Help! I have just been told I have AMD as... - Macular Society
Help! I have just been told I have AMD as well as the cataracts I was hoping could be cured. Now have to adjust to fact there is no cure.
Hi Lynn,
It is a difficult diagnosis to come to terms with. At this stage do you know if the AMD is dry (there's currently no treatment) or wet (where they may be able to treat it with injections)?
My experience is with wet MD and the injections stopped the bleed.
I suggest that you give the Macular Society helpline a call. They were brilliant when I was going through the same. It was re-assuring to have someone to talk with and they were able to give me information on the condition. There are so many questions that go through your head when this first happens and I found it difficult to think straight for at least 2 weeks following the diagnosis.
Regards
Alina
Hi Alina Thanks for responding. Mine is the dry variety - apparently good as not so aggressive as wet but bad because no treatment! Glad to hear that your treatment was successful, but has this still left you with sight loss and the possibility of further problems? I have started taking the supplements recommended and just hope for the best. I can still see to drive ftb as the problem is only one eye, but have cataracts in both which they feel will not be ready for operating on at the moment. Have been given an appointment for 3 months and advised to contact if anything changes. Big problem in that my Dad lost is sight and it has always been my biggest fear - oh well just have to get on with life and live day to day. Have contacted Somerset Sight who have promised to get back to me on Monday, I am sure it will work out. Best wishes to you Lynn
Hi again Alina, I have just gone onto your info and see that you live near Nuneaton - coincidence? I have step family up there and our son (my step brothers boy who we adopted at 18 months) was born at St Georges Hospital. My eldest birth child lives near Derby as well, so we have a connection! Lynn
Hi Alina, Sorry to hear about your diagnosis. Just thought I would add that, from my own experience, it is really important to know the signs for wet MD so that, should it ever start, you get treatment as soon as possible. Good luck with your appointment.
Larch, sorry are you responding to my question or Alina? I am Lynn. However, as you say it is important to watch for wet MD as well. Worrying time. Hope you are ok. Lynn
Hi Lynn,
So yours is dry MD... lets hope that it progresses very slowly.
It's difficult to know if it's better to have wet or dry... after 3 injections the bleed in my right eye stopped and I have been VERY lucky, my vision has been restored so I'm left with a distortion where the scar is on my macular. It's the best I could have hoped for, as I'd lost most of the central vision when I received the first treatment. As I'm only 46 yrs old they think my age has worked in my favour. I'm not sure if I'll get another bleed elsewhere, the consultant doesn't seem to think it's likely, but who knows. I just count my blessings everyday.
Yes, I live in Nuneaton. I've been here for about 12 years now. I'm originally from Worcester, so I spend a lot of my weekends back there visiting my parents. Nuneaton isn't the most exciting place to live but as I work in London it's a great place to commute from, so it has it's advantages.
Glad that someone will ring you on Monday. There's a lot of aids to help you cope with central vision loss. I bought some fairly cheap plastic magnifyers that I can keep in my laptop back and a great little one with a light that I used on menus. Getting the right lighting is also important as well, and as I said early the Macular Society helpline are terrific.
Try to stay positive and try not to worry too much about the future (I know easier said than done!)
Best wishes
Alina
Thanks for the information. Do you commute daily to London then? what is your job? I am semi-retired, just a few hours a week as parish clerk.I was born and raised there, moved when I was 21 on the London overspill to Basingstoke. Lived there for 13 years before moving to Exmoor. I am 61, married with 7 children (3 birth children from my first marriage and 4 adopted with my second husband. Our youngest is still at home as he is only 9. We also have 5 grand children so life is fairly busy.)
My optician has been very helpful, advised on lighting etc. glad to hear your treatment has been successful,although the injections in the eye sound painful.
Best wishes to you Lynn
Hello Lynn, Alina has given you some useful advice over the weekend. It is so important to chat to other people who have gone through similar experiences.
There are several steps you can take to help slow down the macular deterioration.
I would urge you to call us on the Macular Society's Helpline: 0300 3030 111 (which is a local rate phone number) where one of us can chat with you on the phone and hopefully support you and point you in the right direction.
We also have some self-help groups in Somerset and can give you their contact numbers over the phone.
With Best wishes
Jayne
Thank you Jayne. I have been given the number for Somerse Sight and they have a course soon but apparently I have to be assessed first. Have a number for that too which I will try.
Regards Lynn
Hi Lynn,
How did your chat go on Monday? I hope you found out lots of useful information. The whole sight loss 'thing' is scary but there are lots of us going through the same so you don't have to ever feel alone in this.
In answer to your questions... yes I commute most days to London. I work for Post Office Limited as a Business Change Manager. That means I work on various projects... the last big one was replacing all the PIN Pad devices at every counter position in the country. It's a good company to work for and I've been here a long time.
Oh and in answer to your comment about the injections... they're not painful at all. They numb your eye and all you feel is a little pressure. It's over so quickly there's no time to think. I was freaked out when they first told me about the treatment and was ready to bail out but there really wasn't anything to get concerned about.
So you're down in Exmoor... what a lovely part of the country. I'm heading down to Exeter in a few weeks and I'm so looking forward to it... not least of all because we'll be seeing our favourite folk band 'Show of Hands'.
Alina
Hi Alina they were very helpful and talked about the 6 week course.however, I have to be assessed by social services before I can be accepted on to it. Have applied but don't know what the criteria is yet, I may not be considered enough in need I suppose. I would really like to see how others cope with the loss practically. Glad to hear the injections were not painful for toy. Does it mean they restore your sight or is there some loss to deal with?
Do you commute by train or drive? I hate having to change at
Birmingham New Sreet when I come to
Nuneaton. Last time I travelled by train I cheated by going straight through to Derby and staying with my son before going on to Nuneaton!
I hope you have a good time when you come down to Exeter, it is a lovely city,about 35 miles from us. I don't know of the band you mention, I shall have to look them up on the Internet!
Best wishes to you and thanks for your help. Lynn
