Reconnecting with Creativity

Being creative is something that my life has encompassed since I was a child. I started dancing when I was three years old and kept it up for over twenty years. I did drama and singing, drama I didn’t like so much but I loved to sing. During primary school I learnt to play the piano, clarinet and saxophone, and kept the piano up in early high school.  I used to do creative writing and art.

I went to a performing arts high school and spent my days amongst a creative bunch of teenagers. I majored in dance (yes it was totally like Fame we used to bust out in the playground) but also continued art. I spent my first year out of high school doing a full time performing arts course before attending university.

Then my sight deteriorated. I stopped everything. Dancing had been my entire life; all my closest friends are from dancing. It wasn’t an immediate reaction, but I slowly gave things up and attributed it to ‘growing up’. Who says you need to stop doing things you love because you are getting older?!

Over the past months I’ve realised how being creative was something I enjoyed and shouldn’t let my lack of vision get in the way. I’ve made a conscious decision to start to ease back into the things I enjoyed and find ways to participate despite my sight. I know that it is going to be different doing these activities but I’m choosing to look at it as a challenge and as a new adventure.

My first focus is on playing the piano again. We have two pianos in my house and it’s time somebody actually played them! About two years ago I started private classes again to get back into it but it was extremely hard explaining my vision to the teacher and finding a way to learn because I couldn’t read the music. I had never learnt from ear and wasn’t sure how to start. I ended up giving up after a few months.

This time I’m determined to get my fingers working again. I have decided to learn braille music. I will admit it looks utterly daunting with all the dots everywhere. I do like to challenge myself so I am going to give it my best shot.

Another thing I’ve started is colouring. Art therapy is all the rage at the moment and I couldn’t miss out! I downloaded a colouring app (Colorfy) on my iPad and Samsung phone and it was great. You can zoom in and tap the spaces to fill in colour. Of course I wanted to do the real thing so I bought myself a mandala colouring book. I promised myself that I wouldn’t get frustrated if I couldn’t do it. I spent three hours calmly colouring in tiny spaces using only my peripheral vision. I don’t think I’ve ever sat still for that long! It was definitely calming but each stroke, as I guessed where some of the lines where or made mistakes, helped me accept a little more that my sight has deteriorated and also reinforced I can still do things if I really try. 

If you think you need to give up a hobby or passion because you are losing your sight, don’t. If you think you can’t do something because your sight will prevent you, you can. If you’ve given up something you loved due to your sight, give it another go.

Being creative is part of being human. For you it may be writing, drawing, dancing, crafts, cooking, absolutely anything. Make yourself engage in it again. 

Pick up something you did when you were a child and see how carefree you feel again. There’s no harm in trying! Apart from my braille piano project I plan to get back into the dance studio.  I know this is going to be a huge challenge but determination will always prevail.  Never give up on things that make you happy. There’s always a way to participate and be creative. 

My interview on Radio RPH

I was invited to do an interview on Radio RPH Adelaide on a program called Vision Extra. I was interviewed by the awesome Peter Greco and talked about my experience with Stargardt's Disease and how it lead me to establish See Through My Eyes as a not-for-profit organisation. 

I hope to keep raising awareness of Stargardt's, other vision impairments and how it affects our younger populations. Most of all, I want to keep raising awareness of how amazing and fulfilling our lives can be!

See Through My Eyes is now a Not-For-Profit Organisation!

I am very excited to share that See Through My Eyes is now a registered Australian not-for-profit organisation!

What began as a blog to share my experience with Stargardt’s Disease is now going to not only raise awareness and share information about the disease, but reach the wider community to help make a difference in the lives of people with a vision impairment.

I have brought together a team of knowledgeable Directors to achieve the organisations purposes – we are focusing on education and careers for vision impaired and blind individuals by offering a number of programs including scholarships, adaptive technology, careers counselling and support, workplace seminars and advocacy in our key areas.

My blog will be integrated into our new website - www.seethroughmyeyes.org.au. I will continue to raise awareness for Stargardt's Disease and share my personal experiences and research with you all.

You can follow the organisation on social media:

Twitter: @seethrumyeyes

Instagram: @seethroughmyeyes_au

Facebook: https://www.facebook.com/stargardtsdisease

I am looking forward to the future and change that we will make together as a strong community of amazing vision impaired people!

When to use a mobility aid

A common question that arises amongst people with Stargardt's Disease and other vision impairments is whether I use a cane, a guide dog or neither. The question then  asked is visual acuity, how it helps and why some people use aids and others don't. I've been thinking about this question a lot lately and hope to help others with a vision impairment and without to understand why I choose to use a cane and what factors influenced my decision, and hopfeulyl help others to decide, whether to use a mobility aid.

As I've previously written, my cane and I have a love-hate relationship. I went through a period of using it to not wanting to know there were three in existence in my house, to becoming best friends with it once again. For the past few months I have made a conscious effort to get used to using it and taking it whenever I'm out. 

