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.

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