Tag: Nystagmus

Happy Nystagmus Awareness Day!

Nystagmus Awareness Day (2020)

Today is Nystagmus Awareness Day! Nystagmus is the eye condition that I was born with. If you have not heard of the condition know that it is a rare condition that affects, according to Nystagmus Network “1 in 1000 people have Nystagmus.”  Nystagmus is an eye condition where the eye constantly moves. This pattern can be in an a vertical, Horizontal, or circular fashion.  For me, I have circular Nystagmus.  According to the Nystagmus Network, there are two main types of Nystagmus. The first one is called Infantile Nystagmus or congenital. This is the type of Nystagmus I have. That means a person is born with it. The second type is called Acquired Nystagmus. This can affect people later in life and can have different causes or sometimes no known cause at all. Nystagmus can effect’s everyone’s life differently. It all depends on the type of Nystagmus and the severity of it.

As a young girl I had to use large print books to be able to read my schoolwork. I had a teacher of the visually impaired come in a few times a week to provide one on one support. As I got older, I found out I would never be able to drive. My large print books have been replaced by assistive technology. As a young teenager the adults around me did not know what the future had in store for me. I felt sad and I thought I had a bleak future. I thought that I was the only one who had Nystagmus. I had not met anyone else who had the condition. I had so many questions about my future. I had low confidence.  I also had a lack of peace because I did not know that there was support out there.

In 2011, I was searching through Facebook and I found the Nystagmus Network. I found out that I was not the only one who had this condition and I was not the only one who felt overwhelmed. I began to ask questions about how I could better live with Nystagmus. Now I have lots of friends, from all over the world, and I have a place where I can ask for advice and support.

I have hope too. I know that the Nystagmus Network and other medical professionals are working on finding better treatment and hopefully a cure one day.

Because of the support I have received I no longer feel like Nystagmus is a roadblock in my life. I feel at peace with the fact that I have this condition. I have learned that everyone who has Nystagmus has talents and that even though you may need to modify your career goal you can live out an amazing life. I am now working on building my career as a freelance journalist and an advocate for those who have Nystagmus.

The support I can get daily cannot be given without the help from the public.

Be sure to visit the Nystagmus Network’s site to learn more about Nystagmus and donate today.

Also, be sure to share this post to help spread awareness on this International and National Nystagmus Awareness Day. 😊

Please note: This post was not sponsored in anyway. I just love the Charity Nystagmus Network. 🙂

 

My top five suggested school supplies for Visually Impaired Students

Across the world many students are returning to the classroom. For some parents this may be the first time their child who has a visual impairment may be getting a formal education. I have seen on many support groups that you want to help your child be as successful as possible.

To help with this here are my top five suggested school supplies to help your child achieve success.

  1. Bold lined paper. I know that paper in general is a required supply, however I found that growing up the regular notebook paper had lines that looked faded and it was hard for me to keep track of where I was writing. When I was little my teacher of the visually impaired introduced me to wide lined bold lined paper. They come in notebooks and college ruled length too!

This helped me a lot as I did not lose my place as I wrote. The only draw back that I found was that bold lined paper is meant to be used with a 20/20 pen, and it easily got onto my hands as I wrote. As I entered middle and high school, I found that using this paper did cause some bullying. That year I was lucky to find the five-star dark blue paper. I love this paper. The lines are dark enough to be seen, and you can use a regular pen or pencil.

  1. Erasable Pens. To help me see my work better I found that using erasable pens were very helpful. They come in either black or blue. When I was in high school, I found that I preferred the blue pens. The only complaint that I had with this tool is how the ink got all over my hands. This happened because of the way I held my pen. Remember guys, I have mild cerebral palsy. Just because this happened to me doesn’t mean it will happen to everyone.
  2. A mesh multi pocket pencil pouch. I am not talking about the clear plastic ones. I found that those made finding items hard to find. I am talking about a mesh multi pocket pencil pouch. These pencil pouches made it where I could separate all my pens, and made it where they were easy to find. Some pouches even come with holders at the top. I used to put my pens in there for a quick grab.
  3. A non-electric low vision device. In this day many students have Iphones, and Ipads to see their work, but what is a student to do if they fail? Use their non electric low vision device. When I was growing up, I used my dome magnifier quite often. I suggest that a student keep a device such as a dome magnifier handy just in case.
  4. Finally, eye glass wipes. Growing up I found that my glasses used to get dirty quite often, so I would have to ask for a pass to go to the bathroom just so I could clean my glasses. Some teachers may only offer a number of bathroom passes during the term, and a smart student would want to use them for what they are used for. (Kids, don’t use this excuse to get out of class, stay in there and learn. 😊 ) So, to help with this problem I suggest that you buy a package of pre moistened wipes that students can keep in their pencil pouches. That way a student can clean their glasses when needed.

 

I hope that you find these suggestions useful. I know that this is a short list. Is there something I missed? What would you add to this list? Tell me in the comments below.

 

Remember parents try not to worry. Your kids are going to be superstars! Happy School year everyone!

 

Disclaimer: Please note, these suggestions are based on my own personal experiences and will only help students who have some vision. These tips will not work for blind students.

 

The Glasses Tag

I saw this tag on the internet, and since I have to wear my glasses due to my visual impairment, I thought this would be fun to answer this tag!

1. How long have you been wearing glasses? I been wearing glasses since the age of two.
2. What were your first pair of glasses like? I think I still have them in my messy closet, but they were a pair of mickey mouse glasses with light purple arms. My mother said once I got used to them, I didn’t want to stop wearing them. I even fell asleep with them on.

3. How often do you wear your glasses? I have to wear them daily.
4. How many pairs of glasses do you have? I have two pairs. The pair that is my current prescription and another pair that has my old prescription which isn’t very helpful at all.
5. Where did you get your glasses? I got them at my local eye doctor through a grant from Division of Blind Services.
6. Long sighted or short sighted? I’m both. I struggle with seeing things at a distance than up close. This is one of the reasons why I can’t drive.
7. What prescription are your glasses? According to my eye doctor report I can see Right eye Distance: 20/100 Both together 20/50, Let eye distance: 20/250 with both together 20/800 and Distance together 20/50+ Near is 20/30. Basically, all those numbers mean is I have low vision.
8. Do your family members wear glasses? Yes, my dad wears glasses, my grandpa wears glasses and both my grandmothers wear glasses.
9. What do you think about wearing glasses? It helps me see better than when I don’t have them on.
10. Do you wear contact lenses? No. I wish I could though.

Do you wear glasses? Tell me in the comments below.

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.