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.

 

Disability Blogger Award

disability-award-pic

I was nominated by Rare Mama on Facebook for the disability blogger award.

Here are the rules for the award:

Thank your nominator
Recognize Georgina from Chronillicles as the creator of the award
Use logo somewhere in the post
Answer your nominator’s questions
Write 5-15 of your own questions – they don’t have to be illness related!
Nominate 5-15 other disability, chronic illness, mental illness or special needs bloggers Comment on each of your nominees’ latest posts to tell them they have been nominated

Thank you, Rare Mama for this nomination. Thank you, Georgina for creating this award.

Here are Rare mama’s questions:

What is the main purpose/message of your blog? To educate others on Nystagmus. That we, despite having, Nystagmus, can live a full life.

What is a memorable moment in your journey and why? When I graduated from college. The doctors thought I would never have that kind of education.

What is your preferred method of engagement in regards to your blog? I love Facebook. You can actually have a conversation with people.

What is your favorite activity to help you unwind? I love to read.

When you leave the house name five items you can never leave without.

  1. House Key
  2. Wallet
  3. Iphone
  4. Iphone charger
  5. Purse

 

Here are my five questions for my nominee’s

  1. What is the current brand of phone you are using?
  2. What is your favorite color?
  3. Who was the last person you called?
  4. Do you have any pets?
  5. If you could go forward or backward in time which direction would you choose and why?

My five nominee’s are:

  1. @LiveAccessible
  2. @TheoryOBlindMan
  3. @jazminruiz07
  4. @awareness_blind
  5. @maxwellivey

 

 

The No White Food Diet

During my first therapy appointment one of the main recommendations my therapist suggested was a change of diet. She told me about a diet called, “The no white food diet.” This diet is simple. You do not eat white food. Examples of this are white bread, white pasta, potatoes, candy, soda, etc.  I would take these foods and I would either live without the food or find an alternative. She told me that there was many benefits to this diet such as less depression, anxiety, more energy, and better weight management.

I decided to try the diet.  I didn’t know how bad the diet would make me feel and how difficult it would be for me to follow.

To help me get started my therapist suggested a list of foods that I could have: oatmeal, eggs, chicken, hamburgers, sweet potato fries, fresh vegetables, fruits, unsweet tea, water, etc.

I remember the first night I tried the new diet. My grandpa was naming things off the menu that he was going to be fixing for dinner and a lot of it I couldn’t have. I ended up having some chicken and some vegetables. I had such a craving for dessert. The next day a friend and I went shopping, I got hamburgers, bananas, Yogurt, whole grain bread, and some canned vegetables. The first day went fine. The second day I started to get cravings for things I wasn’t supposed to have. The bananas I had helped me with the cravings. By the third day, I started to have problems. I started having stomach cramps and the side effects were not pleasant at all.

I continued to stick to my diet. I even told my co-workers at my temporary job about it because they would buy and eat foods that I couldn’t have. It was really hard to fight cravings and seeing people eat things that I wanted. I also felt tired and shaky a lot of the time. I felt hungry too. My body just felt sick. I really wanted to give up on the diet.

To be honest, I was really dumb because I didn’t educate myself enough on the diet. After a friend suggested that I google ideas for my diet I did. I found out there was a lot of foods that I could have.

I finally found a menu that I loved and found staples such as vegetables, fresh fruit, meat, and tea.

At my next therapy appointment, I asked my therapist about how I was feeling and come to find out the side effects I felt were completely normal. She gave me more ideas for what I could eat. She told me the more I stayed on the diet the better I would feel. What my therapist didn’t understand at the time was that I was a part time caregiver for my grandmother, and my grandpa grandma and I ate as a family. To help my grandma with her eating grandpa would get things such as chicken nuggets, mashed potatoes, etc. It used to distract my grandma if I was eating something different than her, so to keep her eating we would eat all the same meals.

This made my therapist very upset. She didn’t even like the fact that I was eating white sweet potatoes.  I did the best I could to stay on the diet, but every time I would eat something that was not on the diet plan my body would feel sick again.

I wanted to keep my therapist happy about me staying on my treatment plan. I did the best I could. I found that if I did follow the diet, I felt somewhat better. I decided to stop the diet because I kept having problems with the side effects. I am now back on my regular diet. I have gained some weight and I am working on losing the weight.

Have you ever been on a diet to help your mental health? Let me know down in the comments below.

Author’s note: I am not a medical professional or therapist. I am sharing this blog post from my own experience. If you are having problems with your own medical or mental health please seek proper medical care.

