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

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.

 

Key notes about Gluten free restaurants 2018

A year later, and I can simplify my choices:-

 

National chains are great, eg. Wetherspoons, Zizzi`s, Carlucio`s, Cote Brasserie, Pizza Express, Pizza Hut, MacDonalds. For us this means a short bus ride to Brighton.

Locally in Shoreham-By-Sea we like Chambers, Toscas, Indian Cottage  Tandoori,; in   Worthing it`s Food, Thai Street Food, and Indigo.

Whilst there is greater availability, my stomach has decided wine is better than beer and no ice cream, for the moment.

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.

Trying to clear footpaths in Shoreham By Sea

AWDAWG Minutes June 2nd

(Including adapted Considerate Parking Flyer)

(AWDAWG, Adur and Worthing Disability and Access Working Group)

Welcome to:

Jenny Anderson who represents Matters for the Deaf

Dave Simmons, District Councillor and WSCounty Coumcillor

Matters Arising:

None of the matters arising from the last meeting had been dealt with or addressed during the two months since March. The Councils` representatives need proper support.

Fortunately Dave Simmons will take on many of these actions in order to improve the situation.

  1. Disabled Go, common search terms do not work; and information on Worthing facilities are not shown. Action Gary

  2. Height Barriers across entrances to car parks are too low at 2.1m and need a higher 2.2m facility for larger disabled vehicles to enter. Action Dave.

  3. Pavements obstructed by parked vehicles on driveways or front gardens. “Considerate Parking” pdf received from Teresa, to “Share” with us. Two hundred copies requested. No response. Cliff screen scraped the `shared` text and created his own Considerate Parking flyer (see below). Dave volunteered to speak to police / Safer Roads project to discuss, particularly based on photos, for official letters to be sent to the registered users. Cliff to hold off using his flyer for now. Action Dave.

  4. Ropetackle Traffic Lights arrangements need to be improved. Action: Nick, Dave and Martin

  5. England v EU: dragging down to their standards(?),

Sort out paths being clear as property users` responsibility versus maximum path width 1.2 m, as WSCC refused to take any action if the path was / is clear for 1.2m. As hedges have now grown more this forces pedestrians and all other pavement users into the road or to face other difficulties. Action Dave

  1. Kingston Lane path half-blocked for 50metres opposite Shoreham Academy, forcing school children into the road. Path blocked by owners gardens spilling onto the path reducing width from 2m to 0.8 metres. (room for one person at a time.) Proposed for safety barriers to be installed urgently as the pathway is blocked.

    Also note, almost opposite, the Shoreham Academy hedge on the west side of Kingston Lane reduces the path to less than 1.0m. Possibly divert pavement users to use their exit road instead but would also need safety barriers.

    Action Dave.

  2. Pedestrian Traffic Lights at Holmbush south across Old Shoreham Foad have no sound signal. Plus overgrown hawthorn hedge on the pavemeny here Action Dave.

  3. Overgown Hedge on Mill Lane north of the bridge over A27 on the east side. Action Dave.

  4. Zebra stripes across Tesco and Next,Action: Nick to find out whose jurisdiction, whether County or District Council. Action Nick to ‘personally visit Managing Agents at Holmbush Centre.

  1. Refuges at road junctions along Upper Shoreham road 12, 17, 21 paces wide, and at Buckingham Road entrance and exit and Mill Lane. Action: Nick to investigate.

  2. WSCC Beautiful Sussex Project, does the proposed crossing over the A283 for the South Downs Way include a refuge? Action:Dave.

  3. Access on Public footpath over Shoreham lock gates to Southwick beach, now that the official cycle route uses this footpath the path should be 3m wide rather than 1m. Action: Gary to work with Shoreham Port Authority.

  4. System for helping people get Disability bus pass, Action: Gary unable to find out who is responsible, now complete review is being arranged.

  5. Cliff to illustrate Pavement Obstructions with photographs, also showing locations. Action: Gary to get a Chrome Cast for the TV screen, cost approx £50.

  6. External Communications, Cliff`s visit established that BBC Sussex need press releases.

The Bus pass issue is out of our hands. No further action required.

Considerate Parking

As described by Sussex Police

Illegally parked vehicles cost hundreds of thousands a year in damage to paving and grass verges, and cause serious problems for other motorists, blind, disabled / older people and parents with small children and buggies.

What is being asked?

  • That you park with consideration (not just for the paths, but for the resident’s house you park outside and for other road users)

  • That you consider the safety of your child having to negotiate a badly parked car? (How would it make YOU feel?)

  • Do not obstruct junctions, paths and entrances and do not park on School Zigzag marked areas.

Why is bad parking a problem?

Pavements are provided and constructed for pedestrian use. Vehicles parked

on pavements / junctions and Zigzag school markings are:

  1. A hazard to pedestrians, causing an obstruction, which may result in them having to step off the pavement and onto the highway, thus putting them in danger.

  • A hazard by restricting the width of a pavement, making it difficult for someone with a pushchair or wheelchair to pass safely – again this person may have to go into the highway to avoid the obstruction

  • Badly parked vehicles can obstruct the flow of traffic along roads and can increase the risk of injury to pedestrians and other road users.

How is this dealt with?

  • By fixed penalty notice (£30 fine) for obstruction of a path or a junction may be issued by a Parking Enforcement Officer or uniformed member of staff from Sussex Police.

  • By civil action or fine for damage from the local council

  • By a vehicle being removed at the owners cost if causing an obstruction to the highways and through flow of traffic

  • By simple words of advice given to the driver by a uniformed officer.

Roads around this area are being monitored.

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

Shoreham Sound Tennis, SCLTC

I’m visually impaired and I play tennis at Sussex County Lawn Tennis Club in Kingston Land, Southwick (Shoreham.) We actually play Sound Tennis and welcome others to come and try it

Come and join us. We have a trained coach and volunteers to help.

We’re there most Tuesdays from half past two until half past four. I also play there whenever I like and am looking forward to the warmer evenings as well

Everyone is very friendly and its a lovely green oasis.

Soundball Tennis at Shoreham is special

Soundball Tennis at Shoreham is special.

The normal arrangements are that it is an indoor sport, whereas we can enjoy it as an outdoor sport with fresh air, none of the noise associated with sports halls (squeaking shoes, screams from Badminton players, rock music from the climbers on the indoor walls, etc.)

We have found and initially we prefer the slightly firmer BUZZBALLS which re made in England as their flight is truer than the normal Japanese balls. We have since progressed via red balls, orange sot andgreen spot balls to the normal yellows.

The company making them work with 23″ rackets so so do we. We have found that the Japanese balls do not survive heavy usage particularly with the longer 25″ and 27″ rackets. For yellow balls we now use 27″ rackets.

We use the ‘orange ball’ court because it’s appropriate for the shorter rackets. Nowadays we use a full size court.  Net height is set at 80cm.

For a video of the indoor version look at Metro, indoor Soundball

I set thus up because I wanted to be able to play at a court I could walk to from home and enjoy peace and quiet. By joining Sussex County Lawn Tennis Club as a member I could enjoy the club facilities at any time. Thank you.

Today we have two visually impaired players and three helpers. Most of us were starting tennis for the first time and nobody could see any of our mistakes.!

Two years on and our effective vision is much better and we are all fitter  and healthier.

Come and join us.

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