There were two main reasons I chose to use the cane:

• Crossing roads: My ability to cross a road is absolutely terrible. I'm an avid walker and love to get out in the fresh air and walk to calm my mind. Every time I found myself curbside, I felt vulnerable, clumsy and even more vision impaired. I couldn't make out whether there were cars coming, if near a busy road there was no auditory break in the traffic and I felt like I was walking into an abyss. Then came the anxiety from the feeling of vulnerability and the loss of control. When I walked with another person, I would solely rely on them to usher me across the road. I knew this wasn't healthy and I couldn't rely on others. So Mr Cane came back into my life once again like a clingy, annoying boyfriend although this time he had gotten his act together and we were actually getting along. I found just having the cane in my hand to indicate brought a sense of calm and confidence to crossing a road, it let others know that my vision sucked and they should be patient and careful if I start to cross. More than anything it was security. It was a way of announcing to the world I'm vision impaired. People's reactions were (mostly) helpful, they would stop and let me cross and some even reversed to let me pass. It restored my faith in humanity and made me feel like the world isn't such a scary place. 
• Pavement problems: I'm a klutz on the best of days and now I'm a super klutz. The pavement around where I live seems to be really bad, the huge eucalyptus and gum trees' roots have made the footpaths cracked and uneven. Since using the cane I haven't had any stacks or tripped over where I normally would. Just to reinforce this, I went for my usual walk the other day without my cane and I tripped numerous times and realised it was my karma for leaving the cane at home. It's actually quite surprising how helpful the cane is when on the street. I never noticed how much I was concentrating on where I was going and what I was walking into. When I started using the cane I found I could relax a lot more and take in my surroundings using my other senses rather than staring intently at the ground in front of me.

Choosing to use a mobility aid such as a cane or guide dog is a highly personal choice and isn't solely based on visual acuity or degrees of vision. Each person is different, has different experiences and different needs. Here are some of the things that are usually taken into account when deciding on an aid:

• Confidence: This is extremely important. Being confident with your surroundings, with the amount of vision you have and the way you use it will impact whether you decide to use a mobility aid.
• Lifestyle: This includes work - how you get there and what you do at work ie whether you need to navigate a great deal, leisure activities such as sports or running and social situations. Use of a mobility aid may not be needed in all areas of a person's life. It is pretty much impossible to run with a cane (yes I've tried and looked like a clown running down the street) and sometimes it's better left at home.
• Location: Where you live can also play a part. If you need to travel far on public transport or have access to lifts from others will influence the decision to use a mobility aid.
• Perception: How you perceive mobility aids plays a huge role, not so much for the positive. I personally have struggled with, and still do, the stigma surrounding using a cane. There tends to be a little less stigma associated with a guide dog as they are far more cuter than a cane! As much as I'd like to say how you perceive using a mobility aid doesn't attribute to whether you use one or not, it really does play a major part. I avoided using my cane for a very long time because I was embarrassed as to what people think and I still have times where I feel like people are staring and talking about me. 

The one thing I have learned is that if I need help to not be ashamed and to use it. If a cane, guide dog or anything else helps me navigate, feel confident and improve my quality of life I should use it. I also know personally and from others with a vision impairment that because we have some sight we don't 'deserve' a guide dog. This is utter rubbish. As I mentioned before, if it helps us in life, we deserve it. Be open to trying mobility aids, sometimes you find a use for them that you had never considered.

 Image source: http://www.google.com.au/imgres?imgurl=http://4c1lions.files.wordpress.com/2012/06/white-cane-day.jpg&imgrefurl=http://district4c1lions.org/about/white-cane-safety-day/&h=399&w=600&tbnid=ELquhjxngEcDHM:&zoom=1&docid=XQcXF0wr-QH-OM&ei=44aOVb_HA9P68QWVnYDQDQ&tbm=isch&ved=0CDoQMygXMBc and https://www.pinterest.com/pin/274578908507893730/

My Fear Vs My Optimism

Over the past few years I have had numerous thoughts that provoke fear and sadness about things in my future. From having my whole life seemingly planned (yes I know I'm slightly OCD) and my goals within my reach to all of it taken from underneath me. I sometimes look back at the day of diagnosis and the weeks following it and the feelings and thoughts I had - they were grief-stricken and quite frankly irrational. I'm thankful that at the time I did not make any rash decisions, most likely because I had no idea what to do.

I've gathered some of my most personal and distressing thoughts I've had about my diagnosis with Stargardt's and how it will affect my life. For each of them, I've tried to take a positive spin and find the reality in each to help me cope and see the glass half full. I hope this can help others who are having the same thoughts.

My Fear: How will I ever see my babies faces?
My Optimism: I can still see faces up close, and let's be honest I'll be in my babies' faces constantly! From being around other babies I won't lie and pretend I haven't noticed that I need to get closer to see their cute little eyes and smiles, but from the experience I've been able to find a certain peace in it and know that I will still be able to see them to a degree up close. It won't hinder my bond with my children. They will also learn to adapt to my situation and become strong, positive little beings who are sensitive to people with a disability.

My fear: I won't be able to live independently. I won't be able to get where I need to go in an emergency and especially if I have kids.
My optimism: I live at home with a huge family and enough animals to have our own zoo. I have lived out of home previously but this was the early stages of my disease and I could still drive. I'm hoping to move into my own place in the near future and have realized that there is a lot I need to consider - I need to make sure I live walking distance from shops, doctors etc, close to public transport and my work. I also want to be a short distance from my family so I can travel alone to them. When I tell people that I want to stay living locally I am frequently questioned and told there are so many other beautiful places to live. The reality is - I need support. Is that a bad thing? No. Do people without a vision impairment need support? Yes. So what is so bad? Nothing. I may need to plan my location a little more than the average person but that really doesn't matter. In the end I will still be able to find a home with accommodations to support my independence. 

