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.

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

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.

Full review – Gluten Free in Shoreham By Sea, Brighton and Worthing, Sussex,

Full review – Gluten Free in Shoreham By Sea, Brighton, Worthing and Hove, Sussex,

My grandson (‘FG’,6 years old.) has now been diagnosed as a Coeliac, September 2016, so the primary emphasis has moved to include children’s needs, so the whole family is included.

I’m suggesting a virtual journey around our area, visiting restaurants in Italy, France, America, Mexico, Greece, India, Turkey, Bangladesh, Peru,  England, Thailand, Brazil, Spain, Portugal, Japan. Join us and join in the fun.

 

Ice Cream:

Italy, (ice cream was invented by the Romans.) Pizza Hut’s soft ice cream machine is GF. Serve yourself. 15th OCTOBER 2016. Beautiful Italian Ice Cream. FG’s verdict “Ten Yums”

Tom Foolery café, Shoreham High Street – good choice of coffees and some GF cake or pastry plus Marshfield Farm ice cream. Lack of knowledge so only choose Chocolate chip Mint flavour.20th Novemberr 2016. Location.

Macaris sea front Worthing…everything except cookies and cream are Gluten Free. 17th October 2016. Location.

Worthing Lido shop – GF Ice Cream in a tub. Marshfield September 2016. Location.

Worthing, Food Retaurant is very good. Location.

Tosca’s restaurant in Shoreham By Sea – ice cream with or without Chocolate Brownie, a sprig of mint and a chocolate finger! 25th September 2016. Location.

Theatre Royal Brighton provide Beechdean GF Ice Creams.

Brighton Beach Ice cream;   through the tunnel at the end of West Street and first on the right. Huge selection. FG’s verdict on banana and chocolate, three YUMs. August 2016.

Beechdean Ice Creams are all Gluten Free, 25th October 2016

Marshfield Farm ice cream in tubs is all gluten free; four of the scoop tub ones are not,  namely Raspberry Pavlova; Chocolate Fudge Brownie; Gingerbread in Clotted Cream; Cookies and Cream”

 

Cafés/ fast food

 MacDonalds, Shoreham, Holmbush and Worthing – [America. Peru, West Africa.]  Beef bruger or chicken and fries or hash browns with any of the sauces or dips, except sweet and sour plus  Salad. Couple of choices for dessert.  FRIES. FG’s verdict “Four YUMS” Location. Good coffee. 26th November 2016.

KOOKs Gardner Street, Brighton. Just when I needed a Chocolate Brownie and a glass of wine, they delivered. Good range of snacks. 10th October 2016, Location,

Ropetackle Café, Shoreham, GF jacket potatoes, toasted GF sandwiches, cake and coffee. 5th October 2016, . . Location.

Panissa Coffee Shop,  |Southwick Square Café – Excellent Carrot Cake and  cup of tea. 4th October 2016.  Location.

Carats Cafe, Southwick, All-day Breakfast, your selection; eg bacon, eggs, mushrooms, tomatoes, baked beans, and SAUTE potatoes heated in an oven. Also Pipers Crisps (Yellow and blue packets are GF). August 2016. Location.

Brighton Beach Paddling Pool café, under the Arches; GF fruit bar and very good coffee;

Gardner Street Brighton (Komedia) café – toasted sandwich, cake, wine, October 2016. Also two cafés (Manor and the Larder)next door to each other owned by the same people so what one doesn’t have next door does, whether its wine or cake. (This time not so good, had to go to Kooks , two doors along. October 2016).

Dome Vintage Tea Room, Worthing, Toasted ham and cheese sandwich with crisps and salad…. and a glass of wine. Today choose your ingredients GF all day breakfast. Excellent. Location. 17 October 2106.

The Artisan café, Shoreham, chocolate brownie or taosted sandwiches, all-day breakfast, extensive cold salad choices. 17th October 2016. (with a glass of wine.)

The Plaice in the Square, Southwick, GF Fish and Chips, MTW only. They like twenty minutes warning to prepare the batter. Location and phone no.

 

Pubs / Bars

I shall shortly be checking out Wetherspoons as they are back onmy horizon. Their CF menu looks good and then there’s the apple crumble, bring it on. 8th January 2017.

GF Beer: The Cow Shed, Worthing sea front opp. the Pier, has GF Beer. 17th October 2016. Location.

GF Beer: The Evening Star, just down from Brighton Station serves gluten free lager/ beer, OK OK so it’s bottled but at least they have it and you can enjoy it. September 2015.Location.

GF Beer: The Duke of Wellington, Shoreham, serves gluten free lager/ beer, OK OK so it’s bottled but at least they have it and you can enjoy it.  Plus GF ‘Real’ crisps. October 2016. Location.

