I have been so preoccupied the past months with my grandma but I have not forgotten about this! I've actually learnt a lot from her recently.
The more time I've spent with her the more I appreciate my life. She was taken down overnight, lost all her independence and freedom, and I've been sooking for years over my issues. But I've come to realise how it's not the condition or situation you're faced with, it's the way you react to it and you have the choice of how you want to react and then how you want to feel. She might not be able to walk anymore, stand, get in a car, go out, but she continues to have a smile and laugh. Sure she has some down days but they are few compared to the time we spend laughing (well she mostly laughs at me!).
In all the drama of the past 6 months I've stopped focusing on my issues and my down falls and gotten on with life, and I've found that in doing that my eyes haven't deteriorated, I'm doing everything I've always done and most importantly it doesn't stress me. I've realised, so what I see like crap but it's ok, it's just my tiny flaw and everybody in the world has flaws. And then I look at my nanna while she's teasing me about not having a boyfriend or sitting on her lap and squashing her, and I realise how lucky I am and how you never know when life will be taken from you so there's no use stressing over the insignificant things but to just do what you love.
I no longer think about my eyes all the time. I've decided to keep doing what I want, I'm going to keep studying and working. And most importantly I'll never let anybody tell me I can't do something because of my eyes.
Tuesday, December 18, 2012
Monday, September 3, 2012
Bionic eye update
Bionic Vision Australia has had vast media coverage in the past week with there bionic eye prototype. They have inserted the device into the first totally blind patient and she has been able to see flashing lights.
Check out their facebook page for links to articles:
Bionic Vision Australia Facebook Page
And here is their website:
Bionic Vision Australia
Check out their facebook page for links to articles:
Bionic Vision Australia Facebook Page
And here is their website:
Bionic Vision Australia
Thursday, August 16, 2012
National Disability Insurance Scheme Petition
To the Australians - you have probably heard the debate about the National Disability Insurance Scheme in the media. I will admit I didn't really think much of it as I hate politics and I didn't really know what it would mean for me being vision impaired.
Guide Dogs have started a campaign to ensure that people who are blind and have vision impairments are not forgotten. As I have previously mentioned, I had help from Guide Dogs with mobility and getting a cane. This was a free service and they came to me. It was so beneficial even though I still have some sight, and the Guide Dogs people were so lovely and supportive and put me in touch with other organizations and people that could help. Which is why I strongly support taking part in this campaign as to keep the support and funding for Guide Dogs to make their wonderful services easily accessible to everybody.
Check out the link below and ENTER YOUR DETAILS!!!!
Vision Loss Australia
Guide Dogs have started a campaign to ensure that people who are blind and have vision impairments are not forgotten. As I have previously mentioned, I had help from Guide Dogs with mobility and getting a cane. This was a free service and they came to me. It was so beneficial even though I still have some sight, and the Guide Dogs people were so lovely and supportive and put me in touch with other organizations and people that could help. Which is why I strongly support taking part in this campaign as to keep the support and funding for Guide Dogs to make their wonderful services easily accessible to everybody.
Check out the link below and ENTER YOUR DETAILS!!!!
Vision Loss Australia
My absence
As some of you have noticed I haven't been writing lately. Mainly because I haven't found what I want to say.
My grandmother was diagnosed with a grade 4 (the worst) brain tumour 8 weeks ago and has been in hospital since. Her life and my families lives have been turned upside down overnight. The stress, anguish and emotions can not even be described.
She is a strong, tough, loving and caring person and to see her go through this sucks. She has shown me how precious life is and that I need to go out there and live, regardless of any adversities I may face. And you can't argue with a woman in a hospital bed with no hair!
So I've come to realise that even though I have this disability that effects me everyday, I still have my health and I can still be happy. I can still do everything I want to do despite what other people may tell me. I no longer see my disability as that - a disability- it's just another challenge I have to face, and I will, and I will succeed. Sure I can't be positive everyday and some days I wish I could see better or things were easier, but the fact is I can still live. I can still achieve my hopes and dreams, I might just have to take a different path to get there.
Never give up and try and be positive as much as you can. Accept what you have and find a way to nurture it and turn it into a positive experience. No matter what people say, even though we may be vision impaired we can still do absolutely ANYTHING we want! Where there's a will there's a way!
My grandmother was diagnosed with a grade 4 (the worst) brain tumour 8 weeks ago and has been in hospital since. Her life and my families lives have been turned upside down overnight. The stress, anguish and emotions can not even be described.
She is a strong, tough, loving and caring person and to see her go through this sucks. She has shown me how precious life is and that I need to go out there and live, regardless of any adversities I may face. And you can't argue with a woman in a hospital bed with no hair!
