Fifteen years ago, I was diagnosed with a condition that has lead to a visual impairment called Iow vision. I’s been quite a journey of learning, coping and adapting. I’s not the end of the world, and there are many tips and tricks to help. You just got to know about them! Hopefully my story will help someone out there! If this is your first visit, you may want to start with the first 5 or 6 posts. Enjoy!

Wednesday, November 28, 2012

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.