My fear: I won't be able to find a partner who will accept me for me.
My optimism: If someone can't accept I have a vision impairment and see my worth as a person, then they aren't worth another minute of my time! This is something I have grappled with numerous times and it is hard to actually truly believe it. My generation is focused on possessions, selfies and everything is disposable. There is always something better (apparently). This has really broken me down. I have thought I now have a 'flaw' and 'who would want to be with someone who can't see or drive?' I've realized how untrue this is. My vision doesn't affect my worth as a person, in fact it increases it. It has given me knowledge, strength and resilience. It has given me a whole new outlook on life, taught me empathy, taught me determination. These are all qualities that are positive and can bring wealth to a relationship. So if somebody doesn't appreciate that, to be cliche, it is their loss. I would never be the strong woman I am today without this experience.

M fear: I won't be able to work doing a career I enjoy.
My optimism: Of course I can! Never say never (sorry, I hate to quote Justine Beiber but he is actually right!). I've said this from the start, I may just have to take a different route to get to the end goal. For instance, I wanted to do medicine, I wanted to be able to help people. What did I do instead? I studied psychology. I'm still doing what I love and will be able to sustain this career despite my vision. It could be anything you want to be (with the exceptions of anything driving related but driver-less cars could change this!).Don't listen to people who tell you otherwise. It may be tough at times but what in life isn't. The most important thing is to do something you love and enjoy every day and do something that gives you meaning. Don't settle for anything that doesn't make you happy. 

I hope that others can find the optimism in their fears. I am still battling with these ideas but over time it becomes easier and I become more positive. It is always scary at the start but once you really think about the truth in the thoughts they don't seem as overwhelming. 

Most of all never think you are alone. Sometimes speaking out about your feelings and emotions can be beneficial. It is cathartic. Whether it be family, friends or a counselor. Vision loss is not just a physical condition, it affects every aspect of one's life. Don't be afraid to acknowledge that. 

 Image source: https://www.pinterest.com/pin/362328732497745408/



 

Real People #4

Today I'd like to share another story from someone I have been able to become good friends with. Janet is another young lady who I have watched flourish and grow and I am so proud of the positive attitude she has adopted that also helps me stay positive. 

Janet Ngan, 24, Phoenix, Arizona, USA

When were you diagnosed with Stargardt's disease and how did it affect you at that time?

I was first officially diagnosed with Stargardt's disease when I was 15 years old.  It feels much longer than that because I remember getting my first pair of glasses when I was in first grade (age 6). I always had vision problems and I spent most of my childhood going to different doctors and getting new glasses. I remember never being able to read the board at school and having issues adjusting to light from the sun after recess. However, after seeing so many doctors and getting new prescriptions for my glasses I felt like it should help so I started pretending like it really worked. I would go to school early or stay late so I could copy notes from classmates and sit in the front of the classroom as close to the board as possible. I would even pretend to forget my glasses so I could get someone to read me what was on the board. This worked out okay for a couple years but then as schoolwork started getting more difficult it got really hard to hide my vision. When I was a sophomore in high school, we had our annual health fairs to test your vision, hearing, etc and I did so bad on the vision part that they sent a letter home to my parents saying that I needed to see a doctor. When I went to see my doctor, she didn't understand what was wrong with me so she sent me to a “special doctor” (ophthalmologist). I remember it was the summer of 2006 and I was sent to about six or seven different doctors performing special tests on my eyes. Finally, when I saw my ophthalmologist again, he told me that I had a rare eye disorder called Stargardt's disease. The rest of that summer was so hard and I had so many emotions. I cried almost everyday, blaming myself, feeling like the biggest failure in the world, and just could not bring myself to accept it. But after awhile things cleared up and I learned to find the positivity inside of me. Even though I was healing from my emotions I still felt ashamed to tell my friends about it at the time. I hid the secret from my friends, classmates, and teachers. This only lasted for a little while because when I started doing very poorly in my algebra class I knew I had to tell someone. Thankfully, my algebra teacher at the time had noticed that something was wrong with me and I confronted her about my vision. She contacted the school and found two faculty members who worked with students with disabilities such as those with a visual impairment to work with me. They provided me with different resources such as using a CCTV, magnifiers, enlargement my textbooks/exams, extra time to complete my exams, and a note taker to help me in class. This was like being in a new world for me. I was still kind of embarrassed by all the attention of carrying textbooks that were almost three times its size. But I did find that these accommodations were helping me tremendously in my classes. I worked really hard and my grades were finally picking up and it actually didn't feel dreadful to go to class everyday. So at the time I was diagnosed I felt like the disease made me weaker but I've realized that it was what I needed to make me stronger. It was definitely a struggle and some days it still feels rough but I've learned to not give up and try my very best in everything I do. I've learned to ask for help when I need it even though I don't want to. Most of all, I learned that Stargardt's doesn't define me, it is my attitude and how I choose to react to it that makes me who I am. I can't change something that is beyond my control but I do have control on how I live my life.

What parts of your life have you adapted because of this disease?

