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For years I have been avoiding the topic.
I realise now this was because on needing a whole new set of clobber, whether from the RNIB, my local library and other sources.
Ib the event I have chosen twome-audio apps Amazon Audible and NBL ( local library).
Both apps now sit on my smartphone. Inevitably the chargeable one has a greater far greater selection.Traditionally I always read thrills and adventures and I read then fast. So I have set the speed at 1.4 ( newspapers I listen to at 3 and its easy to repeat a paragraph.)
With Audible you get:
You can return books and get a credit.
2 levels: £7.99 for 1 book a month (£69.99 annual); or £109 annually for 2 books per month.
Cancel at any time and you still keep your library.
Download your book and later remove from your device.
There is a wish list facility.
And you get special offers.
All from an app. no other technologies, no other batteries, no other things to carry, no new account just part of Amazon.
I have upgraded to 2 books per month, approx £4 per book.
Every time there are people they are all, each one of them, strangers to us until someone says “Hi Bill” or Jenny or Cliff.
We cannot be proactive as any one we approach could be a total stranger.
We cannot start the communication, if you don’t start it then we don’t exist. We are just ignored…
And so we press on.
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.
3.Protect your eyes. Read more.
4. Surviving everyday life. Read more.
4.1 Helping carers to cope. Read more.
4.2 Carers can care too much. Read more.
4.3 Using a White Stick. Read more.
4.4 Personal Highs and Lows. Read more.
- App, 1 EPSTennis, Tennis for the Partly Sighted. Read more.
- App, 2 Thank you to organisations where people have helped me. Read more.
- App, 3 Regaining my MOJO. Read more.
- App, 4 Alan Titchmarsh was wrong. Read more.
- App. 5 Bits and Pieces I use. Read more.
Every WIN is important.
We really can rebuild our self-reliance, resilience and our self-confidence.
Winning against AMD – Age-related Macular Degeneration
To all members of Sussex County LTC
To the Main Committee
To the Secretary
16th February 2019
Thank you for the pleasure and enjoyment you have brought to partly sighted tennis players over the last four years, through your concession for carer volunteers.
Regrettably in a brutish and brutal manner your club withdrew this concession with peremptory demands with little notice and no reasoned explanation or discussion.
All our carer volunteers immediately resigned and our partly sighted players have had to follow them. The Eps Tennis group has therefore ceased to exist.
I too have now joined the exodus and will not renew my membership. I will therefore stand down from the Main Committee.
If the situation should change I will be happy to rejoin.
Tennis especially for the Partly Sighted
Dedicated to Val, a girl I met at the Macular Society Annual Conference, who would love to take up tennis again, and all the hundreds like her.
Benefits for everyone. You can enjoy, you can achieve, you too can sharpen up and improve reactions:-
- Improved effective vision, improved focusing.
- Reduced weight.
- Becoming fitter, developing better maneuverability, better flexibility and better balance.
- Fewer slips, trips and falls.
- Better spatial awareness and faster reactions.
- Improved concentration.
- Extra joy of recovering a lost element of life, a real WIN.
- Making new friends and having a laugh.
- Sheer joie de vivre..
- And it’s Fn.
Come and join us.
We are partly sighted tennis players and we are looking for other partly sighted tennis players. Come and join us. Rekindle the enjoyment you used to have.
We play two or three times a week and we play on normal courts, with normal balls, rackets etc., and we have an extra bounce.
Starting with Sound Tennis which is why we adapted their rules to normal tennis, but wanted to play outdoors and to play normal tennis as everyone else does.
We have various eye problems including Glaucoma and AMD. We are a friendly, sociable bunch who laugh about our experiences! The cost is only ten pounds a month.
“Brilliant, absolutely brilliant, good fun. Everybody gets on well with each other and we’re all getting better month on month, a great crowd and we enjoy beer afterwards.”
The rules are very simple.
The rules for EPSTennis are absolutely identical with the original rules being used for Sound Tennis internationally and on the formal LTA Tennis Rules.
Compared with the LTA Rules all we have extra is the exchange of alert before serving; “Ready?”, Response “Yes”, and response “Play” (all clearly, audibly and promptly) followed by the serve.
