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

Macular Society National Conference 2018.
  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 populstion 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.
  1. 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.

Alan Titchmarsh was wrong. AMD Garden.

 

Alan Titchmarsh was so wrong with vast amount of white both for the fencing and the wide marble-like paths with the added insult of topiary!

We give you Gorgeous Gardens for AMD people

The Key Components are probably:

  • Colour Contrasts are crucial..
  • Green is restful for the eyes.
  • White is great with green plants.
  • Yellow is bright and cheery.
  • Bright Red is good mixed with white.
  • Blue is good in vast banks , eg bluebells.
  • No pink (looks brown or dead) no brown (it is dead or dying,) no purple (as it looks like brown or black).
  • No mixed colours in one bloom as they blend into a mess or pink or brown.

So some suggestions and ideas are therefore are:

  • Hedges or shaped bushes of Forsythia or Hypericum (fences painted pale blue give a superb contrast ) In winter the sweet smelling shrubs. I also use Bay trees and Rosemary.
  • A Yellow bed, with polyanthus, daffodils, yellow tulips, yellow azalea, yellow dahlias, yellow gladioli, yellow chrysanthemums.
  • A Red and white bed: red tulips, Busa Lilies, roses, geraniums, peonies, dahlias, chrysanthemums.
  • An Orange bed: French Marigolds, orange osteospernums,.
  • A White bed, snowdrops, osteospernums, white flocks, white roses, white lilies, white dahlias, white chrysanthemums,
  • Kitchen garden of plants for touch or smell, eg sage, rosemary, mint, thyme, parsley, dwarf french beans, beetroot, leeks, onion sets (with Petunias), chives, garlic, lavender plus Tumbling Toms (some need a raised bed) and also night-scented stocks.
  • Wherever possible scented climbers,  like jasmine, honeysuckle, clematis, sweet peas,.
  • Indoor plants eg Greek Basil and Basil.

 

AMD progress 2018

Well it`s been a full year.

Our AMD support Group in Shoreham is running and now has about fifteen members.

Five years after joining Sound Tennis some of us are now playing outdoors at the Sussex County LTC and using normal yellow balls on normal tennis courts.

With my wife we are still really enjoying our allotment actively running it throughout the year. We have leeks, sprouts and purple sprouting broccoli growing well.

I have noticed a gradual move to primary colours with good contrasts with green.

We enjoy the large print Scrabble.

I`m pleased to say that along the routes I use that the paths all not clear of overhanging branches, so its easy to make up my target  step goal particularly with watering the allotment.

Finally I have recently joined Sussex Sailability and taken up sailing again; an exciting physical and mental challenge as I relearn how to make the yacht go faster so that we can win races!

(For new readers, I am Registered blind as I have total loss of central vision and this coupled with Wet AMD in my left eye. It all started about eight or nine years ago)

It would appear that we have 65000 cells normally in use in each eye but only 6500 for peripheral vision. Wit two eyes combined this arithmetically means that we only have ONE per cent of our original vision.

As tine goes on I find I am more prepared to do things that I thought were impossible.

AMD update September 2017

I have decided that I stay positive, proactive and happy, everything else is looked after by my patron saint “San Fairy Anne”

So I try to be sociable, I try to help people at the AMD support group, I do speaking engagements for the macular Society.

I play tennis or rather I try to play tennis because it’s sociable it keeps me fit and because it forces me to train my eyes to follow the ball accurately. This has been dramatic in helping me get the most out of my eyes.

My wife and I love our allotment a we love being with our family..

I also go for walks out of the Downs and walks along the beach. I go to my favourite restaurants and cafes.

My right-hand man in achieving all these things is my smartphone. It’s a moto X from Motorola and it runs the best version of Android I’ve seen yet.

The latest version has larger text which is adopted by all the apps on the system and phenomenally it now has text to speech.

I love music and have a wide selection all on my smartphone and that collection is available to my hearing aids through Bluetooth connection as is my use of the TV. As I said phenomenal.

 

Oh yes by the way I’ve just had my 19th injection for wet AMD. Wonderful. It’s like opening the curtain.

 

 

AMD support – Got poor sight? Join us.

 

Got Poor Sight ?

 

We know Reading is difficult.

We know crossing the road is difficult.

We know even just enjoying life is difficult.

 

So join us and learn how

to get the best out of life.

 

 

With Shoreham Macular Support Group

 

 

2nd Tuesday each month

10.00 – 11.30am

at the Shoreham Centre

My notes for talk about AMD – Macular

AMD Facts (source Macular Society):

  • 51% of over 65s have the start of AMD

  • 15% of all over 80s have advanced AMD

  • time from initial symptoms to severe is usually between 6 and 12 months

AMD causes progressive deterioration of sight:

  • no driving

  • no reading (newspapers, TV programmes, books, signs,)

  • no writing

  • fewer smiles, no face recognition. No eye contact

  • loss of colour definition, and clarity; need more light,

  • no depth perception

AMD Pre-emptive defence:

  • Get OCT scan from Peter Marson in Church Road Hove
  • Take Lutein

  • Get fit, you’ll be walking a lot!)