I think Stargardt's has affected many aspects of my life but the most recent and hardest part was the inability to drive a car. I was diagnosed at the age where I was supposed to get my instruction permit to start learning how to drive but I was unable to because I failed the eye exam portion of the test. So I never really had that experience of driving throughout my teenage years and having a car during college. When I was in college, I lived close to campus so I could ride my bike or take the shuttle to school so it wasn't a big deal. When I went out with my friends, they usually picked me up so I didn't have an issue until after I graduated. I learned that a driver's license was the ticket to EVERYTHING from going to places on your own to getting a job! I did not prepare myself for this struggle when I was in school so I felt super lost at the time. I thought I could just ride the bus but I didn't realize how scarce, unreliable, and time consuming the public transportation system can be. So I ended up talking to my doctor/low vision specialist and they told me I was able to drive with bioptics. Bioptics are these lenses that have a telescope on top that magnifies like a binocular. I was really excited for this and I felt like I was finally able to drive and be more independent. I spent my year off from school doing the bioptic training and it was just a huge struggle. At some moment I was really happy and felt like I was doing a good job. However, because of the safety and how my vision fluctuates I had to give up the driving. This was probably the second biggest hurdle I had to overcome since my diagnosis and it left me devastated. I didn't know what I was going to do with my life if I couldn't drive and get a job. It almost felt like the summer of 2006 again. But I didn't let it get to me as I picked myself back up and I talked to the local vocational rehabilitation about resources for the visually impaired. My vision hasn't gotten bad enough to the point for me to use some of the resources. I found a part time job working in retail and learned how to take the bus there by myself to work. This was my way of feeling like I could be independent no matter the challenges that Stargardt's brings. During this time I also reached out to people about my issue and explored the different options for me to find success. I knew I didn't want to move back in with my parents for them to take care of me for the rest of my life. I was passionate with public health and helping people improve their quality of life which was what I studied for my undergraduate degree but jobs were incredibly hard to find since I needed to be able to drive in order to perform the job in the community. So in a way I had to adapt my career to fit me as well. During this time period I worked on classes and applications for graduate school for occupational therapy. So in the beginning, not being able to get my driver's license felt like the end of the world to me because so many things I wanted to do revolved around that. But I was able to find a way to make it work and continue to grow stronger and adapt to the hardships that Stargardt's brings.

What are your goals and where do you want to be in ten years time?

This is a very good question! I know time goes by fast but I have no idea where I will be a whole decade from now! A lot can happen in that period of time and life is just unpredictable. So it is hard to imagine me at 34 years old (ew I'm going to be OLD!) when I barely know what is happening tomorrow. However, my biggest goal right now is to make it into graduate school and get my Master's in Occupational Therapy. I expect that in ten years I should be an occupational therapist and loving my job. I really want to be able to make an impact in people's lives. I want to help the visually impaired and other people with disabilities be able to find the independence and fulfillment in their lives. I want to reach out to people who may feel as lost and confused as I once was and show them that anything is possible and nothing is worth giving up on their dreams. Also, in ten years’ time I hope to have traveled more (hopefully meet you in Australia!) and cross off more things on my bucket list. I guess I'm pretty simple. In ten years’ time I just want to be someone that I can look at and be proud of. I want to be happy and make everyone around me happy. Sounds cliché, I know.

What inspired and motivated you to get you to where you are now on your journey?

Honestly, I feel like this disease itself has impacted me so much to become who I am today. Yes, it did bring me a lot of stress and challenges to get over. But what is life without these experiences that make you different from everyone else? Being able to go through each hurdle that comes my way and ending up here is super inspiring to me. There were actually times where I felt like I could never make it this far but I continue on this journey learning so much. I spent some time being angry at why out of the billions of people in the world it had to be me, but I don't think I would be the same person as I am without Stargardt's. It has really taught me to cherish life and to put in 110 percent in working harder to achieve my goals. I never wanted to take things for granted and just want to make use of all the vision I have to create a spectacular vision for the future. It has also given me the compassion to want to help others who may have similar problems get through it because I understand what a pain it can be. This was a huge reason why I want to pursue a career in Occupational Therapy and stay in the healthcare field. I used to think Stargardt's was the biggest curse of my life but I've learned to see it as a blessing. It makes me unique, I mean how many people have awkward stories of walking in the wrong car or not recognizing someone instantly while you're having a conversation with them?  Maybe that part is not much of a blessing but to people who know me and understand, it gives us something to laugh about later. Having Stargardt's also gives me the drive and determination to do anything and turn the “impossible” into “I'M Possible.” I know I'm always going to have those days where I feel depressed that I'm not living up to where I should be based on where I see other people but this just makes me want to try even  harder to get to where I want to be. Also, I think the more I understand this disease (such as from my diagnosis), the better I feel because I realized it is just a part of me and that I wasn't going crazy because I didn't have the same vision as everyone else. I actually found it very inspiring when I first read your blog and found that there was someone in the world who felt and experienced exactly what I endured. Even though we literally live on opposite sides of the world and we've never even had a cup of tea together, I feel this sense of closeness and energy with you because of the one thing we do have in common. I'm the type of person where I can get easily motivated and enthusiastic at life because I get my energy off of other people. So being able to share our experiences with each other has helped me significantly because I know that I'm not alone. I know that I can continue growing stronger than ever no matter what comes my way.

