Tuesday, June 28, 2011

First The Good News ...

Yesterday's visit to my Retinologists office started off well. I would say very, very well. Despite the blotchiness I told you about the other day, that turned out to be a couple of dry spots on the cornea. I was in such good form I asked that they perform a Snelling Chart, eye chart, test on me. I got down to about the third line.

Ok, that if you have 20/20 vision is bad. It puts me at 2000/20. I can see what a normally sighted person can see at 2,000 feet. Still legally blind, but four weeks ago before the Lucentis shot, I could see light when they shone a lamp into my left eye. Nothing else.

With that result I was on top of the world. Just like in the movie when James Cagney cried "Look Mama, I'm on top of the world." My happiness was about to end in a big bang.

My retinologist was pleased, she had suggested four weeks ago not to expect good results from the Lucentis. So it was a bonus to have such results. Then she asked how long the injection usually lasts. Big mouth, yours truly, then burst his own bubble, "About six weeks."  So here we are four weeks in and this dummy can't see what is coming.

"We'll give you another injection today then. I'll be on vacation for two weeks. So we don't want to let things get worse." my doctor said.

Ahhhhh! Not sure, How I talked myself into this position. I do badly and get an injection, I do well and I get an injection. B****r.

I wish having CRVO wasn't such a frustration. The one time when I wanted to come home and not have a sore eye for the evening, just once "Please God." Just once let me be able to see for long enough where I forget what it is like to feel that needle slip into my eye.

For a description of my experience of intravitreal (into eye) injections see my hubpage Then the Ostrich Pooped

Sunday, June 26, 2011

The Red Light





You think you know your city well, you walk to work on Friday and a crosswalk is there, come Monday the crosswalk is replaced by a traffic light that you have longed for. But the consequences of being blind lead to confusion, anger, frustration and humor.

With a possible sprinkling of philosophy..

The Red Light

Wednesday, June 22, 2011

Vision Fading Today

It is three weeks since my Lucentis injection,

Today I am noticing a little fogginess coming into my vision, mostly just above right center.  If you imagine a clock face that would be between two and three.  That was the position where the Central Retinal Vein Occlusion (CRVO) was in 2007.

Now I cannot say that it is definitely a reoccurance of the swelling which the CRVO caused. That is because the temperature here in California over the past couple of days has been over the one hundred degree mark and very low humidity, that causes a lot of dryness of the Cornea which can give similar symptoms.

I do use some artificial tears, but in these conditions and using a computer the eye dries rapidly. An example of how dry it is, I washed a flannel shirt today, hung it outside to start to dry, it was dry to the touch in twenty-five minutes.

So with that in mind, keeping the cornea moist is near impossible without constant drops, which I think increases dryness.

I have an appointment with my retinologist next week, so we'll see what she says. Injection for swelling or dry eye? Anyone care to call it?

Sunday, June 19, 2011

Stem Cell Trials may be Treatment for some forms of Blindness

On Friday June 17, 2011Advanced Cell Technology, (ACT) announced they have reached the human trial stage and two patients with forms of Macular Degeneration are being prepared for injections of Human Stem Cells at UCLA in Southern California. I am including the newspaper report for you along with this post.

ACT's trials are not uncontroversial, many see the term stem cell as synonomous with abortion. It is true early stem cell production relied on aborted foetuses, but as technologies improved it was discovered stem cell could be found in non foetal tissues and so today donors can offer stem cells.

ACT has developed systems of manufacture which allow stem cells to multiply in industrial proportions. Macular degeneration is just onee possible use for the new treatments, others include Parkinson's Disease and Alzheimers
.
Stem cells are cells which have a general DNA structure which has not been defined by structures around them. They could become nerve cells, blood cells or muscle tissues. The treatments generally consist of an injection of stem cells in solution close to the site where they are to develop. In the case of Macular Degeneration they are injected into the eye, where they lodge in the retina and should develop into specialized retinal cells. This has been shown to work in laboratory animals.

If successful this technique could be a valuable treatment for both ACT and many people around the world. Macular Degeneration is a major cause of blindness in the Western World and treating the condition could allow several million people to enjoy a full and productive life with sight.

Human Stem Cell Trials Prepared for Treatment of Macular Degeneration

Wednesday, June 15, 2011

Lucentis Injection: Two Weeks On

Well it has now passed the two weeks mark since I had my Lucentis injection.

You may recall that prior to the injection I could barely see light. The world was a thick fog and there was no definition to any shapes. Within a couple of days I saw a major improvement, I could see the letters on my normal computer keyboard with the use of glasses.

Today I can see the keyboard and my fingers as I type. I am no touch typist and need to look. This post has taken me three minutes to type so far. Much better than I was doing the last weekend in May, when a single word could take that time.

I was also able to see a high visibility keyboard without any reading glasses earlier today. That is very good even for me.

Results do vary from day to day, but if your doctor recommends Lucentis  or Avastin it is worth a try. You might even beat me in terms of visual accuity. If I still had my driving licence I do not think even as good as today is, that I would go out driving a car. Things are noticeably better but some things are not that good.

