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Open letter to Macular Society re Lutein v AMD

28th September 2014
by cliff

An Open Letter to the Macular Society about Lutein v AMD

Looking at my local Macular support group only two out of twelve members had heard of Lutein and both used it successfully. The others, ten people had never heard of it.

Whilst the Macular Society on their web site support the benefits of Lutein, their quote is buried deep in the turgid detail of a report by scientists. I quote:

“Research supports the theory that high macular pigment levels may reduce your risk of AMD or its progression.Macular pigment can be increased by taking supplements with lutein or zeaxanthin or by changing your diet to include more of them.” Macular Society website.

What they don’t say is that 50% of users found that their eyes stopped deteriorating. They do not state that there is no scientific or statistical support for these same benefits being achieved by changing your diet on its own.

It is my contention that our Macular Society is letting our members down and allowing thousands of members to suffer continuing degradation of their sight unnecessarily.

If I was a cynical person I might think that this situation has occurred because of the financial support given to the Macular Society by the suppliers of assistive technologies. They have a strategic need to find more people with deteriorating eyesight. [They sponsor our annual conference and advertise in our magazine.] But may be that’s unfair.

THIS NEEDS TO CHANGE.

I Propose a new policy for the Macular Society:

Draft 2 for Lutein Policy for the Macular Society to consider.

(28^th september 2014)

“The Facts about Lutein

It is a fact that our eyes have Lutein in the macula.

The AREDS (Age related Eye Disease Study) found that people suffering from AMD got relief from further deterioration by taking supplementary Lutein (with Zeaxanthin) in doses ranging from 10 to 30 mg per day. There were no no side-effects observed.

There is also empirical evidence and some early studies showing that Cataracts cease growing when using the Lutein supplement.

There is increasing professional support of the results of using these supplements and some eye professionals are starting to prescribe them.

The Macular Society is pleased to see these developments and will conduct its own study of our members to try to confirm, or otherwise, the effects of the use of these supplements. In the meantime it is upto each person to find out as much as they can and take their own decision. We will conduct our own study and then we hope to endorse its use fully.

The Macular Society

Dated:…….

A look back at Snowdon.

27th December 2013
by cliff

It was only when I started looking at Google maps that I realised just how much of Snowdonia I have tramped across. The Glydyrs, the Carnedds, Tryfan and of course Snowdon. I remeber vividly one January, the gale-force blizzard we survived during my mountain-leadership course!

So fifty or so years on and with my poor eyesight I thought I’d better get there whilst I can still see. So the task was to get there, to see what I could climb and then to get back again.

My route was by train via, I think, John o’groats and all points west to Bettws-y-Coed and then by Sherpa bus to Pen-y-Gwryd. I stayed at the same hotel as Edmund Hillary and Sherpa Tensng used when preparing for their successful ascent of Everest. Indeed my route would take me directly above the cliffs that they practised on.

I was fully prepared and equipped for the worst weather and of course it was beautiful – I bought a hat!

Of the four paths from the car park at Pen-y-Pass, I selected the most southerly route as it was the most exciting and most beautiful and indeed the least used.

It was all just as I remebered it. Breath-taking, in more ways than one, Hard work and womderful mountains,

You climb up over and dowmn the Clwyds, at about 2700 ft, and then climb up again to Snowdon.

Starting from the Miners’ Track, I branched off and followed the southerly track. Iwalked up and climbed up over the Clwyds and along the knife edge ridge that I remeber so well. It was just as if I’d been there just last week.

In the event during the descent my thighs couldn’t cope with the jarring from several hundred missed foot steps and I limped down my escape path. I spent the next day hobbling and limping between the the bar, the garden and the restaurant on a abeautiful sunny day overlooking these gorgeous mountains. I marked out a flat route, a lap of about a thousand yards which I walked probably eight or ten times and gradually my legs recovered.

I duly returned home (not quite as tame as it sounds.)

An exciting trip to do on your own, maybe a daunting trip if your eyes are out of focus and you’ve lost your central vision. As Gavin a friend of mine says ‘Well. I took some photos and I can now see where I went’.

