And the crazy stuff.

Between 2011 and early 2012, I went through a long phase of depression. And when I started seeing things which were really not there, I really thought I'm going mad. For almost a week, I saw off and on these distorted, formless shapes/objects superimposed on the everyday - unreadable text floating in front of my eyes, on the mirror. I was used to the occasional visual illusions /misperceptions which most of us with SD suffer, but these new kind of prolonged visions were not fun.

I was concerned for my mental well-being, and I decided to seek medical help for my depression. To control my anxiety levels, they prescribed me some anti-depressants during the first consultation. I was so frightened with the thought of some colored pills controlling my life that I didn't take any.
I tried to meditate myself to sleep.

Next morning, I took out my running shoes, and started training again after several years of hiatus. My energy levels were again back to normal in few days. I positively tried to bring some changes into my life.

Everything was going right in my life, and then suddenly out of nowhere I start seeing things again one day. Even thought it lasted for a minute or so, I was really terrified. I went into a state of panic. I asked myself if I'm "really" alright now?

I had read about Charles Bonnet Syndrome (CBS), so I called my retina specialist after a few days when I could think a little clearer. He said it was probably CBS and nothing that I should worry about.  He reassured me that it is not psychiatric in nature, but just hyperactivity of the brain to fill the blind spots with something. When it cannot draw on sensation, it draws on memory.

Over time, I've noticed that the days when my eyes are very tired, these hallucinations return. And they go away quickly as well. I've learnt to not associate with my mental health. Although it was hard in the beginning. I prefer not to discuss this with others though (family or friends), as I'm not sure if they will understand.

Recently I read an interesting book by Oliver Sacks titled Hallucinations, where the author argues that having hallucinations does not mean psychosis. In fact hallucinations are rather a "positive phenomena, as opposed to the negative symptoms, the deficits or losses caused by accident or disease, which neurology is classically based on. The mind is not able to tell apart vision from reality as the hallucinations are much more like perceptions. They make use of same visual areas and pathways as perception. [...]  In modern Western culture, hallucinations are more often considered or portend madness or something dire happening to the brain - even though the vast majority of hallucinations have no such dark implications. There is great stigma here, and patients are often reluctant to admit to hallucinating, afraid that their friends and even their doctors will think they are losing their minds..". There is an entire chapter on visual hallucinations related to Charles Bonnet Syndrome, where he details several types of hallucinations - text, notation, music that one sees for hours but which cannot be read; misshapen distorted images/objects/faces, misalignment, distortion, inversion of image, etc. 

Here is a link to his Ted talk: http://www.ted.com/talks/oliver_sacks_what_hallucination_reveals_about_our_minds.html

I also came across a comprehensive article on scientific american blog on CBS which may be of some help:
http://blogs.scientificamerican.com/guest-blog/2012/08/09/when-seeing-isnt-believing-charles-bonnet-syndrome/

ACT reports improvement in vision from 20/400 to 20/40

Just a quick update. Not much details so far on it, but ACT  reported in a recent press release that one of the patients enrolled in their stem cell trials had an improvement in vision from 20/400 to 20/40.
This is really great :)
Complete news article here:
http://online.wsj.com/article/PR-CO-20130516-908327.html?mod=googlenews_wsj

Cuts and burns crossed out

I miss a step a little too often, I bump into things (sometimes electric poles), cuts and bruises are a norm. The day is not far when they will be convinced that I suffer from some self-injury disorder or DSH.

Partial vision is not easy to live with. You think you can see when you actually cannot.

I recently purchased cut and heat resistant gloves, something similar to these (Kevlar knit gloves). I highly recommend them. They are not bulky and very useful for everyday kitchen work. A little difficult to clean though.

Trying to be normal

I've been upset with myself for sometime now. I need to undo all this anger and mistrust towards others. I wasn't like this 2-3 years back. I don't know how I learnt to be so spiteful and hostile.  But then, to establish a normal relationship with the world, first I need to succeed in having one with myself. 

When every day you need to sift what is real and what is hallucination, it is difficult to have a hold on reality. In periods of stress, everything seems even more muddled.

Last week while walking back from office, either due to stress and a possible drop in field of vision, I was seeing stuff that wasn't even there. Twice I felt that I'm being attacked by a stray dog when it was just my leopard print scarf. One day I didn't see an electric pole and almost bumped into it. Cuts and burns are a norm. Three days in a row I got out on the wrong floor and even if it was just my vision, I thought my head is getting fuzzy. 

How do you manage to keep sane when your brain presents an incorrect visual image of the world? How do you learn to discriminate between what is real and what is not?

I know I've lived for several years with the thought that I'm a slow thinker because I could only attempt 50% of the paper in the standard exam time. No one told me it was my bad field of vision. No one gave me an option of extra testing time. Now again I find myself inventing new kind of ghosts. 

Sometimes I think I should find a job in Delhi and stay with my parents. That I should stop being so stubborn about living on my own.  If I ask for help, does it mean I've given up? I'm not even sure what I'm fighting with half of the times. 

I will think about it another day. 

