Tag: Shoreham AMD Support Group

E-Audio Books

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.) 

Absolutely fabulous, 

With Audible you get:

You can return books and get a credit.

200,000 books

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.

Absolutely fabulous..

For carers and friends

I have just added this to the “ 4.1 Helping carers to cope. Read more.
We, sight-impaired people, cannot see a smile, or a wave of the hand, or “catch someone’s eye”, we cannot recognise a person’s face.

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.

Huge thank you to Adur Council


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.

US, all of us vs. AMD. The Video

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.

We are.

 

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

We can

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.

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.

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:

AMD garden

  • 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 – YES WE CAN

Yes We Can

 

This a long term programme of ideas.

AMD Support Group meets 2nd Tuesday of each month, Shoreham Centre.

“Help me card.”

Get Disabled Bus Pass, with carer.

 

Train peripheral vision to do all your seeing whether reading or getting about or watching the screen

Take B12 plus Lutein to support your macula.

 

Join 4Sight walks,

Attend Macular Society Meet the Doctors sessions

Join Southwick Slow Tennis Mon 10.30, Tues and Fri at 14.00 at Sussex County LTC, Kingston Lane.

Join Sailability for the disabled, Sussex Yacht Club.

 

Join 4Sight

Join Macular Society

Join RNIB (FOC)

 

Join IT Support Groups>:

  • 4Sight 3rd Wednesday of each month for members and carers

  • IT > Fri am Southwick Community Church

  • IT > Mon am Shoreham centre

  • AMD IT Support Group, 4th Tues each month

Get a Smartphone and link with Chrome Cast to TV.

  • Link to Amazon, Google News, Gmail, Diary

  • Set up INote for making notes

  • Link with local library for free audio books

  • Get an on-line newspaper

AND don’t forget special prices at cinemas (Komedia and Connaught) and theatres for –

  • Musicals and plays eg RSC, National Theatre

  • ROH for Opera and ballet

  • Glyndebourne,

  • Bolshoi Ballet,

  • Contemporary dance,

  • Films with AD at the Ropetackle & Connaught

Ideas to make your life easier:

  • Orange Tape (4Sight, RNIB)

  • Coloured stickers (WH Smiths)

  • Yellow labels (eBay)

  • Yellow lenses for improved clarity

  • Peaked hat or cap to reduce UV light

  • Telescopic white stick

  • Waterproof walking shoes (Hotters?)

  • Dark framed glasses

  • Mugs with white inside

  • Only drink red wine!

 

YES, We Can.

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