#How I See (RNIB’s Campaign)

Hi Blog world,

Last week, on one of the Nystagmus Support groups that I am a member of,  posted YouTube’s Glen’s (Well_eye_never) #How I see campaign YouTube video. This campaign is ran through RNIB.  I really liked Glen’s video and the campaign, and once I saw more people tweeting their #How I See campaign on Twitter, I thought it was time to join in.

When people look at me they don’t realize that I have a visual impairment from Nystagmus. Once people find out that I am visually impaired I explain to them that my vision is like looking through a clear piece of Saran Wrap. For me my vision is best during the morning, and as the day goes on, and the more tired my eyes get the blurrier my vision becomes.

I also have night blindness which makes getting around in low light, during dusk or during the night more difficult. I use a cane when I need it, and it makes getting around easier.

Even though I have these vision problems that doesn’t mean I have to stop doing everyday tasks. I have low vision aids such as a dome magnifier to help me access small print.  I have a talking book player and access to talking books from my local library, as well as, Bookshare.org so I can enjoy audio books of all different  Genres.

As far as, using the computer I use a screen reader called, ZoomText. I like this program because it can speak what’s on the screen to me, and I can also change the color of the screen to make things easier to read. It has different ways of tracking the mouse pointer too, which helps me when my eyes are tired.  I have a speech to text reading and writing program called Kurzweil 3000-this program allows me to read books, and write and edit documents such as my blog. 🙂 It has many different features that makes using the program easy to use-such as, changing the background color, the tracker, and changing the speed at which text is read to me.

All in all, I can say the most important thing I use on a daily basis is my Apple Iphone. I can now text with ease because of the built-in microphone and voice reader. I can also use the magnifier instead of using my dome magnifier.

Lastly, the most important tool I have is great and supportive family and friends, no matter if its face to face or online, they remind me that I am a stronger person despite my disability, and to keep positive no matter what I face as a person with a visual impairment.

To learn more about RNIB  and their #How I See campaign visit their website at: http://www.rnib.org.uk/

To see Glen’s #How I see Campaign video visit his blog at: How I See (RNIB #HowISee Campaign)

Please note, none of these websites have sponsored my post, but please feel free to check out their links.

If you haven’t done so please follow my blog,

blog soon,

Amanda Gene

 

 

 

 

 

 

A Day of Hope: Nystagmus Awareness Day

Hi Blog world,

As the title says, today, November 2, is Nystagmus Awareness Day, also known as “Wobbly Wednesday” to my British Friends,  it is a day of hope for me.

Nystagmus, for those of you who don’t know, is an eye condition where my eyes move back and forth. There is no cure for this condition, and its often misunderstood by the general public.

For people from our Nystagmus community we use this day as a fundraiser; these funds are used to help find a cure and the causes of the different kinds of Nystagmus (Congenital and Acquired) .  Not only do we use this day to help raise funds for the medical community; The Nystagmus community provides support for parents of children who have this condition, support for family members who may know someone in their family who is affected by Nystagmus, and peer-to-peer support for people who live with the condition.

For many parents whose babies are just diagnosed with the condition, they are concerned and want what’s best for their child; they often worry about their child’s future; for those of us who lived with the condition since birth,  we can offer tips and advice to help the child have the best possible future.

As for the people who have Nystagmus they offer peer-to-peer mentoring, which offers advice for things that may be a struggle, such as, not being able to drive, how to disclose their Nystagmus during a job interview and  other topics, with the peer-to-peer mentoring and the right support from teachers, parents, friends, family, and the medical community people with Nystagmus can have a full and active life.

For more information about Nystagmus and what you can do to support the community or  a loved one affected by this condition please visit:

http://nystagmus.org/new/

https://www.facebook.com/groups/65729508331/

Thank you for your support on the very special day.

Blog soon,

Amanda Gene

 

 

My second job fair: a personal story

Hi Blog world,

Have you ever had a craving for a certain food? Well, I’ve had a craving for a fish sandwich for the past week, and that’s what I had, from McDonald’s, after my second job fair.

This time, the job fair was much more crowded than the first job fair I went too.

Because of my eye condition, Nystagmus, crowds feel so overwhelming to me. So I ended up taking my time with getting around to the different employers that were there.

I feel like this job fair was a little bit more successful than the first, because I was able to fill out an application for a local law firm. The job I applied for was not a writing job, however, I would be able to use my skills from a previous job I had.

