Cliff’s on-line Booklet “Winning against AMD”

Winning against AMD.

 

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.”

 

Contents

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.

Appendices

Every WIN is important.

We really can rebuild our self-reliance, resilience and our self-confidence.

…………………………

Winning against AMD – Age-related Macular Degeneration                                                  

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EPSTENNIS _ Tennis Especially for the Partly Sighted

EPSTennis

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.

Ray’s Comments:
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.”

RULES

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.

cliffofyoolaa.co.uk@gmail.com

Barry’s comments:
“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.”

 

 

EPSTennis for the Partly Sighted, with normal tennis balls

EPSTennis, Tennis for the Partly Sighted.

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.

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 and  we are just round the corner in Kingston Lane, Southwick.

Do please contact me and we can arrange to meet. at the club.

Cheers

Cliff Jenkins

07582 902 922.

 

If you are fully sighted our main club will be delighted to welcome you.  Come along and join in.

Sussex County Lawn Tennis Club, PSP Section

CARERS can care too much.

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.

A superb day Snail Hunting

A superb day Snail Hunting

Snail - Union Flag

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.

Snail - Golden
—————–
By the way I have had AMD for eight years.

The Eyeopener

The EYEOPENER

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.

Inspirational Speaking – MOJO Regained, by Cliff

“MOJO Regained”.

It`s taken nearly ten years, from a disastrous point of utter depression. 

NOW I CAN

  • Do the allotment.
  • Use a computer.
  • Use a smartphone.
  • Keep up-to-date.
  • Play Mahjongg.
  • Play Scrabble.
  • Eat well.
  • Play tennis.
  • Helm a racing yacht.
  • Go for long walks.
  • Update my own website.
  • Cook my own dinner.
  • Go to the cinema, theatre etc.
  • Enjoy music.
  • Have a laugh and
  • Be an effective speaker.

I had to develop a new way of doing each of them.

Key moments:

  • Getting to York.
  • Climbing the Clwyds.
  • Playing tennis again.
  • Making my vision better.
  • Taking the helm.

So please contact me and we can arrange an inspirational talk specifically for you.

Macular Society National Conference

  1. 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.
  2. Speaker David Crab of the Crab Lab  is trying to accurately measure the extent of vision loss.
  3. 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.

If you think the Macular Society ar doing a good job please donate here.

LUTEIN – The Macular Society’s Comments

These are exciting times for research.  Promising new drugs are in development, important genetic discoveries are being made and we’ve seen the first safety trials of stem cells in the human eye.

 

A large study, the Age-Related Eye Disease Study 2 (AREDS 2) suggests that a high intake of lutein can reduce the risk of developing advanced AMD. The Aston researchers concluded: “For an informed population, many AMD participants were under-consuming nutrients considered to be useful for their condition.  Participants without AMD were more likely to reach recommended daily allowance values”.

[ Publsher’s Comment ; The AREDs 1 study is in fact more important.]

 

Lutein and zeaxanthin, key constituents of macular pigment, have been found in high levels in the retinal rods.  This suggests that macular pigment could play a significant role in keeping the retinal rods healthy and maintaining how well our eyes are able to adapt to the dark

 

Consider a nutritional supplement if you cannot be sure of getting high levels of antioxidants in your diet.  There is some evidence that a specific formula of antioxidants and zinc tested in the second Age-Related Eye Disease trial  (AREDS 2) can slow down the progression of AMD in some groups of people.  No supplement has been shown to cure AMD.  You should always talk to your ophthalmologist or optometrist before taking supplements, as they can interact with prescriptive medications.

 

The Macular Society has information on all aspects of living with macular conditions.  We also have local support groups and a training programme to help people learn to use their peripheral vision more effectively (called “skills for seeing”).  We have a professional, confidential telephone counselling service, a befriending service and a team of “buddies” who can provide reassurance on injections and visual hallucinations caused by Charles Bonnet Syndrome

 

Forecast the Future – New Materials, Graphene – cj4

Forecasting the Future –
start with the past and add in some Black Swans

Forecast for New Materials and Graphene

No forecast could miss out Graphene. There will be other materials though in the meantime Ill look at Graphene. there nearly eight thousand patents based on graphene. Here we can take a quick look at some of the changes we may see, for example:

High Conductivity

– lighter, more powerful,very-fast-to-recharge batteries (for cars, gadgets, medical instruments, drones, aerospace etc.)
– lighter, smaller, faster transistors than silicon-based ones
better telecommunications, better power distribution
– combined with photovoltaic cells to form a flexible panel for creating solar electrical power
– Sensors for drugs, explosives and viruses
– Graphene impregnated plastics and silicon

Stronger, the strongest material ever measured:

– Alloyed with steel could dramatically reduce the weight of steel so new designs and less cost for buildings and bridges
– Twisted or braided could be come immensely strong, both with and without elasticity
– Tennis rackets, tyres, saucepans,

Two dimensional not three being only one atom thick (a pile of a million sheets is less than 3mm high)which means:
– a coating on steel can make it rust-proof
– a coating on copper reduces corrosion by ninety-nine per cent
– flexible for making folding or floppy computer screens
– as a super-skin for ships to eliminate or reduce drag
– protective coatings against ammonia and hydrofluoric acidA

Harder than Diamond:

– Abrasives and polishes
– Saws,
– Steel for safes

AND then there’s Graphene Plasmonics!

AND then there’s AEROGEL and then there will other new materials.

Cliff Jenkins

My original thoughts:

“Power and Peace” (My previous attempts to understand how we got to where we are
“An Englishman’s Life” – Excerpts from my life for you to understand my questing and my journey
“Tomorrows’ Winds” (Book 1 of 3)
“Tomorrows’ Tides” (Book 2 of 3)
“Tomorrows’ Storms” (Book3 written but not finished) .

BUT May be I’m understating the possibilites, take a look at “Abundance”, http://vimeo.com/34984088

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