Future

Hi my name is Ellen, i have just been diagnosed AMD a parently i had signs 2years previously at Specsavers and was not told. I do not know what type i have either. Told to use grid and take supplements and to get in touch with them if notice any change so i think it must be dry. Have been told to wear sunglasses outside to p rotect eyes. I too am very scared and panic not being able to get around independently, cooking ,makeup, taking dog for walks. How do we cope and change our life? Am waiting for hospital appointment may take weeks here in Crewkerne, Somerset any help from you all would be grateful. Ellen

18 Replies

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  • Hi Ellen,

    just wanted to send you a hug x Its a big shock youve had and will take a little time to get to grips with it all.

    It does sound like its dry you have. Opticians usually dont tell in the very beginning as just causes worry even though sight not affected at that time. Makes sense but of course its a shock when they do say and we naturally feel aggrieved.

    Dry is slow acting so dont worry about your appt date. The grid is important- if you see wavy lines go to optician who will give you referral to hospital eye clinic straight away.

    My advice to you is to contact the Macular Society now.

    they are wonderful and have information, helpline, buddies etc which will help you deal with what you are feeling at the moment and give you some peace of mind for the future.

    Keep posting here too - we all have similar issues even if different diagnosis and support each other .

    Best wishes, xxx

  • Hi Eyesright. Thankyou for replying promptly. Good to know people understand.

  • Hi there Ellen

    Eyesright is right, I too extremely shocked when I had diagnosis of dry AMD. The Macular Society has been most helpful and is always willing to take a call to give you support

    macularsociety.org/How-we-h...

    Warm regards, and a <hug>

    David

  • Thank you so much for explaining. I awaiting for hospital appointment then should know more. I have been recently knocking things over from sides misjudging is this anything to do with it? Ellen

  • Your optician / eye clinic are best to tell you. I would guess its possible, the brain does compensate after a while so if it is you will learn to deal with it, but also you must be very distracted with all this on your mind - i knowI get clumsy when Im worried about stuff.

    Best wishes x

  • Hi Ellen

    Who diagnosed you? Doctor or optician.

    I have wet AMD and was missed by the optician, and sent away with a clean bill of health despite not being able to see properly out of my right eye.

    Thankfully my dear daughter took control and got me straight into hospital and was put straight into the injection programme immediately. That was 3 years ago and still attending.

    This forum is extremely helpful and macular society also.

    Keep doing the amsler grid and don't hesitate if it goes wavy at all. Please don't panic, I think we all did when first diagnosed, there is help just make sure that you know where to go for it.

    I took to my bed for 3 weeks with shock when I had my first injection, now when I have one each month I just toddle off back to work!

    I have learnt to do things differently that's all, but still do everything I did before but probably a bit slower and with more care.

    Just stay vigilant and if it is dry, it could be years before you see any difference.

    Best wishes for the future and keep smiling

    Maria X

  • Thank you. I am waiting for appointment for hospital and will know more,

  • Ah, don't worry too much, it sounds like dry which is slow to develop. I feel for you vis a vis shock! I felt suicidal. My advice to anyone is avoid chains of opticians, they do not compare with private one-off opticians in my experience. Ask around at your next appt. perhaps with others who live in your area. Stay strong.xxx

  • I think that is a bit of a generalisation, as both my mother and I both went to chain opticians (different chain, different city) and both were promptly diagnosed with serious problems and referred immediately to the hospital. You're likely to find good and bad wherever you go.

  • Hi Ellen,

    Just a quick note about the Macular Society Helpline - 0300 3030111 - closed at the weekend but do give them a ring as soon as you can. They offer practical and emotional support. Also, there is a Support Group in Yeovil which would be a good place to meet other people with the same condition. Details on the website which has been flagged up earlier in the replies.

    There is a great deal of support out there, practical, emotional and social, and thousands of people in the UK are finding a way of coping with AMD. You are not alone! Don't be shy of asking for help and information. Persist if you need to - not all eye care professionals are sufficiently networked when it comes to signposting people to resources. Good luck and warm wishes!

