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!

Saturday, April 20, 2013

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!