International Nystagmus Awareness Day (2019)

Nystagmus is a medical condition that many people haven’t heard of before. Nystagmus is an eye condition where the eyes move in a vertical, horizontal and sometimes circular pattern. There is no cure and it can impact someone’s life in many different ways.  I was born with Nystagmus. I am not alone. I have met many people who have Nystagmus.

Over the past year I have learned one very important lesson. Nystagmus can be challenging, but I can live a full life despite having it.

Some of the challenges I have had are bullying.  I can not drive. But I have learned there are other modes of public transportation that I can use to be successful. I use accessible technology to access the computer, printed materials, etc.

Nystagmus has made me more positive. It has given me the motivation to do well with my education. I received my regular rather than my special education diploma. I received it with honors too. In college I earned my degree in journalism. I feel passionate about helping parents, children and the general public better understand Nystagmus. That is why I decided to start my own business to help others learn about Nystagmus and how to live a full life despite this. I post information related to Nystagmus on my blog, Facebook page, and YouTube channel.

The public can also support the Nystagmus Network. This charity helps people with Nystagmus. They are also working with different networks to better improve the quality of life and we hope one day a cure.

 

Amanda Gene Tries UK Candy

“I need an Aero bar-I am craving English candy!” I posted to my Facebook page. Seeing my status my friend, Sara wrote me a private message saying she would have some goodies delivered.  I excitedly checked the mailbox every day, and one cold evening it finally came.  I ran into my house full of excitement!

The next day, I created a YouTube Video.

Like most YouTuber’s I decided to do a surprise dip; picking one item at a time. The first thing I pulled out was not candy, but a Nystagmus Network wristband. The details on the band really pop! It looks so pretty.

The second item was an Aero’s bar that was peppermint flavored. For me, personally I am very particular about how strong the flavor is when I eat this flavor of candy. I was so surprised how light and delicious the flavor was. I loved how light the bar was. The next two items were a light blue Nystagmus Network wristband and a white Nystagmus Network wristband. They are really pretty and I will be wearing them with joy. For those of you who do not know what the Nystagmus Network is it is an amazing charity that provides support, and research  for those who have Nystagmus ,an eye condition where the eyes move rapidly either vertically or horizontally or sometimes in a combination of the two, and their families.

The next candy I got was a Dairy Milk bar. I have heard about them on YouTube as well as hearing my friends talk about them.  The candy was sweet and it reminded me of the Hershey’s candy we have here in the states, however this bar was a lot sweeter. Which I loved.

After finding another awesome Nystagmus Network wristband. I got a Milky bar. I was surprised that I liked the white chocolate because I generally do not care for white. This candy bar was sweet and very easy to chew. I really liked it.

After pulling out another Nystagmus Network wristband I pulled out Werther’s Original Hard Candy. We have these in the states, and I like them. I am going to share these with my grandfather because this is one of his favorites.

After pulling out my last Nystagmus Network wristband I pulled out my last item. A Bumper Bag. This bag has a mixture of different candies. Since lemon is one of my favorites, I tried a piece of that. The texture reminded me of our Laffy Taffy candy. The piece I tried from the Bumper Bag was bursting with flavor.

Thank you again, Sara for my candy and wristbands.

Author’s note: none of the candy brands nor the Nystagmus Network has sponsored this blog post or my YouTube video. Please feel free to check out the awesome Nystagmus Network charity anyway! 😊

Nystagmus Awareness Day 2018: Nystagmus in the open

As I sat there in our living room with tears running down my cheeks, I asked my mom, when I was 15-years-old, “Why aren’t the doctors looking for a cure? I want to be able to drive.” My mom did not know the answer about any treatment plans.

Now at age 30, I still do not have my driver’s license, however I know that my future is a lot brighter. I have a bachelor’s of Arts degree and 53 continuing education certificates. I have different pieces of technology that help me achieve success every day.

However, many people still do not know what Nystagmus is. That’s why 20th of June is celebrated as Nystagmus Awareness Day. This year’s theme is: Nystagmus in the open. This year’s theme is to get the general public to become aware of the condition and to get more people who have it talking.

