have a shot in the eye. However, after my doc dilated my eyes and examined me some more, she determined that it was an artifact of sorts and nothing to be concerned about.

Binoculars flipped up.

Binoculars flipped down.

During this visit, when we weren’t dealing with the potential crisis of a hemorrhage, Dr. G. very ambivalently showed me the latest and greatest glasses. She was hesitant because I had just spent money on the bioptics and I don’t think she wanted to tempt me with the latest and greatest gizmo to help patients with low vision. At the same time, she was very excited about showing me what was going to be available.  Well, I put the new ones on and was IN HEAVEN! While my eyes were dilating, I wore the glasses and sat in the waiting room and watched – read – the text stripe that crawls along the bottom of the TV screen with the latest news. It was awesome! Dr. G. suggested that I come borrow the glasses for a weekend. I told her it wasn’t necessary.  If what they come up with is equal to these, I want them! And the glasses are not horribly expensive – about 1200 dollars compared to 2500. Hopefully all the bugs would be worked out by the time of the next visit.

In February, I went to my “new” retinologist at Wilmer.  (My old doc, the one who I will always credit with getting me on the road to rehab, moved his practice.) As is the protocol with Hopkins, I was seen by several folks – students, residents, fellows, technicians – before I saw her (or she saw me!).  And they took a gazillion pictures. They did a new test on me called an OCT. OCT means Ocular Coherence Tomography and it measures the thickness of the macula. It wasn’t painful – more white lights and sitting still. Not surprisingly, my results showed damage.  It’s a fact  - I have abnormal eyes. This isn’t news to me.  I just wish they weren’t so darned interesting that everyone has to take a look!

This is a "normal" OCT.   it shows
about 10 different layers of the retinal.
By measuring the various layers, the doctor
can determine damage.

One of my eyes. See the variation
 in the lowest layer.

The good news is that my new retinologist says that my disease may not progress at all, and I may not lose any more vision! This is much better than a previous prognosis of “a 2 to 10 year window” before the progression stops. Keep your fingers crossed.

In March, I returned to Dr’ G.’s office to be fitted for the Ocutech Sight Scope, the new gizmo! These are regular glasses that have a flip down binocular attached to them.  The binoculars are 2X power so the field of vision is significantly larger than my bioptics. And they are lighter. The glasses arrived just in time for me to attend, SEE, and enjoy a celebratory occasion for my nephew. I’ve had the

glasses for a week and a half, and, so far, I love them! And seeing street signs is a breeze! I’m sure I’ll write more about these as I experiment with them.

Wearing the SightScopes

So, what is it like for me to see? I’ve tried to come up with a way to articulate it. If you have 20/20 eyes, or eyes that can be corrected with glasses to 20/20, we don’t see the same way. When I go into a supermarket or a big box store like Lowe’s, all of the stuff is overwhelming to me. It’s like my brain can’t absorb it all and everything blurs together. I can see a sea of red and white cans and I know that they are Campbell’s soup cans, but they are blurred together.  It’s too much and I feel over- stimulated. I can’t read the signs in the aisles.  It makes a difference if it is a store that is familiar to me or if I am walking into a store where I have never been.  If I know my way around, I can do just fine.  The same is true with airports.  I’m familiar with BWI and I feel comfortable there, but a “new” airport makes me uneasy. I have to look around for bathrooms, baggage claim and ground transportation. If the airport is busy, I am even more uneasy. Again, too much stimulation and it’s hard work to absorb it all.

I do know that when I am wearing my brand new glasses, watching TV is very different. I can read the guide now, and the colors and detail are clearer. I wonder what I have been missing! We have a small TV in our bedroom, and from a distance, I can barely see anything.  I use it as a radio.

