Sunday, April 29, 2012

Sore Eyes

I have been having problems recently with constant sore eyes and migraines. It's really starting to get on my nerves because I can't be outside in the sun or even in bright rooms. The only thing that seems to work is to lay down in the dark and close my eyes, which is very unproductive.

I find I constantly strain my eyes and the only way for me not to do this is to pretty much do nothing. Which is not going to happen.

So I've taken to wearing sunglasses in the house to try and minimise my light exposure. Right now I'm wearing sunglasses in my dark room on the computer (I must look pretty strange), but let me tell you it's helping! Bright light is really painful. Maybe I'm related to Edward Cullen?

As for the constant headaches and eye strain when I don't have a choice but to keep doing what I'm doing - I have yet to fins a solution. I will though!

Until then I will wear sunglasses indoors, and if somebody is boring me I can close my eyes and doze off and they won't even notice!

Tuesday, April 17, 2012

Guide Dogs NSW/ACT

I had my first contact with Guide Dogs last week, but no, unfortunately not to get a cute little retriever (that I want so badly to cuddle). Not only do they do the obvious guide dogs but also mobility training, advocacy and information services amongst other stuff.

My first appointment was to get to know me and what I might need. It's great because they come to you and help you become more comfortable within your own environment. We went for a walk on the streets around my home, and then I was asked if I wanted to try using a stick. I was a bit scared 1. what if people noticed me and 2. I thought I might look silly, but I realised how stupid these thoughts were and who cares what anyone else thinks?! Not me!

I'm glad I gave the stick a go it was really helpful and I didn't realise that when I walk I pay most my attention to the ground. It means I can look forward instead of watching my own feet.

Guide Dogs offer mobility training, where they come out to you and go through techniques to get around in your daily life. I have organised to do this as I thought I may not need everything at present but it is a good time to learn the skills and start practicing them.

Did I mention I ordered my own stick, yes and it's going to be PURPLE! (Very excited).

I highly recommend Guide Dogs, which are in every state in Australia. They are very helpful, compassionate and knowledgeable and I look forward to keeping in contact with the organisation.

Guide Dogs NSW/ACT

Guide Dogs Victoria

Guide Dogs SA/NT

Guide Dogs Tasmania

Being Legally Blind

I found out last week that I am classified as legally blind. I have actually been legally blind for some time but did not know.

I think I knew in the back of mind that I was, after all I can only read the big letter on the eye chart and if I don't have glasses on the world is a foggy blur, yet I wasn't ready to actually KNOW I was legally blind. I phoned my optometrist to find out my sight and it is 6/60 (20/200).

It's crazy to think I am "legally blind" as I live my life almost as if I would if  I had perfect vision. I have a job in a hospital, I'm studying a masters degree and I like to think I can appreciate nature around me. It made me realise that I, like so many other people, had the perception that if you are blind, you see nothing and you struggle in basic daily activities. How wrong that is!

It is actually quite amazing how much I have subconsciously adapted to my condition. It took a few years for my diagnosis and I probably had the condition way before that. I think because I didn't know what was wrong I found ways to do everything, like read by using my peripheral. I wasn't even aware that I was doing it! It does cause me strain and I have constant headaches but I will find a way to rid myself of them!

Just because I am legally blind doesn't mean I'm giving up on what I want in life, I just have to find a different way to get to it.

Thursday, April 12, 2012

Beautiful Art by a Stargardt's Friend :)

I'd like to share artworks created by Jenna who has Stargart's Disease. These are a few of my favourites.

She creates such gorgeous, emotional works and to think she doesn't have her central vision I can't believe how absolutely amazing they are. It is truly inspiring.

Thanks Jenna!

Sunday, April 1, 2012


I had a phone call from my fabulous optometrist last week about saffron. He told me the about the recent study on saffron supplements and AMD and said I should add saffron to my diet.

I was very excited as this is something easy to do. I got on google and searched for saffron supplements and found an Aussie company who make them as "Macular Health" (Nature's Goodness). They only cost me $40 with postage and I got them within a week.

As I am a self confessed nerd, I found the published article online and this is what I gathered:
  • Saffron contains the antioxidants crocin and crocetin which is thought to be a retinal neuroprotectant against oxidative damage. This has been found in a rat model.
  • A daily supplement of 20mg of saffron was given over 90 days and then changes in the fERG tests were measured.
  • They found significant changes in the fERG results.
  • A previous study indicated that saffron's protective effect on the retina is only temporary and disappears if supplementation is stopped, which was shown in a rat model.
  • Concludes that "saffron supplementation may induce a short term significant improvement in retinal function in early AMD" and more studies are needed.
This is definitely a step in the right direction for something that could possibly help Stargardt's. The same university in Italy is recruiting for a study on saffron in Stargardt's. Here's the link for anybody interested in participating, or possibly I might go on an extended holiday to Italy.

Saffron Supplementation In Stargardt's Disease

And here is the link for the article on AMD.

Influence of saffron supplementation...

In the meantime, I will continue to take my saffron supplements and see what I can see!

My study solution

I found a quick and easy solution to my study struggles and all I needed to do was ask.

It was as simple as contacting my course coordinator and asking to have everything sent to me in enlarged font so I could print it off. And the next day I had a whole semester's worth of notes for two subjects.

I really appreciate how helpful they were (The University of Sydney) as I know from experience some people put my requests in the "too hard" basket no matter how simple the solution may be.

So thank you, and if you are having the same problems, don't hesitate to speak out and let people know how your sight is affecting you.