My Top Ten Questions for the Nystagmus Network Team

I am in several sight loss and Nystagmus support groups. One of those groups, called the Nystagmus Network helps support people who have Nystagmus and they also fund research. Each week they get people in the group talking by bringing up a topic related to the condition. Today I’m turning the tables! Here are my top ten questions for the Nystagmus scientists and Trustee’s.

  1. Which is better cake or a biscuit?
  2. Which is better coffee or tea?
  3. Have you ever thought about finding out if Non-24 is linked to Nystagmus? I see so many posts about people having a hard time sleeping. I’m one of those people!
  4. Which season is your favorite?
  5. What does it take to become a medical scientist to study Nystagmus? I mean besides those really awesome white coats. 😊
  6. If you had 1,000 pounds/dollars what would you do with it?
  7. Which is better coke or Pepsi?
  8. What is one piece of advice you would give to new parents whose child has Nystagmus?
  9. Which animal is better dog or cat?
  10. When do you have the most energy: Day or night?

 

If you like this blog post and want to see another post like this or have a vision related topic you would like me to cover please email me at: Amanda@amandagene.com

Disclaimer: This post is not sponsored in anyway.

 

Interview with DJ Hey (Guest Post #21)

Hi everyone, today’s guest post is from DJ Hey. I met her on Twitter. Be sure to check her social media accounts.

  1. What is your name (or blog/channel name)? My name is Heather Nyblade, and I’m 31 years-old.
  2. Who has inspired you the most in life? My family and friends have inspired and continue to motivate me to follow my dream and live the life I deserve to live.
  3. Who has inspired you for your blog or YouTube channel? My vision teacher I had in high school, Martha Castigilla, inspired me to start my YouTube channel and suggested making a video about how people should and shouldn’t treat the blind.
  4. Besides writing or making YouTube videos what do you like to do in your spare time? I love doing my trance music mix called “High Energy Tunes,” which can be heard once a month on laut.fm/liftedtrancemusicradio and my official SoundCloud page. I also love performing at clubs and venues, since my goal is to travel the world by performing at the big-name events.
  5. Name your best quality? My best qualities are what the trance music community is all about, which is peace, love, unity, and respect (PLUR.)
  6. If you could interview anyone living or dead who would it be and why? It’d be my favorite DJ, Ferry Corsten, from the Netherlands. Because he  he inspired me to pursue my own career as a DJ, specifically at the same events he and other trance artists perform at. Such as Tomorrowland in Belgium, Electric Daisy Carnival (EDC) in Las Vegas, Dreamstate in Southern California, and Luminosity in the Netherlands. After meeting him in 2013 and enjoying his set at the Intervention Pool Party, I was instantly hooked.
  7. What is your college major/minor? I have a high school diploma.
  8. Why did you choose the title of your blog or YouTube Channel? The title of my YouTube channel is DJHeyOfficial because DJ Hey is my DJ name, and the official part is to let people know this is my real YouTube channel.
  9. Where do you see yourself in five years? I want to see myself performing at trance music events all over California and out of state before getting booked over in Europe.
  10. What is the name/cause of your visual impairment (or other disabilities that you may have)? I was born three months prematurely and was diagnosed with retinopathy of prematurity )ROP), which is what caused me to be totally blind.
  11.  How does your visual impairment (or other disabilities that you may have) effect you on a daily basis? I don’t look at my blindness in a negative way, mainly because of what I mentioned earlier about coming from a loving family.
  12. What do other people feel about your visual impairment (or other disability that you may have)? I’ve had situations where people have given me the “Oh, I feel so sorry for you because you’re blind” comment or would automatically assume it must be really hard for me to do something, just because I can’t see. But everyone I’ve met through my shows and social media have been really impressed with what I can do. This is why I’m extremely thankful for them being there to love, support, and appreciate me for who I am. Because the trance community has been all about being there for each other as a family.
  13. If you had to give one piece of advice to others about having a visual impairment (or other disability that you may have What would that be? Don’t  let it stop them from doing what they love or living the life they want to live.

14. Where can other people find you on social media? (Please list and provide the links.)

For anyone who’d like to check out my socials and follow me, they can be found at linktr.ee/DJHeyOfficial.
DJ Hey
Photo of DJ Hey. Photo credit goes to DJ Hey.

 

 

A follower Asked….

A Facebook friend and follower who has Nystagmus, asked me to offer some tips on how to manage Nystagmus while you are sick.

As always, I advise this friend and all my followers that If you are having any kind of medical or mental problems, please seek proper medical care.

Even though I am not a medical professional, and I am not offering any medical advice, I want to offer five tips that has helped me feel better when I have been sick. I hope that these tips answer this follower’s question.

  1. Admit that you are sick and that you need to rest.

We all lead busy lives and sometimes we just carry on with what we are doing. When you have a sever sickness, you need to admit that you are sick stay home. I had to convince myself of this during my high school days. I used to go into school just to take one test then go to the office to go and get checked out. This did not help me or school community.

