How 2017 has been…October

Hi Blog world,

I know, this blog post is really late as it’s almost the end of November…Things have been happening here on my blog. Check out these links:

#How I See (RNIB’s Campaign)

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

The month of October went by really quickly. I went shopping with a friend, and  It was a lot of fun.

I also got my hair cut; it felt good to get my hair styled. Come follow me on Instagram

I’ve also had a fun time during Halloween; to read about my past Halloween experiences check out this link:  Blast from the past…Halloween

Blog soon,

Amanda Gene

 

 

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#Self Care Tips-SANE

Hi Blog world,

While I was scrolling through Twitter last week, I came across, SANE, (charitySANE) on Twitter, who wanted their readers to blog about their own Self-care tips. I liked the idea, so here are my top three self-care tips I use.

First, I am actually doing it right now while I’m writing this blog post, enjoying aroma therapy through my diffuser; I am currently enjoying a mix of lavender and fresh linen scent.

Secondly, I enjoy a cup of hot tea in the evenings before bedtime. I usually enjoy any herbal tea. Do you guys enjoy tea? If so, which ones? Tell me in the comments bellow because I’m looking for suggestions.

Thirdly, enjoying a good book helps me relax. I enjoy reading books for a book club I’m apart of. Right now, my book club member and I are reading a book called, “Lost & Found” by Jacqueline Sheehan. It’s a good book; and I’m enjoying it.

If you want to learn more about SANE, you can visit their website: Link to SANE website

Link to SANE Twitter page

This blog has not been sponsored; I just liked their writing prompt.

Blog soon,

Amanda Gene

 

A weekend full of shopping

Hi Blog world,

 

This weekend has been a lot of fun for me. I went shopping with a friend. We went to Walmart first. I got some groceries-I got strawberry banana juice, some chocolate rice cookies, and some peach tea.

I got five pairs of earbuds. Yes, you read that right, five pairs.  I go through them quite quickly. They were cheap at a dollar each.

I got me an early Christmas gift. For the longest time I wanted an aroma therapy diffuser; what I love about my diffuser is It can change colors, or I can have it just on one solid color. It really makes my room feel comfortable in the evenings as I enjoy my tea and cookies. Along with my diffuser, I got some fresh laundry essential oil scent. At home, I already had a bottle of lavender, with these two scents I am able to combined them into one fresh scent.

After we left the store, we went to my favorite Mexican restaurant. I had pork tacos, black beans and Spanish rice. The tacos were delicious. My bill only came out to eleven dollars and some change. I don’t mind paying that price for the quality of food. My friend had the taco soup and she said she enjoyed it.

The last stop we made, was Dollar General. I bought some peanut M &M’s, envelopes, and a planner for next year. I love my planner; and I can’t wait to start setting goals for next year.

What did you guys do this weekend? I can’t wait to read your comments.

 

If you haven’t done so, please subscribe to my blog and share it with your friends.

Blog soon,

Amanda Gene

 

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

Blast from the past…Halloween

Hi Blog world,

 

As I sat here thinking of Halloweens past, I thought about how much fun I had as a child.  I had fun dressing up as Underdog, Casper the friendly ghost and a puppy.

Growing up, I would trick or treat around my grandparents’ neighborhood, and my mother and I visited local restaurants where I could get a free meal, candy or a toy.

One of my most memorable Halloween’s was when I was about 13 years of age and I dressed up as a ninja. My parents were working at a nursing home at the time, and there was a carnival going on. I remember playing musical  chairs and the dart board toss. I had a great time; I remember receiving a lot of compliments for my costume.

Another great memory that I have was after I found out I had a visual impairment. During that season, I gave myself the nickname “blind as a bat girl”. During dress up day for school, I dressed in a cape and I wore ears. My teachers were pleased that I was able to make some light-hearted fun about my disability and that I was adjusting well to my diagnosis.

Once I even dressed Noodles up as a vampire. Everyone thought that her costume was cute. She was a good sport about wearing it.

 

When I got older, I stopped dressing up and began helping pass out candy to our local trick or treaters. That was fun and it was nice seeing all the children dressed up in different costumes.

How do you celebrate Halloween? Do you go to trunk or treats or walk the neighborhoods? What is your favorite costume from past Halloweens? What is your favorite kind of candy? Tell me in the comments below. I’m excited to read everyone’s responses.

With that, I hope all of you enjoy tonight’s festivities.  Stay safe and remember to wear things that help you stay visible. Happy Halloween!

 

Blog soon,

Amanda Gene

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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