It's the little things

One thing I have come to realise is that the littlest tasks can cause me frustration. As my eyesight has deteriorated I've noticed that tasks I normally wouldn't think about while doing are becoming more difficult. At first I get surprised that I'm having difficulty, then determined to do it, then just plain frustrated. The world really was not created with vision impaired and blind people in mind. 

I now find it difficult to decipher between coins when paying for things. Here in Australia, our 1 dollar and 2 dollar coins are gold (the 1 dollar is larger for some reason) and the rest silver. I can't tell the difference between the two gold coins even though they are different sizes unless I have the two in my fingers. Same with the silvers, I can't tell the difference between a 5 cent and 10 cent coins. Luckily I can still differentiated between the colours of the notes. 

Another thing I have difficulties with is using the ATM. I find myself with my nose almost touching the screen or withdrawing a surprise amount of cash. Or even better still, I press the wrong button and it cancels my transaction and I need to start again. I've taken to using the same ATM machines because they are predictable, unlike most of life, and I have learnt which buttons I need to press.

And then there is my number 1 addiction made harder - using my credit card to shop online. What smart person thought it would be clever to put the numbers so they are almost invisible even to well sighted people?! By the time I've correctly entered my card number I've usually given up, which is probably a good thing for my addiction. 

As much as I don't want to rely on others, I need to accept that I may well need to and that it is ok to do so. I could always carry around my magnifier and whip it out when I need it although I think I'd prefer to ask for help! It's intriguing how the littlest things can cause so much continual frustration. The sooner I realise that it's not worth wasting energy on, I can find a way to improve life. Giant credit cards anybody?!

Update on Current Clinical Trials

It is an exciting time in medicine and especially for Stargardt's sufferers and others with inherited retinal diseases. Here is a summary of current trials:

Phase I/IIa study of StarGen (Gene Therapy)

This study is being conducted by Oxford Biomedica at two sites, Oregon Health and Science University (US) and Institut de la Vision (France). Recruitment was suspended earlier this year to investigate impurities in the substance. The study will resume in about three months. 

StarGen - Foundation Fighting Blindness

Sub retinal injection of hESC into RPE (Stem Cells) 

The phase I trial being conducted by Advanced Cell Technology is continuing. The second cohort was recruited in July. There have been no further updates since the last press release. 

Stem Cell Therapy - Advanced Cell Technology

Stem Cell Ophthalmology Treatment Study SCOTS

This stem cell study is using cells derived from autologous (your own) bone marrow which is then injected into the retina. The study is looking at whether there is improvement in visual acuity and visual fields. It is not only looking at Stargardt's patients but also patients with optic nerve diseases and other retinal diseases. The study is being conducted by the Retinal Associates of South Florida (US). This will be an interesting study to monitor.

Bone Marrow Stem Cells - Retinal Associates of South Florida

Safety and Tolerability of MA09-hRPE cells (Stem Cells)

This is another embryonic stem cell trial currently recruiting in Korea, conducted by CHA Bio and Diostech. The trial is similar to the ACT trial.

Stem Cells - CHA Bio and Diostech

Saffron Supplementation and SD

Another study currently recruiting is looking at the effects of saffon supplementation on Stargardt's specifically. The study is being conducted at the Catholic University of the Sacred Heart in Italy. The study is a crossover design meaning that each participant will receive the placebo and treatment for a period of time. I have personally tried saffron and feel as though my sight improved so I am looking forward to the results of this study.

Saffron Supplement Trial

ProgSTAR Natural History Study

This study is funded by the Foundation Fighting Blindness and aims to investigate the disease further and also follow the progression of the disease. This information can then be used in future intervention trials. This is a multi centre trial across the US, UK and Germany. This would be a great study to participate in if you are local to one of the centres. 

ProgSTAR - Foundation Fighting Blindness

Natural History of Eye Diseases Related to ABCA4 Mutations

Here is another study looking at disease progression in Stargardt's . It is being conducted by the National Eye Institute in Maryland (US). To participate you must be at least 12 years old and follow up is over five years. 

National Eye Institute - Natural History Study

Novel Quantification Methods to Detect Progression in SD

This is another trial currently recruiting which is using a specific technique is learning more about the progression of Stargardt's. The trial is being conducted by the Kellogg Eye Centre in Michigan (US). This study is focusing on kids and teens (ages 5-18).

Kellogg Eye Centre Trial

High Resolution Retinal Imaging Study

This study is looking at the use of an adaptive optics scanning laser opthalmoscope AOSLO to take pictures of the retina. The aim is then to analyse these pictures to better understand Stargardt's. This study is also being conducted by the National Eye Institute. 

AOSLO study - National Eye Institute

Looking forward to seeing the results of all the trials.I will keep you all posted. 

The Grieving Process

Usually when we think about grief we only think about the loss of a loved one. We can also experience extreme grief in other situations, including the one we face after being diagnosed with a vision impairment which will ultimately send us legally blind. In fact, we are really grieving the loss of our vision, our independence, our hopes and dreams for the future.

I hope my experience was unique, although I highly doubt it was, but I truly felt abandoned at my time of diagnosis, like I was left in the dark by health professionals and given no guidance, no encouragement and no hope. As I have mentioned previously, I was told “you have a condition called Stargardt’s Disease, there’s no treatment, so there’s not really any point in us seeing you again unless you face problems in the future”. I walked out of the ophthalmologist’s office feeling lost, confused and helpless. Being a person who you could probably describe as a perfectionist, I had my whole life planned, aspirations, goals, career paths, and it was all taken from me without any real explanation. I began grieving the impending loss of my vision and all that would follow.