If you would like to connect with Janet on Facebook click here.

Thank you for sharing your experience. Despite our distance, you have been a huge support for me and motivate me to keep doing what I'm doing. 

The Stargardt's community we have all contributed to is incredible. Thank you to everybody who has been a part of it and keep all the emails, Facebook messages, tweets and Instagrams coming! 

See Through My Eyes on Facebook

If you are on Facebook and don't already follow "see Through My Eyes - Stargardt's Disease", head over and make sure you 'like' the page here.

On the page I share up-to-date information on clinical trials and research articles, Stargardt's in the news and other information on services and resources available to people with vision impairments.

I also have a very exciting announcement to make in the coming weeks so make sure you stay tuned!

Today is a milestone

Today is a milestone in my journey. Apart from being my sister's birthday (Happy Birthday J!), it's also the day my driver's licence expires. 

I've held my licence since I was 16 and got my Learner's. My first care was this horrendous red Mercedes Benz station wagon that fit seven people, two backwards in the boot. It was our old family car and I think my parents gave it to me so they could keep track of where I was, because everybody knew the car and would report back to my Dad who would then phone me and ask where I was. Busted! Apart from it's hideousness, it was a sturdy, solid beast and kept everyone safe.

My second car was, once again, a dump. My Dad being a mechanic was always picking up old cars no-one wanted. This lead to my inheritance of an old blue Mitsubishi Lancer. The catch was that this car was manual, and I only knew how to drive automatic. I've never felt more uncoordinated in my life learning to drive manual. I stalled the car (not exaggerating at all) over 10 times at one intersection! Luckily, I finally got the hang of it and turned into the manual queen! 

My little Lancer got me to and from uni, and in my final year of uni I landed a full-time job and my first real income. My first purchase was a brand spanking new silver Mazda 2. She was my baby, my first really large purchase. It was only a few months after I bought my baby that I started having vision problems and was diagnosed with Stargardt's. What a slap in the face. 

I was told at that time I shouldn't be driving at all, but I'm NOT proud to say I continued to drive, only short distances and not on freeways. I know I shouldn't have but letting go was ridiculously hard. I wasn't coping with all the emotions of this diagnosis and this was another blow. 

As my vision deteriorated I knew I had to stop. That was a huge decision and something that caused me a lot of stress and anxiety. I've written about that experience previously. This was also when I decided to sell my car. It was a contributor to my rock bottom.

Even though I haven't driven for about a year, today still is a big deal. I've known this day was coming and it was always a black day in my mind. It feels as though it is now final, done, can't be changed and set in concrete. There's no chance I could renew my licence. It's almost as if I had hoped a miracle would occur and I would improve. I never lose faith until the day has passed! 

To be honest, I don't feel as bad as I thought I would. I thought I'd be feeling anxious and like my control is being taken away. Part of this lesser feeling is probably due to not having driven in a while, I essentially weaned myself of driving, then the idea of driving. I've really surprised myself and I'm surprised in my strength and positivity. 

I still hate public transport and will continue to avoid it (chauffeur wanted, enquire within!). This just gives me more motivation to succeed and bring about change for others. I want everyone else to know that it DOES get easier. I'm not going to lie and say it's a walk in the park and I don't have days when I just want to cry, but overall my outlook has changed and my drive just keeps increasing. 

It's hard to let go, but do it slowly if you can. It always looks worse when you are looking into the future, but once you're there, it's not so bad. Then when you look back, you think 'wow, I did well' and can feel proud and push yourself further. 

Stay positive and never, ever give up!

Photo credit: https://www.pinterest.com/pin/45739752440941597/

Happy Rare Disease Day!

Today is Rare Disease Day to raise awareness about rare diseases and the impact these diseases have on people's lives. It is an international day held annually. 

Stargardt's Disease is considered a rare disease, with the incidence widely debated. Here are some statistics I can dig up about SD:

• SD affects about 1 in 10 000, so in Australia there should be approximately 2 300 people with SD ( I know about 10 so the other 2 290 people please get in touch!). There should be appropriately 31 800 in the United States and 6 400 in the UK. 
• SD accounts for 7% of all retinal degeneration. Other retinal degenerations include retinitis pigmentosa, Usher's disease and Leber congenital amaurosis.
• SD is also knows as fundus flavimaculatus. I'm pretty certain this is what Harry Potter would have called it if he were diagnosed. 
• It is thought that 5% of the population carry an abnormal gene for processing vitamin A. So 5% of the population have the possibility of developing a retinal disease.
• 100% of those affected by SD are amazing people!

Here's the official video for 2015.

Spread the word and spread the love! 

To find out more information, see what events are being held locally and read other people's stories, check out these links:

Rare Disease Day - International

Rare Disease Day - Australia

Rare Disease Day - US

Rare Disease Day - UK

Sources:

http://eyewiki.aao.org/Stargardt_disease/Fundus_flavimaculatus

http://www.md-health.com/Stargardt%27S-Disease.html

10 Tips for Studying With a Vision Impairment

The new study year is upon us, I'll be in my final year of psychology and I'm sure there's many of you also returning to uni, school or college. I though it would be beneficial to put together a list of tips for studying with a vision impairment not just for anyone reading this but also for myself so I can stick to it throughout the year!