I have a wonderful shot of the knife-edge that I wanted to see again and of the raw beauty of these wonderful craggy mountains.

ABSOLUTELY FABULOUS and even better for having done it all independently.
10th July 2013
……………………….
27th December.
Six months later I can now see that this expereience has worked wonders for my self-confidence, proving my self-reliance and restoring my self-esteem.
Cliff

………………………….

If this article has been of help to you, I’d love you to say thanks by making a small donation to JustGiving for the Macular Society. All the monies route directly to the Macular Society, particularly for research into a cure.
Thank you very much,
Cliff.

AMD- Three years on AND NOW THERE’S MORE

2nd September 2013
by cliff

13th November 2013. Life is all about finding ways to do what you wnat to do. I have been unable to read a story to my grandsochildren. TODAY I actually read a story to my grandd-daughter Lana.

The solution I found from a laeflet published jointly by the National Blind Chrilddren’s society and the RNIB. This pointed me t the libraruy service who have 434 Large Print story books. OK they’re created for children but they solved my problem, WONDERFUL. AND the way to get at them:
Here is the procedure for searching for large print books on the library catalogue.
Go the the west sussex county council (or your local one ) website
* Press ‘L’ on the alphabet
* Click on ‘Library catalogue’
* Go to advanced search
* In box 1 click on class from the drop down menu
* In box 1 on the right hand side write in STO
* Don’t tick the ‘junior box’
* Box 2 should be left on ‘All branches’
* Go to box 2 and scroll down to ‘Large Print Paperback’ or ‘Large Print Hardback’
* Press search JustGiving for the Macular Society.
* Click on STO
* There will then be a list of all the books
* Click on ‘Reserve now’ or ‘Add to basket’ if you want more than one.
* Enter your pin number and library card number
*
EASY really!!

Bring it on
AMD Three Years On, and now for the next thirty years,

Well, these three years have been a real roller-coaster. With many ups and downs and many sharp corners, always changing almost always getting better.

There IS a day One – the day I realised that I really have a loss of sight, in my case due to AMD Age-related Degeneration, and that it’s probably going to be forever. That was a bad day.

What happened next was critical. I was lucky because I was furious that I’d been hit so young. I wasn’t supposed to go old this soon or so suddenly! My fury was almost palpable, as Angie and Jon at the Macular Society and my family and friends will all confirm. My anger was so strong that I decided that I couldn’t use my white stick!

For me the result was, and still is, a mix of bad days and good days. Good days are when I work on what I can do (as opposed to what I can’t do, they’re bad days) and then striving to push the boundaries of what I can do.

My basic attack is supplements – Lutein may halt further deterioration and there’s a whisper that it may do better eighty mg per day plus Vitamin B12 (since Sept 2012) twenty / thirty mg per day. B12 apparently is good for cell regeneration.) The firm belief that this really will help underlies my confidence and my determination to ‘push the boundaries’ – attacking on all fronts.

Initially for me ‘pushing the boundaries’ included:

– choosing one eye and training it to look round the ‘splodge’ and also to look further and further away up the road

– getting out and walking miles, preferably in green surroundings, pounding out my anger whilst resting my eyes,

– training my brain to memorise what I’ve just looked at so that as I move my view (slowly) it automatically fills in the missing patch

-training my brain to sweep from side-to-side to spot obstacles, whether dogs, leads, children, bikes or cyclists, or even cars and buses

– training my brain to accept that the first look at a word is wrong and to wait for me to start the word again (there’s a world of difference between public concern and pubic concern, but quite fun!)

– getting the right seats at the cinema and theatre, see note1

– developing a rapport with my carer to define and agree what help I do like … and no more

– training myself to use my Nexus 7 so that I can read Google News and the Daily Telegraph; read my favourite books purchased from Google Play and Kindle Books; review my picture gallery; read PDFs arriving by email; listen to music from Amazon, Google, Spotify and my own tracks brought together over the years; to use Notepad for making notes of to-dos etc.; use it as a mobile phone; use my dictionary; PLUS my diary / calendar; see note 2 one device to handle so many needs, smart, modern, low cost and portable. AND I can even dictate my emails!

