AMD, Macular Degeneration Archives - Page 3 of 4

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.

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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.

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.

………………………………………………….

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.

Open letter to Macular Society re Lutein v AMD

An Open Letter to the Macular Society about Lutein v AMD

Looking at my local Macular support group only two out of twelve members had heard of Lutein and both used it successfully. The others, ten people had never heard of it.

Whilst the Macular Society on their web site support the benefits of Lutein, their quote is buried deep in the turgid detail of a report by scientists. I quote:

“Research supports the theory that high macular pigment levels may reduce your risk of AMD or its progression.Macular pigment can be increased by taking supplements with lutein or zeaxanthin or by changing your diet to include more of them.” Macular Society website.

What they don’t say is that 50% of users found that their eyes stopped deteriorating. They do not state that there is no scientific or statistical support for these same benefits being achieved by changing your diet on its own.

It is my contention that our Macular Society is letting our members down and allowing thousands of members to suffer continuing degradation of their sight unnecessarily.

If I was a cynical person I might think that this situation has occurred because of the financial support given to the Macular Society by the suppliers of assistive technologies. They have a strategic need to find more people with deteriorating eyesight. [They sponsor our annual conference and advertise in our magazine.] But may be that’s unfair.

THIS NEEDS TO CHANGE.

I Propose a new policy for the Macular Society:

Draft 2 for Lutein Policy for the Macular Society to consider.

(28^th september 2014)

“The Facts about Lutein

It is a fact that our eyes have Lutein in the macula.

The AREDS (Age related Eye Disease Study) found that people suffering from AMD got relief from further deterioration by taking supplementary Lutein (with Zeaxanthin) in doses ranging from 10 to 30 mg per day. There were no no side-effects observed.

There is also empirical evidence and some early studies showing that Cataracts cease growing when using the Lutein supplement.

There is increasing professional support of the results of using these supplements and some eye professionals are starting to prescribe them.

The Macular Society is pleased to see these developments and will conduct its own study of our members to try to confirm, or otherwise, the effects of the use of these supplements. In the meantime it is upto each person to find out as much as they can and take their own decision. We will conduct our own study and then we hope to endorse its use fully.

The Macular Society

Dated:…….

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
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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

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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.

AMD- Three years on AND NOW THERE’S MORE

13th November 2013. Life is all about finding ways to do what you wnat to do. I have been unable to read a story to my grandsochildren. TODAY I actually read a story to my grandd-daughter Lana.

The solution I found from a laeflet published jointly by the National Blind Chrilddren’s society and the RNIB. This pointed me t the libraruy service who have 434 Large Print story books. OK they’re created for children but they solved my problem, WONDERFUL. AND the way to get at them:
Here is the procedure for searching for large print books on the library catalogue.
Go the the west sussex county council (or your local one ) website
* Press ‘L’ on the alphabet
* Click on ‘Library catalogue’
* Go to advanced search
* In box 1 click on class from the drop down menu
* In box 1 on the right hand side write in STO
* Don’t tick the ‘junior box’
* Box 2 should be left on ‘All branches’
* Go to box 2 and scroll down to ‘Large Print Paperback’ or ‘Large Print Hardback’
* Press search JustGiving for the Macular Society.
* Click on STO
* There will then be a list of all the books
* Click on ‘Reserve now’ or ‘Add to basket’ if you want more than one.
* Enter your pin number and library card number
*
EASY really!!

Bring it on
AMD Three Years On, and now for the next thirty years,

Well, these three years have been a real roller-coaster. With many ups and downs and many sharp corners, always changing almost always getting better.

There IS a day One – the day I realised that I really have a loss of sight, in my case due to AMD Age-related Degeneration, and that it’s probably going to be forever. That was a bad day.

What happened next was critical. I was lucky because I was furious that I’d been hit so young. I wasn’t supposed to go old this soon or so suddenly! My fury was almost palpable, as Angie and Jon at the Macular Society and my family and friends will all confirm. My anger was so strong that I decided that I couldn’t use my white stick!

For me the result was, and still is, a mix of bad days and good days. Good days are when I work on what I can do (as opposed to what I can’t do, they’re bad days) and then striving to push the boundaries of what I can do.

My basic attack is supplements – Lutein may halt further deterioration and there’s a whisper that it may do better eighty mg per day plus Vitamin B12 (since Sept 2012) twenty / thirty mg per day. B12 apparently is good for cell regeneration.) The firm belief that this really will help underlies my confidence and my determination to ‘push the boundaries’ – attacking on all fronts.

Initially for me ‘pushing the boundaries’ included:

– choosing one eye and training it to look round the ‘splodge’ and also to look further and further away up the road

– getting out and walking miles, preferably in green surroundings, pounding out my anger whilst resting my eyes,

– training my brain to memorise what I’ve just looked at so that as I move my view (slowly) it automatically fills in the missing patch

-training my brain to sweep from side-to-side to spot obstacles, whether dogs, leads, children, bikes or cyclists, or even cars and buses

– training my brain to accept that the first look at a word is wrong and to wait for me to start the word again (there’s a world of difference between public concern and pubic concern, but quite fun!)