I generally do what I want to do, but I have limitations, and I have to accept them. Driving is the prime example. During daylight, in familiar areas and non-busy times of the day, I’m ok. I panic sometimes when I'm out and it starts to get dark. I have to leave, I say, and that's hard.  I’ve often thought of another career, but I’m not sure I would trust myself. For example, I thought it would be fun to be a pharmacy tech or a nurse. But, I can’t count on my accuracy.  I just can’t have it both ways and that’s ok. There's plenty of life to enjoy!

Safari for Sight with the Lions Club, November 17, 2012

 The Lions are a fun group.
One of the leaders dressed up!

The Lions Club is the largest service organization in the world with a strong history of performing charitable work for a variety of humanitarian causes. Founded in 1917, the organization has more than 45,000 clubs in more than 200 countries and has more than 1.3 million members.  In 1925, Helen Keller spoke to the Lions at their International Convention and charged the Lions to be Knights of the Blind.

Helen Keller presenting award
 to Dr. Patz and his colleague.

In 1956, Hellen Keller presented an award to Dr. Patz for his outstanding work to prevent blindness. She told Dr. Patz "Never tell a patient there is nothing more to be done. Rehabilitation is always an option.”

The Lions embraced the challenge and today, Lions across the world work to improve or maintain vision and conduct research into eye related issues.  We have all seen and probably contributed to the Lions’ eyeglasses collection boxes in doctors’ offices or optometry shops.

Dr. Arnold Patz 
with his Presidential 
Medal of Freedom

Dr. Patz went on to become director of the Wilmer Eye Institute and recipient of the Presidential Medal of Freedom for his work. He also began a partnership with a multi-state collaboration of Lions Clubs (Multiple District 22 - Maryland Delaware and the District of Columbia) that manages and supports the Lions Vision Research Foundation (LVRF). This organization supports low vision research and rehabilitation and minimizes the disabilities caused by low vision and blindness. The objectives of the LVRF are met through a partnership with the Lions Vision Research and Rehabilitation Center at the Wilmer Eye Institute at Johns Hopkins Hospital in Baltimore. 

I have been a patient at the Wilmer Low Vision Center for about a year, and my care there has literally opened my eyes. I was recently privileged to tell my story at a meeting of the Lions Clubs and the LVRF.  Here is what I said --

My Comments...

Good morning and thank you so much for inviting me to share my story with you.  I did some research on the internet and discovered how important the Lion’s Club has been to help people like me and I am truly grateful.

About 15-16 years ago, on a Saturday afternoon, my husband and I went to Lens Crafters in the local mall to get our eyes checked for glasses. My husband went in for his appointment and came out with a new prescription. There was nothing unusual. I went in for my appointment and wasn't so lucky.  My optometrist looked in my eyes for a long time and she called in the other doctors in the practice to take a look too. She was calm, but I knew something wasn’t quite right. She called Wilmer and sent me over right away.  At Wilmer, we were met by a resident who was also a research student. He took me right away and spent about five hours looking in my eyes. Before sending us home, he told me to come back on Monday to see one of the Bresslers.

On Monday, I returned to Wilmer and met Dr. Neil Bressler. He took his bright white light, shined it in my eyes, moved it across the retina and told me I had what is called patterned retinal dystrophy. He told me that my vision would probably get worse over time and there were no effective treatments. No medicines; no surgery. Not a pretty picture.  I had a progressive eye disease that was incurable. He said it was similar to macular degeneration.

My 75-year old neighbor, Weezie, had macular degeneration and I watched her stop reading, watching television, driving, going out, and doing the things that she loved to do. 

Over the next few years, I had series of visits with a variety of retina doctors. These appointments were depressing and not very useful. Every time l went, the doctor shined the white light in my eyes, said “hrumpff”, “no change” or just a “yes” and left the room. He or she didn't offer much help, advice or even hope.  Finally, I just stopped going. I have often suggested that retinologists have personalities akin to a flea.

Because my visits didn’t really produce much, I stopped going these specialists and I became resigned to a future similar to the one that my neighbor Weezie was experiencing.

