My Red Tail Tale: 06/18/09

I've been waiting since 04/24/09 for this appointment with Dr DeCarlo. If you recall from my last passenger evaluation Jennifer recommended I see my Dr. to get help seeing red lights during daylight hours. I came into the office that day with my bioptics ready to see what she could do. I ended up starting my visit by having her newest apprentice observe my vision with and without bioptic use. She was very pleasant and we easily found common ground to talk about. Too bad though, I think she's married. I should have used my bioptic to scope out a ring. Anyways, after testing and some interesting chatter, Dr DeCarlo waltzed in with her usual calm, well put together demeanor. She and I reviewed what Jennifer told me. But it was not until this point I knew that Jennifer told her she was "scared" to ride with me because I wasn't seeing red lights well in day. This seemed out of character for someone who works with visually impaired people for a living. I think communication there could be misconstrued, so I dismissed it. Of course, the very next thing my Dr tells me is that if this doesn't work, we can't continue. This is something I thought about , but her putting lip service to my thought pierced my soul. Why had I not worried about this more before my visit? I assumed I could at least drive at night. The problem with my assumption is I must still pass the drivers test during the day. Oooops.

Dr DeCarlo explained that she had successfully fitted a patient who had similar color vision problems with these red filters. She then really boosted my spirits when she told me this person is driving with them now. I became elated again. However, my test was yet to come. No one knew if the red filters would work or not. My Dr found a little flashlight type device and asked me what i saw. Then she gave me the red filters to try. This flashlight had several spots, or sources of light. My job was to ID which light sources were in use at a particular time. Dr DeCarlo quickly learned more about what colors I had a problem with. She told me the ironic thing is the red filters block out the green light, yet enhance any red lights. So how would I see traffic lights that are green? Simple. I will look through the unfiltered bioptic for green lights. OK, so it may not be so simple to you, if you are a trained driver, but I'm all new to this, so it's a trivial matter. I really could not gage how well the filters worked inside her office. She said the red filters seemed like the natural next step for me, but there's no better test then the real thing. What is the real thing?

The real thing is the test using the filters outdoors to see red lights and tail lights. This was my absolute last chance. I wanted to do whatever it took to make these things work for me. But ultimately God was going to decide, as He always has, exactly how well this would or would not work. The closer we got to the bottom floor of the Eye Center the more nervous I was. The doctor did not go with me, she sent her apprentice. I know we all must learn at some point, so I followed her every instruction. We joked that she was so new she was not too familiar with the area my Dr. told her to take me to. So about 4:30 that Thursday the bright sun greeted us for the test that had the potential to change my life. So simple, yet so important. I was really facing a lifelong enemy: harsh sunlight.

Dr DeCarlo's assistant asked me to first look for a traffic light. I stepped to the edge of the street that was lined with parked cars to peer up at the light. I only saw part of it. I looked into the distance wondering why it was not changing colors. It looked like it never turned green. She asked what I saw. I told her it the light seemed red but never turned green. Then I realized I was looking at the orange back part of the traffic light not the front of the light. Where was the one she was seeing? I peered back noticing she was not standing at my angle. Then walking closer to her we realized the tree in front of me was hanging over the light. She could see it from her angle but the traffic light was completely obscured by the tree silhouette from my angle! What a RELIEF! I was so scared it wasn't working. Now I had a second chance.

Then it happened. The green light changed to red and I could see the red light so intensely magnified. It was like magic glasses. The red just jumped out at me, no longer blending in during harsh daylight. I was elated. Then the assistant asked me to look the other direction.....no problem, I could see them very easily. We needed more test. So she had me monitor the red tail light on a car that just passed us. She asked me if it was blinking or solid. I could clearly see when it stopped and stared blinking without any hesitation! This is incredible! Then we spotted cars further away and she put me through additional similar testing. She could see how excited I was. Even more awesome, I did not get ONE test wrong. Dr DeCarlo appeared on the street after about 10 minutes to check our progress. Her assistant told her I was batting a million!

The three of us walked back inside, where Dr DeCarlo called my driving instructor Jennifer, who was along everyone else, happy to hear that this last crucial effort worked. Now my big question is how will I wear these AND my bioptics. The answer: Dr DeCarlo says Jennifer and her can arrange to have a hole cut in the red filters large enough to have the bioptic fit though. That way one pair can be worn over the other. Another great advantage for me is the red filters offer much more sun protection then the regular sunlight filter Ocutech provided with my bioptics. The red filters have SIDE sunlight protection too. Now on to the next step: bioptic passenger testing with my new red filters. I can't wait!

