Tag: Shoreham AMD Support Group

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

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 – 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

Adur and Worthing Disability and Access working Group.Notes 2.

Topics: Next time:

  1. England v EU: dragging us down to their standards(?), the maximum width of a path, clear of  hedges, now seems to be 1.2m, “though vegetation may have to be cleared frequently.”                   This may be fine for “one powered wheelchair” but visually impaired people work from a wall not from the hedge and need the whole path width.
  2. New members to be invited specifically the Police 
  3. Entrance to LiDL has zebra stripes across the entrance, can we have the same across entrance to Co-op and Dunelm in Ham Road , Southlands Hospital in Upper Shoreham Road,  Tesco and Next car parks at Holmbush, and the new Shell garage on A259 [Community Service project?]
  4. Refuges at road junctions along Upper Shoreham road 12, 17, 21 paces wide,  and at Buckingham Road entrance and exit and Mill Lane.
  5. System for helping people get Disability bus pass,  Gary arranging for Ang… to contact me to sort out the problem. The disability bus pass is brilliant as it extends the day by a couple of hours.
  6. Access on Public footpath over Shoreham lock gates to Southwick beach, now that the official  cycle route uses this footpath. For the time being signs saying “Cyclists please let pedestrians go first”:
  7. WSCC Beautiful Sussex Project, does the proposed ed crossing over the A283 for the South Downs Way include a refuge? There is also a need for some help where the Downs Link Path crosses the A283 towards Bramber.

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.

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