I gave my resume to a handful of other employees too. I know from my past experience that I will not get a call back because my skills didn’t match with what they where looking for. But at least, I got my name out there.      

I feel like this journey, has been a long one. Two years to be exact, however, the main theme of my current journey is the same. Keep trying, and don’t give up.

Blog soon,

Amanda Gene

My internship with She’s Social: Week 5:Learning and growing even with setbacks

Hi Blog world,

Well, this week as an intern sure has been a wet one! In the Panhandle, of Florida, it sure does rain a lot, and that’s what it has done for most of this week. Because of that, my internet went down most of the day on Tuesday, and I had to re adjust my schedule to get my hours in.

This week was an exciting week of learning for me-I learned a more simplified way to save files into PDF’s. I sure wish I would’ve known this trick in college because it makes saving things a lot easier.

My favorite part of this week, was working with my co-worker, Sara, to pre-record my Nystagmus segment. You guys will be able to hear my segment on Real Women Radio when it comes out in November! I’m excited to tell my community about Nystagmus and what you guys can do to support this amazing group of people who are fighting to beat Nystagmus on a daily basis.

Blog Soon,

Amanda Gene

Wobbly Wednesday Q and A follow up

Hi Blog world,

On Wednesday, November 4th, I told you guys that I would have a “Wobbly Wednesday” Q and A session.

Since I didn’t get a very large response, I wanted to take this time to explain more about what “Wobbly Wednesday” is; and to explain what Nystagmus is.

First, “Wobbly Wednesday” is an annual day in November (November 4th) to help educate, advocate and share success stories with the public.  The people who have Nystagmus can share and help educate the public in many different ways; this can be done from just answering a few basic questions from a common person. To doing something more wide spread-such as holding a Q and A (Like me 🙂 )

Many people, in the public, have either not heard of Nystagmus, or if they have, they are not sure how to explain it.  So here’s a way to explain what Nystagmus is.  According to the American Nystagmus Network, Nystagmus is an eye condition that affects people. It can come in many different forms of eye movements. This includes up and down, side to side or in a circulatory pattern.

Even though Nystagmus does not have a cure, with support from people in the community, including medical professionals, and with the use of low vision aids including glasses or contacts people with Nystagmus can live full lives.

I have had Nystagmus since I was born. I use low vision aids including a screen reader to use the computer. However, this condition has not stopped me from getting a regular high school diploma, and a college degree in journalism. It just goes to show you that with love and support from the people around you, anyone can overcome challenges that they may have.

If  you have any more questions, feel free to ask me in the comments below.

Blog soon,

Amanda Gene

Wobbly Wednesday Follow up….

Hi Blog world,

Yesterday, November 5, was Wobbly Wednesday and in honor of that day I was going to blog a Q and A session. So here’s three common question I get from people…..

1. What is your vision like? It’s kinda hard to explain so I use this analogy, It’s like looking through a piece of Saran wrap. It’s blurry, and as the day goes on I lose the “Good” vision I have.

2. Can you see color? Yes, I can. But some colors are harder to see than others. The colors I struggle with the most are yellow and green, particularly if they are on a white back ground; this made going to school difficult for me because I had to remind my teachers to not to use those colors and to use something darker, like black, so I could see what they were writing.

3. You don’t look visually impaired.. So how can you be? This is the question that hurts me the most. Even though I don’t look like I’m visually impaired, the fact is, I do have an eye condition that makes it hard to see and the result is I do have a visual impairment that makes some daily task difficult to do, and the fact that I’m not going to be able to drive.

If you have any additional questions or comments feel free to leave them down below….

Blog soon,

Amanda Gene

Wobbly Wednesday: Ask me a question….

Hi Blog World,

Today is Wobbly Wednesday.  For this day, I’m doing a Q and A session about my life with Nystagmus, but I can’t do it without questions….So go ahead don’t be shy, and ask me any questions that you may have about this condition and how it can affect my daily life. Ask your questions either down in the comment section below, on Twitter, or on Facebook.

To ask your question on Twitter you can find me at: @AmandaGeneN

To post your question on Facebook you can find me at:https://www.facebook.com/AmandaGenesBlog/#

I’m eager to answer your questions, so don’t be shy and ask away!

Blog  soon,

Amanda Gene