My New Diagnosis: Cone Dystrophy: 04/30/09

I was not on pins and needles too long before Dr De Carlo called me with the Electroretinogram results. I got a voicemail saying she could not leave this information on the phone and must reach me directly to discuss my case. I understood her ethics but lamented some about the phone tag. I got off work and still no call. I sat waiting on the bus while staring at my phone as if that would help it ring. I checked the volume because I mute it out of habit at work. I checked the battery. I checked the voicemail. Finally at the very late end to my doctor's exhausting work day I got the call! My bus still had not arrived so I talked to her with quiet enthusiasm in my employer's lobby.

She told me I have what she suspected: Cone Dystrophy

Dr De Carlo stated by doing this electroretinogram test we ruled out the possibility of other optical diagnosis. I asked her several questions about the symptoms. It all added up! I have light sensitivity problems during daylight hours, I can see well at night, I have color blindness, and I have problems seeing fine details. She was so professional and kind. She assured me that the diagnosis itself would not hinder my pursuit to be a bioptic driver. I was relived. The thought had actually never crossed my mind. I never once thought she may find something that will inhibit my ability to try bioptic driving. She went on to tell me that cone dystrophy can be genetic. She said that more family background may help shed light on this issue. She said there's no cure at this time as it's all a brain centered problem. But, with more advanced genetic research there is hope.

Another thing I learned during our conversation was that if it was inherited there is a 50 percent chance I will pass this on to my children. Scary.....I never EVER thought about this...I know I want kids, but would this prevent me from having any with my DNA? The short answer is NO. I believe in God before science. Plus, if I can do this, I'd have no problems teaching my kids to deal with it. Science is good, God is greater. He has a plan for each and every one of us from conception to infinity. If He want's me to have a child I will.

If you remember, in the previous blog about my "2nd Passenger Evaluation," I said that my only hope is to see if my doctor can give me tools to see red lights better in the daylight hours. I also stated that Dr. De Carlo's office had no appointment till June 18th. We touched on this subject and she graciously and sincerely apologized for the long wait to see her again. I told her it's no big deal, I've waited 30 years to do this, what's a few more months of waiting going to matter? haha So the waiting begins......again.....for the next exam and my last hope of continuing this dream. I pray it is not the end.

BY THE WAY:

If you want to learn more about what Cone Dystrophy is check out this link: Cone Dystrophy

2nd Passenger Evaluation: 04/24/09 I'm Crushed

My neighbor and friends have been working a lot with me this past week to prepare me for today. I still don't think I'm an ideal bioptic user, but I should pass. Today Jennifer was kind enough to arrange to pick me up form work with another one of her pupils. This Friday was a bright sunshine filled day. I hurried to get downstairs from work to meet Jennifer at the curb of my workplace. She called my cell and said one of the girls she was training had put her a little behind and someone was lost in her building. I told her no problem, I had no choice but to wait. :) After about 10 minutes she arrived. I had no idea what vehicle she was in. I forgot to ask. When she finally arrived she rolled down the window and said my name as I cautiously approached the van.

She was joking and called the van her new soccer mom mini van. Apparently, her employer had just given it to her to use for testing. Jenn introduced me to the teenage driver she was working with. Jennifer mostly talked and had a few cell phone distractions. It was obviously not a ideal day for her to do this test. She did ask me to spot a few things here and there. At one point we braked and she asked me if the car in front of us had blinking lights on or not. I had no clue, it was very bright and the bright light makes red light very hard to see. I can only see red perfectly at dusk or night. We tried a few other vehicles. No luck. With that, she was starting to get a negative tone with me about my driving prospects. I had mentioned moving to Oregon, and she said her sister lived there and I'd be a much better off there. That really did not make me happy, but she meant to be encouraging. I realized that, but this is NOT what I wanted to hear today! I was at my house before I could blink an eye. She apologized for not having enough time to test me more in depth today. I had to prompt her for information at the end of our trip. She told me what to work on and then gave me a little hope.

Jennifer explained that Dr. De Carlo has some options for users with problems seeing red lights. She mentioned some contacts and filters. She then told me that I should not contact her until I've seen Dr. De Carlo again for assistance correcting these problems. With that she was off, and I was left home alone on a early Friday afternoon to do nothing but ponder this unfortunate turn of events. I was CRUSHED!!! And the news gets worse from there. Monday I called the doctors office to setup this appointment Jennifer required. I was told by the secretary that it would be almost 2 months before I could see Dr. De Carlo again due to her extensive research and limited patient schedule! I took the next appointment: June 18th. This really sucks. I think it could be the end. Me going back to the doctor at Jennifer's request, sounds like a last straw effort. I'm in shock and frustrated beyond belief. I'm seeing red now...because I'm so mad, too bad I still can't see the red stop lights that well. I knew this may happen, I just don't want it to be over.