The only other rule is that partly sighted players are allowed a second bounce when the ball is in play, whether as a result of a serve or in the course of play.
Normal etiquette of calling whether a ball strikes “in” or “out” needs to be followed and calls made clearly, audibly and promptly.
Very recently we have started using ultra bright yellow balls and we have settled on the Wilson Australian Open balls as used by the LTA.
If we have an odd number of players whether three, five or seven then we cycle play round so that nobody is off court for more than five minutes. It also has the benefit that each individual player partners every other player.
Just like us you can enjoy, you can achieve, you too can sharpen up and improve reactions:
-Improved effective vision, improved focusing.
– Reduced Weight.
– Becoming fitter, developing better manoeuvrability, better flexibility and better balance.
– Fewer slips, trips and falls.
– Better spatial awareness and faster reactions.
– Improved concentration.
– Extra joy of recovering a lost element of life, a real WIN.
– Making new friends and having a laugh.
– Sheer joie de vivre.
– And it’s Fun.
“I had major sight loss about two years ago. At the time I was quite active playing tennis five times a week, cycling, and driving. All this had to stop abruptly and I thought I would never play tennis again in any meaningful way.
It was a big change and a time to take stock and adapt to a different lifestyle. I had become unable to do many of the things in my life that I had been accustomed to doing & enjoying. On the positive side I was still fit.
I visited the Sussex County to try to play on normal tennis courts using standard tennis balls. I liked the idea but I made no assumptions that I would be able to play but I was going to try and do my best.
Everybody was very helpful and welcoming. I felt no pressure, or embarrassment or mild humiliation when inevitably made ‘fresh air’ shots !
I came away from that first visit with a feeling of connection and invigoration. With memories of the few times I actually solidly hit the ball, and no memory of the many misses and miss hits.
Since that first visit four months ago I think I have begun to adapt and improve my tennis in many ways, and it is an ongoing learning experience. I am also getting fitter to play better, the reflexes and muscles are remembering and learning.
The joy and satisfaction I now experience playing partially sighted tennis also connects me to how I used to feel playing tennis for all those years before. It has made a positive difference to me on many levels, and I actually feel that I am playing normal tennis with the option of an extra bounce!
I know personally how much this special tennis has benefitted me so, I am very keen to spread the word to all the people who would like to come and take part.”
CARERS can care too much.
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.
Huge thank you to Adur DC
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.
A superb day Snail Hunting
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.
By the way I have had AMD for eight years.
Us,all of us, v. AMD – video
This is a terrifying example of what can happen; Watch our (Macular Society) new video at https://www.youtube.com/watch?v=JfGlf_jlWeI.
I was appalled and I mean absolutely appalled, by this lady`s experiences, after just five years, though you can get to the severe state in just two years.
Personally I have survived for eight years so far and I an still playing tennis even though I have total loss of central vision.
Based on my personal experiences
What can we do if or when it happens, the call to action;
- Immediately start training your peripheral vision to take over as your dominant vision
- Immediately start taking Lutein, 40 mg per day,
- Be angry, very angry, that it`s happened to you
- Channel that anger into helping you devise ways of checking that the road is clear, ways of doing things, of finding new activities, of creating new friendships,
- Join a support group because they`ve all been through it
- Keep active, go for walks (somewhere it`s green), get some good walking shoes, (much to my wife,,s horror I wore climbing boots every day everywhere for two years!)
- Get better lighting at home and work and use bright colours
- Think hard about how you can get the best from your smartphone
- Think hard about everything you do to make it as successful as you can
- And your support group will give you help with other things like kitchen gadgets and cooking
You can rebuild your self-reliance, resilience and self-confidence.
What can we do to stop it happening? There are no guarantees:
- Take Lutein with Ziaxanthin supplement, 10 mg (upto 40 mg) per day from the moment you watch the video. (Not medically proven but I would sincerely recommend it. The video appalled me so do whatcever you can)
- Naturally take a balanced diet, rich in kale, spinach etc
- Wear sunglasses, particularly if you are blue eyed
- Similarly wear a cap or other protection
- Keep fighting fit because you will need to actively fight it and also keep your brain fit to fight it
- Make sure you are up-to-date with smartphones Android or iphone
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.