This is one of the headlines of an interesting seven page article in Get Well magazine.
Thank you Maggie for sending me this. So encouraging!
An AMD diagnosis is not a passport to blindness, but rather a wake up call to clean up your diet.
This is one of the headlines of an interesting seven page article in Get Well magazine.
Thank you Maggie for sending me this. So encouraging!
I can see that The Macular Society, the RNIB and the NHS are doing wonderful work here in uk on macular degeneration, as are the many researchers and pharmaceutical compamies.
I can see that hospitals are humbling places and I have the greatest respect for the consultants and nurses who deal with distressing emergencies and frightened people with such kindness and respect. I was present when a woman arrived who had woken up that morning completely blind in one eye.
I see that am lucky to be able to do so much research online, listening to experts in stem cell therapy, statisticians who look at world statistics and diet and to conferences around the world - it's fantastic that all this is available to me in a quiet Scottish village. There are also charlatans who prey on desperate people of course, and I have had to learn how to find trustworthy sources of information. It is fascinating.
I can see very well most of the time.
I hope you can see what a support you are to me!
Thank you so much.
Thank you so much for your warm responses to my good news about my eyes!
I'm making no claims for my regime of daily Macushield (a natural supplement), fresh juices every day, healthy diet and moderate exercise, but I am certainly keeping it up.
I simply could not just sit and wait to go blind, and determined that if I am going to be blind (and that is the assumption) at least I will be healthy and slim and fit and energetic and blind. I reckon my best chance is to create a healthy body to support my eyes and that maybe, given optimum conditions, my eyes might re-generate or at least not de-generate further and who knows, a cure may be just around the corner....
Maybe I'm just one of the lucky ones.
A little more tomorrow.
My vision varies.
It's hard to know why - there are so many variables. Light levels make a difference and I need a good light to read by. When I go from a light place into a darker place my eyes can be very slow to adjust. Screens can be difficult, and pale or coloured print. Oh, and I have cataracts. Thankfully most of the time I can see very well. (You can't drive when you can only see well some of the time, sadly, and I do miss my car a lot.) But yesterday I watched Wimbledon on my laptop. I could see the ball! So exciting!
I take a supplement called Macushield, drink freshly made juices every day - mainly carrot, apple and spinach adding cucumber, ginger, broccoli, kale, celery and other things for variety. I also check my vision on an Amsler Grid. Sometimes straight lines can look wavy and this can be, but is not always, a sign that dry AMD is changing to wet AMD which requires quite urgent treatment (and is pretty scary).
I do quite a bit of research online.
But I don't think about it all the time and no longer make notes every morning - only when I notice a change. I can't monitor everything in my life when I am busy living it, and looking at and rejoicing in sights like this -
Thank you for reading.
As I have recorded before, having been told there was no treatment and no cure for dry AMD but that eating brightly coloured fruits and vegetables might help, I decided to get as much brightly coloured fruits and vegetables into me as I could. To this end I went on a health retreat where I had freshly made juices three times a day and a vegetable soup once a day. After five days of this (which was really enjoyable and I was never hungry!) my pattern changed to this -
As you might imagine I could see more. Still patchy, but more.
I bought a juicer and made fresh juices every day.
After a time I realised that I was crossing the road more confidently, and noticed that I could make out what coins were in my purse, and was very surprised to find myself reading the tiny print on a tube of cream. I was even more surprised when I realised I did not have my glasses on.
This was the shape of my 'blind spot' the area on my macula which blocked my central vision. (See the video in Saturday's post.) Perhaps because I am an artist I could see it so clearly that I could draw it. It was especially clear when I opened my eyes first thing in the morning - it was as if it was projected onto whatever I looked at and If I looked at the white wall of the bedroom I could see it this clearly, and also see that it changed sometimes. I began to record what I could see.
I developed my own sort of code...
which makes perfect sense - but only to me!
I plan to stay on this topic for a few posts. Writing them helps me think clearly and if what I have learned gives even one person out there some help (the blog had over 10,000 page views for the first time last week) I will be delighted.
..all ye who enter here!
I do appreciate your thoughtful responses to yesterday's post
I do not object to being sent the video - I signed up for emails from the Macular Society. I expect to be upset - it's a most upsetting condition. What I object to is the total negativity of the message, the hopelessness and helplessness it seems to me to convey.
I need just a glimmer of hope! Any faint glimmer would do...like a mention of the existing treatments for wer AMD, or the research projects, or the encouraging results of stem cell therapy, or the good results from nutritional supplements and diet - I could go on, and to be fair these do all feature on the Society's website but I wonder if this 'stark' and 'scary' film makes many people go to the website. (You can find it here.)
