Macular Society
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malacular degeneration newbie

Maybe not really a newbie as Specsavers optician saw what was the beginning of MD at back of my eye about 4 years ago. Told me no need to worry about it yet as very small. However the next time I was due for glasses, I went to Vision Express, to whom I mentioned the MD. Thier optician saw the dark spot also, but said they thought it wasnt MD. Presume at that stage it was still very small. So, 3 years on and glasses in good nick and no change in vision until a month or so ago when I felt I had a slight blur at side of one eye. I have fatty deposits at side of pupil in white of eye and thought it was that grown, so as I hadnt had eye test for 3 years, decided to get up to date test. New optician. This one tells me I have MD in both eyes, and shows me. I can see dark areas in both eyes, and they seem quite big to me but he says not too bad, and not yet causing problems. So I have a grid to test my eyes with once a month and told me to buy Macushield or Macuhealth ( cant remember the name exactly right now) and the best foods to eat to get the right nutrients for this condiditon ( luckily stuff i like to eat anyway, so just need to up the amounts and buy a smoothie maker.) (I cant help but feel Vision express have led me astray by saying I didnt have it, when I could have been trying to prevent it developing further for these last few years!!).. So, being a pro-active sort of person, I like to gather all the available info and do whatever I can to get best outcome. I am wondering if anyone with progressing MD can still do hobbies such as art- painting and drawing in particular, also dressmaking, both with a machine and by hand? Also sculpting realistic figures. It does seem that the things I enjoy most are the things I am having to give up due to health related issues, but I guess that is the way of things ie we just wear out the body parts we use the most ie in my case walking is extremely painful, and it was one of my favourite pastimes. Now will possibly be giving up art, creativity, and reading and sewing. Hoping people can suggest ways around this. I note thier are magnifying aids to help with reading, are there any big, say A4 sized clip on ones you can maybe attach to a counter top at an angle so you can still do hobbies, by looking through it?Can one still read or do whatever by turning thier head sideways to ther object they want to focus on? And to compound, this optician also found I had cataracts starting in both eyes; can someone tell me whether those can be removed safely if You have MD, or if the surgery would aggravate the MD? Hopefully I will have lots of years of still fairly normal eyesight, but I feel forewarned is forearmed so best to know. There has to be some creative solutions that people have come up with? I have to find them, as being an outdoorsy and creative arty type, I am going to find sitting at home without do-able hobbies to take my interest, very frustrating indeed!

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Hello Linzee

You will have been informed that dry MD "usually" progresses very slowly. While living a healthy lifestyle and possibly supplements may help, there is no guarantee that it does, but I am sure you will be able to follow your hobbies for a long time to come yet. And yes, there are several visual aids available. The first thing is to get yourself a high definition lead lamp. I cannot read very well any more without a good strong light. The light makes all the difference.

As for your cataracts - nowadays surgeons tend not to remove cataracts until they are really bad, especially if they can not be sure whether it is the AMD that causes the loss of vision, in which case the removal of cataracts would not make much difference, so I have been told by one of my consultants. "We have to think about it in the next two years" so I was told, even though the visual acuity in my right eye with dry AMD and severe cataract is almost as poor as that in my left eye with wet AMD and a less advanced cataract.

They will, however, remove cataracts despite wet or dry AMD if needed. It is stated in the literature I was given that with the removal of cataracts there is a small risk of it causing MD. But if we have got it already, then what can we infer from that? I'm not sure.

Sorry to hear you cannot go walking anymore. Myself being a keen walker, I can understand how much you must miss it. Can nothing be done on that score? We have walkers in our club with replacement knees and hips. They are not exactly as good as new, but they still walk.

Take care now. All the best.

