Sunday, March 15, 2015

How a person reads with limited central vision

I had a thought whilst lying in bed wide awake. I want others to get a sense of what it's like to live with Stargardt's. It's really hard to explain what it is like to lose something that you take for granted and use every second of the day. Then I thought to a chain email that circulated a long time ago, some of you might remember - a passage of a story was sent except the middle letters of the word were jumbled. Once you got to the end of the passage, it said that you had just read the whole story essentially spelled incorrectly, but you were able to read it.

This demonstrates how I read - my blind spot covers the middle of words, so I see the start of the word, possibly the end, and it's all a jumble. Yet I can still read it (it still needs to be in a larger font).

I've put together an example for you, have a go at reading this (beware I threw some tricky words in!):

  • Sagdtrart's Dasisee is a tpye of macualr degaeentiorn. It afefcts ynoug polepe, lkie me, and cehagns our levis frveoer. Tnihk aubot tihs, jsut as you are gitnteg uesd to lnviig yuor lfie, fgrniiug out yuor dermas and anirtapsois, tehn rnmldoay you ncoite sthniemog a liltte off in yuor viosin. The nxet tnhig you konw you're bneig tlod you hvae an ibunclrae dsasiee and wlil lsoe yuor shigt.

And just in case you got stuck, here it is written properly:

  • Stargardt's Disease is a type of macular degeneration. It affects young people, like me, and changes our lives forever. Think about this, just as you are getting used to living your life, figuring out your dreams and aspirations, then randomly you notice something a little off in your vision. The next thing you know you're being told you have an incurable disease and will lose your sight.

Imagine reading like that all the time, it does get tiring. It's as though the brain has adapted to read in a different way. The image below is of a meme that was circulated and a response was written by the Cognition and Brain Sciences Unit in Cambridge, UK, which you can read here. They explain some of the reasons behind how we are capable of reading words with jumbled letters, although we apparently read 11% slower. This makes sense as I have noticed it takes me longer to read. 

I'd be really interested for those who aren't vision impaired to share their experience reading this. I hope this gives a little more understanding into how myself and others with SD read.

Saturday, March 7, 2015

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:

Wednesday, March 4, 2015

Real People #2

This month's story comes from a good friend of mine who has been a great support to me from my early days of diagnosis. I hope he can inspire you too.

Jono Goerlach, 32, Canberra, Australia

Tell us a bit about your condition and your symptoms.

At age 15 I was diagnosed with Usher Syndrome Type 2. This condition combines both Retinitis Pigmentosa, and slight-to-moderate hearing loss, which I have had since birth and wear hearing aids to combat this.

What is your current situation, what do you do?

At present, my primary focus is on being a full-time Triathlete. I've been involved in the sport for almost 3 years, building towards my end goal of qualifying for a Paralympic Games. In an effort to give myself the best opportunity to achieve this goal I chose to move to Canberra one year ago where my coach and his triathlon squad are based.

Since moving to Canberra I have also signed up to a double bachelor degree at the University of Canberra, studying Sport & Exercise Science/Sports Management.
On top of these two time-consuming responsibilities I work part-time as a Soft-Tissue Therapist to help pay the bills and maintain at least a little social life.

What was your biggest hurdle and how did you over come it?

My biggest hurdle was around the age of 26 when I reached a point in my life where the reality of my impending blindness started to come to fruition - and I wasn't even prepared for it. Initially, admitting that I was depressed and dealing with anxiety was the first step to getting back on track. The next step was to find something I was passionate about, set goals to work towards, so I could have something to focus on - sport was my passion before my diagnosis, and sport was the passion that would be the answer to moving forward. Since returning to sport my life has completely changed, to the point where I feel like I've lived two lives. I'm only just getting started :)

What are your goals for the future?

My main goal is to represent Australia at the Paralympic Games. Up until October 2014 I was focused on Rio 2016, but unfortunately that opportunity has been taken away simply due to fact that our sport has five types of disability but only three types/classes were offered a medal event. The positive, though, is that I do have an opportunity to go to the following Paralympics in Tokyo 2020.

I am also driven to finish my degrees so I can start working with athletes with a disability in areas of sporting development/management. I am also passionate about reaching out to the wider vision-impaired community to educate them and their supporters about the many opportunities there are available to them - having a disability is an opportunity to find your true abilities.

What would be your best bit of of advice for others going on a similar journey?

Find your passion and let it take over your life. Having that focus will produce more opportunities than you could imagine - life is defined by opportunities, even the ones you miss.

If you'd like to follow Jono's journey to triathlon greatness follow his Facebook page here.

Saturday, February 28, 2015

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:


Tuesday, February 10, 2015

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!

Saturday, January 31, 2015

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! 

