Progressing MD & Lack Of Support

By Charley

1 min read

I have been diagnosed with dry AMD in 2018 and had no problems at all. However, the ophthalmologist neglected to tell me that AMD comes in three stages, the first stage 10 years without any problems, the medium stage when sight deteriorates, and I am at present at the medium stage.

Unfortunately, 2 years ago I decided to move from the country into the city for a life change not realizing that I am getting into the medium stage as I did have AMD since 2013 but was unfortunately not diagnosed at the time.

Having had lots of stress with moving, and many things happening, my eyes started to deteriorate quite badly, I now am terrified of driving as the glare of the sun and grey asphalt makes it quite hard to see. I can hardly see my food on the plate, and having visited a doctor again, all I got was "It will get worse."

I am taking MD tablets containing the required vitamins, but I seem to get worse despite a healthy lifestyle. Would I had been told that AMD goes in stages, I would have stayed in the country as life is obviously much easier. As I live on my own, with my little chihuahua, I am concerned about how much worse it will get and what to do. There is no support group here in Perth, WA.

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Brown Eyed Girl Moderator
Welcome to our Community @Charley. I'm in a situation somewhat similar to you, so I understand how you feel. I have been diagnosed nearly ten years for my first eye, and about eight years for my second eye. I'm at the intermediate stage. I live in the suburbs of Sydney. I have often thought of moving to the country, but worry about being further away from health services. If my dry macular degeneration turned to wet, I would need to get injections. This would be much easier in the city. In the country, I might have to drive a couple of hours, and that is a lot to ask someone to help with. In the city I can always get public transport, a taxi or a Uber. There is a new treatment already released in the US and soon to be available here, for the advanced stage of macular degeneration. It is an injection into the eye called Pegcetacoplan. It isn't a magic bullet, but it does offer hope of treating the advanced stage. One of our community members was in a trial of this drug and wrote about it here <a href='https://maculardegeneration.net/living/pegcetacoplan-study' target='_blank'>https://maculardegeneration.net/living/pegcetacoplan-study</a>. Have you thought about attending a Low Vision Clinic? I went to one near me, and they had some interesting suggestions. Even if you don't need it yet, it's good to get to know them. Don't hesitate to ask us anything at all. Best wishes, Wendy, Patient Leader.
Charley Member
Hi Wendy, Visability here in Perth contacted me re advice on what to do and in due course I will contact them. At present I am still reasonable, but I seem to get worse by the day even though the ophtamologist said, it had hardly changed. It is mainly driving which has become a problem. I lived in Noosa and never would have changed to the city if I would have known that MD will become worse in due course, but nobody ever mentioned it and consequently I had no concern. Life in the country, i.e. Noosa was easy with hardly any traffic, nothing far away and specialists appointments could be made within a week, none of which applies here. My thought was, getting older, it might be better to be in a big city with good specialists and hospitals, but that is not the case, everybody is too busy, adjusting to the traffic is stressful, so in my case, I would have done better by staying in Noosa. Such is life, we learn!!! Hopefully it will not get much worse and I will have to adjust to a different life, but I am just turning 78, so I have to be grateful to have had a nice life without any big health problems. I have bought a head torch from Kathmandu which helps me to see when I am cooking. It is more the finer details, which I have problems with. Take care, best regards from the West, Charley 
1. Brown Eyed Girl Moderator
 <inline-mention username="Charley" user-id="6763541"/> Noosa would have been the best of both worlds, if only you'd known. The beach, the boardwalk, the river, the boating etc. And still having access to doctors and hospitals because it's a reasonably sized place. I've spent many a holiday there. I can sense your annoyance that you weren't informed of the chance of progression. But, as you say, we have to adjust and it sounds as though you are doing just that. Perth is a beautiful place too, in my opinion. I only drive during the day now, and to be honest, I don't miss driving at night too much, especially in the summer. I can go out for dinner and be home before it gets really dark. There are lots of tips in the articles on this site so I hope you find things that are helpful to you. Please keep in touch, Wendy, Patient Leader.
picky2 Member
