Category: AMD, Macular Degeneration

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.

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.

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.

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.

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 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.

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

AMD & Cliff’s Action Plan for AMD

 

Well seven months later, 11th January 2197 update.

My wet AMD hid the attack by Dry AMD in my left eye. “Both of your eyes have extensive damage from DRYy AMD so we don’t see any benefit of continuing the injections in your left eye.”

I know the extra sight I get after an injection so this proposal appalled me.

I have added a special pocket to many pairs of trousers so as to carry my telescopic white stick all the time just actually using it for the shortest times.

SO WHAT.  I hauled out my boots and went for an eleven mile walk over the South Downs today, just to prove I can

My effective vision is as good as it has ever been.

………………………………………………………………………………………………

September 20116 Update:

I’ve had AMD for six to seven years mow. I had early onset Dry AMD in my right eye which later deteriorated to the left eye and with Wet AMD. There have been many ups and downs and I’m pleased to say that my effective vision is better today than at any time since diagnosis.

Since April I have been taking Lipitor at a gradually increasing dosage from 20mg per day to 80 today (September). We have no objective measurements yet and possibly not until January 2017. I bought the Lipitor from pharmacies in Portugal while visiting.

I have stopped carrying a white cane.

…………………………………………………………………………………

August 2014 Cliff’s personal action plan, a  schematic.

develop your own personal plan

1.  Take Food Supplements
Drosen  is dead cells not washed away, so I take Lutein  and Zeaxanthin with the zinc supplement and  vitamin b12. I take 80mg, rather than 10mg because one always lives in hope.
2.  Look  Beyond.
I’m using my brain to instruct my eyes to “look beyond” or round the splodge to get my peripheral vision looking ahead of me.
3. Go Walking.
I go walking in parks or the countryside as its green – relaxing and good for the eyes and the soul. Target, 10,000 paces a day.  This sounds a lot but this is only an hour and a half.

4. Go Further and Even Further.
To move on I need to try to go further in every area of my life, all the time, always rebuilding my self-confidence.

5. Get Visual Impairment certificate.
Gives you reduced prices for your carer and may be some government “Benefits”.

6. Always say YES.
It’s scary but the fastest way to re-develop myself.

7. Get a Tablet
Start with this technology NOW and learn to use it fast as it’s a life-saver, as it keeps you in touch with the world. Without being in touch with the world, quality of life can disappear down the drain.

8. Get and Help Another VIP
A problem shared is a problem halved.

9.  Build up an Exercise Regime
I do Tai Chi and indoor tennis. I run a productive allotment.

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