  1. Drink plenty of fluids.

When I was a young child, I loved chicken broth and Sprite. This helped me with any sore throat that I may of had.

  1. Get some sleep! Sleep is so important with your health. Not only is it important when you’re sick, but also when you are well. When I am sick, I can feel my Nystagmus go even faster. My eyes hurt a lot more than normal. Therefore, when we take an extra nap, it really reduces our eye movements and sooth our achy eyes.
  2. Go to the doctor when needed.

This was an important lesson I had to learn as a teenager. When I was seventeen, I had a kidney infection. For one month before my diagnosis, I kept saying to myself, “You’re not sick, you just threw your back out during P.E.” That was a big lie. The pain made me cry and sent me to the Emergency Room. As a result, I received two bags of fluids to decrease my heartrate and blood pressure. I had to stay overnight. If I had gone to my general practitioner earlier I would not have had to go through all that.

  1. Don’t let stress make your immune system weak after you have made a full recovery.

People with Nystagmus know stress can increase their eye movements.  I missed three days school due to my kidney infection. As a result, I fell behind with my school work. This stressed me out! My stress increased even further when I learned that school policy only allowed me three days to get back on track with my work. I should have paced myself. I felt rushed because of this deadline, and increased my anxiety and stress levels which made me feel weaker after my recovery.

I am sure that there are many more tips that I could have offered. If you can think of something, that you would like to add tell me in the comments below.

Disclaimer: If you are experiencing any problems with your physical or mental health please seek proper medical care.

If you have a question you would like to ask me feel free to email me at: amanda@amandagene.com

Interview with Northwick the bear who has Nystagmus (Guest Blog Post #16)

Hi Northwick,

My name is Amanda. I live in The United States in a state called Florida. I like you and your friend, Frank, who you live with, I also have wobbly eyes due to Nystagmus.

For those of you who have not heard of Northwick, he is a friendly bear who lives with a family and a boy named Frank, and together they navigate the world with Nystagmus. The author who writes these stories is named John Sanders.
Thank you so much for taking the time to be interviewed by me.

1. Tell me a little bit about yourself? – Well, first of all, thank you for inviting me to appear on your blog. As you say, I’m a bear who has Nystagmus which is something a lot of people may not have heard of. Basically, Nystagmus means my eyes flicker from side to side so I don’t see very well and glasses don’t fix it. As well as not being able to see very far, I need more time to see, how much I can see changes throughout the day, sometimes everything around me looks like it’s moving and I have to turn my head to look straight ahead. My flickering eyes use up a lot of energy, so I have a big appetite. That’s what I think anyway.
2. What is the hardest thing for you and Frank to see? (For me, it was hard seeing balls in games like soccer, and being able to see my school books and worksheets) – Yes, like you say Amanda! Things that move fast like balls in games, Frank’s friends running around and it’s really annoying when people say, “look at that bird up there!” Usually I can’t see birds or planes. …
3. What is your favorite thing to see? – Grass and trees and flowers and the sea and mountains and parks. I may not see these things in as much detail as people with ordinary eyes, but I like being in the countryside and drinking in the thousand shades of green, the smells of sea and rain and plants, the sound of burbling streams, the feel of leaves and rocks and wood and water.
4. What is your favorite kind of snack to eat? – Easy question. Cakes! Especially chocolate cakes.
5. How is Frank? – Like me, Frank has ups and downs, often because of Nystagmus. But we’re both happier now that we can talk to each about seeing the world differently from most other people.
6. What is your favorite subject in school? – French. Some people say learning another language is hard. But I think they’re wrong. I listen carefully and you don’t always have to read, so that makes it easier for me than subjects like sums or geography. J’aime bien parler français!
7. Do you ever feel sad about Nystagmus? – Oh yes. Before I met Frank I thought I was the only Bear / Person in the world with Nystagmus. Now I know I’m not alone and that helps a lot. We talk a lot about what we see or don’t see and that helps both Frank and me.
8. How does Amy the Orthoptist, who you see at the eye hospital, help you and Frank see? (Dr. Douglas Reynold helps me see better. He gives me new glasses.) – Amy makes sure we have the right glasses too. She also explains things to us. Like that glasses don’t fix Nystagmus, but they help with some of the other ordinary things that are wrong with our eyes. Amy makes us feel more confident. We know we can ask her questions. Sometimes we bring questions to her that children in Frank’s school have asked him and she can give us answers.
9. What has been the funniest Halloween costume you and Frank have worn for Halloween? – Pirates! Frank had a parrot (not a real one!) on his shoulder. We both had eye patches too. That was the best part. The funny thing was that, because of the eye patches, people were more helpful than usual because they realized we couldn’t see so much.
10. If you and Frank could give any advice to children with Nystagmus what would it be? – Don’t feel sad. Find out all you can about Nystagmus and talk to other people about it. Most people are interested. And remember that some very famous people have Nystagmus, so it doesn’t stop you from being happy and successful.