I have been at university now for close to ten years, half of that time I had perfect 20/20 vision, the other half I have slipped to legal blindness at 6/60. Just acknowledging this is a crazy thought - I still to this day can't fathom how I've gotten to this stage! Despite the lack of vision, I have remained determined to keep studying and find a career I love and can maintain with my vision. So here are the tips I've picked up along the way:

1. Take frequent breaks. This is a given for anybody studying, vision impaired or not. But if you have a vision impairment it is important to take more frequent breaks to give your eyes a rest and let them recharge before slaving over more readings or assignments. I try and force myself to take a break every 30 minutes, or when my eyes are starting to hurt and struggle to focus. When you take a break, make sure you do something that doesn't use your eyes. I like to put on some music or an audio book or get in a little bit of mindfulness meditation which also helps me re-focus. Find something that works for you, that gives your eyes a rest and also helps you to relax. If you take frequent breaks, you will be able to study for longer periods of time, perfect for those cram sessions!

2. Utilise adaptive technology. There is an abundance of adaptive technology options available to help in all sorts of study situations. I use Zoomtext for my computer/laptop, I use an iPad for screen reading of textbooks and documents, I have multiple hand held magnifiers for paper documents and also a CCTV. There are so many options available that can suit your needs. The best place to start is by getting in contact with a low vision service in your local area. The most important thing to remember is that it takes time to get used to using these devices and to be patient. I was extremely resistant to using a lot of them but once I got the hang of them and realised how much they help I can't do without them. 

3. Learn how to listen rather than read. This was something I was resistant of doing for a long time. It seems like a basic concept, to listen to a textbook rather than read it, but it's actually a different way of absorbing information and it takes time to get used to. I would use the reader option in iBooks on my iPad, and within 30 seconds the voice had put me to sleep! It's also harder to take in information from a long document by listening to it (especially when it's read by a computer or monotone voice). It takes some time to get used to but once you've got the hang of it you will wonder why you didn't start earlier. It gives your eyes a chance to have a break whilst still being productive and taking in information. Definitely a skill that should be honed! 

4. Be organised and prepared. This is probably my biggest downfall. I am a last minute crammer and will leave my assignments until the day they are due. Possibly because I like to torture myself. I've now learnt you CAN NOT do this when you have a vision impairment. It creates more stress and leaves you with migraines that last days. Make sure you get yourself organised at the start of semester. Plan when assignments are due and start them early so you can do a bit each day over a few weeks. Be diligent with this as you will pay the consequences if you leave things to the last minute. 

5. Build relationships with staff, students and institutions. This is important to ensure you have the support you need. Don't be afraid to ask if you need help with something or to get work in a format you can read. Find the staff members you most trust and use them as a point of information. It is also beneficial to have friends who are doing your course who can help at short notice if you need it. Having studied my last course via distance, sometimes this is hard as you don't get to meet any other students. Facebook works wonders for this and there's always someone willing to help out. The most common problem I come across is missing textbook chapters and other students have offered to scan them for me instead of waiting for the uni. 

6. Know your rights and entitlements. As I have mentioned in previous posts, sometimes you have to stand up for your rights. Everyone has the right to an education and reasonable adjustments need to be made for a person with a disability - don't let anybody tell you otherwise. Most institutions have a disability centre that can help with most things but still familiarise yourself with your rights. Don't be afraid to stand up for yourself and ask for the adjustments or resources you need to succeed.

7. Don't over commit. This is something I also tend to do - take on too many subjects. If you have just begun studying, start with a small workload and see how you go. You can then take on extra subjects in subsequent semesters. You don't want to put yourself in a position where you are stressed and don't do your best. 

8. Don't be afraid to ask for help. If you need help - ASK. Don't be embarrassed or feel that you are useless. There's nothing wrong with asking for help in any situation not just studying. Not only will this benefit yourself, it will also help others to understand your situation and the impact a vision impairment can have. It's a win win for all!

9. Find what works for you to minimise symptoms. The most common symptoms I experience are eye strain, eye pain, headaches, migraines and even nausea if I've been at it for too long. Find little tricks that work for you to help minimise these symptoms. Apart from taking breaks, try a cold compress on your eyes. This will reduce some of the pain and strain. I also use cucumbers- they actually work! Don't forget to look after yourself, get a massage to reduce tension in your head and neck from straining to see. 

10. Stay positive through the tough times. Studying is not a walk in the park. It can be hard work. It can be demanding and stressful. There will be times when you just want to throw in the towel, it's too hard, it hurts too much or it's too much of a struggle. Don't give up! You can get through it, and achieve great results. Don't let your vision be a hindrance, it doesn't need to be. It doesn't change your intelligence or your chances of success. Everything is achievable!

Standing Up For Your Rights

I haven't really touched on standing up for myself in terms of my rights as a person with a 'disability' since starting this blog almost five years ago now. Partly due to the fact that I am really bad at doing it! 

My most current problem is with studying at university. I am due to be completing my final year of psychology this year and have been having issues with the uni I am currently enrolled in (which is a different uni from my previous studies). Since I am still in the negotiation process I will not name them just yet and hope they do the right thing and support me.

Now I study via distance education as it's easier for me with my sight, with working and with life in general. As a post graduate, I don't really want to be on campus but rather spending the time furthering my career. Even though I am studying distance my course has residential schools as a component, four lots in total over the year. The campus is not local to me, it's about a three hour drive from the city, which of course I can't drive, about a seven hour train ride (into the bush) or a small plane flight (although the airport  is closed at the moment). 

