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Age related macular degeneration
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Message 1.Â
Posted by mistresslucy (U9471573) on Saturday, 14th January 2012
O/H and me just back from A&E. Hes just been diagnosed with AMD,(the "wet" type).
Hes never smoked,has had 20/20 vision all his life (67years).
Anybody else have it ? or has had it, treatment/outlook/???
Help!
Lucy -
Message 2
Posted by carrick-bend (U2288869) on Saturday, 14th January 2012
Commiserations to your OH - A friend had it, 20 years ago, but I'm sure that treatment has changed a lot since then.
I wonder if you'd get more traffic to this thread, and more replies, if you put a linked thread in the Bull, as a lot of people never look in TVH? -
Message 3
Posted by mistresslucy (U9471573) on Saturday, 14th January 2012
Thanks carrick,but I'm not sure how to do the linky things!
Have been googling furiously and things could be worse I suppose.
really feel for him tho as he is terribly afraid now of not being able to read, (his greatest pleasure in life!) Lucy -
Message 4
Posted by carrick-bend (U2288869) on Saturday, 14th January 2012
You start a thread in TB, and I'll do the linky things - yes, when I had a bad accident, I couldn't read much for 6 months, and it was only made vaguely bearable by a nurse with a compatible taste in literature keeping me supplied with talking books.
Text-reading software has come on apace, maybe now would be a good time for him to investigate it; at least he wouldn't feel so powerless? -
Message 5
Posted by mistresslucy (U9471573) on Saturday, 14th January 2012
Off to stsrt the thread in The Bull,thanks carrick. It seems so unfair given what I've been reading about causes of AMD,smoking,more female than male,healthy diet etc.
The main cause in his case seems to be high BP.
But hes been medicated for that for years and years,which may also have contributed to his aortic abdominal aneurysm three years ago. Lucy -
Message 6
Posted by dunlurkin US (U2222436) on Saturday, 14th January 2012
Hi Mistresslucy,
First of all my sympathies - somehow it's always worse to get medical issues at weekends.
I have two related relatives with AMD (an older relative also had it). They both attend hospital appointments that I think are monthly. Sometimes they have "scans" and according to the results of those they are treated with injections.
The injections are said to help slow the progression of wet AMD although there are no guarantees of course. I think both of these people would say that in this their treatment has been reasonably successful. As far as I know both are still reading, using computers and driving (this has been OKed by the hospital specialists and DVLA). The biggest issue at least for the one I know better seems to be middle distances - recognising people saying hello in the the High Street, distinguishing cans of beans rather than peas in the supermarket. They also take prescription vitamins and other supplements that are said to help - on this I think the evidence is still being collected.
From what I've heard, speed is important, so getting a specialist appointment (probably at a "big" rather than local hospital, at least in these cases) asap could mean that treatment would start more quickly.
I hope that helps to ease rather than increase anxiety.
Good luck to your OH!
DL
ps - and despite my screen name - these are both in the UK and being treated on NHS. -
Message 7
Posted by mistresslucy (U9471573) on Saturday, 14th January 2012
Thanks dunlurkin,we're in south-west Ireland and did go to the "big" hospital as a matter of urgency today.
Friend who is a nurse said "go NOW".
Went to A&E and straight to Eye clinic,v fast treatment,he is to go back in less than a week for injections. Lucy -
Message 8
Posted by dunlurkin US (U2222436) on Saturday, 14th January 2012
Hi Lucy - sounds like you're in good hands then. I forgot to mention that both of my relatives are older - 77 and 80 I think. They were both diagnosed maybe 5-10 years ago. The whole family knows what to "look" forward as there seems to be a strong hereditry aspect.
Oh - and the injections are OK according to one - the dilation that lasts much of the day is worse.