– getting the right seats at the cinema and theatre, see note1

– developing a rapport with my carer to define and agree what help I do like … and no more

– training myself to use my Nexus 7 so that I can read Google News and the Daily Telegraph; read my favourite books purchased from Google Play and Kindle Books; review my picture gallery; read PDFs arriving by email; listen to music from Amazon, Google, Spotify and my own tracks brought together over the years; to use Notepad for making notes of to-dos etc.; use it as a mobile phone; use my dictionary; PLUS my diary / calendar; see note 2 one device to handle so many needs, smart, modern, low cost and portable. AND I can even dictate my emails!

As I achieve some progress, no matter how small a change, my confidence gradually improves (not evenly I still have bad days, but the ratio of good and bad improves) so I can then push new boundaries:

– breaking out of my hermit existence (OH! Yes it happens to all of us, it’snatural; while I examined myself to assess the damage and then to start – learning how to cope and to start healing myself, besides which everything immediately seems either too difficult or too risky to do)

– unassisted independent travel (I’ve visited London, Paris, Dijon, Lymington, York, Birmingham, Bettws-y-Coed and Snowdonia, even doing some climbing) I’ve also been up the Shard

– making new friends, I’m using my volunteer role with the Macular Society to help me, first with their Speakers training course and then getting speaking appointments and actually speaking

– similarly I need to try to create ‘eye contact’ so that people will trust me better whether to believe my message or to possibly even sponsor me

– if I can make ‘eye contact’ I’m confident my brain will create a new face recognition system so I no longer ‘ignore’ friends and acquaintances, but I don’t know how close I will need to be as I’ll be using just one eye

– I’ve also adopted a local pub as ‘my club’ as they have good food and a beautiful garden overlooking the river plus a manageress and staff who are delightful; … so I can meet people there, and it’s got excellent WiFi

– I’ve even got the local council coming round to find out how we can get me back into some sort of work

– my next project is to create a Sponsorship event, not climbing Kilimanjaro, rather something simpler that I can achieve on my own, for more details please see http://www.justgiving.com/CliffJenkins.

I think my vision is improving albeit slowly but last year’s OCT scan didn’t show any change. Nowadays I think I am starting to see with both eyes simultaneously again and with only a small ‘splodge’ in the way. Is this my brain working hard or is it my eyes improving or is it both? I can’t tell yet.

In the meantime I’m waiting in eager anticipation for for replacement stem cells as hopefully they will recover my sight loss. thank you…

Now for the next thirty years, bring it on!

Cliff
Cliff Jenkins

A bit about me: Aged 71; Dry AMD both eyes; wet AMD left eye with a small void in right eye.

Note 1.If registered ‘Visually impaired’ then you can confidently get a ticket for your carer free of charge. There’s also a hefty reduction on the railways

Note 2. With the Nexus 7 2 I’ll have a forward-looking camera; a lighter unit; better power; better screen resolution for sharp characters; and faster processing;

………………………………

If this article has been of help or benefit 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.

Age Related Macular Degeneration

28th August 2013
by cliff

Updated 28th August 2013 Still battling on. Suffered a couple of setbacks as the doctos gave me some rablets for High Blood Pressure and they may have been too successful as my eyes suffered. Nine months on my eyes may be recovering. Still I thought you might like this link to hear what an eyecare professional comment on the Macular society.

I also need to tell you taht I’m now taking 80mg Lutein each day and whether it’s actually working or whether it’s told my brain that this is a serious problem and needs to be dealt with i don’t know but it’s not as bad as when I initially had the HBP pills damage.

By the way my left eye developed Wet AMD.

Updated 02022011 Lutein. I read somewhere about positive effects of Lutein. The test cases used 20-39mg per day and got positive results. I’m fairly well built and I need to get a result so I’m taking 40mg per day. I need to clear my eyes fo the gunk if I can. It seems to be working as I’m back to reading the paper, in the right light of course and it’s easier to use the computer and the Kindle. I’m scheduled for another eye test in early July. I’ll report how we get on.

Posted 11012011 Age-related Macular Degeneration.

I found I was suffering from dry AMD about four months ago. I also have a slight void in the macular muscle which is distorting my vision.

My optician, well his lady assistant actually, picked it up and arranged a fast appointment with my optician / ophthalmologist, because he has an OCT (Optical coherence tomography) machine. Yes, there was the build-up of dry AMD. He arranged an appointment with the local eye hospital but the specialists there couldn’t see any build-up and sent me forth saying there was nothing there “I can’t see anything wrong.”

I assume that’s why they also have an OCT machine, because it can ‘see’ better than the human eye. However their machine is fairly old and can only take a photograph of three slices across the eye whereas my optician’s is the latest and takes 127 photographs – forty times more detailed.

Suffice to say I got a new appointment at a different eye hospital, with the same result even though their machine was slightly newer, but it only takes a photograph of seven slices across the eye, so my optician’s is still nearly twenty times more detailed.

I’ve told my optician that ‘in the land of the blind, the one-eyed is king’ and he’s the king, also that he has already seen more in his patients eyes than the ‘experts’ have done.

As far as treatment is concerned there’ is no treatment yet for Dry AMD, though possibly lutein may help. I’m taking 30mg per day in the hope that it’ll do some good. Also I’m hoping stem cell treatment may be possible at some stage.

Meantime I’ve turned down the brightness of my computer screen; bought a Kindle; rebalanced how much time I allocate to the various tasks I ask my eyes to do and I’ve bought a Blu-ray player.

But it’s not looking good.

No driving at night; no clear view of a person’s face; no recognising people across a room (except by listening); no newspapers; no lip-reading;

As I said, it’s not looking good.

Cliff

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