Nystagmus Tag (Nystagmus Awareness Day)

Hi Blog world,

 

Happy Nystagmus Awareness Day also known as Wobbly Wednesday. During the early hours of the morning, I came across Glen’s (Well Eye Never) Nystagmus tag. Click here to watch Glen’s Nystagmus Tag YouTube Video

Since I have Nystagmus myself I decided to do the tag.

  1. Are you the only one in your family to have Nystagmus?

I was the only one who has it by birth called (Congenital), however both my grandmothers have a form of Nystagmus called (Acquired).

2. How has your Nystagmus affected you throughout your life so far?

When I was little my mother noticed that I had problems seeing. She took me to see many eye doctors, who said I had Nystagmus, and that I should be fine doing mainstream schoolwork.  However, like most children with Nystagmus, I struggled with seeing my school books and the board. When it became evident that I was struggling in school my eye doctors said I needed to be registered as a student with a visual impairment.

My mother had to fight for many years to get me registered as a student with a visual impairment. In fifth grade I finally started to receive help from a low vision teacher and my school materials in large print.

Now as an adult, the only thing I can’t do is drive. I am currently looking for employment, however with the support I am receiving I should be able to find employment soon.

  1. What are you registered as – partially sighted, severely sight impaired, blind, etc?

All my medical documents state that I have low vision, however I prefer the term visually impaired.

Here in the United states we have the American’s with Disability Act which helps people with disabilities have access of reasonable accommodations to help with employment. I am receiving help through Division of Blind services and Vocational Rehabilitation. The main mission of these services is to help me find employment, and provide me with low vision devices or other services if I need them.

  1. Do you have any other eye conditions with your Nystagmus?

Yes, I do. I have Night blindness, sensitivity to light, lazy eye, and astigmatism. Click here to read more about my journey with Night Blindness

  1. Do you have any visual aids to help you with your condition?

Yes, I use a long white cane during the evenings, during nighttime, or when I am in a new environment. I have several magnifiers i.e. dome, or bar, I also use a screen reader called ZoomText, where I can change the color of the screen, and the tracker or pointer, this program also reads the text on the screen.

Another program I use is called Kurzweil 3000, which is a program when I can access regular print books; and I also use this program to write articles and other writing tasks. A feature I really like about this program is that I can change the color of the background so my eyes aren’t as tired.

One of my most favorite devices I use is my talking book player, with this I can access books through Bookshare.org or through my talking book library.

 

Lastly, I use the speech and Siri feature on my Iphone.

  1. Do you have any advice for parents of children with Nystagmus?

Yes, get them the help they need early. I struggled with school until I received my large print textbooks and that helped me a lot. Also, keep a positive attitude towards the condition. Finally, don’t forget there are support groups out there to help answer any worries or concerns you may have.

American Nystagmus Network Facebook Page

Nystagmus Network Facebook Page

The Nystagmus Family Foundation Facebook Page

7. Describe your vision in 3 words.

Blurry-I describe it as like looking through a piece of Saran Wrap.

Loss of quality of vision during the day-my vision is best during the morning after I get a goodnight’s sleep, then my quality of vision gets worse during the day.

Tired- different things such as change in the weather, or if I’m stressed or ill can make my eyes tired.

8. What help did you get in school/work?

During grades 5-6,  I received large print textbooks and worksheets. Then in sixth grade my family moved to Florida where my teacher of the visually impaired gave me low vision aids, magnifiers, telescopes etc, instead of my large print text to help me be prepared for college and the world of work.  In college, I received most of my books in digital form, which I either converted myself by using Kurzweil 3000 or the disability resource services. I received extra time on tests.

Since for now I am still looking for employment we are not sure which devices I may need, however I know that I will need ZoomText to access the computer.

I hope you enjoyed this tag.

Blog soon,

Amanda Gene

Call to action: Come help make a big splash for a big impact!

Hi Blog world,

 

Grab your swimsuit, goggles, and sun block and jump into a pool! Wednesday, November 1st, is Nystagmus Awareness Day This day is to help educate the public about the Nystagmus, about how it affects people, and what we can achieve with help from the community, medical professionals, and our peers from the online support groups.

 

For those of you that don’t know Nystagmus is a condition where a person’s eyes move continuously, sometimes they move in a vertical, horizontal, or in a circular pattern, and sometimes there can be a combined form of movements. A person can either be born with Nystagmus (called Congenital), or some people can be impacted later in life (called Acquired). Because of these movements our world is blurry, and for some people who have Acquired Nystagmus our world can appear to be moving.

 

There are many different causes of Nystagmus, some of us are born with it because it runs in our family through genetics, for others it’s a result of another condition that they have such as, Optic Nerve Hypoplasia, or Albinism, for some of us there is no known cause. For those that have Acquired Nystagmus sometimes people get it because of vertigo, a head injury or a brain tumor.

Whatever the cause I want the public to know that this condition doesn’t stop us from dreaming big! We hold all different kinds of jobs from journalists to teachers.  There are all different kinds of devices that can help us achieve our dreams, from screen readers to discounted bus passes.

However, we can’t achieve these dreams without help from the public:

–  Be understand that Nystagmus can affect us on a daily basis and there are ways that we can accommodate ourselves-for most of us our quality of vision changes throughout the day, please be patience when we are having a hard time seeing something.

-One of the myths about Nystagmus that I hear on a daily basis is that we can’t do things because of our vision –I would like to burst that myth right now. This myth is completely false! There is nothing we can’t do! except the majority of us can’t drive, and there are ways to get around it such as, carpooling, or taking the bus. There are many success stories on the online forms of children and adults achieving success on a daily basis.

–  Lastly, a big part of the Nystagmus Awareness Day is to raise funds. With these funds the medical community is working hard to improve the quality of life of people with Nystagmus and to help find a cure.

 

To learn more about Nystagmus, the Nystagmus Network charity or to make a donation:  http://nystagmusnetwork.org/

 

To learn more about Nystagmus, the American Nystagmus Network, or to make a donation: http://nystagmus.org/new/

 

If you can’t make it to the pool to make a splash then consider ordering one or both of these wristbands:

 

Click here to order wrist bands from the Nystagmus Family Foundation

Click here to order wrist bands from the American Nystagmus Network

 

Thank you for helping the Nystagmus Network, American Nystagmus Network and the Nystagmus community make a big splash on this very special day!

Blog soon,

Amanda Gene

 

 

 

 

#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 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