Eye Strain

My eyes are constantly fatigued of late. The left eye has almost become some kind of screen saver. It goes in all possible directions to focus at the same object. In no time, I will morph into a wobbly-eyed toon.  

I need to check with a doctor. Either there has been a huge drop in the left eye vision or simply eye strain. I have been spending extra hours at work. 

Two months ago I changed my laptop. Even though I adjusted brightness to blend with the ambiance lighting, I felt constantly strained. Turns out that my previous laptop LED had a lower dot pitch and more pixels. My stuff is still with the movers and packers company as I've not found an apartment in the city I moved to. Once I get my stuff I can use my iMac and throw this junk laptop out of the window.

At work, the new seat is next to a window. I would need to either change my seat or make sure that i can close the blinds. 

I found a very comprehensive article online on reducing computer eye strain. A lot of things we already know but some were still new to me.  Here is the link: Computer Eye Strain: 10 steps for relief

Teaching again

After several days of hesitation, I've finally started conducting French language classes at work. Teaching was one of the first things that I ticked off my list when I started to lose my eyesight. It seemed impossible to conduct sessions when I myself cannot read what anyone will write. Eye contact is out of question.

First day of class and I couldn't help getting overwhelmed with the positive feedback I got from everyone from my batch. I used presentation slides and a notepad instead of traditional whiteboard. Used PPT pen to highlight, underline, draw (all those useless hours spent drawing in paint finally came to some good). Took a lot of time in creating slides out of the lesson plans, scanning worksheets etc., but it ensured that everything is one place and in order.

Have delivered six successful sessions. Very pleased that teaching still remains possible and as interesting as ever.  Are you also a visually impaired teacher? What methods of teaching do you use to conduct your classes?

Lazy eye

For past two weeks , my left  eye seems to have a mind of its own. I am trying to force it to focus but it doesn't seem to obey. Does anyone else has this problem? I've not been to my retina specialist in months. Time for eye check-up, maybe I can use glasses. I cannot read anything from my left eye anymore.

Prove You're a Human!

Alright, this drives me really crazy. You are a visually impaired blogger but you put a captcha on your blog to filter spam comment. Next I know, I will have to decipher a captcha even for viewing some posts. Please stop using challenge-response systems for comments. No one likes spam. But you can moderate your comments instead of putting a captcha. And if you didn't know they have figured out how to bypass captcha.

There is no dearth of CAPTCHA on the web. I've a plethora  of those squished, squiggly, irksome letters to deal with for payment gateways. And of course, every time I forget a password of my nth account, I am sent straight to the captcha gallows. (breach of some electronic code of conduct?). And if entering correct password wasn't enough, I'm given a 10 minute captcha treatment for even changing system. What is next? Browsing habit? Say if I login at 4 am to Facebook on a weekday!?!

Sometimes I wonder if the new technology is rather creating more accessibility issues.




June 25, 2012, Update - I guess I was just high on irk quotient that day. Even simple navigation is quite a challenge if you have low vision, so troubleshooting is obviously tedious. Lot of my low vision friends may not know that captchas can be disabled! We get so used to seeing them everywhere anyway.

 To disable word verification for blogger comments, go to your blog settings > Posts and comments and disable "show word verification" option. You can still avoid spam by selecting comment moderation.

Bewilderment

I read 3 books in one week, roughly some 1000 pages (after work, in transit, waiting for friends in cafes, on roadside because I didn't want to go home). I've not read as much in such short period after university days. I'm surprised.

Advances in Stem Cell Therapies

More advances in stem cell therapies with every passing day. Stroke patients show signs of improvement in earlyy phase clinical trials in Scotland. A ten year old girl gets vein growth from her own stem cells. ReNeuron to present the pre-clinical data related to its ReN009 therapy for critical limb ischaemia, a chronic and debilitating disease that restricts blood flow in the limbs at a major stem cell a conference in Japan this week.

Optimal way of growing embryonic stem cells

A team of European researchers discovered that embryonic stem cell properties are impacted by the laboratory conditions used to grow them. The study, supported by four EU projects - HEROIC, PLURISYS, EUROSYSTEM and ATLAS - evaluated the gene expansion (transcriptome) and chromatin modifications (epigenome). The results show differences between pure stem cells and embryonic stem cells grown in laboratory conditions. Stem cells being both unstable and primed to differentiate, the researchers now know the key information on what is the optimal way of growing them. The transcriptome analysis allows scientists to identify which genes are turned on or off inside the cells. The gene's level of activity is also calculated through this method. The epigenome analysis provides researchers insight into how genes are controlled.


Human embryonic stem cells may be totipotent


Another study led at Salk Institute uncovered that a small number of human embryonic stem cells believed to be pluripotent may be totipotent. Totipotent stem cells have the potential to develop into any cell found in the human body, including placental cells. Whereas Pluripotent stem cells cannot produce "extraembryonic" cells such as those in the placenta. More information on this study here.


Funding problems: Scientists urge EU parliament to not cut funding

Leading researchers, institutions and patient groups urged EU parliament not to cut funding for embryonic stem cell research in Horizon 2020. With Europe and UK being world leaders in embryonic stem cell research, any cuts will seriously jeopardize the future of stem cell research.