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.
Speaker David Crab of the Crab Lab is trying to accurately measure the extent of vision loss.
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.
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,.
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.
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.
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.
(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.
Disabled Go, common search terms do not work; and information on Worthing facilities are not shown. Action Gary
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.
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.
Ropetackle Traffic Lights arrangements need to be improved. Action: Nick, Dave and Martin
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
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.
Pedestrian Traffic Lights at Holmbush south across Old Shoreham Foad have no sound signal. Plus overgrown hawthorn hedge on the pavemeny here Action Dave.
Overgown Hedge on Mill Lane north of the bridge over A27 on the east side. Action Dave.
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.
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.
WSCC Beautiful Sussex Project, does the proposed crossing over the A283 for the South Downs Way include a refuge? Action:Dave.
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.
System for helping people get Disability bus pass, Action: Gary unable to find out who is responsible, now complete review is being arranged.
Cliff to illustrate Pavement Obstructions with photographs, also showing locations. Action: Gary to get a Chrome Cast for the TV screen, cost approx £50.
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:
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.
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.
New members to be invited specifically the Police
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?]
Refuges at road junctions along Upper Shoreham road 12, 17, 21 paces wide, and at Buckingham Road entrance and exit and Mill Lane.
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.
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”:
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.
