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.

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