 

 

2019: October is Dyslexia Awareness Month

Dyslexia was a word that I didn’t understand much as a child. As a second-grade student I went once a day to sound out letters, write letters and to practice reading. I didn’t understand why I was sent to this classroom. All I knew was that I thought the class was boring. Day after day I would go through the flash cards with sounds A Apple, P Preacher. Finally, one day, I asked my mom why I was in the class. She explained to me that I had a condition that effected my learning. The condition was called Dyslexia.

According to the International Dyslexia Association, Dyslexia is a brain disorder that effects two main abilities, and that is to read and spell.

 

 

There are many myths that people generally hear about Dyslexia. I have decided to discuss three of them.

  1. People with Dyslexia can not read. This myth is false. I struggled to read, however with proper support and training I can read very well.
  2. People with Dyslexia see the words backwards. This is false as well. I may get my letters and sometimes numbers backwards, but I don’t see the words backwards.
  3. People with Dyslexia can not be successful. This is completely false. Many famous people have Dyslexia and are successful. I see myself as a successful person. With technology and hard work Dyslexia doesn’t have to control me. I can overcome it.

What are some myths that you have heard about Dyslexia? Let me know down in the comments below.

Nominated for the sunshine blogger award

Sunnshine blogger award

I was nominated by Jessica, who runs the blog, Sorting lives issues with Jess, for the sunshine blogger award.

As with most of these awards you must post a copy of the rules:

The rules of the Sunshine Blogger Award are as follows:

  • Thank the person who nominated you and links back to their site.
  • Answer the 11 questions asked by your nominator.
  • Nominate at least 11 more bloggers for the award and write 11 new, creative questions for your nominees to answer.
  • Notify your nominees via social media or by commenting on their blog.
  • List the rules and display the Sunshine Blogger Award logo on your site or in your post.

Thank you again, Jessica, for the nomination. Please be sure to check out her website.

 

Here are her questions:

  1. If you could live anywhere in the world where and why? I would love to go live in England and Scotland. I have friends that live in those countries.

.2. What does a day in the life of you look like? Very chill. I tend to do my chores in the morning then work on my business in the afternoon.

  1. If you could be an animal for the day what would you be and why? A dog. Because I would love to find out more about how dog’s think.
  2. Do you have any hidden talents? Not really.
  3. What is a long-term goal you want to achieve? I would love to be a freelance journalist and teacher.
  4. If you could be a celebrity what kind would you be? Maybe a singer. I like to sing.
  5. What are some of your favorite podcast and/or TV series? I don’t watch tv that much, but I love Orange is the New Black on Netflix.
  6. What is your favorite season? I like Fall.
  7. Where is your next vacation? I hope to go to Maryland one day to visit a good friend of mine.
  8. What’s your dream job? Freelance journalist and teacher.
  9. If you could be amazing at one sport what would it be? Soccer

 

Here are my 11 questions for the nominee’s

  1. Do you have any pets?
  2. Who was the last person you called or texted?
  3. What time do you go to bed?
  4. What is your favorite food?
  5. Name your favorite color?
  6. What is your least favorite drink?
  7. Name your worst habit?
  8. Name your best quality?
  9. What is your favorite piece of technology?
  10. What was the last thing you ordered on Amazon?
  11. What is your favorite show on TV?

My nominee’s

  1. @well_eye_never
  2. @VIBlindResources
  3. @DisabledDisney
  4. @lukesamsowden
  5. @Brainsonwheels
  6. @Mind Body and Soul Solutions 
  7. @Disability&J
  8. @Your Canadian Blind Girl
  9. @bvwdreamer
  10. @LiveAccessible
  11. @AmandaBlind1

 

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

 

2019: More Movement, Patience and Positivity-September Edition

September has quickly come and gone. A lot of things have been happening in my life.

Movement is the first pillar in my saying this year. I have gotten very close to my weight loss goal. I only need to lose three more pounds and then I will be at my healthy weight range. What has helped me make steps toward this goal is a lot of encouragement from my family and friends. I found a workout program that I love, and I have been doing it pretty regularly.

I have turned in my step four for my business plan. I have yet to hear anything back except that my caseworker liked what he saw. I have sent in my teaching course for review too. It is all about waiting to get feedback.

Patience has been growing too. I broke my tripod this past month and I had to order a new one. I had to be patient until my new one arrived. I had to sit at my desk and record two of my weekly YouTube videos, however it is better to do something than nothing.

Positivity has been great! Duke ended up going to the vet this past month. He had an allergy; thankfully his vet was able to get him on some medicine to help him feel better. He is now back to his goofy self.

I have been setting small goals for myself. One of my goals was to send a care package to a friend.  He really enjoyed the goodies that I sent him. My next goal I have set for myself is to go and get my passport.

What goals did you achieve this month? Tell me in the comments below. Remember you are worth it.