Not surprisingly, my vision got worse. When I read the eye chart, I couldn't see all of the big E.  I missed the top part of the E or the bottom or the middle. I couldn't tell the difference between X's,  M's, N's, W's Y's and Z's. And, I got 3's, S's, B's, O's, D's and 5's mixed up.

My ophthalmologist wasn't happy about my boycott of retinologists and insisted that I go visit one.  Reluctantly I made an appointment.  I pretty much knew the routine - the pictures, the drops and then a wait for the doc and that darned white light.  However, with this visit there was something very different.  The retinologist came in and did the white light exam. Then he looked at me and said "How are you dealing with this?" Six words that I will never forget.  I braced and said "Fine, I'm getting along just fine." I didn't say a word about how I was afraid that I would have to stop driving because I couldn't see street signs, that it was difficult to thread a needle, that I couldn't do my crafts, that reading was a problem. I had washed my hair more than once with conditioner rather than shampoo.  "I'm fine," I said.  And then he very quietly and gently said,  "When you are ready I have someone to help you...."

Midway through my talk,
I put on my Jordi Glasses.

Six months later, I went back for a follow-up appointment and at the end of the white light exam, he said again "How are you dealing with this?" This time, I was prepared and said "Not very well."

And so, my journey started. This retinologist put me in touch with a low vision doctor who was wonderful.  I had only one appointment with her and she helped me with some very basic concepts - "Big, Bold and Bright," she said, and she showed me some magnifiers.  Every time I said "I can't do this" or "I can't do that" she said, "Yes you can. let's figure it out. " There just wasn't enough time in a 45-minute appointment.  I called her for a follow-up so I could get a new glasses prescription and learn more, but she sent me back to my ophthalmologist.

I wanted a good eye doctor that could coordinate all of my care and help me “deal with this” in the best way possible.

So, I began to investigate other options. That's how I came to The Low Vision Center at Wilmer.  I made an appointment. When I arrived, I saw Jim, a rehabilitation therapist.  "What do you like to do?" he asked.  "I do beadwork and I like to knit. But I can't thread a needle anymore." He showed me some different lamps and what a difference a bright light can make. I had some clip-on magnifiers to help me with close-up work, but I wasn't using them correctly.  He showed me that if I put the magnifier on the distance portion of my glasses instead of the bifocal part, I could hold my work farther away and my neck and shoulders wouldn't get tired.  That simple trick along with proper lighting was all I needed to enjoy my knitting once again.

After I saw Jim, I saw Dr. Goldstein. She asked me a bunch of questions. I told her I had problems seeing street signs, night vision was difficult, and I had fallen a few times because I didn't see a step.  The worst thing was that when I got off of an airplane I couldn’t read the sign that pointed me to Baggage Claim or the restroom. Dr. Goldstein was clearly putting the pieces together to figure out how this vision issue affected my life.  She examined me and fitted me with new glasses.  The surprise was that she wanted me to come back in a month so she could check the prescription.  What kind of eye doctor does that? It was also sort of neat because Dr. Chan was there. Dr. Chan was a low vision fellow working with Dr. Goldstein. (I now know that LVRF funds this position.) Dr. Goldstein explain what she was doing to Dr. Chan and even had Dr . Chan help examine my eyes.

A month later I went back. I saw Jim again and this time, I brought my knitting and all of the over-the-counter gizmos that I had collected over the years.  I had prescription beading glasses, reading glasses of all strengths and several more kinds of clip-on magnifiers and handheld magnifiers, etc. etc. I had accumulated all kinds of stuff to help me see better. Talking through it all affirmed what Jim had already figured out.  All I really needed was a few of these things and someone to show me how to use them. I pulled out my knitting and Jim watched me and verified that I knew how to use the clip-ons. He showed me some other gadgets and gizmos that could be helpful.