As I achieve some progress, no matter how small a change, my confidence gradually improves (not evenly I still have bad days, but the ratio of good and bad improves) so I can then push new boundaries:

– breaking out of my hermit existence (OH! Yes it happens to all of us, it’snatural; while I examined myself to assess the damage and then to start – learning how to cope and to start healing myself, besides which everything immediately seems either too difficult or too risky to do)

– unassisted independent travel (I’ve visited London, Paris, Dijon, Lymington, York, Birmingham, Bettws-y-Coed and Snowdonia, even doing some climbing) I’ve also been up the Shard

– making new friends, I’m using my volunteer role with the Macular Society to help me, first with their Speakers training course and then getting speaking appointments and actually speaking

– similarly I need to try to create ‘eye contact’ so that people will trust me better whether to believe my message or to possibly even sponsor me

– if I can make ‘eye contact’ I’m confident my brain will create a new face recognition system so I no longer ‘ignore’ friends and acquaintances, but I don’t know how close I will need to be as I’ll be using just one eye

– I’ve also adopted a local pub as ‘my club’ as they have good food and a beautiful garden overlooking the river plus a manageress and staff who are delightful; … so I can meet people there, and it’s got excellent WiFi

– I’ve even got the local council coming round to find out how we can get me back into some sort of work

– my next project is to create a Sponsorship event, not climbing Kilimanjaro, rather something simpler that I can achieve on my own, for more details please see http://www.justgiving.com/CliffJenkins.

I think my vision is improving albeit slowly but last year’s OCT scan didn’t show any change. Nowadays I think I am starting to see with both eyes simultaneously again and with only a small ‘splodge’ in the way. Is this my brain working hard or is it my eyes improving or is it both? I can’t tell yet.

In the meantime I’m waiting in eager anticipation for for replacement stem cells as hopefully they will recover my sight loss. thank you…

Now for the next thirty years, bring it on!

Cliff
Cliff Jenkins

A bit about me: Aged 71; Dry AMD both eyes; wet AMD left eye with a small void in right eye.

Note 1.If registered ‘Visually impaired’ then you can confidently get a ticket for your carer free of charge. There’s also a hefty reduction on the railways

Note 2. With the Nexus 7 2 I’ll have a forward-looking camera; a lighter unit; better power; better screen resolution for sharp characters; and faster processing;

………………………………

If this article has been of help or benefit to you, I’d love you to say thanks by making a small donation to JustGiving for the Macular Society. All the monies route directly to the Macular Society, particularly for research into a cure.
Thank you very much,
Cliff.

Age Related Macular Degeneration

28th August 2013
by cliff

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

2012, We’ve had to start planning already – updated

6th November 2011
by cliff

061111 Rebuilt one of the raised beds; planted onion sets; cropped last lot of potatoes; planted Broad Beans; repaired greenhouse door;. Next job cannibalise two small beds to make a square 12′ x 112′ for three espalier fruit trees.

231011 A few months have swept passed. We’ve given up both of the two ‘five rod’ plots on the new allotment and are just keeping the old – various reasons eg too much watering to do; two different locations; too many weeds!
So we’re running this one down. We’ve cleared all the crops except brassicas, some swede and next years onion sets (already going well), rows of raspberries, apple trees, lavender bed,
One early job is to move the composters (one down, one to go,) and that required tidying up the backside of the ‘old plot’, so one thing led to another…. as it always does, well at least I’ve more or less repaired the greenhouse!. AND as a sure sign of the next year, we have various types of beans drying on the windowsill, plus cucumbers, peppers and chilies.

