Yoolaa

Macular Society National Conference

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.

If you think the Macular Society ar doing a good job please donate here.

AMD & Cliff’s Action Plan for AMD

11th January 2017
by cliff

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.

2016 on the allotment

7th October 2016
by cliff

We’ve had our allotment for more than ten years. During the last few years we have added two pear trees and a Victoria plum and a Greengage, our first tree had been a Damson.

Since then we also put in two apple trees and a Yellow Egg plum (for jam making.).

This means that with the raspberries and the strawberries we have reduced our vegetable area to about half of the plot Then you take out the runner bean and butter bean beds and the fuchsia bed not to mention the three flower beds and you’re left with a manageable chink.

Over the last couple of years we have renovated the raised beds with pressure treated boards and fixed posts at the corners so that any of them can have a covering fitted,

It was a poor, cold and wet start to the year and many things had to be re-sown. Hey ho! Harvested everything we wanted to and there was lots of fruit and we were particularly pleased with the Cupidon.

Currently (October 2016) we have leeks, celeriac, courgettes, beetroot, beans, tomatoes, parsley, potatoes, cauliflowers, broccoli and squashes planted.

LUTEIN – The Macular Society’s Comments

12th February 2016
by cliff

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

My “Please Help” Card, It’s wonderful

30th August 2015
by cliff

My “Please Help” Card says “Please help. I’m visually impaired.” and it’s wonderful.

I no longer have to say anything about my situation, I show the card and ask my query as if I was completely normal.

Absolutely Adult to Adult – “I’m OK, you’re OK.”

I must give you my example from yesterday. I had booked two tickets for the Barbar v Samoa Rugby Union match at the Olympic Stadium and unfortunately my carer couldn’t make it. Do I go or not?

I have used my Yellow Card on many occasions and knew it worked but this would be extraordinary. From Shoreham By Sea to the Olympic Stadium in Stratford, East London and return. Let’s see when I used it:

1. At Shoreham Station when buying my Travelcard,, just as an alert that I may appear slower than I am.

2. At Brighton Station when asking a station official time of the next train to London Bridge (as there are huge destination boards showing just that information.

BUY ONE NOW, click here.

3. At Bank Station to ask a DLR (Docklands Light Railway) official for a train to Stratford.”Next one, change at Canary Wharf”.

4. At Canary Wharf, a DLR railway cleaner for the next train to Stratford.

5. At Stratford, well you can see the Olympic Stadium but how to get there, I asked two PCSOs standing together, through the tunnel over there, right to the end and then into the Westfield Centre and take the escalators to the second floor”. (I wanted an Italian restaurant for some lunch. )

6. At the end of the tunnel I couldn’t make out thee arcade with the escalators, (actually I couldn’t see an arcade at all) so I asked another PCSO and he looked and then said “I could use a walk, I take you over there myself. ” straight to the escalators.

7. Up two flights of escalators and nothing but clothes shops, but no Italian Restaurant. I selected a shop selling expensive watches and asked and a delightful young man gave me a smile to warm your heart and said “Up there to the left is “Strada”.

Success. half way, time to relax a bit.

BUY ONE NOW, click here.

8. I showed the waitress my yellow card as I can’t read a menu.I had chosen an Italian restart as they always have Gluten Free pasta. But No. Not Strada. We settled on salad with cold poached salmon. Just right.

9. Out of Westfield was straight forward as all the stewards were directing people to the Olympic Park so my next use was with the first Olympic Stadium steward who then read my ticket and directed me to the Block I needed. It’s wonderful indeed.

10. Up the stairs into the Stadium and I realised my ticket was not up in the Gods but higher still. Pulled out my card to ask if there might be any empty seats and he immediately put me in row 30 rather than row 56!

Well the match was a trifle difficult as my “Blodge” more than covered the whole of the area of the rugby posts and if I turned my head to look at the screen the same problem occurred. I learned that I would be OK if next time if I sat in the expensive seats in the middle and also if I set up my smartphone to listen to the radio commentary.

AND so the return trip. I made a fundamental error I did not precisely retrace my steps from the stadium to the station.

11 and 12 got me over the bridge into the station.

13. Another PCSO got me on the Jubilee Line direct to London Bridge.

14. The last time I was in this part of London was before they built the Jubilee Line! I turned to a delightful passenger showing my card and said that I didn’t know the Jubilee Line and couldn’t read the Tube Maps. She explained that he train actually went direct to London Bridge. Her father also has AMD and I think she said that he runs ten K every day! Notwithstanding that I gave her my card so that I could introduce him to Soundball Tennis.

15. At London Bridge Station I went to the barrier staff to find out the platform no, of the next train to Brighton. What a fantastic trip.

This may not necessarily be what Brighton and Hove Buses had in mind when they decided to produce the Yellow Cards, but I wouldn’t have done it without the confidence their cards give.

So multiple thanks for the freedom the Yellow Card has brought me.

Thanks also to so many friendly and helpful people. What a lovely world we are fortunate enough to live in. AND they were all smiling.

BUY ONE NOW, click here.

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September 2015

It’s so good my card wore out, so I’m having some made. I can give them away, give them to people who need them….. I might also sell some!

BUY ONE NOW, click here.

Oil and Water. Sighted and unsighted meeting

29th August 2015
by cliff

OIL and WATER? Sighted and the Unsighted

Are we troglodytes?

I think there is a natural collision which makes it difficult for non-sighted people to join and work with sighted people.

The differences that need to be circumvented:

travelling to a venue i.e. public transport plus walking or car
Getting to a regional meeting locally when the bulk of the public transport links to a hub, like a star formation whereas by car anyone can go across in any direction
counting out change
recognising a face more than five feet away
seeing a smile or a scowl, seeing a laugh
reading the minutes, accounts, letters etc in a meeting
making notes and diary entries
finding the toilets
pouring a glass of water, white wine or a gin and tonic or even milk into a white cup
completing a form
reading my debit / credit card details to key them in or to dictate them
reading non-verbal signs and body language
reading a noticeboard, a label, numberplate, bus tine-table

An endless list, all minor even un-noticeable and normally inconsequential..

Any one of these is taken for granted by the sighted and leaves the unsighted totally at a loss.

AND, my proposition, is that every instance gradually adds to the frustration until the pressure is too much or exhaustion takes over.

Either Explosion or Exhaustion.

……………………

September 2015

What a superb weekend, organised by the Macular Society. There were probably sixty ‘unmsighted’ people there.

Y you can relax in each others company because you largely have the same experiences and togther you can laugh about them. Also suddenly the ‘unsighted’ out-numbered the ‘sighted’.

Oh! The luxury of finding others who can read, but only three paragraphs. Then it’s trashed.

I hate the people who cannot write concisely, who pad everything out so it seems more important and the ones who write long inconsequential introductions.

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