My Team: Jim, me, Judy Goldstein and Kat

I went into see Dr. Goldstein.  She checked my glasses and they were fine. And then, she showed me various tools/instruments that could help me with my distance vision. ... and street signs and problem in airports. She pulled out these glasses that looked like Jordi wore in Star Trek. I put them on and after a few tries, I was reading book titles on the shelf across the room. It was amazing.

Dr. Goldstein introduced me to Kat, a low vision occupational therapist.  Together Kat and I walked around Hopkins Hospital and experimented with the different telescopes and bioptics.  She would ask me to find an office or particular place in the hospital and to take her there. After practicing with different styles and magnification strengths, I settled on a pair and was given a loaner set for a two weeks. 

After the appointment, my husband picked me up at the hospital and we went to a Subway to get some lunch. I put the loaners on and for the first time in ages, I could read the menu! These glasses were too cool. I ordered the same sandwich that I usually got, but at least I had choices!

I ordered the bioptics and Kat and Jim and Drs. Chan and Goldstein taught me how to use them.  In addition to reading street signs every time I was in the car (my husband calls me a GPS on steroids), I was able to see my nephew walk across the stage and graduate from high school.  In a month or so, I'll take lessons and learn to coordinate driving with use of the bioptics.

And so, my journey continues.

Having low vision is not a death sentence. I can do anything I want. I may have to find a workaround and I may not get a perfect result, but I can do it. Education of the public is critical.  Somehow, the word needs to get out to all of the Weezies of the world that help is available and accessible. There is no reason to accept the status quo. 

The work that you do to support low vision services and research is so important.  There are easy and inexpensive fixes, like clip on magnifiers that have given me back the ability to do hobbies and enjoy life. What is important is that we have people to teach patients how to use them. We need more clinics like Wilmer's Low Vision Center to work with patients and we need more Dr. Goldsteins.

Thank you so much for inviting me and letting me tell my story. Thank you for all that you do.

-----

It was really a great day, and I learned so much!  

For more info about the Lions Vision Research Foundation, click here.

After the morning presentations, Lions were given a tour of the Low Vision Center. Click here to see a video of Dr. Chan describing a low vision examination.

My Jordi Glasses are Ordered!

This is what they look like! Mine will be blue!
They are the Ocutech VES-Sport!

Woo hoo! The other day I was measured for my bioptic glasses! I’ve had a loaner pair from Wilmer for the past two weeks and I have to say that I LOVE them. When I wear them, I can see so much! Street signs, Power Point presentations from the back of the room instead of the front, menus posted on the wall, restroom signs, faces of people playing basketball in the park behind our house, signs inside the metro. I even saw detail on our 55-inch HD TV that I've never seen before!

My new here - Geordi La Forge

My sweet husband was so tired of me narrating our road trips that I thought he was going to kick me out of the car:  "Did you know that Exit 17B is before Exit 17A”,  “Checkers Cheeseburgers $1.89”,  “Left turning vehicles”, “Hey, look, there is the sign for the light rail”, “Did you see that sign for the aquarium?" He said I sounded like a GPS with runaway software – the only thing I didn’t say was “Recalculating.”

I wore the glasses every day and practiced aiming my better eye out the telescope’s small hole to bring into focus a small, but very clear field of vision. It’s a little tricky, but after a while the muscle memory develops and it becomes as easy as looking in a rear view mirror.

The only problem with the bioptic glasses was that occasionally I got so involved with all the things I could see, that sometimes I didn’t always watch where I was going. Several times, I almost walked into something or fell. I didn’t, though, and I also didn't feel the least bit self-conscious about wearing these weird looking things in public.

Now I can see the subway menu when
at the cash register.

I call them my Jordy Glasses, in honor of Geordi La Forge, the Chief Engineer on the Starship Enterprise, who wore a VISOR (Visual Instrument and Sensory Organ Replacement). Jordy, my preferred spelling, is an acronym for “Joint Optical Reflective Device.” OK, that’s really just “Jord,” but it’s my blog and my eyes, so I’ll take a bit of license if I want to.  While discussing this with my low vision therapist (LVT, since we’re doing acronyms today), I learned that there really is such a thing as a “Jord(y)”, and of course it was developed at Hopkins!