    Gill

  • Hello Ellen

    I do understand how you feel; I've just found that my 'good' eye has now developed wet AMD and started the series of injections a couple of days ago after a few hiccups. I know I had the same worries as you but, even within a few days, calmed down when I realised all the help available. You can be very confident that the Macular Society will support you throughout. The first thing is to find whether it is the dry or wet type. Did the optician say whether it was in both eyes? Do keep checking the Amsler grid for wobbly lines - as others have said - it's your first line of defence.

    All the very best for now.

    Beldie XX

  • Do understand how you are feeling as i think we all feel very lost, isolated & alone.

    You are not alone, the Macular Society saved my sanity by arranging a Counsellor who phoned me once a week till i had calmed down a bit. There are local branches that you can go to & you will meet many others in the same position.

    Please do stay in touch on here as the people on here have helped me too. We are all in this together & while we cannot be together in person we are on here to help each other. Big hug for you & lots of good wishes for your appointment when you get it.

  • Dear Ellen,

    I am sorry to read of your recent diagnosis and related concerns. The impact of the diagnosis of any eye condition is generally compared to experiencing a bereavement. Individuals frequently go through very similar feelings and responses but in no set order. We do have a free telephone counselling service which can be particularly useful when an individual is initially coming to terms with the diagnosis. Please contact us for further details if this is of interest.

    It does sound as if it is the dry form that has been identified. However, if you are unsure, it may be advisable to contact whoever made the diagnosis (Specsavers ?) and ask them to clarify which form they have identified. If it is the dry type, as has already been mentioned, there is no concern over a wait to attend the eye clinic.

    The dry type is related to the ageing process and is more common in individuals over the age of 55 years. The deterioration is generally slow and usually over a period of months and years. However, how fast and how far the condition deteriorates is variable between individuals. There is currently no treatment for it, however, we talk about the importance of various lifestyle considerations which can hopefully have a positive impact on eye health and possibly potentially slow down the deterioration a little. Therefore, for instance, exercise is good for general health as well as eye health. It is important to try and maintain a healthy weight, keep blood pressure under control and avoid smoking. Research indicates that being careful with regard to nutrition can have a positive impact on eye health as well as general health and it is important to be careful with regard to protecting your eyes from the harmful effects of the sun.

    10-15% of people with the dry type go on to develop wet in the same eye. Therefore it is important that if you do notice any sudden eye changes, you either go to the optometrist so that they can check behind your eye or to the emergency eye clinic. If the optometrist identifies possible wet, then the Royal College of Ophthalmology guidelines indicate that they must do a fast track referral on the day of the appointment, via fax, straight through to the eye clinic, so that you can be seen and treated within 2 weeks.

    Please do not hesitate to contact us if we can be of any further help. Our helpline is open 9am – 5pm Monday to Friday on 0300 3030 111.

    Kind regards,

    Rosalyn-helpline

    Macular Society Helpline

  • Yesterday i spoke to mike at the macular society and he was very helpful, explaining about druzens etc. Thankyou. Ellen

  • Hi Ellen My heart goes out to you as I can totally relate to how you are feeling at the moment. I felt suicidal, thought my life was over but MACULAR SOCIETY saved me and when I went to local groups and saw how people with MD were coping I felt so much better, this was 18 months ago, Now I feel happier and try to stay positive, I had so many question going round in my head, couldn't sleep etc, Please do not worry too much you have your whole life ahead of you, Best wishes and good luck for your appointment. Kind regards, di x

  • Dear Ellen

    We would suggest you give the Macular Society Helpline on 0300 3030 111 to discuss this in more detail. Due to the fact that you have now been referred to the hospital ideally you should receive an appointment with a specialist as soon as possible. Did your Optician refer you on to a specialist? If so there is a fast track system for those with a macular condition. We look forward to hearing from you in due course. Thank you.

  • Optician just sent letter to my doctor who referred me to hospital waiting for appointment.

  • Hi.all. I am funded for pdt visudyne treatment dies anyone else have this ,

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