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Thanks for reply. I meant to reply to your question about walking- I am on strong painkillers, have had 2 x keyhole surgeries, one for each knee, and one knee replacement earlier this year. made a good recovery from surgery as far as knee being more stable, but the soft tissues, tendons and ligaments are not doing so well. Everything has been out of alignment for so many years that it has all now been put in different place. My knee had dropped and rotated, plus I was told my knees had a congenital deformity, so I get just as much pain now as I did before the replacement, just in different places! But it IS slightly more stable!! The other knee has suffered from taking the brunt after op too I think, ie all those bending and lunging exercises didnt do it any favours. But the big problem is Plantar fascilitis and there is a bony growth growing out of my heel which is a Killer! I am in agony with each step and even lying in bed, with mainly heel pain.

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Hi linzee

I am very sorry for you suffering so much pain. I can see that you have had numerous complications and so many things going on so that I fully understand that walking is a no-no now for you. I do hope with all my heart that you can still follow your other hobbies. Best wishes for 2018.

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Dear Linzee,

You sound like a very motivated person and I can understand your indignation and frustration you feel at not being given clear information in the early stages, but you have certainly been doing a lot to help protect and monitor your eyes since.

You also sound like a very talented person and whilst you feel that you may have to give up the things you love doing,this may not necessarily be the case.We at the Macular Society know of members who are still able to paint, and knit, and have evidence of their work in cards we sell, or their stories in our quarterly magazine “Sideview”.

If you would like to contact us by phone or look on our website here

macularsociety.org/resources

you can find out about our resources and services we can provide. You will find information about protecting eyes, nutrition, lighting, low vision aids, daily living skills, using technology, to name but a few.

If you ring us we could chat around some of your concerns and needs, and signpost you to local resources (help organisations) or our volunteer-led Macular Support groups. If you are of working age, we have specific information sheets and groups for this. We also have telephone counselling and befriender services to which we could refer you.

Our magazine is supplied free quarterly to members, and we have an introductory trial of 6 months free. You can join up here:

macularsociety.org/6months

Our winter issue that came out a month ago had an article by a lady who was an artist, dressmaker, writer and reader who said “I still have pictures to paint and a book to write” and how she has been inspired to achieve despite her condition.

We may be able to send you a complimentary copy if we still have any left, if we know your address.

I hope this is helpful to you, and we wish you a Happy Christmas and all the best for the New Year.

Regards,

The Macular Society

Helpline Tel 0300 3030 111

Between 09.00 -17.00 Monday- Friday

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Hi, and thank you for your reply and all of the info. I just read the article you mention. That lady is quite inspiring. It helps a lot to know that someone else can still paint etc. I did have thought that I am good at realistic painting, ie animals, but not very good at abstract; maybe this will change if Md progresses!! Though I wouldnt be able to see results possibly! I do feel blessed that at least I have my sense of humour intact, and that has to be a big plus I think. I feel that right now I am looking at the worst scenario, but only insofar as forewarned is forearmed, and hopefully I will be pleasantly surprised and have very slow progression. I have to say for me, this would be the one thing that would be the worst to cope with, but I know that we just have to make the best of whatever situation we are in, and do the best we can do at any time. Whinging and whining isnt going to make anything better. But i cant say i am happy about the diagnosis!! One thing puzzles me - is it better to use eyes as much as possible now, or take more time out to rest them? If that makes sense! The other thing is windows; I can wear hats and sunglasses outside, but how dangerous is UV rays coming in through window? I sit at part of my kitchen counter to paint, sew, and sculpt. In my tiny flat, it is the only space I have and also the only place with good light, having two windows and a florescent strip light. The smaller window is on far side to where I sit, but the larger window I am facing directly across the counter. The window is double glazed, but I doubt would have any UV filters. Do you think I should continue to sit here or is it a danger to my eyes to be facing window. It has morning sun, which has moved around by about 1pm, I would say... Also, I have seen on ebay, some adhesive window film which says it is 97% UV resistant. What I saw was a patterned version, which I was looking at as a privacy screen for another small window, but wondering if a clear version of this is something beneficial for this eye condition. Also I assume skylight in top of car is not desirable? ... Sorry for all of the extra questions! I will most definitely visit the links you have provided and take down the phone numbers. I don't think I am quite ready to phone just yet, as still absorbing the fact that I have this- I was quite shocked, so it needs to rattle around in my head for a while first, before I can talk about it, but I most definitely will in the future. Thanks so much for your help here.

