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AMD & Cliff’s Action Plan for AMD

11th January 2017
by cliff

Well seven months later, 11th January 2197 update.

My wet AMD hid the attack by Dry AMD in my left eye. “Both of your eyes have extensive damage from DRYy AMD so we don’t see any benefit of continuing the injections in your left eye.”

I know the extra sight I get after an injection so this proposal appalled me.

I have added a special pocket to many pairs of trousers so as to carry my telescopic white stick all the time just actually using it for the shortest times.

SO WHAT. I hauled out my boots and went for an eleven mile walk over the South Downs today, just to prove I can

My effective vision is as good as it has ever been.

………………………………………………………………………………………………

September 20116 Update:

I’ve had AMD for six to seven years mow. I had early onset Dry AMD in my right eye which later deteriorated to the left eye and with Wet AMD. There have been many ups and downs and I’m pleased to say that my effective vision is better today than at any time since diagnosis.

Since April I have been taking Lipitor at a gradually increasing dosage from 20mg per day to 80 today (September). We have no objective measurements yet and possibly not until January 2017. I bought the Lipitor from pharmacies in Portugal while visiting.

I have stopped carrying a white cane.

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August 2014 Cliff’s personal action plan, a schematic.

develop your own personal plan

1. Take Food Supplements
Drosen is dead cells not washed away, so I take Lutein and Zeaxanthin with the zinc supplement and vitamin b12. I take 80mg, rather than 10mg because one always lives in hope.

2. Look Beyond.
I’m using my brain to instruct my eyes to “look beyond” or round the splodge to get my peripheral vision looking ahead of me.

3. Go Walking.

I go walking in parks or the countryside as its green – relaxing and good for the eyes and the soul. Target, 10,000 paces a day. This sounds a lot but this is only an hour and a half.

4. Go Further and Even Further.
To move on I need to try to go further in every area of my life, all the time, always rebuilding my self-confidence.

5. Get Visual Impairment certificate.
Gives you reduced prices for your carer and may be some government “Benefits”.

6. Always say YES.
It’s scary but the fastest way to re-develop myself.

7. Get a Tablet
Start with this technology NOW and learn to use it fast as it’s a life-saver, as it keeps you in touch with the world. Without being in touch with the world, quality of life can disappear down the drain.

8. Get and Help Another VIP
A problem shared is a problem halved.

9. Build up an Exercise Regime
I do Tai Chi and indoor tennis. I run a productive allotment.

Oil and Water. Sighted and unsighted meeting

29th August 2015
by cliff

OIL and WATER? Sighted and the Unsighted

Are we troglodytes?

I think there is a natural collision which makes it difficult for non-sighted people to join and work with sighted people.

The differences that need to be circumvented:

travelling to a venue i.e. public transport plus walking or car
Getting to a regional meeting locally when the bulk of the public transport links to a hub, like a star formation whereas by car anyone can go across in any direction
counting out change
recognising a face more than five feet away
seeing a smile or a scowl, seeing a laugh
reading the minutes, accounts, letters etc in a meeting
making notes and diary entries
finding the toilets
pouring a glass of water, white wine or a gin and tonic or even milk into a white cup
completing a form
reading my debit / credit card details to key them in or to dictate them
reading non-verbal signs and body language
reading a noticeboard, a label, numberplate, bus tine-table

An endless list, all minor even un-noticeable and normally inconsequential..

Any one of these is taken for granted by the sighted and leaves the unsighted totally at a loss.

AND, my proposition, is that every instance gradually adds to the frustration until the pressure is too much or exhaustion takes over.

Either Explosion or Exhaustion.

……………………

September 2015

What a superb weekend, organised by the Macular Society. There were probably sixty ‘unmsighted’ people there.

Y you can relax in each others company because you largely have the same experiences and togther you can laugh about them. Also suddenly the ‘unsighted’ out-numbered the ‘sighted’.

Oh! The luxury of finding others who can read, but only three paragraphs. Then it’s trashed.

I hate the people who cannot write concisely, who pad everything out so it seems more important and the ones who write long inconsequential introductions.

Open letter to Macular Society re Lutein v AMD

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:…….

AMD- Three years on AND NOW THERE’S MORE

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.

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

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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.