At the end of the video, where it says 'How to protect your sight today' I would like to see a link direct to information on how to do that. Did watching the film make any of you look up the website and send for the information pack about protecting your sight? I have sent for it to see what they send out. I am very pleased to see the site now has a nutrition and diet page to download. They say 'there is currently no cure' for the condition - but there are treatments which are thought to slow down the deterioration.
I can understand that the Society does not want to create false hope, but neither should they create false hopelessness.
I remain hopeful.
EXTRA EXTRA How's this for a message of hope and positivity?
Thank you so much for all the energy reviving suggestions! I was tired after the gardening marathon (I won't ever let it get as neglected again) and I am melting in this heatwave, but on reflection I have realised that it was this video that brought me low.
I got it in an email from the Macular Society who ask that you share it with family and friends.
I wonder what your impression of it is? Did it make you want to know more about how to 'protect your sight today'?
This week is Macular Week. Some of you know that I have this eye condition. Ten years on from the optician first mentioning it, my eyes are not nearly as bad as those of the woman in this film. I am luckier than some. Most of the time I can see very well.
I've written several posts about it (under Simply Seeing..Or Not on the sidebar).
..the new season (though it was snowing as I wrote this yesterday) with a new pillowcase for the bedroom from the lovely Bluebell Gray range. See also this post.
Today I had my first outside cuppa this year - cold air but the sun was HOT on my face.
Breaking News! I was very excited to hear this news tonight.
You are a great bunch!
My determination was flagging last night and this morning. I was feeling good, had lost as much weight as I wanted (and more than I expected) and was thinking maybe 6 days is too much to do on my own, maybe I could stop now
but reading Swissrose's comment I began to look at some videos and the pep talk from Dr Jason Fung and the LCHF video by Dr Andreas Eenfeldt - I love the ethics of his approach described in the last 10 minutes of so - gave me just the boost I needed. I reminded myself that part of the plan was to take the time to do some research, lit the fire, made a juice and sat down to listen and learn.
Tomorrow I visit the opthalmologist. My eyes are the real reason I am doing all this. (See under Simply Seeing - Or Not.) I'm looking for macular regeneration not degeneration..
I think it helps.
And I am fitter!
Lingering snow on the tops. Here below - mud, but 6349 steps.
For me the incentive to get healthier began with my eyes.
I am an artist and when the optician told me I had macular degeneration and gave me a leaflet saying it was the leading cause of blindness all I could think was 'No. Not my eyes. Please not my eyes.' I waited for her to tell me what would be done but she was very quiet (and wouldn't look me in the eye. It must be hard to tell someone this I guess). So I asked what could be done and she said there was no cure and no treatment but I could try eating more colourful vegetables and take a supplement called Macushield that was thought to maybe slow down the process. And, she added, if there was a sudden change in my sight to get myself to the hospital straight away.
Mercifully the degeneration has been quite slow, but to cut a long story short, I recently thought if eating more vegetables is the only thing on offer how can I get the maximum amount of vegetables into my body? I browsed the web and chanced on this health retreat! I thought about it a lot (I'd never been on any kind of retreat and thought I couldn't afford it), but after some months and at a rather low ebb I gulped at the price, and went ahead and booked it in January this year.
I think it may be the best money I have ever spent.
I made the decision that if I was going to be blind I was going to be slim and healthy and energetic and blind!
I wish I'd known when I was first diagnosed with macular degeneration that -
Blind does not mean total blackness with this condition.
AMD often develops very slowly. (Something else might get you first!)
Not everyone who has dry AMD goes on to develop advanced AMD or wet AMD. It is possible that some people may be living with early AMD over decades without serious effect. We can't know because as the opthalmologist pointed out, these would be the ones who don't attend clinics...
Some of the best minds are working on a cure as I write. Just in the few years since I was diagnosed there have been developments in stem cell therapy and implants.
Big Pharma is spending Big Money to find a cure.
Meanwhile the best hope appears to be good nutrition....and supplements such as Macushield.
If you are interested in the AMD thread (5 previous posts under Simply Seeing Or Not) you may like to take a look at the RNIB page, and scroll right down to this video Staying Independent with AMD.
The RNIB is the Royal National Institute for the Blind here in UK.
Unlike the Macular Society video which I complained about in the previous post with cartoon character Gloria, this video features Shirley, a real person with AMD who lives independently, enjoys audio books, teaches a cookery class for people with a visual impairment (because she didn't want to eat processed food from the microwave). She uses a folding white stick called a 'thimble stick' I think, but not all the time. Mainly when she travels on the London Underground. (Yay! She travels on the London Underground!)