My issue stems from two things - my vision and my anxiety. It is hard for me to travel with my vision and there is no way I feel comfortable getting a train to somewhere I have never been on my own then somehow navigate to the campus and to a hotel. I can't even read a sign! I'm still new to this whole vision impaired experience and travelling on my lonesome is not something I feel comfortable with yet. I'm a small girl and haven't learnt kung fu (but don't worry I'm in the process of that) so I feel very vulnerable. And I'd have to do it four times over the year. I could get someone to take me but frankly I don't have anybody who could take weeks off work to spend in a country town while I sit in lectures for a course I'm supposedly doing through distance education.

So you'd think I have a fairly good argument to be supported to participate in another way right? Well apparently not. I've had numerous comments from the disability officer that they have another student who is 'fully blind' and goes on campus and why can't I study at another uni? Oh ok, too hard for you so palm me off? As for the 'fully blind' comment (said more than once), can you be any more condescending? You don't know my experience or my history, you know nothing about me! You don't know how I cope or all the effort I'm making to deal with my diagnosis and live a normal life! 

I was on the verge of giving up. I had a chat with someone who is involved in disability research and she gave me some useful resources to support my case and present to the uni. One of which was the UN Convention on the Rights of Persons with Disabilities  which Australia is a signatory and must abide by. The main points to note in regards to education is that every person has a right to education and 'reasonable adjustments' should be made for a person with a disability.

I was still wary of picking a fight as such with the uni, and was not keen for any confrontation. Then I thought, I have to be more assertive and fight for myself. So I put together an email quoting the above and specific guidelines relevant to psychology and sent it off. 

The response I have gotten so far is.. well iffy. I'm not really sure where it's heading. Regardless of whether I succeed at least I can say I tried and I made others think of the individual needs of someone with a disability.

If you are in the same situation don't give up, try your best to be assertive and stand your ground. If you get really stuck there are disability advocates who can help and speak on your behalf. We have the same rights as everybody else and organisations need to be made aware of the different needs which are necessary for success. 

Updates on the outcome of my situation to come! 

Let's talk anxiety

I've brought this issue up previously, and I think it's time it comes up again. Mental health is something I am extremely passionate about and anxiety is something I have been dealing with now for years.

I experience panic attacks. For those of you who don't know or have never had a panic attack, it is probably the worst feeling you could ever feel. There was a study done with people who had experienced both a heart attack and panic attacks which found that panic attacks were far more frightening and disabling! I hope this puts it into perspective a little! 

When I have a panic attack, it feels like extreme fear, and my 'flight or fight kicks in'. I'm usually more of a flighter, I get out of the situation as soon as possible to reduce the feeling, but this only feeds the panic and makes it worse causing me to avoid.. well life. 

The physical sensations can vary but include dizziness, trembling hands and legs, numbness in the extremities, dry mouth, rapid heart beat, shallow breathing, blurred vision, churning sensation in the belly, rapid bowel movements - pretty much everything in the body is affected. 

My attacks got even more severe when I had to stop driving. I had lost my independence. I was holding on to that last bit of control I had, I couldn't handle being a passenger in the car and was always the driver. I wasn't venturing far from my home at the time. After I realised it was too unsafe to continue to drive I knew I had to stop. At the time I also quit my job because of my vision issues and anxiety. I decided that it was time for me to start from scratch, and so I hit rock bottom.

Rock bottom felt like a big, dark hole that engulfed me from every direction. All the light was sucked out and I was stuck, too scared to move forward. I got to the point where I could no longer leave the house and even looking out the window brought on an overwhelming feeling of claustrophobia and fear. 

I knew what I had to do, I had to face it. At the time I was studying a subject called Behaviour Modification (awesome subject) and was learning about desensitization. My avoidance was feeding the panic monster within and the monster was winning. I didn't want it to win. I wanted my life back.

So I started small, I would walk down my driveway (which is like a street in itself) and start down my street. At first I would only get ten houses or so down before I started to feel panic, then I'd turn around and come back. I kept doing this until it got a little easier and then went further. 

I was overwhelmed by the traffic on the busy road at the end of my street. There was too much for my failing eyes to take in and process and everything was a blur to me. It made me feel nauseous. So I would sit on the bus stop on the main road and force myself to breath and take it all in. Slowly I became more comfortable with the rapid movement and the little of it I could process. 

Next was getting in a car with someone else at the wheel. Now I'm a HUGE control freak, if I could control the weather I would! It was hard enough just to get inside the car with someone let alone actually drive somewhere. It also comes down to trust. I had to trust someone else to be my eyes. Miss Control Freak had to give up her control! Let's just say there was a lot of tears, screaming and emotions flying around when I tried to do this with my friends and family. It started with going 100 metres down the street and coming back. Anyone I go with is now a pro u-turner (as we say in Australia, 'chuck a u-ey'). 

This is a slow process and I am by no way back to normal. It tests your patience, your courage, your bravery and your belief. I am slowly working my way back, and I want to emphasise that this process is slow and draining. It doesn't happen overnight. There are always times when I feel like I'm going backwards but I need to keep positive and push through. Everybody has bad days and I know I need not take it to heart. Just get up the next day and try again.

