A practical plan. Written (and typed) by Cliff Jenkins.
Published December 2018.
Based on his experiences during the nine years since Age-related Macular Degeneration (AMD) struck him. He now has no central vision at all and he also has wet AMD in his left eye. Dedicated to all those who suddenly realise ”There is nothing anyone can do.”
1.Introduction, the objective is “winning.” Read more.
2.Action Plan Summary, sub-chapters 2.1 – 2.10. Read more.
The role of being a carer is difficult. They can be over-protective, over-careful whereas they just need to be supportive.
They want to help so much and are distraught at seeing the trouble their loved one is having. They rush to do it for them.
Conversely they might laugh at their paltry efforts or even laugh at the very idea.
If we are going to get our self-reliance and self-confidence back we need to continuously test our limits, test our skills, test our capabilities and even test our courage.
Courage here means to go into a room full of people when you know you won`t recognise anyone. Words like determination, stubbornness, and a refusal to be beaten come to mind.
Occasionally we will get it wrong and cover the table in tomato sauce, or pour too much tonic into the gin. These don`t matter but we need to develop our resilience and ignore any embarrassment. And then ask for another gin!
My long-suffering wife has had to watch me go out alone knowing I have difficulty crossing a road safely, that I can`t read signs, street names or temporary notices. She eventually accepted that I had to work it out for myself.
My particular worry is for the carers who cause their loved ones to become utterly dependent on them. It can be accidental but sometimes not.
Carers can also be thoughtless:
Being taken one way and brought back another (which means we won`t have learned the route).
By putting things in a new place, (Oh, horror of horrors).
By expecting us to know what they bought and where they put them etc.
So what, we love them and are delighted to have their help when needed.
Absolutely wonderful, the pavements have been cleared of hedges and brambles sprawling across them.
It means it is much easier for vision impaired people as well as pushchairs and scooters and everyone to use them.
Adur District Council have remembered all the property owners from last year and reminded them to clear their paths.
Hurrah and hooray, thank you sincerely.
Off to a great start when my grandson greeted the discovery of some gluten free bread in a bag for him with a loud shout of “Great, that`s my favourite”.
After a breakfast of scrambled eggs on toast with ham and tomatoes, (with toast and jam to follow) we were off.
Off to the bus-stop on a “Double or dawdle” basis we got the Stagecoach 700 after about 30 mins.
A very busy day as normally I`m the only person rather than the twelve in the queue, ..and then we were off to Brighton.
First stop Palmeira Square. “There it is “ was the cry. We walked down to the promenade and then towards the pier.
The playground on the beach provided an excellent break as the kids ran and ran around the facilities and slides, whilst we had a lovely cup of coffee.
“I can see it” and off they ran to the next snail… The British Airways Union Flag. Shrieks of joy. Quickly followed by the Ice Cream Snail with kids licking it!
Then off again. Gales of laughter.Up to the one opposite the Hotel, Metropole, “There it is – run Finlay” came the cry and they were off again. Then down again for the Grand Hotel and the Fishermen`s Museum and the one by the Carousel, one looking like sand plus a bicycle leaning against it. (Seemed symbolic to me as a mere pedestrian.
Next up to Brighton Town Hall and along to Donatello`s restaurant, with a snail outside, and we all had lunch. They looked after us well, three Coeliacs, including our two grandchildren.
Afterwards “I`m too tired to walk another step”. “Oh, that`s a shame as we can get ice creams on Palace Pier” “let`s go then, now.”
Down a small passageway past Brighton and Hove Buses snail and into the next square with a beautiful golden snail. Lots of smiles, lots of photographs. Through a narrow alley we were onto the Old Steyne. Lots of cries “There`s one over there.” “I can see one.” “There`s another.”
Finally onto the pier and we found an ice cream and two more snails but no sorbet or fruit lollipop, until we left. Fortunately we found one. Then down onto the beach and a sit down, only for ten minutes.
Then it was home time, via Churchill Square,and then the bus home… to another meal for the kids and a stiff drink for us after they had left.
A great day for everyone and particularly for me. I am delighted I was able to contribute successfully to the day.
15,000 paces (7 miles) for us and double that for Willow, our 4 year old granddaughter.
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 population 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.
Speaker David Crab of the Crab Lab is trying to accurately measure the extent of vision loss.
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.
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;
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.
– 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.
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