Archive for December 18, 2013

See My Way

As I have always had my eye condition, I struggle to explain it to others as I am not aware of what it is like to see with good vision. I can explain how it has changed and talk of what I can see now, in comparison to what I could see several months or even years ago. So I thought people might like to see what I see, this is not easy to do and with the simple computer software that I have, it isn’t a true representation. But I thought you might like to take a look.


I wanted to show you, what I DON’T SEE….

I can’t see as far as this, or with as much peripheral. What I can see isn’t as clear either unless it is something at the end of my nose.

The left shows the tweaked view, with the original filming on the right. This was recorded during a walk one morning to the train station on my iPhone to give people an idea.

The pain of my cane

A few weeks ago my faithful Guide Dog had to temporarily hang up her harness to have a lump removed (just a ‘older age’ cyst, very routine) With her doing this, I had to dust of my long cane. I have kept up my cane skills and on occasions have used it when it has not been practical to use Vicky. However, it has been a long time since I have used it on this scale….. Even when I trained with it, my independence wasn’t what it is now, so team this a decrease in my usable sight and it has been a hard 10 days.

I managed the first few days of her being off work with doing very minimal trips out, mostly because she was very groggy from the operation, so I daren’t leave her too long at home. I then managed to time things in with when I was seeing friends who could come with me.

But there is only so many times I could do this, not to mention, wanted to do this! I was struggling with the dependancy I had on others.

So off I went alone, with only a few of the normal ‘cane jabs’ recieved from uneven paths, or missing a curb edge. These are part of ‘the norm’ any long cane user will tell you about.

On Friday, one week after her op, Vicky was delivered to a boarders, where she got to enjoy some doggy company and rest, while I went up to London to see my eye specialist and professor for a dna trial I am part of.

A trip I dislike at the best of times, but without my faithful friend I felt lost. I had a friend with me, but the concentration needed in London increases ten-fold even with a guide dog, with the cane it was horrendous. Even before I had my eyes dilated and could see even less.

Thankfully my friend drove to help ease my stress. But the concentration needed even for the much shorter walk from the car to the hospital was too much. (Thats another post though.)

By the time we left the hospital four hours later my eyes were heavily dilated and what little I usually see was much smaller and incredibly painful. At this point the cane was used purely to role infront of me and I linked in to my friend for support.

Saturday morning I headed off to collect my son from his friends house where he had been enjoying a sleep over. Hearing the bus coming up the road, I started to run, resulting in me going over the top of my cane having caught it on a drain, flying forward through the air and landing on the palms of my hands and my knee.

Ouch…… it stung, but the embarrassment was much worse, especially as it was actually the bus driver who had seen my fall and got off his bus to help me up and check me over if needed.


Thankfully, grazes, bruises and a damaged pride were all I suffered. I couldn’t stop, the day was getting away with me and I still had to pick up Vicky after Lawrence, so there was no time to hang about, go home or even feel sorry for myself.

It was just one of those ‘blind fails’ as I call them.


So on I went, enjoyed the rest of the day and soaked my wounds in a warm bath later.

Having used a long cane for some time, I am used to the odd bump. Either from me bumping into something, or a poorly laid pavement causing my cane to ‘stab’ me.

But I could not cope without it when my guide dog isn’t available. Because without either cane of dog, I could not cope on my own in the great outdoors.

I was not prepared for the bump I had on Monday on my way to college though…………

I had negotiated my local station, no problems. With the odd ankle sweep for people who thought they could nip in in front of me to cut me up. (One of the enjoyable sides of using a long cane over a guide dog!!!)

Generally as usual, people were very helpful. I was asked upon reaching the station I required, if I needed any assistance, to which I politely thanked them and said (knowing the station well) that I would be fine and headed for the stairs.

Up the stairs, across the bridge no problem, almost down the stairs on the other side when it happened.

When walking up stairs, I hold my cane upright in front of me, in the middle of my body, so that I can use it to judge the depth and height of the treat on the stair and also to be able to feel when I have reached the top step.

On the way down though, this is different. On walking down steps, having swept the ground on the initial step to find the first step down, I then hold my cane like a pencil, so that it crosses my body on a diagonal, so that the ball tip can run along each of the steps again so I can feel the depth and also feel when I reach the final step.

