I am writing a novel about a lady who is in her late 50s or early 60s and develops AMD and would be very grateful for any help or advice that anyone could give me so that I can write my novel accurately.
What would be the first symptoms that the lady may notice that may cause her to make an appointment at the opticians?
At this point, how would her eyesight be affected in relation to day-to-day living tasks (e.g. reading, driving, etc) and how would this affect how far she could read the Snellen chart and close-up texts? Please could you give an indication of last line she could read on a Snellen chart and smallest line on the close-up texts.
Would it be possible to go back for an eye test at the opticians the following year with exactly the same eye sight and then maybe suddenly develop wet AMD, have referral to hospital for injections, give up on them and lose most of her sight?
How rapid (number of days/months) would the sight loss be from giving up on injections to losing her sight? What symptoms would she get and over what timescale?
Thanks.
Anna
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Anna17a
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Good morning Anna, 12years ago I saw a crack in my window screen of my car. A full debate with the optician because she found nothing wrong until she took a photograph. Hospital appointment 3 days later. You have AMD you will eventually go blind! I am not blind.
AMD is a very slow loss of central vision, it is so slow we adapt over the ' years '.
The lady should not give up. Contact the Macular Society they have so much help to give her. Low Vision clinic at her hospital can help too.
I currently do voluntary work giving help and advice to people with sight loss – a lot of whom have AMD but other problems as well.
I have had some small concert reviews published in newspapers, but have always wanted to write a novel and now seems like the ideal time. They say to write about what you know and from personal and professional experience I know a fair amount about sight loss, but just want my story to be accurate as I personally don't have AMD.
Anna
May I suggest you also peruse the various FB pages / YouTube vids supporting the visually impaired. These might give you snippets of real issues you can weave into your storyline either directly or in passing eg I saw one recently on what it's like online dating if you're blind !
Good luck with your novel Anna. I first noticed something was wrong when I realised I had a darkening in my central vision, and a large red blob when I closed my eyes.; this I found out for myself was a scotoma. I was developing wet AMD.
I had reported this spot to my optician, and despite my age, mid 70s, she didn't photograph the back of my eyes, and failed to diagnose this. (She was a young optician who had recently taken over from my more experienced optician, who'd retired). I had to write her a very strong letter about not photographing my retinas, despite my telling her about this "spot" in front of my eyes. That was my first sign that anything was wrong, as well as suddenly desperately needing new glasses.
Another clue for this incompetent optician was my reading of the Snellen chart had markedly deteriorated in my wet AMD eye. Fortunately it was only one eye.
(I will say here cataracts also do this). Normally, (with up to date glasses), I could read down to the last 2 or 3 lines on the chart, but this deteriorating eye suddenly could only read down to the middle line, despite the fact that some years before I had a cataract op. And within a week couldn't read it at all. So the deterioration with wet AMD is that quick. It needs immediate treatment.
Through my own endeavours I had to get the optician to fax an urgent referral to my local eye consultant. This now opens an enormous can of worms. Although I was seen fairly quickly, for initial diagnosis, getting an urgent appointment for treatment was like pulling hens' teeth.
Ophthalmology seems to be the Cinderella of the medical world. I had to go privately at vaste expense; £1300, (probably costs more now), to get the first necessary Eylea injection. Follow up, my consultant promised me would be in 4 weeks, on the NHS.
It was impossible to get my follow up treatment appointment. Unbelievable as this sounds I was put on a waiting list to go blind. I came across an article about this, not specifically about me, but about many others. (D. Telegraph 7/6/18. "Hundreds go blind waiting for NHS treatment", by Laura Donnelly Health Editor).
Another even stronger letter, but this time to the Health Authority, asking it whether it knew that this was happening on its watch? Copies went to my GP, MP, local paper, Macular Society and my eye consultant, with he result I got tacked onto the end of the appropriate clinic list, which involved me waiting some 3 to 4 hours after I had to report in. I then had a course of Eylea injections; but every time I had to fight for an appointment within the correct time span. You've no idea what it's like Anna. You should find out. It was like the Wild West. My heart bleeds for the appointment booking staff being harried and badgered for appointments that don't exist.
Though I shouldn't say it, thank God for Covid. Now we are booked in at very specific times, and seen almost immediately. Many more clinics have been organised.
I have had a cataract operation in my "good" eye; I had been going almost blind, and had to read with a magnifying glass. My (new) optician had said if I didn't get the cataract op. done soon I wouldn't be able t drive.
I had been waiting for this op. for some time; then it was postponed. Then it was put on hold indefinitely because of Covid, but thankfully it was done in August. I can now see. I felt like St. Paul on the road to Damascus. Provided I have the good vision in one eye, Anna, I can see perfectly with new glasses. And I do have excellent peripheral vision in my wet AMD eye. I do have scarring though in this wet AMD eye because of all the rigmarole and faffing around to begin with, but it is stable at the moment.