  • Get a good smartphone

  • Join Shoreham AMD Support Group at The Shoreham Centre

  • Give me a call, Cliff on 07582 902922

  • Use your sense of humour, plenty of obstinacy, and a pair of waterproof shoes

Cliff Jenkins, February 2016

My “Please Help” Card, It’s wonderful

My “Please Help” Card says “Please help. I’m visually impaired.” and it’s wonderful.

I no longer have to say anything about my situation, I show the card and ask my query as if I was completely normal.

Absolutely Adult to Adult – “I’m OK, you’re OK.”

I must give you my example from yesterday. I had booked two tickets for the Barbar v Samoa Rugby Union match at the Olympic Stadium and unfortunately my carer couldn’t make it. Do I go or not?

I have used my Yellow Card on many occasions and knew it worked but this would be extraordinary. From Shoreham By Sea to the Olympic Stadium in Stratford, East London and return. Let’s see when I used it:

1. At Shoreham Station when buying my Travelcard,, just as an alert that I may appear slower than I am.

2. At Brighton Station when asking a station official time of the next train to London Bridge (as there are huge destination boards showing just that information.

BUY ONE NOW, click here.

3. At Bank Station to ask a DLR (Docklands Light Railway) official for a train to Stratford.”Next one, change at Canary Wharf”.

4. At Canary Wharf, a DLR railway cleaner for the next train to Stratford.

5. At Stratford, well you can see the Olympic Stadium but how to get there, I asked two PCSOs standing together, through the tunnel over there, right to the end and then into the Westfield Centre and take the escalators to the second floor”. (I wanted an Italian restaurant for some lunch. )

6. At the end of the tunnel I couldn’t make out thee arcade with the escalators, (actually I couldn’t see an arcade at all) so I asked another PCSO and he looked and then said “I could use a walk, I take you over there myself. ” straight to the escalators.

7. Up two flights of escalators  and nothing but clothes shops, but no Italian Restaurant. I selected a shop selling expensive watches and asked and a delightful young man gave  me a smile to warm your heart and said “Up there to the left is “Strada”.

Success. half way, time to relax a bit.

BUY ONE NOW, click here.

8. I showed the waitress my yellow card as I can’t read a menu.I had chosen an Italian restart as they always have Gluten Free pasta. But No. Not Strada. We settled on  salad with cold poached salmon. Just right.

9. Out of Westfield was straight forward as all the stewards were directing people to the Olympic Park so my next use was with the first Olympic Stadium steward who then read my ticket and directed me to the Block I needed. It’s wonderful indeed.

10. Up the stairs into the Stadium and I realised my ticket was not up in the Gods but higher still. Pulled out my card to ask if there might be any empty seats and he immediately put me in row 30 rather than row 56!

Well the match was a trifle difficult as my “Blodge” more than covered the whole of the area of the rugby posts and if I turned my head to look at the screen the same problem occurred. I learned that I would be OK if next time if I sat in the expensive seats in the middle and also if I set up my smartphone to listen to the radio commentary.

AND so the return trip. I made a fundamental error I did not precisely retrace my steps from the stadium to the station.

11 and 12 got me over the bridge into the station.

13. Another PCSO got me on the Jubilee Line direct to London Bridge.

14. The last time I was in this part of London was before they built the Jubilee Line! I turned to a delightful passenger showing my card and said that I didn’t know the Jubilee Line and couldn’t read the Tube Maps. She explained that he train actually went direct to London Bridge. Her father also has AMD and I think she said that he runs ten K every day! Notwithstanding that I gave her my card so that I could introduce him to Soundball Tennis.

15. At London Bridge Station I went to the barrier staff to find out the platform no, of the next train to Brighton. What a fantastic trip.

This may not necessarily be what Brighton and Hove Buses had in mind when they decided to produce the Yellow Cards, but I wouldn’t have done it without the confidence their cards give.

So multiple thanks for the freedom the Yellow Card has brought me.

Thanks also to so many friendly and helpful people. What a lovely world we are fortunate enough to live in. AND they were all smiling.

BUY ONE NOW, click here.

………………………………………………….

September 2015

It’s so good my card wore out, so I’m having some made.  I can give them away, give them to people who need them….. I might also sell some!

BUY ONE NOW, click here.

 

 

 

 

 

Oil and Water. Sighted and unsighted meeting

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.

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