My cane is no more than my shoulder width while doing this, so that it is not sticking out, but enough to enable me to feel if an obstacle is in my way.

So, almost at the bottom of the staircase, I had already negotiated the 180 degree return half way down, the commuters with suitcases and bikes rushing up the stairs to get to their platforms.

When I felt someone rush past me very closely also coming down the stairs. Someone who caught the ball of my cane with their foot, causing it to move out from where it was rolling along the step edge. In the split second it took for me to recover it back to the step I had missed the bottom two steps and landed on right knee with my right hand again taking the brunt of the floor.


A kind women helped me up, while another bought a guard over. They were concerned and checked my hands for cuts and any sign of breaks.

I felt (yet again) very embarrassed by falling and was doing all I could not to cry or get upset in front of these strangers.

When the guard arrived, I shoe’d the helpers away. I was stood up again and just wanted to get to college and away from people.

The guard asked me how I was and what had happened, I explained that it was ‘just one of those things’ and that I was more embarrassed than anything. To which he suggested that next time I use the lift, or had assistance in the station, “after all, you are disabled and shouldn’t do these things alone.”

I think this upset me more than pain in my hands. I did all I could do, which was to thank him for his help and left the station.


I made it across the road before bursting into tears, I had to hear a friendly voice, so using Siri on my phone (as I always do) I called a friend….. It took a few attempts as Siri had trouble understanding a blubbering me!

My friend was fab, calmed me right down and checked that I really was ok. Even making me laugh at a silly joke.


By the time I got to college I was composed and ready to face the day.

I daren’t share what happened with any of my college group for fear it would set me off again.

Having managed to escape any further bruising to my knee, but having my right palm take the full brunt of it, I am now wearing a padded support on my hand and wrist to help relieve the pain that I am in and also to cushion my wrist and palm, so that I can still use my long cane and try and not put myself into a forced hibernation until my trusted guide dog is ready to return to work.

It’s official, I am annoying !!

Last week saw me attend my 9 monthly checkup at Moorfields eye hospital.

My condition LCA is grouped in with RP, retinitis pigmentosa, as it includes many of the se characteristics like night blindness, loss of peripheral vision. With LCA – Labers Congenital Amarosa, I also suffer with myopia (severe short-sightedness) and nystagmus (involuntary eye movement that is continual)

I am now down to finger counting in both eyes, when I used to get the top line of the eye chart stood at half the distance in my rift eye.

Given that six years ago I was between the second and third line on the eye chart (depending on the letters)

I have an incredibly strong prescription lenses, which is what gives me the sight I explained above. Without any glasses it is purely light and colour I can see without holding something above the top of my nose!

Please don’t be reading this and feel sorry for me, my sight is what it is, yes it may be worse than most, but it is much better than some.

So, up at Moorfields for my nine monthly check, I have noticed many little issues in the past few months and with the puppy being off work, I was even more aware of differences from the last time I had used my cane like this.

The long and the short of it, after four hours seeing a consultant, an eye scanning team, a retinal photographer, a registra and then my Proffessor, I have an increase in my cataracts (but not enough that they would risk laser surgery with my nystagmus) I have more noticable ‘floaters’ parts of my retina that is moving around in the eye jelly, a deteriation of my peripheral.

I can no longer do the peripheral eye test where you stick your head in a white bowl like test machine, stare at the red dot in the middle and press the button when you see a green dot.

Now they use the images they get from the scans and photo’s to tell me about my percentages. I have a difference of 21% from eighteen months ago, which sounds significant, but when I have less than 10% periferal it is even more…. I am not a mathamatitain, but even I can work out that that is a lot.

The cataracts are causing everything to feel as if it is either darker than it used to be or is unbearably bright when I have been in a darker environment.

So, the main reason I go to Moorfields is because I am part of DNA study to help with genetics for RP and LCA. So far they have found and researched 14 different genes…… And then there is me!

I told the registra that I liked to be different, he said I wasn’t different I was annoying. He actually called me annoying.

But then the Prof came in to see me, telling me of another study that I could be part of, very simple blood sample is all they need. He reminded me that my condition was definately not ticking any of the right boxes at the moment and making his and the research teams work ever harder. But that at the same time, he still found my scans and photographs magical.

So, I am offically annoying.

And that is exactly what is now written in my hospital notes too !!!

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