For a description of my experiences with intravitreal (into eye) injections see the article Then the Ostrich Pooped   on HubPages.

Monday, June 13, 2011

Blind Designer Working

I have spent a few days working on a new project. I wanted to try my hand at designing and running an online merchandize store.

It was a challenge I will admit and I cut down my options to two companies which offer free design, sales, promotion and customer service along with item production on demand to each individual order.

It is in part a challenge to myself to do something in my spare time and an experiment to see if I can create something which people will pay money for.

I am thinking of continuing the experiment until Christmas 2012, that will give me six months to practice and one full business cycle to track real results.

Should be fun I wrote the hub below to set the scene and also give initial opinions on Cafepress.com. I also opened a zazzle.com store and will follow up with a hub on that experience later.

Blind Designer Working

Thursday, June 9, 2011

There are nice people in the world

This morning was a normal day. My wife decided we needed to go a day early for our regular, weekly Starbuck's. Normally we go on a Friday, but this has been a busy week. So time for a treat.

We drove into the drive-thru lane and ordered our drinks, just plain brewed coffees and a blueberry scone. In front of us was a large silver SUV. As we crawled around, my wife did her make-up as usual and I just played with my debit card, it was my turn to pay.

The SUV in front pulled away from the window and was gone in a moment, my wife took my card and the cashier said, "That's ok, the driver in front paid for your order."

We were stunned, you hear about such things and they are almost an urban myth. I have often asked people if that sort of thing really happens. Well today I know they do REALLY happen.

So what does this story have to do with being blind? Nothing.

I just wanted to say that there are things which people do which do make the world better. I do not know the driver of that silver SUV but I wish I could thank them for their gesture. I doubt that they will read this blog at anytime, but maybe if we can give a little something, a kindness, a thank you, a word of praise for something done for us maybe that will be some gem of a thank you for the kindnessshown today from a stranger to a stranger.

Thank you!

Wednesday, June 8, 2011

Joke of the Day

A blind man and his seeing eye dog walk into a store. The assistant says hello as they pass and the man acknowledges her. She watches as the blind man walks into an aisle near the center of the store. There is a loud crash.

Rushing to the end of the aisle the shop assistant sees the blind man amid a rolling mass of cans. As he stands there he swings his seeing eye dog around his head by its tail.

"Can I help?" Asks the assistant.

"No. Just looking around." Says the Blind man.

Tuesday, June 7, 2011

The Low Vision Store

In the past few days I have opened an Amazon aStore called the Low Vision Store.

The store has some items which I have found useful as my sight has deteriorated. The store is also intended to provide me with some income in order to support this blog and pay for some of my day to day needs. It is free to visit but if you do decide to purchase items you will be contributing a small amount to this sites upkeep. I personally do not gather any information about you, the aStore is supported by Amazon.com, I would however be happy to receive any feedback with regard to items that you might buy or those items you might feel should be included within the store.

There are sections devoted to gadgets (items such as liquid level alarms), Computer software (An extensive library of Dragon Speech to Text software in English and Spanish), as well as a Kindle Store,  speaking watches and canes.

I hope that you will take a look at the store and maybe comeback to see future additions and support this site with a purchase.

The Low Vision Store

Monday, June 6, 2011

Insomnia

One of the most difficult things for me to deal with isdisrupted sleep patterns.

Since going blind, I have had no real sleep pattern. I can just fall asleep riding the bus, fall asleep in the afternoon or spend the night fully awake. It is frustrating and leads to a constant feeling of tiredness and irritation.

I don't know the cause of the change in my sleep pattern. I cannot say it is my lack of awareness of light. I do see light and know when it goes dark outside, my blindness is more with visual accuity, that is blurred vision to varying degrees.

It may be that with the blurred vision there is less intensity to the light that I see. A bright day is as bright to me as a dull cloudy day was. Now dull and cloudy might as well be night for me. Whatever the cause I hope it is not permanent, and that sometime in the future I may get a good night's sleep again.

Saturday, June 4, 2011

Somedays REALLY Stink!

You know, somedays can really stink!

Today is one of those days, whether I were blind or not there is no getting away from it. Today stinks!

Last night I went to close the back door of our house, it had gone dark outside, but there were lights on out there. I always leave a light on because I once read that skunks do not like a light, they stay away being nocturnal. Well last night I met a skunk which had obviously NOT read that article.

You can possibly imagine why today stinks, why I stink, the house stinks and the very air I am breathing stinks.

And today my wife and I are driving her friends from Scotland to the airport to catch a flight to Seattle, two hours in a car with us. I wonder if they might get a free upgrade to First class, or maybe they will be banished to the wings. LOL

My excuse of course, "I didn't see it." Maybe I will not have the job of closing the door to the garden at night now.

Well one job off the "Honey do list."

Maybe today doesn't stink quite as much as I thought.