Unless you have been through a similar situation, it can be hard to truly understand what it's like. Time and time again I've been told to 'just get over it', 'try harder' and 'just do it'. If it was that easy do you not think I would?! Mental illness is a REAL illness, it's not for attention, it's not anyone's fault and it is just as disabling as a physical illness, if not worse. Most importantly, it should not be something that we are afraid to share, after all, in Australia 1 in 2 people will experience anxiety or depression in their lifetime. Support is the key.

Having a double whammy of illness is hard. But you're not alone. There is help available and most of all support. I get a lot of emails saying that my blog provides 'inspiration', but it's everybody else who inspires me to keep going and keep fighting. Community is one of the strongest forces to produce change and ensure happiness.

Let's continue to stick together to make a difference and keep living our amazing lives!

Vitamin A and Stargardt's - Part 1

The only advice I was given when diagnosed with SD was that vitamin A was causing my vision loss and to not take supplements with Vitamin A. This totally contradicts the widely known fact that Vitamin A is essential for eyes. It's not that this fact is incorrect, it's that it doesn't wholly apply to SD. 

Since I love my science and research, I took it upon myself to spend my spare time reading every published article on SD and vitamin A to find out more about the mechanisms at play in the eye causing problems and what evidence exists to support these theories. The earliest article I found was published in 2008 and all used mouse models for investigations.

A paper published in Cell Death and Disease this year gives a good overview of the mechanism leading to vision loss and how Vitamin A is implicated. Essentially, SD is caused by an accumulation in the RPE of Vitamin A dimers (dimers are two molecules joined chemically), which are known as A2E (shortened version of the chemical name). Using an in vivo model, they found that increased A2E led to greater cell death. A word that always comes up when talking about SD is lipofuscin which is the yellow-brownish pigment deposits seen on a retinal scan used to diagnose the condition. Tying it all together, A2E derived from vitamin A is a retinal lipofuscin which is causing the damage and subsequent vision loss. These findings support earlier studies in mice such as articles n the Journal of Biological Chemistry and Investigative Ophthalmology and Visual Science which both looked at the effects of vitamin A, SD and mice demonstrating that higher doses of vitamin A led to increased lipofuscin development. 

Another paper in the Journal of Biological Chemistry also used a mouse model to investigate the effects of A2E and  also oxidative stress. It was found that A2E increased inflammation in the RPE, which is an important finding for prospective treatment solutions.

 

There are no studies performed in humans on the effects of vitamin A probably because it is not exactly ethical to get a group of SD patients and give them high doses of vitamin A and see whether they deteriorate! Despite this, the research is available to support that vitamin A is indeed causing damage in the eye and leading to vision loss. The continuing research has led to greater understanding on the different components at play and, no doubt, will help in the future to develop therapies. 

So now we know vitamin A is not our best friend, where do we go from here? Part 2 will discuss diet and vitamin A and how we can ensure not to overload vitamin A and contribute to the SD process.

Second chance for Mr Cane

I have been walking a lot more since unwillingly giving up driving. I have grown in confidence with walking alone but I still find road crossing difficult. I'd given the cane the flick because we just weren't getting along. I haven't used it in some months now although there has been a little voice in the back of my mind telling me to pull it out again and give it another go. 

Yesterday was the big day when Mr. Cane got his second chance to win me over. I must admit, he did a damn good job at it! I went for a walk with a friend who hadn't encountered anyone using a cane before so it was interesting for her to see how it was used and the reactions of others. 

One of the big issues I've been having is that when I'm walking, others have no idea I'm vision impaired and if I make a mistake crossing they will think I'm an idiot. I like the fact the cane is a way of saying "Hey, I don't see good, look out for me". This was evident when we crossed a main road, without traffic lights, but with an island in the middle (so we could go half the road at a time). This particular spot had been an issue for me because the road is so busy I can't simply rely on my hearing and limited sight. In a way the cane was like my indicator signal of a car. People knew to be mindful of me. We had a great experience, each time we crossed (we did it a few times!), when we were on the island, a person would stop the traffic to let us cross. It really was a testament to how kind people can be. These small gestures increased my confidence with crossing roads and also gave me more trust in those around me. 

We also noticed people's reactions when walking toward us. Each person we passed, even someone with a pram, moved off the footpath out of the way to let me pass. I don't know what I expected, that people would walk into me or make comments, but experiencing it first hand made me feel more at ease with the whole idea of using the cane and reduced the stigma to using it.

Mr Cane and I have gone on another date today, with similar success, and we are on the road to a happy and long partnership. Up until this point, I wasn't ready to accept the fact I may need extra help getting around and there is nothing wrong with that. Now is the right time for me and I will embrace it and continue to gain more confidence and independence. 

Audible Book Giveaway

I'm very excited to share that Audible has given free audio books to give away to five readers.

For those of you that haven't tried Audible, it has thousands of audio books, current and past, and you can access them on your phone or tablet through their easy to use app. I have been using Audible for some time now and without it I wouldn't be able to have continued 'reading' the books I love.

All you need to do is become a 'follower' of this blog (right hand side), and comment below with your name, age, condition and a book you'd love to have as an audio book.

You have until midnight Sunday 10 August to enter.

Good luck :)