Charly Hang in there, I too have advance deyMD Tiis group is very supportive and you will fine good advice here/ Have consulted with a low vision specialist. Your local optometric organizatuon can help you find one. stay posituvr I too grt friustated at times but it is only temporary. John aka oicky
1. Charley Member
 <inline-mention username="Brown Eyed Girl" user-id="3141081"/> Hi Wendy, I highly recommend that you mention the name Andy Rosenfarb in your group who has the most detailed information about MD on YouTube. Everybody who may just have been diagnosed, will find this documentary immensely helpful. I wish I would have heard of it before! Kind regards, Charley
2. Brown Eyed Girl Moderator
 <inline-mention username="Charley" user-id="6763541"/> thank you for this. I'll have a look at these YouTube videos today. Best wishes, Wendy, Patient Leader.
Brown Eyed Girl Moderator
<inline-mention username="Charley" user-id="6763541"/> hi there. I thought I'd just drop in to say hello and see how you're going over there in Perth. It's getting pretty cold here in Sydney. How are you managing now with your vision? One of my eyes has turned to wet and the other is still dry, but I'm managing ok. Hope you are, too. Warm wishes, Wendy, Patient Leader.
Charley Member
Hi Wendy, thank you for thinking of me. I still regret having moved from Noosa to Perth, as everything was easier with less people and cars and I had the perfect house for "old age", unfortunately, no ophthalmologist ever bothered to tell me that it goes in stages, I never would have moved. All the things I wanted to do like theater, concerts, etc I can't do as I don't see at night. The professor I see, just mentioned by the way, that I have now GA, never any support or advice! So I am quite annoyed about the lack of info one gets, and only now do I do the things I should have done 10 years ago, i.e. diet, exercise, vitamins, etc. Nobody every mentions to pay attention to cholesterol, as the drusens are made up of that type of fat, thank God there is YouTube, the infos are fantastic, elas, a bit late. I am still driving, but only very short well known distances, and so I battle on! Have a nice weekend, cheers, Inge 
1. Brown Eyed Girl Moderator
 <inline-mention username="Charley" user-id="6763541"/> Hi Inge. I really don't know why some doctors don't give patients the full information about macular degenertion. I was given diet, supplement and lifestyle information when I was first diagnosed, but the various stages weren't discussed. I can only think they don't want to worry us too much, but we need the information to be prepared. Ignorance is not bliss! Have you ever thought of making another move to somewhere quieter, but accessible? It would be a big step, but you would know what you were looking for this time around. Wendy, Patient Leader.
Charley Member
Hi Wendy, thank you for your comments. Unfortunately, I am stuck, a long story, but everything basically went wrong with my move from Noosa to Perth including my health, so I don't think I could cope with another move. I'just have to accept the situation and try to make the best of it!!! I still have one Chihuahua, who is getting old and I don't want to put him thru the stress of airtravel, I lost my little Foxy after coming over here, well, whatever way I turn it, I have to learn "gratitude" I preferred the fun life!! Never mind, looking at the world, we could live at worse places! Take care, cheers, Inge alias Charley
1. Brown Eyed Girl Moderator
 <inline-mention username="Charley" user-id="6763541"/> you're right. We are pretty lucky here in Australia. I think a move is in my future, as much because of age and a large house as because of my vision. They are opening a new Metro line in Sydney in a couple of weeks which goes to almost all my shopping, medical and entertainment locations. I can see myself in an apartment somewhere along this route. Hope your little Chihuahua stays well. Best wishes, Wendy, Patient Leader.
Charley Member
Thanks, Wendy, I just spoke to a 92 year old who had MD since her youth, and it has not progressed, she eats 3 Brazil nuts every day, and lots of greens, well, I will try that too!!! Cheers, Inge
1. Brown Eyed Girl Moderator
 <inline-mention username="Charley" user-id="6763541"/> my original RS recommended a Brazil nut a day for their selenium. I try to do it, but there have been a few packets go stale in the pantry at that rate! There is one there now, lol. Evidently too many are not good for us, so I must recheck the recommended safe rate. Have a good day, Inge. Wendy, Patient Leader. 
2. Brown Eyed Girl Moderator
 <inline-mention username="Charley" user-id="6763541"/> Hi Inge. Just wanted to pop in and see how you're going over there in Perth. Have you settled in any more since we last "spoke"? Does your specialist ever mention the injections for GA that are available overseas, but not here yet? Warm wishes. Wendy, Patient Leader.