When I sit on the metro, I can read this sign.

Anyway, back to the “fitting.” First, it was necessary to show the LVT and the doctor that I really was making progress. They both agreed that I was. In fact, with my better eye and the telescope I was able to read the 20/15 line on the Eye chart. “Astonishing” she said.

The “carrier” lenses will be my distance prescription on top and the lower bifocal will be speedometer distance. I chose silver frames since I wear a lot of black AND since I had no color choice with the white cane, I chose a classy metallic blue for the telescope. If I’m going to be a Star Trek character, I might as well be a fashionable one!

Next steps: I’ll get the bioptics in a month. First I’ll practice some more. Then, I’ll take driving lessons (at my age!) to see if I can integrate the telescope safely into my driving. This little gizmo will make a world of difference - not just in my vision, but also my independence. Stay tuned!

Back to Hopkins and the Wilmer Eye Institute...

The Wilmer Eye Institute at the Johns Hopkins Hospital is perhaps the most renowned eye hospital in the world. Wilmer has the best doctors and it does the most research.  If you have an eye problem, Wilmer is the place to be. People who know Johns Hopkins are familiar with the iconic Dome on the original building, and the huge statue of Jesus inside.  It’s the centerpiece of Hopkins, which today is an enormous conglomeration of buildings that takes up maybe 15 city blocks.  

This is a map of the Hopkins Campus in Baltimore. The upper circled area
is the Wilmer Eye Institute. The new building to the left house the Wilmer
operating rooms and research areas.

The entrance to the Eye Institute is just past the statue. It sort of sets the stage.  Going into Wilmer, you have the feeling of going into an old-fashioned bank with very high ceilings. Patients line up in a queue in a roped area and wait for a registrar. There is even a sign there that says (in large type) “Please wait for the next available registrar.” There are nine registration stations and people move through them quickly as the registrars shout “next.”

The registration area.

I visited Wilmer about a week ago for the first time in years. I remember my many visits to their retina clinic and at first blush, this visit wasn’t much different. So many patients. The registrar said they see more than 400 patients a day! Even though they now have a newer and bigger building for research and surgery, I went to same old place and registration was the same. On the high walls, there are pictures of doctors caring for patients in the 30’s, 40’s and 50’s. Johns Hopkins is practically the birthplace of modern medicine, and everywhere you look there is a strong feeling of historical significance, almost reverence.  When you are there, you know that you are not in any ordinary clinic. In the Wilmer “Dome”, there is even Dr. Wilmer’s examining chair where he examined the eyes and prescribed eyeglasses for eight consecutive US presidents, from Grover Cleveland through FDR.

My experience last summer with the State of Maryland’s Department of Rehab Services was very positive, but there was/is no continuity to that service. And, unlike so many of their clients, I have the means to pay for my own eye rehab. I wanted to develop a relationship with a doctor who understands my disease and who can prescribe glasses. The retinologist who I see twice a year doesn’t do glasses, and neither does the low-vision doctor I saw earlier.  I also figured that if they ever discover a cure for what I have, Wilmer would probably be where they discover it.  So, I made an appointment, and had copies my records sent to the Dome. Still, I was a little leery, because if you remember from earlier blog entries, my previous care at Hopkins, though medically very good, was not very helpful.

I registered and made my way to the elevators to go the third floor. As I turned the corner, I noticed a glass case that was full of low-vision gadgets and gizmos with a sign that said “Low-Vision Rehabilitation.” Hmmm. This was different.  I stopped and looked. I didn’t remember this from 15 years ago or even 10 years ago. I went up the elevator and then followed the (large print) signs for low vision, and came to another registration desk. After all, this is Hopkins! I checked in again, and was then ushered into a waiting room where there was only one other person. This, too, was different. The places I’ve visited in the past were always crowded. After a 10-minute wait (another big difference), a guy named Jim came out and called my name. He was a low vision specialist, and we started right in. 