Friday, June 3, 2011

Sudden Change in vision?

A change in your vision can happen in the blink of an eye. That is no pun, no joke, it is a serious matter to be dealt with as an emergency.

My blindness was caused by blood clots, until December 2001 I did not know of antiphospholipid anti-body syndrome (APS). APS is an auto immune disorder which is related to Lupus, it manifests itself as a long term propensity to form blood clots. My first was at work in the UK I was shelving stock in Tesco when suddenly I had a severe pain in my right eye, blurring of vision in that eye and a severe headache. Sadly I ignored it, for several weeks, when I did see my doctor he immediately saw it as an emergency, but I had waited too long and lost my vision in the right eye almost completely.

The clot had moved into the central retinal vein and blocked the blood supply to the retina. By the time the pain had occured it was already almost too late to react. The pain was the blood pressure rising in the eye and by then retinal nerve cells were dying.

The danger is that the pressure also blowsup blood vessels which distort like stretched balloons. This damage causes other bodily reactions, new blood vessels grow to replace the damaged ones. This in turn produces high internal pressure in the eye leading to reduced blood flow risking further clots.

If you have the symptom of rapidly blurring vision at any time, seek immediate medical attention. Time is of the essence, waiting is much too costly in terms of long term vision damage. Also insist that your doctor looks for the reasons for the vision problem. Disorders such as APS are more common than one might think, some reports put the numbers of sufferers at 1 in 500, most of whom are undiagnosed, being undiagnosed risks repeat blood clots in the other eye, or death by stroke or heart attack.

Many doctors only look for signs of diabetes, which can also cause sudden blindness along with the use of some medicines such as Viagra or some asthma drugs. Make sure your doctor is aware of all your treatments and medications as well as looking for non-diabetic causes such as APS or Sickle Cell for the loss of vision.

A central retinal vein occlusion (CRVO) is not the end of the world, it will however mean a change in your life. Once it happens there is only a small chance of returning to pre-CRVO vision levels, treatment must be quickly sought and received. If you can see a doctor in minutes it is all the better at most 24 hours will cause some permanent damage, longer and permanent damage is almost assured.

The article below may be purchased from Amazon.com via my affiliate link:

Central retinal vein occlusion in sickle cell disease.(Case Report): An article from: Southern Medical Journal

Thursday, June 2, 2011

Lucentis Injection

As I write it is 48 hours after an injection of the drug Lucentis. The drug is injected directly into the eye, actually a fairly painless procedure, much more unpleasant for anyone watching or imagining the process.

Lucentis has been used on my left eye several times, along with Avastin and sometimes Kenalog or Macugen.

Normally I see a great improvement in my vision within 72 hours of the injection. This time my retinologist advised caution, my vision had deteriorated to a foggy blurr by Tuesday last. It had not been quite that bad for quite some time. Yesterday I was able to see the walls of my house as I moved about, today I can just make out the letters on my normal keyboard, I do not have a high visibility keyboard at home, though I do use one at my local college. I think it might be a good idea for me to buy one sometime though as they are highly effective.

For my experience of intravitreal (into eye) injections, read my article  Then the Ostrich Pooped

It is often hard I think for a doctor like my retinologist, in part she must always seem cautious to prevent false hope building. If I were to see little improvement I am sure she would feel that I would lay the blame at her feet. Personally I don't think that is the case as she has been a wonderful doctor to me for four years now.

Lucentis usually remains effective for me for about four weeks, that is one of the less palatable facts of life. Vision for me is only ever temporary. We will see how this all works out over the month. My retinologist suggested Kenalog next time, it averages a six month effective period but it also raises internal eye pressure, it also caused a steroid induced cataract after about 18 months. The cataract was removed over Christmas 2008. So further cataracts are less likely.

For a description of my experiences of intravitreal (in eye) injections see my hub, Then the Ostrich Pooped   on HubPages

Wednesday, June 1, 2011

The First Day

This is the first day of my new blog. I hope that this blog might grow into a resource for the visually impaired and those who live about them.

I am visually impaired myself and would have loved a go to resource that talked of the problems and also some solutions to everyday problems. I hope that many of my readers might share their experiences and insights. You need not be visually impaired yourself just share a story about any topic which might be of interest to those who are visually impaired.

A Liquid level alarm for the Blind

When I first became blind one of the most upsetting things was my innability to pour a drink for myself without over filling the cup.


It may seem silly but it is such simple sounding things which frustrated me the most. The act of pouring a cup of tea or coffee is wonderfully liberating. You feel that you are not totally dependent on someone else to provide basic needs.

For a few dollars you can purchase a small device which hangs onto the side of a cup, glass or mug and allows a blind person to hear or feel a vibration as the level of liquid in the cup comes close to the top.

The devices come in several forms but are basically a 9 volt battery with two prongs elongated and bent over to form hooks, these hooks hang on the side of the cup and as the liquid reaches them it completes the circuit allowing the buzzer to sound. So you can stop pouring and be free from spilling hot liquids on yourself.