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.

Shoreham Soundball Tennis

Join us at
Shoreham Soundball Tennis

Tennis for Visually Impaired people

Visually Impaired (VI) people of all ages, abilities and circumstances are made very welcome. We provide the opportunity to to learn and to play Soundball Tennis. We provide both the equipment and the training.

So we’re looking for VI people plus sighted volunteer players and umpires, coaching is provided for everyone as are Rackets and balls.

Come and See for yourself on Mondays at 5.30 – 7.30. ts, FREE taster session then £10 per session or £20 per month or £190 per year. FREE facilities for volunteers

 

Great Fun with Improved fitness, agility, effective vision, weight-loss, friendship, new experiences, and fresh air.
Contact: Cliff Jenkins 07582 902 922

A Not-for-profit group run
in conjunction with Sussex County Lawn Tennis Club
Kingston Lane, Southwick, West Sussex, BN42 4DJ

Our eyes, Our Wonderful eyes.

Our Eyes. Our wonderful eyes.

Our eyes were designed for rural and forestry living.

We’ve only had electric or gas lighting for one hundred of the millions of years over which we have developed our eyes. Just one hundred years, less than the blink of an eye, no wonder they are serious risk.

Small wonder. Our eyes have to handle huge demands and long hours of artificial light, caused by:-

  • office and home lighting

  • shops, arcades, supermarkets and shopping malls

  • searchlights, spotlights and stage lighting

  • photograph / camera flashes

  • ultra-violet lights in clubs

  • street lighting and vehicle headlights ( and rear fog lights)

  • television screens particularly bright white light

  • computer screens, smartphones and tablets

  • lasers

  • plus glare from white painted buildings and glass fronts

  • plus natural hazards from snow glare and glare from lakes, rivers, seas and oceans

Small wonder our eyes can benefit from extra care and attention including extra lutein to supplement the natural lutein in our eyes. The eyes use this as a natural ultra-violet ray protection and for all “blue” light.

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.

(28th 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:…….

 

 

What Music means for me

Mmmm!,So the Open University and Royal College of Music have launched the Lstening Experiences Database to try to understand the relationship between composers, performers and listeners.. I think that is much too facile. Take me for example….

NOW Listening to Scott Joplin piano rags. Three styles… The Stuart and Bradley James, the man himself and the music for the ballet Suite Elite Syncopations. All started by buying sheet music at a church Jumble Sale. Wonderful.

A crazy mixture of music experiences.

Now its WOAD...very modern. Powerful guitars.

1170 tracks on my tablet, 2200 on my main computer, most recently from Amazon and Spotify. Prior to that vinyl transfers to dpigital plus CDs.

Started with singing church music then learning to play the piano plus Scout campfires and Gang Shows plus the school choir (Walpurgis Night)

Winning piano competition …. Splfeggio. Marriage of Figaro TV broadcast from Big School.

My sudden interest inreacting to the ideaa of the database was caused by a brilliant concert. Berlin Philharmonic / Simon Rattle/ Prokofiev Piano Concerto No.3 / Lang Lang. Four. Geniuses. Wonderful. The camera work was superb.
NOW listening to it (Prokofiev) and the studio sound is even better.

Also over the last three years ballet from the shoi…..Soshtakovich,Tchaikovsky, Katchaachurian, Stravinskiy, Fuare, Mikus, Delibes, and also Brubeck Linchbury

Then here is West Side Story, My Fair Lady, Cabaret, Mamma Mia! With each of these I became emotionally engaged.

Now Its Raining Men

TIMELINE

1947 Wind up gramophone with Puccini Madame Butterfly, One Fine Day. Then Sunday School and hymn singing starts. AND Frere Jacques, Sur le pant D’Avignon,
Allouette, gentile Allouette,
1948 Started to learn to play the piano, Schubert Mozart Chopin, Bach,
1952 Watched Mikado and other G&S a other amateur operetta’s
1953 Coronation marching bands plus later Military Tattoos and also Colliery Brass Bands,… The Post Horn Ga!lop.
1956 Stopped learning piano. Saw Ruxolf Nureyev dancing Le Corsaire.
1957 Mi!itary band for Queen Sout marchpast at Windsor Castle; Carol singing; Dancing g Rock and Roll,skip Jive; Country Dancing
1858, Week of Operas at the Alec, standing at the back.
1959 Abide with me. family funerals.
1966 Jesu Joy of Man’s Desiring at our wedding; Vacationes enan Mallorca… Hava Nagula
1968 Rumania Circocilia and folk dancing
1976 Songs sung in Mandarin, extraordinary, so melifulous
1980 Singing the Marseillaise as we sail into a French harbours. Yacht club Dinner Dances for jive, rock and somtimes even a quick step, waltz.
2010 Found ballet again.Bright Stream, Spartacus, Le Corsaire, Concerto (BRB),
2014 Concert Simon Rartle , Lang Lang, Prokofiev Piano Concerto 3 with Berliner Philharmonic. Bought the down!oad from Anazon.

Stopped Spotify subscription.

Now Spirit in the Sky

Star Wars, Gladiator. Happy Feet animation ballet, Fantasia animation ballet.

Then there is exquisite playing eg Nigel Kennedy, Vanessa Mae, Kyung Wha Chung, Julian Lloyd Webber, Rachmaninov, Bernstein, Ray Charles, Elvis Presley,

And La petite Piaf, Marlene Dietrich, Esther Ofarim, The Carpenters, neil Diamond,

So for me music comes in all shapes and sizes. There are composers and performers and listeners. There are a!so extemporisers ( both jazz and church organ introits) and amateur performers, including karaoke, plus active, participating listenrs eg dancers,skaters and then sedentary listeners. People wander across a few, many or all categories.