270711 Well I had a week off, visiting an old friend, and whilst I was away Angie found it hard to keep the two plots going. Now that our son and daughter-in-law are really working their garden, they don’t need any vegetables or fruits from us. We’ve therefore decided to relinquish our new plot.
Obvious;y it’s full of crops at the moment but we can re-organise and release one of the two ‘five rod’ plots earlier. It does mean that we will need to buy and plant three new apple trees at the old plot.
We can release the first area after we have cropped the pole beans, the squashes, potatoes, beetroot and swedes, plus we mneed to re-plant the onions and garlics. This in turn means that we will release the remainder after the onions, garlics and brassicas have finished.
hey Ho!

2011, In the allotment we’ve started next season already

25th July 2011
by cliff

27 July. We’ve been continuously busy both on the allotments and on everything else. Suffice to say we are, and have been, cropping daily for the last two to three months. Now we are waiting for the tomatoes and peppers. Next years onions, leeks and brassicas are coming along nicely.

15th February, planted out some leeks. Cropping sprouts, cabbage, potatoes, swede, leeks. Four of the squashes succumbed to the heavy frost.

6th February we plan to attend “Seedy Sunday” at Hove Town Hall. It’s a seed exchange for gardeners.

24th January 2011. The rhubarb has started so We’ve covered some up in order to force it. The seed potatoes arrived today from Alan Romans.

Still cropping sprouts, potatoes, leeks, swede, cabbage. Over-wintering crops are coming nicely Broad Beans, Onions; the Globe artichokes are all healthy, the rosemary is flowering, the flowering currant is opening SO SPRING IS HERE.

9Th January already and I still haven’t planted out the carrots and the leeks. The cabbages I have already done and they’re under Enviromesh netting.

19th September 2010. Three beds planted with over-wintering onion sets and broad beans. Seeds sown in trays in the greenhouse are germinating, winter cabbage, carrots and leeks, plus maybe some winter lettuce and spring cabbage.

The seeds have all been ordered as well as the potatoes. I think we have a choice of about seven different squashes.

For the Doctors

10th February 2011
by cliff

For the Doctors

I use my eyes to see the far horizon
I use my eyes to see the beautiful South Downs
I use my eyes to see a buzzard climbing a thermal
I use my eyes to see a kestrel diving on its prey
I use my eyes to see the sunlight on the waves,
I use my eyes to see a swan mothering its cygnets.

I use my eyes to follow a butterfly
and then to get a picture of it.
I use my eyes to marvel at the moon
and the lightening lightning,
I use my eyes to marvel at the blue sky,
the green grass, the yellow daffodils,
the pretty pinks, and the red roses,
I use my eyes to create new art from sunsets,
holiday huts, the blossom on a branch,
palm trees, even fresh fruit.

I use my eyes to write books,happy and
hopeful books
I use my eyes to write poetry and prose
I use my eyes to create story cards
for learning english
I use my eyes to create
a website for learning english
I use my eyes for on-line forums
and discussion groups,
I use my eyes to see people and
to focus on their eyes and their faces.

I use my eyes to spot weeds and to sow seeds
I use my eyes to enjoy sumptuous squashes,
the merry marigolds, crisp cucumbers,
bolshey brassicas, the Barlotti beans,
the cornucopia of courgettes, and
the pile of peppers, the pretty petunias,
the lines of leeks and the lovely lavender,

I use my eyes to harvest the bags of beans,
the bunches of onions, the gaggles of garlics,
the purple plums, the tons of tomatoes,
the armfuls of artichokes, the pots of potatoes,
the piles of pumpkins,
the baskets of strawberries.
the heaps of swedes and parsnips.
And now to read the menu

I use my eyes to cook and to wash up
I use my eyes before we cross the road
I use my eyes to see the road ahead
I use my eyes to see the path over the Downs
I use my eyes to see the boardwalk to the pier.
I use my eyes to enjoy dancing and the theatre

I hope to use my eyes for grandchildren,
I hope to use my eyes for my wife as we age.

My eyes I take seriously and personally,

Yours truly,
Cliff Jenkins,
3rd September 2010 (V 111110.)

AMD – getting better (?)

10th February 2011
by cliff

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

Top

Re: getting better (?) EXTRA

by 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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