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Btw I have two friends who have had cataract ops and no longer need distance glasses at all . .one only needed basic reading glasses.! Quite miraculous.

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Hi Linzee,

Sorry for the delay in replying, but we have been closed between Christmas and New Year.

In answer to the issues you raise, there is no harm in using your eyes as much as possible, with some sensible precautions.

In regards to light, it would be good to shield your eyes, outdoors and indoors, against strong sunlight using sunglasses and/or yellow overshields which are inexpensive.

See our booklet here on “Protecting your eyes”

macularsociety.org/sites/de...

It is also helpful to ensure you have good indoor lighting to reduce eyestrain, especially while doing hobbies or close work. You may find this booklet helpful in assessing your current lighting sources and needs macularsociety.org/sites/de...

Technology and screens are often a big part of our lives these days, but they can be adjusted to help, rather than adversely impact, sight. You may find this information helpful for preventing eye strain, even though it is directed towards people experiencing difficulties.

macularsociety.org/sites/de...

I wish you a Happy New Year for 2018, and many more years of good eyesight too.

Regards,

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Hi marianS, ...Thank you for your reply and all of the advice. I will read all of the links, and take on board what I can do ie indoor protection. Silly me was thinking I only had outdoors to worry about, but the more I learn, the more it seems that indoors will be much harder to manage. I will definately check out the yellow eye protectors, though not sure I will like having un-naturally coloured vison. ( will firmly tell myself I'd like no vision even less) I think that is going to be quite a hurdle- I dont even like wearing sunglasses much, so will take some getting used to. (to this timepoint, I do wear hats and caps with visors most of time outdoors, so haven't bothered so much with sunglasses.) Am wondering if I could make some sort of indoor sun visors instead for wearing near windows. Luckily, so far not having a lot of eyestrain indoors, other than from laptop after several hours, and the dry eye issue. ...Still, I have loads of advice and some new knowledge now, got my supplements and a smoothie maker to make sure I eat all of those bright coloured fruits and veg each day, have new glasses and sun glasses ordered, so am surely, thanks to you all here, much better equipped than I was a fortnight ago! Happy new year!

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PS. What I was thinking in regard to my hobbies which I do in front of a window is to make a visor, as I cant see for close up work or reading, when wearing my glasses. I have bought some clear window film to block 97% of UV rays, but for my kitchen where I work at my hobbies, I'd rather not use the window film, as it is the only view in the flat. I already get depressed at the lack of window light & views here, as this flat is very overlooked by a taller building, so I need to keep the kitchen window sharp and clear I think. So, I can sew a visor made from this window film, to be worn like a wide golf visor. (like the visors which you have probably seen in a 'Western' film or tv show; there always seems to be a newspaper man or man in the telegraph office, who wears a transparent green visor.) I think with a similar UV filtering visor, I will have good light through it, but as I will mainly be looking downwards at whatever I am working on, I should have reasonably good protection from the rays, dont you think? I would still have occasional glimses/looks out of window, I know, when it wouldnt give much protection, but that would only be for a few seconds at a time. When my head was down working, the visor's resulting almost vertical position would effectively block out UV rays from the window, I think??

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Hi again Linzee

Just noted that this link on our website takes you to the story about Gillian that was featured in our recent magazine:

macularsociety.org/i-would-...

The article was actually promoting our local groups and how she was inspired to achieve her ambitions.

All the best!

The Macular Society

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Hi marianS, thank you. I have visited and read the link - thank you. She is quite inspiring, and helpful to me to know that we have similar interests and she has been able to carry on - long may she continue. It helped me a lot to read it.

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It's not really up to opticians to determine how serious your condition is!!! They should write a letter to your doctor so the doc can refer you to an eye specialist. If MD is caught early then injections can stop its progress. And although I have eye tests before injections it has no bearing on the frog spawn blob. and wavy lines I was seeing with almost 20/20 vision before having the injections.