A common model of grief (Kubler-Ross model) talks about five stages of grief. When grieving, you can go through the stages and then revert to a previous stage. The experience is different for each individual. Denial is commonly the first stage. “I don’t have this condition I see fine” or “they must have it wrong, we have no family history of eye disorders” were common thoughts I had. I really think I spent the last two years in and out of denial until I received the result of my genetic testing which finally confirmed that I have the faulty gene.

Anger then follows, “why me” or “thanks mum and dad for giving me rubbish genes”. The thought of “why me” went around and around in circles in my head. I was also angry about the timing, just finishing my degree and with my independent adult life ahead of me.

Another stage of bargaining also takes place. This made me search for hours on end for alternative methods to halt the process, diets , supplements, miracle cures that were hiding somewhere. Although this is not necessarily detrimental, if it gets to the point of being all consuming it can be quite distressing.

Of course depression shows its head in the process. This stage is probably the most likely to reappear. Just as you think you are coping ok, bam, he’s back. I’ve allowed myself to have the days where I do get down about the situation, as long as I promise myself I will get back up. It is ok to feel sad, we are losing an integral sense, but we need to remember that there’s a way through this.

Finally we meet acceptance. I don’t think I’m there yet. I may tell myself and others around me that I have accepted my condition, but deep within me I know I haven’t. It’s also hard to truly accept a degenerative condition because just as you start feeling at ease with the situation, your vision deteriorates and you feel as though you are back to square one.

All in all, it is absolutely normal and healthy to feel each one of these emotions and different times. I highly recommend speaking to a professional. I think it should be mandatory that when a person is diagnosed with a vision impairment they are offered counselling and support. Also talking to family and friends can help with the process, after all, it is likely they are grieving with you and feel even more helpless than you do as they don’t know how you feel or how to help. We should all remember that to feel this way is normal and know that you are not alone.

Below are some helpful links.

Headspace Australia - Grief

Beyond Blue Australia

Mental Health America

Mental Health Foundation UK

Watch out, cane about!

Guide Dogs have launched their "Watch out, cane about" campaign with an informative and positive video. Everyday pedestrians are blind folded and attempt to cross a road with a cane and a guide. It is really interesting to see the reactions of others. The is also a guide on what to do if you see a person crossing the road with a cane. 

Great video to share with family and friends to help them better understand what it is like using a cane. 

Thanks Guide Dogs!

Finally a pen I can see!

When I had my consultation with the vision impairment specialist, he suggested I invest in a Pentel pen. Usually he gives a freebie to all his clients but unfortunately he had run out. He said I was able to get the pen from my local Officeworks (stationary shop) and they came in a range of colours.

To my great disappointment, my local Officeworks didn't stock the particular pen, and I had to order them online in a box of 25 all black. So of course I procrastinated because 25 black pens was not appealing to me.

Today turned out to be my lucky day. My friend and I ventured to Officeworks to discover a huge new wall full of pens. Of course we had to try every one out and we found the Pentel I was looking for!

The Pentel's I bought are the S520 Sign Pen (0.8mm). They look like a marker but they write like a pen except in a more bold ink, making it easier to read. It also doesn't seep through the page unlike standard markers. The pens cost me $2.71 each (I bought 7!). 

Definitely worth a try! I highly recommend. 

IOS 7 and VIPs

Today I updated to IOS 7 on my iPad (I use a Samsung mobile). I'm not actually sure if previous versions have as many accessibility features, but I found the most useful feature for my vision was the "Larger type" text feature. It gives you the option to increase the font size in any app that has enabled the feature. Of course I made it almost to the largest and then I tested out all my favourite apps. 

The standard email app is now awesome. The font is enlarged in the content and title of the email and it makes it really easy to use and puts less strain on my eyes. 

The other app I barely used previously was the standard calendar. I found I could never read at a glance what appointments I had so I never used it. The design has changed and it is visually appealing plus the appointments are larger so I can actually see what I am supposed to be doing!

Other apps I use that I've found to be easier to see are: Music, eBay, Maps and Podcasts. I'm assuming the update would also be useful for iPhones, but I found the biggest problem I had with the iPhone was the size of the screen in comparison to the text sizes, which is why I switched to the Samsung.

IOS 7 is definitely worth an update.

For the girls (and guys?!)

Something I have been battling for a while is grooming. It's ever so hard to do the usual girly grooming that when you are sighted you take for granted. It seems like a petty issue but it can have a whole lot of impacts especially with self esteem.

My biggest problem now is I can't tell when it's time to visit the beautician. It gets to the point where one of my younger brothers will say "geez you need a wax" and it's off to the beautician I go. There's no chance I can do it myself any more as I can't see the little hairs. It then gets me thinking what have I been looking like every day?! Most people don't like pointing out things like this so I now rely on my family to give me the heads up. 

Another important issue is putting on make-up. I've had people ask me how do I put on eye liner if I can't see? Well I end up poking myself in the eye and usually I end up with the "smoky" look when I wasn't going for that at all. Luckily years of experience have meant I can put make-up on without looking to a degree, and then I hope someone tells me if I've made a mess of my face before I walk out the door.

For instance, I went to work and for a few hours I went on my merry way until a friend asked me if I had grey hairs. Grey hair I'm only 26!!! It turned out I had foundation in my hair and she fixed it for me. But in the 2 hours before that no one mentioned anything! 

I guess now I need to rely on others more often even though I am very resistant to doing so. I'm also lucky I live with other people so I can always ask if I'm looking terrible (and hope they give me an honest answer). 

So if you see me and I have make up all over my face, please tell me because I guarantee you I can't see it!