The Bridge Hotel, Shoreham By Sea – Fish Pie with seasonal vegetables at the Bridge.   Excellent pie and the Bridge has a garden overlooking the River Adur. Lovely staff, limited GF menu. Location.

The Rising Sun, Upper Beeding. It always seems high risk, but the chef checks with you personally and we always work out something that’s good and well priced. Location. , where the Henfield Road comes into Upper Beeding. It’s better for GF than the Kings Head. June 2016.

Wetherspoons (Brighton Marina, George St., Hove and Worthing) – used to be very good because they had CHIPS which these days are gone. They may do a GF Curry but I need to confirm this.

Harvester has given me a mixed view. Near Marlow and the M40 junction they were excellent after a momentary panic. In Brighton it was not a happy experience though the food was indeed GF. Similarly with the Worthing one. So no clear recommendation.

All the Wadsworth’s pubs and restaurants in the South West upto Hampshire and Gloucestershire.

 

Restaurants

Chambers Restaurant, High Street Shoreham, very smart, and the chef knows what he’s doing. Great food, an excellent lunch menu and good wine. Now with a gluten- free menu. January 2017. Location.

Liming, Mexican restaurant in Worthing, extensive GF choice including kids. 7th Jan 20`7. FG awarded Ten YUMs plus a plus five YUMs for the nachos. Ice cream was excellent particularly with the caramel sauce. Location.

India / Bangladesh. The Indian Cottage, High Street, Shoreham, they use gram flour – avoid the nan bread and chappatis, and you can ask for a small portion and also with no or low sugar. Pappadums are made with urlich flour and rice flour. LJ’s verdict “Ten YUMs” 26th October 2016. Location.

Thailand, Thai Street Food, Bath Place, Worthing. The team, particularly the chef knows her business. The soy problem and the noodles. Yellow mild curry was delicious. 24th October 2016. Location. ]A second visit later, was even more popular with everyone. FG Three YUMS, LJ Four YUMS.]

Italy. Tosca’s in Shoreham By Sea – GF garlic bread, Beef Stroganoff (GF version) a great family lunch. Normally GF penne supplied with a wide range of GF sauces. Also very good GF pizzas. with GF pepperoni.Smart restaurant. 14th October 2016. Location.

Italy. Pizza at Pizza Hut, near Churchill Square;, always have extra tomatoes – great for children…and there’s Italian Ice Cream. May 2016. .Location. FG’s verdict – “Pizza 3 Yums, Pizza with tomato, cheese, ham and chicken.Ice cream with chocolate sauce “10 Yums.” (by the way colours of tomato, Mozarello cheese and Basil are the colours of their national flag!)

Bankers Express, Hov – GF Fish and chips, with mushy peas, on Mondays and Tuesdays.  Beautiful piece of cod. FRIES. August 2016. Location.

France. Steak Frites at Cote , Brighton – FRIES. “Straight from France”. C’est magnifique.” Also chicken and fries. Plus apple sorbet with Calvados. August 2015. Location.  Link to main web site to find and book a table anywhere.  I’ve visited one in Birmingham and also the one near Victoria station – just brilliant.

Italy. Carluccio’s, Brighton; – always good and good wine, I usually have GF Pasta or the Goat’s Cheese salad… and there’s a Tesco round the corner to get some chocolate. July 2016. . . Location.

Fish Factory; Worthing, no chips. The food is beautiful. July 2016. Location.

“Food” Worthing, including real burger and real chips. very good  and the ice cream is good too, 5th December 2016. Location.

February 2016. Royal George carvery, Shoreham – every thing except the gravy and cauliflower cheese. Very popular prices, excellent if you’re really hungry! Location,

2015. We also had a superb family meal at the Arun View in Littlehampton, overlooking the River Adur…. with a west facing terrace and a superb meal. Location.

The Toll Gate, Bramber – carvery and cold table, excellent food, and a huge choice of desserts,  (Best of all) knowledgeable staff, Location.

Italy. Zizzi’s, Brighton, location.  Zizzi’s are good whatever town you visit. So looking for a restaurant in a  new place then it’s easier. Link to main site for finding and booking a table anywhere.

Zizzi’s, Cote, Carluchio’s and Cafe Rouge are all great choices. Plus Pizza Hut, Pizza Express and Domino’s are all great.

Crab Shack, Worthing, I’ll keep it simple. I won’t go there again. 30th November 2016

 

AND the new ones

Spain, Aguadulce Brighton.Various GF dishes.

Brazil, Touro, Brighton

Poland, Lavenda, Worthing.

