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 My large print books have been replaced by assistive technology.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. 🙂

 

Interview with Ami (Guest Post #23)

Hi Everyone, today’s guest post is from Ami. Be sure to check out and follow her on social media. 🙂

What is your name (or blog/channel name)?

My name is Ami and my blog is UndercoverSuperhero!

Age?

I’m 25 in January.

What is the name/cause of your visual impairment (or other disabilities that you may have)?

I have Bilateral Hearing Loss, Optic Neuropathy, Severe Nerve Damage, Sensory Ataxia, Transverse Myelitis, Raynaud’s Disease, Depression, Anxiety, and I have recently been diagnosed with Mitochondrial Disease.

How does your visual impairment (or other disabilities that you may have) effect you on a daily basis?

I have hearing loss to a degree; I can hear some things but I struggle when others are speaking. Optic Neuropathy (Central Vision Loss) means that the tissue behind my eyes, are very pale which leads to the loss of my central vision. These two impairments combined leave me unable to watch TV, read small pieces of text. Plus, I cannot see some facial features unless they are very close in front of me.

Severe Nerve Damage was caused by an untreated Vitamin B12 Deficiency. Transverse Myelitis caused me to lose all of my mobility, due to my spinal cord becoming inflamed. This also causes me to experience altered sensations in my hands; they feel like I’m constantly wearing rubber gloves.

Sensory Ataxia affects my balance, co-ordination and fine motor skills. The sensory part causes me to not be able to sense where my limbs are, unless I’m actually looking at them (with my good side vision). I can walk a few metres with my walking frame, but due to Sensory Ataxia causing muscle weakness, I become tired very quickly.

Raynaud’s Disease is where my hands, feet, and ears are oversensitive to cold temperatures, thus causing an attack where the blood vessels in my extremities (fingers and toes) become narrow and decrease the amount of blood flow. The attack causes sharp pains, very cold hands and feet. I sometimes have to wear gloves and ear cuffs in the summer!

My recent diagnosis of Mitochondrial Disease came after a muscle biopsy discovered a mutation on one of my genes’. I’m still learning about this disease, but so far, this is possibly the cause of my Sensory Ataxia, Optic Neuropathy and Bilateral Hearing Loss – it’s difficult to say how Mitochondrial affects me symptom-wise as, for me, it’s most likely the cause of 3, possibly 4, of my disabilities and impairments.

I’ve had Depression and Anxiety for just over a decade, it’s definitely improved over the years and despite all my disabilities, I am generally a happy person and try to remain positive. However, due to flashbacks and certain life events, I can experience bad bouts with my Mental Health.

Ami

What do other people feel about your visual impairment (or other disability that you may have)?

I’ve never been asked this before! I think at the beginning, of my symptoms, my family didn’t really understand what was happening, which to be fair, nor did I. However, as I slowly learned to adapt, they started to adapt to my disabilities and impairments too. As soon as they realised that, deep down, I’m still the same Ami, they didn’t treat me any different and we could move forward.

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?

My advice would be – I know it seems scary right now, that’s normal, but as you learn to adapt to your disability or impairment, you will learn that the world around you can be adapted too. Just take one day at a time.

Who has inspired you the most in life?

Growing up, I never felt I had anyone to look up to. However, that changed when I fell in love with superhero movies. Superheroes have their own issues to contend with, but they push them aside when they save the world. They don’t let anything hold them back.

Who has inspired you for your blog or YouTube channel?

Sam Cleasby, a radio presenter and activist who blogs about life with Inflammatory Bowel Disease and Ulcerative Colitis, inspired me to share my recovery story through writing and I’ve not looked back since.

Besides writing or making YouTube videos what do you like to do in your spare time?

Besides writing, I love volunteering! I volunteer as one of Scope’s Online Community Champions, the role includes welcoming new members, signposting members to relevant resources which may be of use to them. Try to answer any unanswered posts, flagging up posts which suggests the member is putting themselves or others at risk. Reporting any spam and generally keeping the community a safe and supportive place for everyone.

I’m also the Leader of Ataxia UK – Norfolk Branch Online Support Group on Facebook, it is quite a quiet group but I’m always on hand if anybody has any questions or needs any support.

Name a bad habit that you have?

Not writing something down while I remember it! Otherwise, its forgotten.

Name your best quality?

Strong – not physically! But strong within, I have had a tough few years but it’s made me a better person and I wouldn’t change a thing.

If you could interview anyone living or dead who would it be and why?

Tom Hiddleston because he is incredibly passionate about each role he portrays; I’d love to find out what inspired him to become an actor. Also, I love his dedication to charity work. He is handsome too!

What is your college major/minor?

I didn’t attend college.

Why did you choose the title of your blog or YouTube Channel?

I love superheroes and as cliché as it sounds, UndercoverSuperhero just popped in my head when I woke up one morning.

When and why did you start your blog or YouTube channel?

After writing my first guest post, for Scope, it inspired me to write about my recovery journey. UndercoverSuperhero began in October 2018.

Where do you see yourself in five years?

I would love to become a Wedding Planner within the next 5 years! Regarding my blog, I’m enjoying watching it evolve; I like to be spontaneous with it. In general, I hope to still be taking each day as it comes and making the most of my life.

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

My blog – UndercoverSuperhero – https://undercoversuperhero.com

Facebook Page – https://www.facebook.com/UndercoverSuperheroAmi/

Twitter – https://twitter.com/AmiHIreland

Instagram – https://www.instagram.com/undercover_superhero_ami/

YouTube – https://www.youtube.com/channel/UC0zcvNOK_xw56IZ-Ab790kA

Pinterest – https://www.pinterest.co.uk/USuperheroAmi/

 

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