Jim checked my close-up vision and asked what kind of devices I was using. I pulled out a variety of magnifiers – standing, portable, loupes, clip-ons, etc., etc. We went through them one by one, and immediately he taught me something I didn’t know. I’m not sure I can explain it, but when I use magnification, it effectively enlarges the area around the blind spots, and that’s what allows me to see more – it’s not so much making what I’m looking at bigger, but instead enlarging the field of vision. Jim said he would guess that after using a magnifier for a while, my eyes get tired, and he was absolutely right.

Jim said that because of the disease I have, my eyes work overtime and it’s not surprising that at the end of a day, I feel like putting ice cubes on them.  I can help the eyestrain by holding things very close up to my eyes, but if I do that for long enough it will cause shoulder, neck and back pain. Jim said the goal was to find the just-right combination of magnification and lighting that will get the best use out of the vision I have left, with the least amount of fatigue.

We played with the light using my clip-ons and other gizmos.  I knitted with and without light, with magnification on my distance bifocal and with magnification on my close-up bifocal.  I am learning soooooo much.

I asked Jim how long this service had been at Hopkins and he said years. This included 10 – 15 years ago when I was a patient. No one referred me or even told me about it, I said.  Jim wasn’t surprised, but he added that retina doctors are getting better about referrals. Maybe I’m not the only one doing consciousness-raising.

Do you ever wonder how silly we look when we get our eyes
examined?

After an hour or so, I moved into the doctor’s office. I don’t know if this doctor is famous, but she is certainly well-respected. She’s an optometrist and not an ophthalmologist. This is ok. I want someone who can give me the best possible glasses and help me see the best I can. She checked my peripheral vision, contrast, everything. I looked as hard as I could to read every letter and line and I moved my head all around to see around the blind spots. She was patient and let me take my time so we could get a good evaluation. I think it’s an F, I’d say, but it may be an E.  She had all the notes from the Hopkins retinologists of years past, and from my new one, and had read all of them. I learned that I have “eccentric viewing”  in my right (bad) eye. That means that a person looks slightly away from a subject in order to view it peripherally with another area of the visual field.  The internet says I’m using my rod cells instead of my cones. In my better eye, I tilt my head to the left in order to view something straight on. I never noticed.

Anyway, the doc was great.  I brought up my worst fear and asked her if I was “legal” to drive in Maryland. The thought of giving up driving is scary. How will I get where I want to go? Who will take me? I will become such an imposition if I ask my hubby and friends all the time to pulleeeezzze take me to the bead store, the yarn store, the nail place, etc. Yikes! I’m not ready for helpless!

After a half hour and some definite anxiety on my part, she said yes, I was legal to drive. She was comfortable that because I had already made decisions about driving at night, in bad weather, heavy traffic, etc., and that because I had asked the question, that I would know when it was time to stop. Like all the other doctors, she also assured me that I probably will not go blind.  Just be careful, she said. (My husband says I’m actually a better driver now, because I know I have to pay constant attention. Amazing what fear can do.)

We talked about the impact of my low vision on my being and how just working all day to see makes me tired. She understood, and made me feel like, yeah, it’s ok to just sit still and close my eyes now and then.

She gave me a new prescription for glasses and we scheduled a follow-up appointment. I’ll go back in about 6 weeks, after I receive my new glasses. Next time, she wants me to bring my bead work. We’ll also look into a bioptic telescope to put on the lens for my better eye, which might help me see street signs.

And so, I’m back in the Hopkins system for my low-vision rehab and corrective lenses.  And this time, I feel good about it.

Part of the history of Wilmer includes Dr. Wilmer's “Examining Chair.”
Dr. Wimer examined the eyes of eight sitting U.S. Presidents. In
2001, they took the chair off the shelf so President Bush could
sit in it too!