Thursday, January 15, 2015

Real People # 1

In the coming months I will be sharing stories of others living with Stargardt's and other retinal dystrophies. These people have all inspired me on my journey and no doubt will inspire you too!

First up is Jenna!

Jenna Lawson, 22, Florida, United States

What is your diagnosis and how does it affect you?

In March of 2011, I was diagnosed with Stargardt disease, a type of retinal dystrophy. This disease impacts my central vision and, at this point, I have no central vision left. When I first began losing my vision and I was told that neither glasses nor surgery would fix my problem, I was very scared and upset. At that point in my life, I was a year out of high school, I wasn't going to school (even though I really wanted to), and I was trying to enroll in a dental assisting program that I thought would bring some direction to my life. I had successfully enrolled in a program and was due to start in a few days when I received the news about my eyes, so I had to withdraw from my classes until I figured out what was happening with my vision. In addition to feeling scared, I felt angry because all I wanted to do was get my life on track, but all of these events were preventing me from doing so.

I, thankfully, received an official diagnosis two months later, and I remember thinking: "This is my life now. There is no looking back." I was so relieved to simply know what I was dealing with that acceptance came very easily. I was so eager to pursue my life that something like Stargardt was not going to stop me. Funny thing is, Stargardt disease turned out to be one of the biggest blessings of my life because, not only did it enable me to attend school, but it helped me realize my true strength and tenacity. It's strange how something that, at first, seemed so negative turned out to be such a positive and motivational experience.  I definitely encounter challenges from time to time, but I have accepted my eyes for what they are and this alone has given me great peace.

Where do you currently work or study and how do you find it with your vision impairment?

Currently, I attend the University of Central Florida, and I'm pursuing a Bachelor's in Social Science Education. My goal is to become a history teacher. Before UCF, I attended Weber State University in Utah. When I lived in Utah, I walked three miles to the nearest bus stop, in the cold and the snow, and then rode the bus for an hour to school. I kept getting sick because of the cold and I hated the long commute, so I moved to Florida where I'm able to wear sandals and shorts almost everyday. I take classes online, and I also take classes at a location that is about three miles from where I live. I ride my bike to and from this location, rain or shine. School is my job, at the moment, but I spend a lot of time volunteering at an elementary school. I ride my bike there, as well, because it's close to where I live. If I have to go anywhere else, like the grocery store or the dentist, I have to have a friend or family member take me.

What hobbies do you have?

I love to paint and draw, write stories, read, spend time at the beach, hang out with friends and family, watch movies, travel,  study world history, and belly dance. I continue to enjoy all of the activities I did before I began losing my vision. I started belly dancing about a year ago because I wanted to improve the health of my spine (I spend a lot of time hunching over notes and textbooks because I have trouble seeing).

What has been the biggest hurdle you have faced?

The biggest hurdle I have faced has been transportation. Transportation has been the most persistent and frustrating problem. In the United States, there is sort of this expectation that anyone 18 or older should be largely dependent on themselves. Lack of transportation makes it so you have to depend a lot on other people, and a lack of transportation can also limit your access to job opportunities. Learning to accept a state of dependence is difficult, and it can sometimes feel demeaning when you live in a culture that places so much emphasis on independence and "finding your own way". Not being able to provide transportation for yourself also shows who your true friends are; those that truly care will undoubtedly find the situation tricky, at times, but they will be there to support you no matter what, whereas others will see you as a burden and will disappear from your life. I take this hurdle one day at a time. As far as relationships and job opportunities go, I have come to view my transportation issue as a filter. In other words, opportunities and relationships will continue to be in my life, regardless of my eyesight and the challenges I must face on a daily basis.

What's the best advice you'd give to others in this situation?

I have learned some very important things over the past few years that I would love to share:

  • Acceptance leads to success. Looking back on what used to be doesn't make things any easier, and it most certainly will not make you happy.
  • Be your own advocate. If you need help, don't be afraid to let people know. There are so many resources for people who are visually impaired. It's truly an amazing experience when you connect with people who are dedicated to your success and well-being.
  • Realize that things could be a lot worse. Honestly, I'm lucky to have Stargardt because, while I may lose an extent of my eyesight, I will never lose all of it. There are people out there who have suffered much worse and, amazingly, they have powered through it and come out on top. These people have been my greatest source of inspiration
  • Never let others minimize your frustrations, challenges, or experiences.
  • Pursue your interests and continue to live your life.
  • Honor your sadness, frustration, and fear, but don't allow these emotions to consume you.

Thanks Jenna for sharing. You have been an amazing friend and support from the other side of the world!

Here are some of Jenna's beautiful artworks. I've previously shared some of her work make sure to also check it out here.

If you want to connect with Jenna on Facebook click here.