I hope you have notes from Vision Express. You should find out what their policy is about informing people's doctors. It was Vision Express optician who wrote to my doc recommending I go to eye hospital so the one you saw was particularly arrogant.

I was recommended to take Macushield Gold by hospital ophthalmologist. it's -a source of very concentrated luteine (?) from marigolds which you wouldn't get from a normal diet. (And I eat loads of veg!) because it is so expensive I take 2 instead of 3 tablets hoping my diet will supplement the supplements!

As others have pointed out the cataracts are a separate issue and I hope you don't have to wait too long for the op,

All best wishes

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Thanks for your reply. Vision Express are the ones who said I didnt have it, after being originally told by Specsavers that I. So I wont use them again! I will discus with my doc when I have a check up for other stuff in early new year, though optician didnt say I needed to. I don't think the optician thought it was at a serious stage yet? He didnt say I needed to inform doctor, or refer me. Just that I definately had it in both eyes. He gave me the chart to check eyes with, and said he wanted to see me in a year, unless I had any worrying changes. And told me to take Macushield. Have taken my first tablet today, but wondering if I should have ordered Macushield Gold instead? I think it is only one tablet of the standard sort, which was deciding factor for me when ordering, as TBH, right now, i am sick to death of taking tablets, and so tired feeling it is an effort to do that.. Do you think I should take the gold version instead? With regard to cateracts, do they have to get to a certain point before you can get the op? And I read online that funding is stopping for cateract ops in some UK counties or postcodes. I dont think mine are veyr advanced; I just want to do all I can to ensure as much as possible that things dont take a downwards turn with either condition!

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I havei have found its best to accept the limitations , i you still have good hearing you can can join da voluntary group rented to your interests and volunteer for some task related to your interests. Such groups are always short ofpeple who will actually do something and not just be passengers. I belong to ax gardening club and arrange talks and find dout estimations for day trips, I also supervise the planting and maintaining of a communal garden. I find everything I need to know on the internet’s and my I pad let’s me magnify text and pictures which I can’t do with books or catalogues.

The second point is to optimise lighting in the home and the macular Society has very useful

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Hi SusanTL; Thank you for your reply.You sound very pro-active!! I agree ie best to accept the change of circumstance. At this stage, I refuse to consider it a limitation; at present time I think it more positive to think of it as a warning. I don't think I will be joining a local voluntary group at this time, but who knows what I might do in the future. I have too many painful physical issues to enjoy in any way, going to a meeting that lasted even an hour. Also, I am not my best in groups as I find that more than one or possibly two people tend to drain my energy at the best of times, for various reasons. I would not like to in any way help with organizing things for any group, I must say, unless it was 100% behind the scenes. So I am one of the ones you would consider dead wood, sorry to say, but other people, like yourself, do enjoy being more proactive so I think it all works out fine in the end.... I enjoy my own company for most of my interests, and hopefully this wont have to change, or at least not for many years.... I have found lots of useful info online; right now I really just want to incorporate as many preventative measures into my life as possible, and this forum has been great, with so many of you sharing advice and info, also experiences. I guess I am still lucky, as I can see fine right now - long may it continue! ...Lighting in house- so far, the same as always, and I don't like bright light so tend to use spots of light, which is a soft yellow or pink hue so far- that seems less glar-ey to me, as bright light jars my brain, gives me a headache too, and makes my eyes hurt... having said all of that, thanks to all here, plus some other sourced info, I have now got my omega 7 ordered ( whew! that is pricey stuff- it had better work!!!) got my macushild or whatever it is called, decided to wear a sun visor when working near window, and luckily have several hats I can wear outside. Need to order new glasses with transition UV protected lenses, next week when in better funds, and will also order some UV resistant window film to block rays. Not looking forward to having a somewhat blurry images of outdoors, I have to say, and a bit worried I will get depressed from it, as outdoors such a big part of my day to day enjoyment. I think that is all I can do right now, but thanks to you all, if things go downhill at a later date, I will be prepped with knowledge and options.

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