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.

Shoreham Soundball Tennis started

Shoreham Soundball Tennis started on 15th June 2015 with our first coaching session.
The fabulous benefits of tackling Sound Tennis include:
Sharing the improvements and the frustration with others

Having a beer afterwards

Making new friends, all like-minded people

Joining in the fun of  ‘away’ matches

Getting out of the house frequently
Trying something NEW

Improving Fitness

Improving Visual Acuity – stretching the brain

Losing weight

Helping others

 

Learning / relearning old skills – muscle memory

Opening yourself to further challenges

Sheer Joie de Vivre, Slf-confidence, and “I CAN”
So what are you waiting for?

AND It’s easy to play “Sound Tennis” if you’ve been a player no matter your standard. Besides nobody can see your goofs. (We’ve all got the same problem.) You’ll soon get into the swing of it.

Go online for ‘Sound Tennis Sussex’ on YouTube and you can see(!) how easy it is(?) Our oldest player is over ninety so there’s no excuse. In the video the first chapter shows B1s, so see them compete…. it’s almost unbelievable. (To keep it fair, they all wear eye-masks, no sneaking allowed.)

There are groups of Sound Tennis players all over the country enjoying themselves, so get out and find them. If you can’t, then email me through the “Contact Us” form and we”ll see how we can help you sort it out.

We also joined in the National Championships in Newcastle in May and are looking forward to more get-togethers including overseas activities.

Love 15

Cliff

 

 Shoreham Soundball Tennis started on 15th June 2015 with our first coaching session.

TaRRa

Cliff

BTW Carers can play as well, so everyone can join in the fun.

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.

Age Related Macular Degeneration

Updated 28th August 2013 Still battling on. Suffered a couple of setbacks as the doctos gave me some rablets for High Blood Pressure and they may have been too successful as my eyes suffered. Nine months on my eyes may be recovering. Still I thought you might like this link to hear what an eyecare professional comment on the Macular society.

I also need to tell you taht I’m now taking 80mg Lutein each day and whether it’s actually working or whether it’s told my brain that this is a serious problem and needs to be dealt with i don’t know but it’s not as bad as when I initially had the HBP pills damage.

By the way my left eye developed Wet AMD.

Updated 02022011 Lutein. I read somewhere about positive effects of Lutein. The test cases used 20-39mg per day and got positive results. I’m fairly well built and I need to get a result so I’m taking 40mg per day. I need to clear my eyes fo the gunk if I can. It seems to be working as I’m back to reading the paper, in the right light of course and it’s easier to use the computer and the Kindle. I’m scheduled for another eye test in early July. I’ll report how we get on.

Posted 11012011 Age-related Macular Degeneration.

I found I was suffering from dry AMD about four months ago. I also have a slight void in the macular muscle which is distorting my vision.

My optician, well his lady assistant actually, picked it up and arranged a fast appointment with my optician / ophthalmologist, because he has an OCT (Optical coherence tomography) machine. Yes, there was the build-up of dry AMD. He arranged an appointment with the local eye hospital but the specialists there couldn’t see any build-up and sent me forth saying there was nothing there “I can’t see anything wrong.”

I assume that’s why they also have an OCT machine, because it can ‘see’ better than the human eye. However their machine is fairly old and can only take a photograph of three slices across the eye whereas my optician’s is the latest and takes 127 photographs – forty times more detailed.

Suffice to say I got a new appointment at a different eye hospital, with the same result even though their machine was slightly newer, but it only takes a photograph of seven slices across the eye, so my optician’s is still nearly twenty times more detailed.

I’ve told my optician that ‘in the land of the blind, the one-eyed is king’ and he’s the king, also that he has already seen more in his patients eyes than the ‘experts’ have done.

As far as treatment is concerned there’ is no treatment yet for Dry AMD, though possibly lutein may help. I’m taking 30mg per day in the hope that it’ll do some good. Also I’m hoping stem cell treatment may be possible at some stage.

Meantime I’ve turned down the brightness of my computer screen; bought a Kindle; rebalanced how much time I allocate to the various tasks I ask my eyes to do and I’ve bought a Blu-ray player.

But it’s not looking good.

No driving at night; no clear view of a person’s face; no recognising people across a room (except by listening); no newspapers;  no lip-reading;

As I said, it’s not looking good.

Cliff

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