DL -
Message 9
Posted by carrick-bend (U2288869) on Saturday, 14th January 2012
Here's a link to the thread in The Bull, while I'm at it -
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Message 10
Posted by Thanks for all the fish (U10654037) on Sunday, 15th January 2012
My father was diagnosed with it in one eye, also in his 60s, but after 40-odd years of heavy smoking. It was faster onset than usual, although with hindsight the signs were there for several months beforehand; his depth perception went wonky and he kept tripping over kerbs.
After several months of scans and injections into the eyeball they told him there was nothing further they could do for him, although the injections did improve things a little. He still gets regular check ups though, and thankfully it seems to have stabilised and his other eye is still fine.
They can do a lot more now than they could even two or three years ago, so fingers crossed they can help your husband. -
Message 11
Posted by mistresslucy (U9471573) on Monday, 16th January 2012
Well O/H has started Ocuvite vits and I'll be reviewing his diet to see if any improvements can be made.
He doesnt like oily fish except tuna but luckily does like his veg and we are both addicted to Tesco finest sweetcorn,(yellow and orange veg v important)
So plenty of peppers,carrots and sweetcorn on the menu.
Thank you all so much for your input and good wishes. Lucy -
Message 12
Posted by CC Growing old disgracefully (U13344869) on Monday, 16th January 2012
Has he thought of a support group?. There are usually plenty around most towns. The help of others in this situation is often the biggest help and they do understand exactly what it is like.
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Message 13
Posted by gigglemahanaz2 (U14257954) on Tuesday, 17th January 2012
hello. sorry to hear OH has AMD.
Not nice, my late MIL had this due to diabetes, she had the wet type as well.
MIL was up and down to St Thomas's eye department for years with it, she had laser treatment to drain the water off the back of her eyes (her AMD was pickedup quite late) to no avil, she ended up partially blind but we got lucky with one of the jounior doctors who gave me information about local groups for the partially sighted and blind who could help.
We got in touch with them and managed to get many aids to help MIL stay independant (she lived alone), so it may be worth getting in touch with the RNIB (I think they changed the name to Sense) to find out more info and to find out what treatments OH will have/need and also to find out what they can provide in the way pf practial help, they may be able to give you info about groups local to you who may be able to help you nd OH. -
Message 14
Posted by mistresslucy (U9471573) on Tuesday, 17th January 2012
Hi carol,
our town is so small the only support is of the underwired variety!
There is a group in Dublin but thats quite a way away. Still thank goodness for the Internet. Lucy -
Message 15
Posted by mistresslucy (U9471573) on Tuesday, 17th January 2012
Hi giggle,
Am really hoping that this has been caught in time to save at least the other eye and hoping the treatment will reverse the "wet" eye.
App this can happen.
Treatment seems to be coming on quite fast in this area. Lucy -
Message 16
Posted by gigglemahanaz2 (U14257954) on Wednesday, 18th January 2012
hopefully Lucy it's been caught in time.
My late aunt in Bantry Bay had it as well but it was caught in time so she only had minor problems with it but she did get fed up going up and down to Cork City to the hospital, as she said to me mum it's desprate with the hanging around in the hopsital!
I didn't realise you were back at home so assumed you were here in England, is there no places over that you can find out about that could send you through some info to help you? -
Message 17
Posted by gigglemahanaz2 (U14257954) on Thursday, 19th January 2012
bump
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Message 18
Posted by mistresslucy (U9471573) on Thursday, 19th January 2012
No giggle,he hasnt started bumping into the furniture yet!
Phoned hospital today and was told that consultant hadnt seen his casualty notes so this means that there was nothing on his notes to indicate urgency.
I asked if it would speed things up to go "private" and was told no.
Consultant wont now see his notes till next Tuesday but I was told by nurse that she wouls speak to consultant and someone would get back to me before next week to talk us through things.
When I asked why doc on Sat had said we would be seen within a week,she told me that "they have been told innumerable times NOT to say that because it causes anxiety to patients who arent seen within a week"
Aaargh
Lucy
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