I wonder if the character in your novel will have the aggressive?/ bullying? /nagging? streak that I have. So many people/patients have too much of a Uriah Heap streak in them, and don't like to "cause agro" for fear of antagonising those who are trying to help them.
Let us know how you get on with your novel Anna: what has inspired you to write it? I'd love to know!
Thanks for all of this information.They always say write about what you know and I have personal and professional experience of sight loss. I currently volunteer helping people with sight loss (mostly AMD) as well as combined issues, but don't have AMD myself so want to get it right.
Completely forgot to mention the other cardinal sign of wet AMD is seeing straight lines go wavy. This distortion is especially marked if I cover my good eye and only see the world through my wet eye.x
Just want to say that I have dry md and have distorted vision and all straight lines are wavy. When I first diagnosed I was led to believe that when straight lines appear wavy it meant that you had wet md.
Hi worrybeads so glad you have said this. I have recently been diagnosed with wet amd and have dry in the other eye. Because of my worry that the wet was progressing to the other eye I started to check and realised that I saw wavy lines and slight distorted vision. I thought it was progressing into wet but went to the hospital and it hadn' t. But I still worry and check so it is so good to know about your experience as my initial understanding was also that wavy lines meant wet amd. Thank you
Hi Anna I can so identify with fed13. I was diagnosed by optician as having dry AMD at age 60 in my right eye, but told there was no point going to the eye clinic as there was nothing they could do. After probably a couple of years I paid to see a private consultant who diagnosed wet AMD. I also paid over a 1000 pounds for each Lucentis injection of which I had two and to start with they seemed to reduce the fluid. Because of cost I managed to get on the NHS list and over the years I have had many injections but I have also had to fight for appointments been kept waiting far too long sometimes so very stressful!! Over time it seems the injections have not worked but my central vision is blurred. After a lot of fuss and bother I got a second opinion from a consultant who thinks my condition has now reached a plateau and is not getting worse. I pray he is right. I no longer have injections which is a blessing and I just hope my Good eye keeps going. I still experience problems getting checkups which are supposed to be every 2 months. I attended clinic yesterday after two cancelled appointments which meant I had gone 5 months!! Why are eye conditions so badly funded our eyesight is so vital. I know covid is not helping but I do despair of the NHS. I am now 66 and have no definite diagnosis.
Thanks for your reply pinkperfection. I am a great believer in putting one's difficulties in writing, so I hope you have let your Health Authority know of your problems with getting appointments in the correct time. Very difficult I know. But putting stuff in writing always works for me. A phone call is forgotten, (because something else always happens immediately afterwards or the receiver of call is in the middle of doing something else. Emails get deleted and forgotten . So for anything important I write, sometimes even forking out for recorded delivery, so they can't say they never received it. "Oh! It must have got "lost in the post". Another gambit. Of course the pandemic get blamed for everything. How I long for Easter and vaccination. All the best pinkperfection! xx
Ask many diferent people of their experience ofdeveloping Macd and you will get many stories, some differences but all with the same outcome. I have been the leader of a MAC group meeting in Fife Soc for blind over some years. Have listened to many about their experiences. Some have dry Mac some wet, and some like me with both any can relate to each other. Phone me if you wish to discover more Y ou will receive many replies from people with MACD. good luck in finding the material you seek
to try to give a more specific report in answer to specific questions . First awareness sudden blurr over left eye. optician reported blood leak. reported to NHS eye clinic. one week later visit for first Lucentis injection. Terryfying but not really that painful. Blur initially worse the over next month blur becoming paler. next month 2nd injection. again worse then gradually a litle more pale. Same 3rd month. Seems the blood and lucentis causing furirng up ,like scouring with vim. Over many months the blurr seemed to crack up somewhat and spiderlike patterns were all over my eye causing a dry eye feel. (when myother eye was also affected 2 years late rwith blood bleed . the blur did not fade and never has 8 years later. the process of loss of some sight to loss of most has taken 8 years. Cataracts are always always inevitable I was told annd this is the case.I had to stop driving immediately a I was all over the road spidery flashes in one eye causing distress. The light getting in the problem eye thru the spidery webwas like a kaelidiscope plasterd over that eye. I could have tried an eye patch but prefered to avoid the problem before I caused an accident. Visits to optician and efforts to fid specs that helped over the years were not effective. Readin gllasses helped with reading the computeer and still do .thank god I was devastated when I was told that things cou;ld not get better.A cataract OP. would possible cause more damage advised to hang to available site tho cataracts visable. Iam 87 now and just before Covid I was made leader of small MAC group . this gave me my get up annd go again after many years and I was geting inti my stride when covid hit. since then I have had pnemonia and bloodclot on lung so not getting on with that very well. (some of this may be of use in you story .
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