The Eyeopener

The EYEOPENER

The “Eyeopener” is a booklet created by the Shoreham AMD Group.

They have brought together their experiences after losing their sight so as to create a comfortable Eyeopener on their new world.

The team had a lot of laughs as they recounted their stories as they learnt how to deal with the problems they met, even to turning those problems into opportunities.

The hope is that everyone who is diagnosed with AMD will get hold of a copy to read and to get their partners and carers to read so that they  have an insight into the difficulties faced and overcome.

Running to 28 pages in large print it is full of pathos and humour, sometimes the sessions ending with  tears of laughter.

Published August 2018.                                          Download your copy here.

Macular Society National Conference

Macular Society National Conference 2018.
  1. Speaker Simon. Not only do we inherit  blue eyes, we have all survived the Black Death. It`s the same gene ( Complement Factor H.)   30% of the populstion have  one copy, They are 3 times more likely to have AMD.  If you  ave 2 copies you are  5 times more likely. There are also links to Lymes Disease.
  2.  Speaker David Crab of the Crab Lab  is trying to accurately measure the extent of vision loss.
  1. Speaker Bethany, a researcher into the sociology and effectiveness of support groups . Her preliminary findings are as follows:

– Knowledge and information

– Social getting together

– Sharing experiences

– Hints and tips

– Local pressure group.

Speaker Cathy Yelp, CEO Macular Society spoke about  “the New Ambition”, which is to raise the profile of the charity with the objective of investing more into research.

We are unlikely to get a cure in time for ourselves so fundraising is for the next generations. All new funds to go for research.

Major research projects funded by the Society include Gene therapy; stem cells; delivery system for drops; 16 smaller research projects.

Increasing awareness, get  more supporter, more members, families, friends of families and friends of friends, and lots more.

A very substantial task, we will all have to help.

As Cathy said the starting point is raising awareness.

If you want me to talk to your group, please contact me and we can make the necessary to arrange a visit.

If you think the Macular Society ar doing a good job please donate here.

Age Related Macular Degeneration

Updated 28th August 2013 Still battling on. Suffered a couple of setbacks as the doctos gave me some rablets for High Blood Pressure and they may have been too successful as my eyes suffered. Nine months on my eyes may be recovering. Still I thought you might like this link to hear what an eyecare professional comment on the Macular society.

I also need to tell you taht I’m now taking 80mg Lutein each day and whether it’s actually working or whether it’s told my brain that this is a serious problem and needs to be dealt with i don’t know but it’s not as bad as when I initially had the HBP pills damage.

By the way my left eye developed Wet AMD.

Updated 02022011 Lutein. I read somewhere about positive effects of Lutein. The test cases used 20-39mg per day and got positive results. I’m fairly well built and I need to get a result so I’m taking 40mg per day. I need to clear my eyes fo the gunk if I can. It seems to be working as I’m back to reading the paper, in the right light of course and it’s easier to use the computer and the Kindle. I’m scheduled for another eye test in early July. I’ll report how we get on.

Posted 11012011 Age-related Macular Degeneration.

I found I was suffering from dry AMD about four months ago. I also have a slight void in the macular muscle which is distorting my vision.

My optician, well his lady assistant actually, picked it up and arranged a fast appointment with my optician / ophthalmologist, because he has an OCT (Optical coherence tomography) machine. Yes, there was the build-up of dry AMD. He arranged an appointment with the local eye hospital but the specialists there couldn’t see any build-up and sent me forth saying there was nothing there “I can’t see anything wrong.”

I assume that’s why they also have an OCT machine, because it can ‘see’ better than the human eye. However their machine is fairly old and can only take a photograph of three slices across the eye whereas my optician’s is the latest and takes 127 photographs – forty times more detailed.

Suffice to say I got a new appointment at a different eye hospital, with the same result even though their machine was slightly newer, but it only takes a photograph of seven slices across the eye, so my optician’s is still nearly twenty times more detailed.

I’ve told my optician that ‘in the land of the blind, the one-eyed is king’ and he’s the king, also that he has already seen more in his patients eyes than the ‘experts’ have done.

As far as treatment is concerned there’ is no treatment yet for Dry AMD, though possibly lutein may help. I’m taking 30mg per day in the hope that it’ll do some good. Also I’m hoping stem cell treatment may be possible at some stage.

Meantime I’ve turned down the brightness of my computer screen; bought a Kindle; rebalanced how much time I allocate to the various tasks I ask my eyes to do and I’ve bought a Blu-ray player.

But it’s not looking good.

No driving at night; no clear view of a person’s face; no recognising people across a room (except by listening); no newspapers;  no lip-reading;

As I said, it’s not looking good.

Cliff

AMD – getting better (?)

getting better (?)

I was appalled when I learned I had Dry AMD, but then at my age I had been using my computer a lot and the screen was bright.
Three actions:
– reduce brightness of screen
– reduce hours of computer use
– take 40mg of Luiein a day (2 X 20mg FSC, not ICAPS) The original tests were based on 20-30mg per day, but I’m a big lad so I reckoned 40mg would be handy.Results in six weeks: now reading the newspaper again; watching TV better; seeing oncoming traffic more easily; focusing on faces better; no longer adjusting font sizes on computer.

Cured, no, it’s ‘age-related’ so it’ll come back. Getting better probably. Due for another test in July when we can measure any improvement by comparing OCT images.

HISTORY: My optician decided I had a problem and referred me to the senior partner (an Ophthalmologist) for an OCT examine 31st July 2010; identified Dry AMD using latest OCT machine with 127 images per eye, producing classic pictures of the damage; four weeks later Eye Hospital found no AMD but they were using an old OCT machine with three images per eye; eight weeks later second opinion at different eye hospital, they found NO Dry AMD but again using an old OCT machine with seven images per eye. Followed up with research on Internet found about Lutein and started about six weeks ago.
QED

cliffjenkins

Re: getting better (?) EXTRA

Postby cliffjenkins » Thu Feb 10, 2011 9:23 am

Since writing the previous post, I realise that I failed to adequately describe my white hot fury at the pompous ‘eye specialists’ who told me there was nothing wrong.
I then went on to write a piece of prose about the loss of my sight, that I was going to send to the press but I decided that it wouldn’t have any effect. I have since published it as part of ‘An Englishman’s Life’ available at the Kindle Store for 91p.In writing this piece of prose it is possible that I told my brain just how important my eyesight was, it suddenly realised that this was serious and itself kicked into gear to help out. Certainly the distortion I was also getting from right eye is getting less and I really don’t think that’s anything to do with Lutein.

I am very serious in my opinion about the power of our brains, I think we may be under-estimating its strength possibly by as much as a thousand fold.
http://tinyurl.com/Tomorrows-Tides

Cheers
Cliff
http://yoolaa.co.uk

PS I also forgot to mention that I got a Kindle so that I could read books and magazines more easily. Brilliant.

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