 

Interview with John Sanders (Guest Blog Post #15)

Hi Everyone,

Today’s guest post is from author John Sanders. He write on all different kinds of topics including the eye condition, Nystagmus. Thank you John for being a guest. Please be sure to check out John’s social media links and his books and posts.

  1. Tell me a bit about yourself? – Born in the UK in the late 1950s, I moved around a lot as a child which was an education in itself. I worked as a translator, journalist and manager of the Nystagmus Network. Now I live in Wales and am fortunate enough not to have to do paid work anymore. That said, I still give the occasional talk about Nystagmus and volunteer with several charities. I also try to grow vegetables and fruit on an allotment which means struggling against slugs, pigeons, weeds and weather.
  2. What made you want to choose a career in journalism or writing? – No great plan. It was mostly by accident. My mum saw a job ad which didn’t involve driving. One thing led to another and I became a translator. Eventually that opened up an opportunity to become a journalist where the pay was better and the work more interesting. I missed my colleagues from translating though.
  3. What has been one of the hardest pieces you have written? – Not so much written, but the Dunblane school massacre in Scotland in 1996. That day I was sub-editing for an online news agency as the story unfolded. That meant I was the person checking the copy and pressing the button and sending the story out to screens around the world piece-meal as it happened. Initially all we had were reports of an incident at a school in Scotland. As the minutes and hours ticked by, it became apparent that children were dying and it wasn’t accidental. That was a horrible day. The British Government changed our gun laws following the Dunblane massacre. We’ve not had an event in a school like that here since.
  4. What made you want to write the Northwick stories? – Through fiction and drama you can often reach a larger audience – and have a greater impact – than simply trotting out facts and producing information sheets (although these have their place). Opinion-changing films about illness and disability that spring to mind are “My Left Foot”, “Rain Man”, “The Elephant Man” and “Children of a Lesser God”. One year I had to write up the Nystagmus Network annual open day for the charity’s newsletter. I was fed up (as a journalist) of reading dreary reports about meetings and events. So from almost nowhere sprang the idea of taking a humorous look at the open day through the eyes of the bear we’d raffled to raise money. Some people liked the story (others didn’t), but there was enough support for me to carry on writing about the world from Northwick’s flickering perspective.
  5. What has been the most challenging part of having Nystagmus? –What has probably frustrated me most is how hard it is to learn about how nystagmus affects us. And I’m sorry if this upsets anyone, but after years of thinking about this issue I’ve concluded that – based on the evidence available — much of the blame lies with the medical profession. I know some wonderful people in the medical world who are exceptions to this rule. But so many people’s lives would be so much easier and less stressful if the world of ophthalmology in particular changed the way it communicates to patients who have nystagmus. And, from talking to other people, this applies to other eye conditions too. Instead of simply complaining, I’m one of a small group of people developing a Nystagmus Care Pathway (see https://www.bioj-online.com/articles/10.22599/bioj.126/) which we hope hospital eye departments will adopt one day.
  6. If you could give any piece of advice to a beginning freelance writer what would it be? – A few things: Read good writers. Write short sentences. Be wary of how you use adjectives. And try to write something every day.
  7. What was one of the hardest things that you struggled with in school? – Sport obviously (because of dodgy sight), seeing the board, having to take part in activities I couldn’t see, glare from windows. But also the dreary uniformity — which contributed to making life harder for anyone who didn’t quite fit the norm.
  8. Has Nystagmus impacted your career choice? – I suppose so, but I think most of us are limited one way or another: for instance where we are born, who our parents are, where we live, the subjects we choose to study and to drop early on in school. I was lucky to find work I could do and enjoyed (most of the time anyway).
  9. Has Nystagmus influenced you as a writer (as in how you actually get the writing done, etc)? – Possibly in more ways than I realize. If you’re vision impaired and going along to news conferences you have to develop strategies to get hold of information other people can see and take for granted. On a positive note, not seeing very well has made me more aware of other senses and therefore not limiting myself to describing the world purely in visual terms when I write. Nystagmus was one of the factors that prompted me to go freelance and work from home, mostly by phone and email. It’s so much easier than working in an open plan office (crazy environment for writing anyway) where people generally forget you don’t see the way they do.

Let’s have some fun with these last few questions!

  1. Sweets (which is the British word for candy) or Biscuits (which is the British word for cookies)? – Dark chocolate (candy).
  2. Tea or coffee? – Both.
  3. Bed made or unmade? – Not something I ever think about!
  4. Favorite author? – I’m impressed by people who can choose favourites (English spelling). I’ve read a lot of books by very different authors and know that my tastes have changed and continue to change.
  5. Favorite Food? – See my answer on books. Maybe I’m just indecisive?

Please list your links where people can find your work or if you want how people can reach you:

http://www.northwickbear.com/index.html

https://cvisociety.org.uk/news.php?cat_id=143

http://www.wcb-ccd.org.uk/roundup.php

http://dsq-sds.org/article/view/858/1033

If you would like to be featured on my website feel free to contact me at: amanda@amandagene.com

 

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.