My preference is now the combination of people interpreting music in all forms whether skating or stage dancing or ballet or The Prottopopovs, Torville and Dean, Kenneth Macmillan, Frederick Ashton, even the choreographers on Strictly Dancing.

For me for the future I need to crack, the problem 9f sheet music for my digital piano and / or to learn the auto-backing in the CDP 220 and create my own music.

NOW listening to Liebestraum by Liszt

AND the good news is tioday’s break-through because rather than waiting to try to get Musescore.org on my (Ubuntu) computer I decided to adopt a more classic approach by getting a music stand and drilling a hole through my desk so tht the music is directly in front of my eyes. I mmediately rang the RNIB muusic Team to request a copy of large print score for Brahms wltz in A Flat. Let’s see how I get on.

AMD -Hints and tips for coping

Hints and tips, strategies for coping with AMD or other Visual Impairmentg

Hold your left thumbnail straight down and use this as a rest of when slicing onions etc. And similar for sawing !ogs though using your knuckle instead of your nail.

Throw away mugs with dark inside as it needs to contrast with the liquid, coffee etc

Always a contrast, brown eggs not white. For growing or cut flowers lways look at contrast. Green with yellow. Purple with white. Green with white. Cream with red.
Yellow with black.

Boots I reckon are a must, because of rough walking … kerbs and bad pavements. Clothing for any weather is also critical.
Work out your safest route, starting with a short walk, gradually working further afield.

Learnt this week, gently tap a nail in, then spot the head accurately and let the hammer swing on to it

Learn to use a tablet or Smartphone. Future-proof yourself.eg Moto G £ 153.

Large print picture childrens books, for reading to grandchildren

AND then there’s the Nexus. for I calendar, news, weather, books, notes, email, music, reminders, camera, magnifier, crossword puzzles, web site favorites, to do list, phone no’s, pictures and photos.

Always choose colourful food, not mashed pots, cauliflower, poached plaice. . Choose squash, roast pots, peas, carrots, meat etc

Get certificate for Visual Impairment / bus pass. MUST

Use tablet for audible alams / alerts

Monocular, for reading bus,plane and train destination / departure boards.

Only drink RED wine and always get screw top bottles.

……………………………….

If this article has been of help 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.

A look back at Snowdon.

It was only when I started looking at Google maps that I realised just how much of Snowdonia I have tramped across. The Glydyrs, the Carnedds, Tryfan and of course Snowdon. I remeber vividly one January, the gale-force blizzard we survived during my mountain-leadership course!

So fifty or so years on and with my poor eyesight I thought I’d better get there whilst I can still see. So the task was to get there, to see what I could climb and then to get back again.

My route was by train via, I think, John o’groats and all points west to Bettws-y-Coed and then by Sherpa bus to Pen-y-Gwryd. I stayed at the same hotel as Edmund Hillary and Sherpa Tensng used when preparing for their successful ascent of Everest. Indeed my route would take me directly above the cliffs that they practised on.

I was fully prepared and equipped for the worst weather and of course it was beautiful – I bought a hat!

Of the four paths from the car park at Pen-y-Pass, I selected the most southerly route as it was the most exciting and most beautiful and indeed the least used.

It was all just as I remebered it. Breath-taking, in more ways than one, Hard work and womderful mountains,

You climb up over and dowmn the Clwyds, at about 2700 ft, and then climb up again to Snowdon.

Starting from the Miners’ Track, I branched off and followed the southerly track. Iwalked up and climbed up over the Clwyds and along the knife edge ridge that I remeber so well. It was just as if I’d been there just last week.

In the event during the descent my thighs couldn’t cope with the jarring from several hundred missed foot steps and I limped down my escape path. I spent the next day hobbling and limping between the the bar, the garden and the restaurant on a abeautiful sunny day overlooking these gorgeous mountains. I marked out a flat route, a lap of about a thousand yards which I walked probably eight or ten times and gradually my legs recovered.

I duly returned home (not quite as tame as it sounds.)

An exciting trip to do on your own, maybe a daunting trip if your eyes are out of focus and you’ve lost your central vision. As Gavin a friend of mine says ‘Well. I took some photos and I can now see where I went’.

I have a wonderful shot of the knife-edge that I wanted to see again and of the raw beauty of these wonderful craggy mountains.

ABSOLUTELY FABULOUS and even better for having done it all independently.
10th July 2013
……………………….
27th December.
Six months later I can now see that this expereience has worked wonders for my self-confidence, proving my self-reliance and restoring my self-esteem.
Cliff

………………………….

If this article has been of help 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- 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.

Just Giving – Cliff’s Blind Walk

Just Giving For the macula Society

I’m asking you to give to the macula Society because they help people come to terms with the aprtial or complete loss of their sight, they provide local support groups to work with them and to help them.

The society staff are supplemented by fourteen hundred volunteers.

In my personal opinion their most important task is sponsoring research into potential cures.

It appears that the best probabaility lies with stem cell research. There are several teams working on the problem One difficulty they are tackling is inserting the new cells in the right place and in doing it at a cost people can afford, whilst others are trying to grow the new cells in quantity.

Just Giving for the Macula Society

I couldn’t ask you to sponsor my recent climbing in Snowdonia because it could have meant putting people at risk so I ask you to sponsor me on a simple six mile walk but wearing the dreadful simulation glasses. I have spare ones if you want to join me!

Just Giving For the macula Society

The walk is planned for 10.30am on Saturday 19th october 2013 starting at Carats Cafe east of Shoreham Harbour entrance proceeding along the seafront along past Hove lagoon to Brighton Pier and then along Marine Parade to finish at Brighton Eye Hospital.

With your supprot we can solve this problem and find a cure.

Please help, thank you.
Just Giving

Posts navigation

1 2 3 4
Scroll to top