So I've come to realise that even though I have this disability that effects me everyday, I still have my health and I can still be happy. I can still do everything I want to do despite what other people may tell me. I no longer see my disability as that - a disability- it's just another challenge I have to face, and I will, and I will succeed. Sure I can't be positive everyday and some days I wish I could see better or things were easier, but the fact is I can still live. I can still achieve my hopes and dreams, I might just have to take a different path to get there.
Never give up and try and be positive as much as you can. Accept what you have and find a way to nurture it and turn it into a positive experience. No matter what people say, even though we may be vision impaired we can still do absolutely ANYTHING we want! Where there's a will there's a way!
Friday, June 8, 2012
Being genetically counselled
I had made an appointment to see a genetic counsellor about 3 months ago and the time came this week. I hadn't really given much thought to it to be honest. The main reason I went was to do genetic testing to find out if I actually have the known Stargardt's mutated gene, as I feel like it will be the final thing in accepting my diagnosis, even though I know I do have it.
So I went along to my appointment not knowing what to expect. Normally when I am seeing a doctor I have what I want to know planned out. This time I was under prepared for my usual standards.
The genetic counsellor was really great; she had easy to understand diagrams that showed the most likely way I inherited Stargardt's, and then showed me possibilities of when I have children. The good news is that the chances of my partner being a carrier is quite rare, and thus it's likely my children won't have any chance of inheriting Stargardt's. There's the possibility of testing my partner in future to see if he is a carrier, but to be honest I don't think it would matter because it wouldn't affect my decision to have children if they were at risk. I cope well and have a great life!
The other question is whether to test my younger siblings. There's currently two debates in my household
1. There's not point in knowing because you can't stop it or change it
2. If you knew you could make decisions about careers etc and also use preventative measures like wearing sunglasses at all time and so forth.
It's a hard decision and there will be more debates in our home.
So I have to give blood and it will be sent to the US for testing which will take a few months, which is not good for someone like me who is so impatient.
So I went along to my appointment not knowing what to expect. Normally when I am seeing a doctor I have what I want to know planned out. This time I was under prepared for my usual standards.
The genetic counsellor was really great; she had easy to understand diagrams that showed the most likely way I inherited Stargardt's, and then showed me possibilities of when I have children. The good news is that the chances of my partner being a carrier is quite rare, and thus it's likely my children won't have any chance of inheriting Stargardt's. There's the possibility of testing my partner in future to see if he is a carrier, but to be honest I don't think it would matter because it wouldn't affect my decision to have children if they were at risk. I cope well and have a great life!
The other question is whether to test my younger siblings. There's currently two debates in my household
1. There's not point in knowing because you can't stop it or change it
2. If you knew you could make decisions about careers etc and also use preventative measures like wearing sunglasses at all time and so forth.
It's a hard decision and there will be more debates in our home.
So I have to give blood and it will be sent to the US for testing which will take a few months, which is not good for someone like me who is so impatient.
Sunday, June 3, 2012
Bionic Eye
Have a look at this recent video on the bionic eye. It's crazy how maazing technology can be.
Increasing my magnification
As I have mentioned I use Zoomtext on my work and home computers. I have been using it a x2 magnification since I first got it, especially since I didn't like to slide all over the place too much. Recently I have noticed that I am leaning quite close to the computer to read. I didn't want to admit that I probably needed to increase my magnification.
I persevered for a while, but finally thought I'd give it a go just to see what it was like. So I increased the magnification to x3. What a difference it made. I had to slide across the screen more at work, although I could stay put in my chair and not be leaning in touching the screen with my nose!
I'll admit I'm in denial. I didn't want to increase the magnification because then I'd have to awknowledge my eyes are becoming worse. I know it's silly because it would reduce my strain but it is really hard to accept!!!
I also get slightly paranoid, especially at work, as my screen is so large anybody can read what I'm doing (not that I am ever doing anything wrong!), but it's just uncomfortable knowing that if someone looked over they could read it easily.
Of course I've kept my Zoomtext at x2. I'm really quite stubborn.
I persevered for a while, but finally thought I'd give it a go just to see what it was like. So I increased the magnification to x3. What a difference it made. I had to slide across the screen more at work, although I could stay put in my chair and not be leaning in touching the screen with my nose!
I'll admit I'm in denial. I didn't want to increase the magnification because then I'd have to awknowledge my eyes are becoming worse. I know it's silly because it would reduce my strain but it is really hard to accept!!!
I also get slightly paranoid, especially at work, as my screen is so large anybody can read what I'm doing (not that I am ever doing anything wrong!), but it's just uncomfortable knowing that if someone looked over they could read it easily.
Of course I've kept my Zoomtext at x2. I'm really quite stubborn.
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