Bangladesh. Mahan Worthing, almost everything OK even the pappadoms, though not the chapatis and naan bread. !7th October 2016.

Greece. Fat Greek Taverna, Worthing.  Proper Greek food should be great.

Fish Factory in Littlehampton.

India. Chaula’s Indian Restaurant Little East Street Brighton. Dosa possibly.

AND if you’re starving:-

Jacket or boiled potatoes with omelette and salad and then you start creating something they can do, but no grated cheese. Remember all ingredients have to be shown on every package even for caterers.

Bounty bars; YorkieBars,

Tesco’s (Holmbush) gluten free section is 36ft long and seven shelves high, lots of choice. Plus Tesco’s own label chocolate 85%. Plus bag of mixed nuts in ‘greengrocery section’ and sultanas in ‘home baking.;

Selected Dates, Quinoa and molasses I get from Infinity Foods.

 

BEWARE:

BAD NEWS: wheat, barley, rye, oars, spelt, semolina, couscous, malt, noodles, (rice noodles are v good) North African cuisine (Couscous)

Mayonnaise. Coleslaw. Mint sauce. Soy sauce. Check them each time.

These are my opinions because company policy can change, chefs can change, ingredients can change  and then there’s the kitchen staff  and their utensils. So you’ll be pleased to know that I am extremely sensitive to gluten and that I’d come with you t any of these.

Bon appetite.

Cliff

LUTEIN – The Macular Society’s Comments

These are exciting times for research.  Promising new drugs are in development, important genetic discoveries are being made and we’ve seen the first safety trials of stem cells in the human eye.

 

A large study, the Age-Related Eye Disease Study 2 (AREDS 2) suggests that a high intake of lutein can reduce the risk of developing advanced AMD. The Aston researchers concluded: “For an informed population, many AMD participants were under-consuming nutrients considered to be useful for their condition.  Participants without AMD were more likely to reach recommended daily allowance values”.

[ Publsher’s Comment ; The AREDs 1 study is in fact more important.]

 

Lutein and zeaxanthin, key constituents of macular pigment, have been found in high levels in the retinal rods.  This suggests that macular pigment could play a significant role in keeping the retinal rods healthy and maintaining how well our eyes are able to adapt to the dark

 

Consider a nutritional supplement if you cannot be sure of getting high levels of antioxidants in your diet.  There is some evidence that a specific formula of antioxidants and zinc tested in the second Age-Related Eye Disease trial  (AREDS 2) can slow down the progression of AMD in some groups of people.  No supplement has been shown to cure AMD.  You should always talk to your ophthalmologist or optometrist before taking supplements, as they can interact with prescriptive medications.

 

The Macular Society has information on all aspects of living with macular conditions.  We also have local support groups and a training programme to help people learn to use their peripheral vision more effectively (called “skills for seeing”).  We have a professional, confidential telephone counselling service, a befriending service and a team of “buddies” who can provide reassurance on injections and visual hallucinations caused by Charles Bonnet Syndrome

 

Umpire for an hour or two once a month, trial basis, coaching provided

Shoreham Soundball Tennis

Umpire and two player volunteers needed
Coaching and racket provided.
an hour or two, once a month
On a Monday evening
We want to get better and to win some matches and tournaments.

We have difficulty seeing the ball, the racket and the net let alone seeing the lines so we need feedback, we need to know if the shot was in or out.

We provide our special balls and 23” rackets, using an orange-ball court.

Please call Cliff Jenkins on 07582 902 922, email cliffofyoolaa.co.uk@gmail.com or
Come and see for yourself
from 5.30on any Monday in September
at Sussex County Lawn Tennis Club, south end of Kingston Lane, Southwick, Shoreham  by Sea

Shoreham Soundball Tennis

Join us at
Shoreham Soundball Tennis

Tennis for Visually Impaired people

Visually Impaired (VI) people of all ages, abilities and circumstances are made very welcome. We provide the opportunity to to learn and to play Soundball Tennis. We provide both the equipment and the training.

So we’re looking for VI people plus sighted volunteer players and umpires, coaching is provided for everyone as are Rackets and balls.

Come and See for yourself on Mondays at 5.30 – 7.30. ts, FREE taster session then £10 per session or £20 per month or £190 per year. FREE facilities for volunteers

 

Great Fun with Improved fitness, agility, effective vision, weight-loss, friendship, new experiences, and fresh air.
Contact: Cliff Jenkins 07582 902 922

A Not-for-profit group run
in conjunction with Sussex County Lawn Tennis Club
Kingston Lane, Southwick, West Sussex, BN42 4DJ

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