Nystagmus is an eye condition where the eyes move continuously in either in a vertical, horizontal, or circular pattern even though sometimes there can be any mix in the patterns. There are two main types of Nystagmus. The first one is called Congenital Nystagmus, or in recent years renamed Infantile Nystagmus (IN) or rarely Early Onset Nystagmus. People who have Congenital Nystagmus are born with the condition and sometimes there is no known cause as to why someone has it.

The second type of Nystagmus is called Acquired Nystagmus. This impacts people later in life and sometimes has a cause; such as impact of medicine, a head injury, or having vertigo. Both of these kinds of Nystagmus impact people’s vision, which can range from being legally blind to having low vision. It impacts people differently.

Right now, there is no cure for Nystagmus, however I know that the Nystagmus Network is working with scientists, medical doctors and other professionals to improve our quality of life, and hopefully one day have a cure.

The Nystagmus Network does more than research, they also provide peer-to-peer support, family support, and different treatments. However, this can not be done without the help of the public. Please consider  making a donation.

For more information about Nystagmus please visit: Nystagmus Network’s home page

To read more about how people with Nystagmus are amazing please consider subscribing to their newsletter, Focus.

 

 

Echo Dot and Orientation and Mobility (independent living skills series 2)

The nervousness has died down quite a bit since I’ve gotten over my first lesson.

Today I had assistive technology and Orientation and Mobility lessons. The first lesson of the day was an introduction of the Amazon Echo Dot. I learned how to address it, some basics of what the dot could do such as set reminders, multi-timers, to-do lists, read audio books and play music.

I was able to practice asking questions, setting lists and reminders. Another part of the lesson that was useful was a brief over view about the application that goes along with it. It really is a neat device, and I’m excited to learn more.

After a quick lunch, I had a short Orientation and Mobility lesson. We worked on crossing light-heavy traffic and upper protective protection technique. My teacher was happy that I knew the basics of upper and downward curbs, as well as some basic parallel traffic crossings. I am already gaining more confidence. I can’t wait for the next lesson.

 

The Disabled Bloggers Tag

This Tag was first created by Elin otherwise known as MyBlurredWorld.

Click here to read Elin’s The disabled blogger Tag post

1, When and Why did you start your blog?
I was a Freshmen in college, and we had to set up and keep a blog for the semester. I liked the class because we were able to choose the content of our blogs.
2. Did you intend to talk about your disability online from the beginning?
Yes, because my eye condition is so rare, many people haven’t heard of it.
3. Have you ever been skeptical about talking about your disability online?
No, I haven’t been skeptical about talking about it. I was hoping that this would actually help educate the public on the conditions I have.
4. What kind of response have you/do you receive in terms of your disability related blog posts?
For me its been positive, and a lot of people have came forth to say “Thank You,” because they have one of my conditions themselves and they stated they no longer feel alone.
5. Do you write/Talk about other topics apart from disability?
I’m trying out different topics, and I love learning about what other interests my audience have besides disability related topics.
6. What steps do you take to make your blog accessible to yourself as well as other people?
I love using WordPress, and for me, this has been the easiest platform for me to blog on. I try to make the blog accessible to others by reminding myself of the color scheme and the size and style of font that I use.
7. What is your favorite thing about blogging about your disability?
The fact that I can use this platform to help educate the public about the myths and true facts that surround disability.
8. What are your top three favorite disability related blog posts that you’ve ever published?
My three favorites would be:
1.Call to action: Come help make a big splash for a big impact!

2. Nystagmus Tag (Nystagmus Awareness Day)
3. Jessica and Diesel: the freedom continues
9. Do you think that the disabled blogger/YouTube Community is overlook?
Not really, I think there are a lot of other bloggers and YouTubers that are making a difference to help stop the stigma around disability. However, we still have a long way to go when it comes to continuing to making the facts more positive rather than negative facts known.

10. Do you find it difficult to think of new disability related content to publish?
Sometimes I do. However, I have a lot of great role models out there who are providing great ideas.
11. Do you think that blogging about your disability helps change people’s perceptions?
I think I am, and I’m proud to help shine some positive light on what people with disabilities can do.
12. Who do you Tag?
I would like to Tag the following bloggers to complete the tag:
Well Eye Never (Glen)
Life’s Journey (Jessica)

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