Tag Archive for: vision loss

, ,

Living With Wolfram Syndrome – Lauren Gibilisco

When I was 13 I saw a low vision specialist. He was trying different devices on me to get my vision a little better. Then he told me “you will never ever drive.” Well that about told me what my future was going to be like.

Me and my wonderful Mom.

Me and my wonderful Mom.

But I was going to prove the doctor wrong. My mom took me to a very large, empty parking lot. There I was able to satisfy my need for speed. I would go very fast and then slam on the brakes so the car would spin around. Then my mom would take me out into the country and I would drive fast on the gravel roads. One day she said “Lauren look out for that ditch,” and I said, “What ditch?” I was heading straight for it. My mom said that was enough. No more driving on the country roads or parking lots. My dad asked my mom if I would be a good driver if I could see. My mom said “No. The way she likes to drive fast she would get a whole lot of speeding tickets.” After our driving attempts I think that was when my mom started coloring her hair. Riding with me turned her hair gray.

This week on TV I saw something that may change my life. They are coming closer to having cars that drive themselves. I knew there were already cars out there that could parallel park. Could you imagine me trying to park between two cars? Well now they actually have cars that drive themselves. You just tell it where to go and it will drive you right there. They say it will be a lot safer driving than some of the people on the roads today. This would solve my problems. Right now I am reliant on my mom to drive me everywhere. She takes me shopping, out to eat or go to our many doctor appointments. Now I would be able to just jump in the car and say “take me there.” How cool would that be?

So technology has come a long way. They have come up with things that can really help people like me. They have talking watches, talking alarm clocks, talking scales, talking meters and many more. So there are great possibilities out there in technology that will make our life easier.

The only downfall I can see right now to getting a car that drives itself, is that I would probably visit the ice cream store a whole lot more.

/by
, ,

Living With Wolfram Syndrome – Lauren Gibilisco

A couple of weeks ago I was asked if one thing could be healed on me, what would it be? I thought about it for a while and decided it would be my hearing. I asked my mom what she thought and she answered blindness of course. She couldn’t believe I said my hearing.

Photo of Lauren Gibilisco

Lauren Gibilisco

My hearing went before my blindness. But with the hearing I was able to get hearing aids that definitely helped me hear. Life went on and I slowly lost my vision. It wasn’t something that went at once so I was able to adapt. My cane instructor worked with me to listen for sounds in order to cross streets and even know where I was. So vision was directly affected by hearing.

Last week, my one hearing aid quit working and the other one had the ear mold fall off. This happened both at the same time. Suddenly I almost couldn’t hear anything. My mom called up our hearing doctor and asked if we could drop off my hearing aid that day and have them glue it back together. We had a hearing appointment scheduled for the next week but I couldn’t wait that long. It was right before Easter when all our relatives were coming to our house. They of course said they would be happy to do it for me. This is out of town for us, so my mom and me went out to lunch and then did some shopping to waste time until they called to say it was fixed.

Now just think about it. Here I was, not able to see anything, and now couldn’t hardly hear anything. My mom had to yell in my ear for me to hear. All of the sudden my vision became much worse because I did not have my hearing to help guide me. The dark became darker.

The following week I went to my hearing appointment. My hearing had been getting really bad and my mom made the appointment because she was tired of having to scream all the time. The good news is that the doctor said my hearing had decreased but not that much. It was my hearing aids that were shot. I needed a new pair. He also was telling us about the improvements in hearing aids since I had my other pair. He said they made them moisture proof so when I sweat in the summer it won’t affect them. He said I would be able to hear much better for the advancements but would still have difficulty understanding what was being said. It’s like I can’t tell if you said “pink or sink”. This makes me take time to understand what you are saying because here I am thinking you are talking about something being pink and you instead are talking about the sink. This takes the brain a little longer to catch up.

Now even though he said the understanding would still be a problem, there would be an improvement. I was happy to hear this. I talk with kids all over the world and understanding their accents is sometimes very difficult. I hope this will help me so I will be better able to connect with the world.

Now my mother understood why I would want my hearing fixed soon. I can get around pretty good with my cane and with my hearing I can do almost anything. After thinking it all through my mom had thought without being able to hear and see I would only have a few options. Would a cochlear implant help me or would we have to start learning sign language in the hand like Helen Keller did. My mom admitted it was more stressful to always having to repeat things than picking up something I bumped into and broke. Life is always amusing.

/by
, ,

Living With Wolfram Syndrome – Adam Zwan

Eye see you…no I don’t! Vision Loss and Wolfram Syndrome

Photo of Adam ZwanOne of the many struggles a Wolfram Syndrome patient will experience, is vision loss. As a young man going through grade school, I noticed my vision quickly getting worse. In a classroom amongst individuals my age, I stood out from the crowd by always sitting in the front row, squinting to see the chalkboard, and having to get close and personal with any reading material. Before being diagnosed with Wolfram Syndrome, doctors were unable to properly treat and diagnosed my visual difficulty.

After grade school, I made it to college where I learned that there are avenues of help; large font textbooks, note takers, and CCTVs for magnifying materials at home. I was grateful for all the help provided by Vocational Rehab and disability resources at school. However, a few months after graduation, my vision continued to deteriorate and resulted in me having to hang up my car keys. I have been told that a driver assist technology is under way and will be marketed in a few years. Let’s hope.

At age 27 I feel a little amputated because I cannot transport myself independently to work, the grocery store, social events, or doctor appointments. Although visual struggles are a part of my life, I know things could be worse. I just tell myself that vision loss is nothing to be ashamed of; it’s just not something worth bragging about on the first date.

/by

Living With Wolfram Syndrome – Lauren Gibilisco

Happy Birthday to Me!

10647102_10205319102845944_4536639020705171881_nIt’s been an exciting week for me. On Sunday my mom and I went to the grocery store. After we were checked out my mom remembered she needed one more thing. She gave the keys to the sacker and told her to take the groceries out and get Lauren into the car. She also told her where her car was and what color. The sacker led me around to the front seat of the car and I got in. When I was in the car I thought the door seemed a little different. I felt the door handle and thought it felt different. So I got out of the car and when I did two people who were friends of mine were walking past and stopped to say hi. I said to her what color is this car? She replied it was black. I asked her if it was a SUV and she said it was a station wagon. The sacker was just standing there waiting to put the groceries in the car. My friend said I think that one is your car. She checked the key with the lock and it was. And they call me the BLIND one.

I also was able to skype with one of our new members from Italy. It was Frederica. My mom and I talked to her and her parents but they didn’t understand English. I was luckily able to hear her well. I have trouble hearing people with accents. But she spoke good English and we were able to share information with her. I am looking forward to scheduling another Skype visit with her soon.

My mom had to go out of town last week to care for my sister after her surgery. My mom does all my pills so I had her fill them up for the entire week in case she couldn’t get home. She was in a hurry but took the time to do it. The next day I felt my pill organizer. We have a locator dot or bump put on the side of the organizer that symbolizes my morning pills. I took my pills out for the morning and discovered that there were a lot of them. I started to count how many there were and realized they were the evening pills. So I felt the night pills and confirmed that they were the morning pills. Again I ask you “who’s blind here?”

Sunday was my 28th birthday. I ended up having more than 60 people wish me happy birthday. That made my day much more enjoyable that I received so many wishes from my friends. Every year on my birthday I celebrate that I have made it through another year of fighting Wolfram Syndrome. It’s another year that I am here and I cherish every minute.

/by