Friday, February 7, 2014

My cane adventures

I've had a cane for over a year now but haven't been brave enough to use it. My vision is further deteriorating and I decided it was time to accept the cane. I have an amazing mobility instructor from Guide Dogs who has been helping me learn how to get around using the cane.

A big issue for me is not feeling like I'm in control stemming from the fact I can't see what's in front of me and what's coming toward me. I know I'm a control freak so not being able to see where I am or what's coming up terrifies me and cause me anxiety. I've also realised than to cross roads I simply hope for the best which is not something I'd advise! 

Working with somebody is so beneficial, it is giving me the confidence to explore and feel comfortable using the cane. I've learnt how to cross a street, safe places to cross and to trust my ears more. I've also learnt how to use the cane for stairs which hopefully will prevent some of the bruises I have from constantly stacking it! Going up stairs isn't to hard but down is definitely a challenge with the cane and more practice is needed.

In my last session I walked down a main road near my house. I felt as though everybody was watching, of course I couldn't see them, but you get the feeling that people are staring. I was also thinking that someone who knows me could see me and I felt uneasy at the thought. Not so much that I'm embarrassed of my condition but I'm still getting my head around it. It's definitely a foreign feeling that's hard to describe unless you have experienced it. In a way the moment was like me coming out and saying 'hey I'm vision impaired'. I also made a comment about the impression I'd make, walking down the street in high heels with my Louis Vuitton handbag.. Definitely a sight to see!

I highly recommend talking to your local vision impairment organisation and getting involved in a mobility program. Guide Dogs NSW/ACT has been the most positive experience I've had on this journey. And most importantly, don't be afraid to accept help!

Saturday, January 18, 2014

The things you don't get told!

Over the past few years I've learnt so much more about what is actually involved in being vision impaired. When I was diagnosed, I was not told much except I will progressively lose my central vision. I was not warned of any of the other aspects I might experience. Here's a list of things I've learnt and what I do to help. Please share any other tips!

1. Eye pain: Typically I experience eye pain after a day at work or a solid studying session (usually after about one hour). I'm assuming it is related to the strain I put on my eyes to try and see everything as best I can! I experience this daily and it gets VERY frustrating.
What helps: Before reaching for my Panadols (paracentamol) I first try and rest my eyes. Since I always have to be doing something I will either close my eyes and meditate or have a nap. Obviously I can't just lay on the floor for a nap at work (I have tried!) so in worst case scenarios I go for pain killers. I also have found an eye drop that has helped with the burning and heat (Systane Ultra) and you can use this as much as needed. I usually use this after being on the computer. 

2. Headaches/Migraines: This is something I've struggled with for a few years. Generally I get a migraine on my left side which is the weaker eye. Migraines can be extremely debilitating as not only is the pain intense it can cause nausea and further sensitivity to light. I've learnt my triggers for an attack, including sun glare and overworked eyes, so I try to intervene as soon as I feel it starting to take over. Sometimes the attacks are so severe I have to take time off work. At the moment I get about one a month which has reduced. 
What helps: If I am having an attack, I sit (or sleep!) in a dark room and usually wrap a scarf around my head (the pressure helps the pain). Generally I don't find over the counter pain killers effective and I avoid taking anything stronger. My migraines have improved since changing other medications I was on so it's best to talk to your doctor too. Someone also told me to put a drop of lavender oil on each temple and I find this relaxing. To prevent an attack, I'll avoid spending too much time outdoors on a day with high glare and always wear sunglasses outside, which is a given for Stargardt's. And drink loads of water!

3. Sensitivity to light: Some days are ridiculously hard to be outdoors and even inside with the curtains open. Not only does it lead to headaches and migraines, I find it harder to focus and see. I'm guessing this is because the peripheral vision uses light perception to form vision, and since that is what I rely on to see, I am extra sensitive to it. 
What helps: If outdoors always sunglasses! Otherwise unfortunately it's a day where instead of being outside I put on a movie and stay inside!

4. Neck/back pain: I'm surprised my neck is still attached to my body after all the bending it does to read! I'm constantly leaning closer to the computer screen, iPad or whatever is I want to see! This is another constant pain. 
What helps: Making sure that the desk you are working off is set up well, with an arm for the screen. Also any adaptive technology to make the font bigger to eliminate the need to lean. I've also found that getting a remedial massage once a month to be a great help (and I enjoy massages). Massage also helps with the migraines/headaches. 

5. Anxiety/Depression: This is a HUGE part of diagnosis that is not addressed. It is understandable that when you are told that you are losing your vision, feelings of anxiety and/or depression develop. It is a hard thing to deal with. The most important thing to remember is you are not alone in this!
What helps: Talking about how you feel and what you are going through can help a huge deal, if it means talking to friends or family or speaking to a therapist. There's lots of strategies to deal with anxiety and depression and it's not something to be ashamed of. I for one battle anxiety a great deal. As I've mentioned in a previous post the grieving process ties in with these feelings. Also try mindfulness meditation, I have found it really helpful and it's also a time where I can rest my eyes. 

Our experiences are similar but also unique. The best thing we can do is talk about them and help one another. Sometimes simply knowing somebody else is experiencing the same pain or emotions can make you feel a little better. 

Friday, January 10, 2014

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?!

Friday, November 22, 2013

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. 

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 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.

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.

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.

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. 

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. 

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).

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. 

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

Saturday, November 16, 2013

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.

Wednesday, October 16, 2013

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!

Sunday, September 22, 2013

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.