Shirley says the news of AMD was 'horrible'. I'd agree with that. But the choice of language - and I quote here from the Macular Society video - 'fear and devastation' 'terrible plight' and 'little hope' is very different in the RNIB video. Neither is Shirley surrounded by sad little figures in attitudes of despair.
It is worth remembering I think that the condition is not life threatening, though it is clearly life-style threatening
I want to support the Macular Society. They fund much of the research which I hope will find a cure for macular degeneration and other eye diseases.
My last blog post on the topic Seeing Red was forwarded by the local organiser of a Macular Society group to the Society and elicited a response from Graham Newham of the Society which you can read in the comments on that post. It is good to know my voice is being heard, and I do know mine is not the only dissenting one!
Next post on the topic - Things I wish I had known....
I have written a little before (under Simply Seeing Or Not) about Macular Degeneration.
Warning! do not watch this video if you have just been diagnosed with this condition.
If I was depressed when I got this diagnosis i would have been suicidal by the time I had watched this!
I think it is dated and patronising in the extreme (little old lady/childish rhymes/cartoonish). Profoundly negative (Gloria's life is over). Not even accurate (people with advanced AMD do not live in a black world, they still see light and have some peripheral vision). Does playing on our worst fears really make people more likely to donate? The thought of a newly diagnosed person looking for 'help' and finding this appalls me, and I am amazed that anyone could think this is appropriate or in any way constructive.
Just out of interest I looked up Cancer Research uk for comparison - what a different approach.
More on the subject when I have calmed down :-)
..or should I say Venezia. I am enjoying learning Italian with my excellent teacher Luisella. She speaks a lot in Italian throughout the class - talking quickly, translating as she goes, insisting we listen, listen, listen and talk, talk, talk. She goes at a challenging pace!
A challenge I had not anticipated was being unable to read the whiteboard when Luisella uses a coloured or faded pen. I had to explain that I have an eye problem. (I have AMD, a degenerative eye condition.) Until now when out and about or meeting new people I get away with not saying anything, but we are asked to work in pairs and read to each other from the textbook. If the lighting is not good - and it isn't - I can't see the words. I am still so shocked when this happens! So of course I have to say 'I'm sorry I can't see that'. I have a tiny torch the size of a credit card (thank you Lynne, what a thoughtful gift). It helps but makes me very slow. I've never before in my life been slow in a learning situation. It is so hard! It makes me feel foolish and so self-conscious. I know I have to get over those feelings and find ways of coping.
It also makes me feel humble when I see people coping with far greater difficulties.
I enjoyed this post on a favourite blog about Venice.
(This post explains why I am learning Italian!)
Most of the time I can see very well, but I can't anticipate when I will be able to see and when I won't. (I have Age-related Macular Degeneration).
This makes using screens difficult when there is not enough contrast - bank ATM's, mobiles, texting, It is a bit like when you come indoors from bright sunshine and momentarily you can't see much, but it can happen to me at anytime and my eyes don't adjust quickly. If the weather changes suddenly which it does often in UK, I might not be able to see for a bit, or driving along I come into an avenue of trees or the sun comes out from behind a cloud or....
I noticed on our trip in February that I could read some road signs perfectly well, then change direction and not be able to read the next one at all - it would be blank - even huge motorway signs. And sometimes, a grey car on a grey road is all but invisible. A deciding moment came when I was approaching traffic lights and couldn't tell which one was lit. No amount of looking harder made any difference. (Fortunately I was in the passenger seat at the time.. but it scared me!)
So I've had to give up driving. You can't drive when you can only see some of the time.
There have been tears..
(But don't send me sympathy, though I really appreciate your kindness, as it will just make me teary and then I won't be able to see what you have written!)
Now you see it, now you don't
It's a disconcerting condition AMD (Age-related Macular Degeneration).
It crept up on me slowly.
In a softly lit restaurant I picked up the menu and it was blank. Blank? I turned it over. Blank. I turned it back over and blinked once or twice, then I tried looking away and looking back again. Nothing. I tried harder (this has almost always worked in my life!). Nope.
By now my heart was thumping a bit. What was happening? I said 'I can't read this' to my husband and went to the loo (I could see the stairs) to take a few moments to compose myself and supress the panic that was rising.
When I went back upstairs Barry had moved to another table with a light directly above it and I picked up the menu and could read it! Touched by his thoughtfulness and relieved that I could see it again, my eyes welled up with tears and made it all blurry!!
I did get a meal eventually.
It was delicious. (Kember and Jones in Byres Road Glasgow)
(There is a short piece here about eye health and diet.)
An artist seeking a simpler life - (but not too simple!)