Hi - I would like to hear from anyone who is coping with this - particularly in your 50s or 60s. I have very high myopia and as a result, am at very high risk for myopic macular degeneration. My mother is 81 and has this and has suffered some vision loss. Quite frankly, I am not so concerned about vision loss in my eighties - I want to see what people are experiencing in their 50s and 60s. I do not know anyone under 80 facing this.
My eye doctor and retina specialist tell me there is no cure or treatment. I’m just supposed to live with the worry of blindness hanging over my head. All they can do is monitor it and tell me I am stable for now.
I do take AREDS2 and Omega3 supplements, and try to eat very healthy - lots of salmon, kale, etc. I shield my eyes from the sun - sunglasses and hat always.
Anyone out there with this condition? What are you doing? What are you experiencing?
Hi rockvillmom.
Another thread I wish I wasn’t really interested in, but here I am!
AREDS2 IS doing something! And that is what I do, too. I’m almost ready to collect medicare. Dad’s family has lots of it. For him, I believe it started in his 70’s and accelerated. He can see to move around and sometimes at a distance, but not to read or drive anymore. He is 88. His sister had it and went blinder faster. But she lived with heavy smokers and died before she got as blind as he is. His cousin is 93 and has been pretty bad off, but still sees some light . Lives in her own little house in the back yard of her son’s. They are there all the time for her. I don’t know how she maintains her spirits, but she is always cheerful when I call (usually with bad news).
What has been worrying me more lately is the viscous fluid drying up and causing floaters and distorted vision. May lead to retina tear, yet they say wait on that, too. When it really comes lose THEN they will do something. Causes double vision a bit at night and I can’t do needlepoint very long anymore.
And medically helping it does depend on if it is wet or dry MacD. I think they can give shots in your eye for… wet, I am pretty sure. One is much more treatable, but also much faster progressing . Do you know which yours is?
I don’t actually have it , yet, thankfully, just at very high risk. I believe myopic macular degeneration is the dry type - there is no treatment. I’m hoping to find others either with it or at high risk of it to compare notes.
Me unfortunately me. Runs in my family - both the wet and the dry. I am being monitored. I’m now on 6 month visits with my opthamologist but he assures me that the treatments are advancing rapidly…and then he pats my hand :-). A few years ago laser treatment was the only thing available but there are now a number of injectible drugs, or so my doctor tells me, that are an improvement in therapy. There are also some promising drugs in Phase III trials so hang in there Rockvillemom…I know I am on pins and needles. My father had wet and was blind within about a year. His sister had dry and she went blind after about 5 years. I’m much more afraid of the wet. only because it happens fo fast. But both experienced the onset in their late 70s.I don’t have the history on the other family members as they live in Europe.
It’s a frustrating situation to know this is a very high probability of happening - with no way to prevent. I’m hoping this stays at bay a few more years…
My mom had this, and it was starting to have a significant impact on her lifestyle in her early 70s. (She died unexpectedly at 75.) She had the dry kind, and it progressed slowly, but she found it necessary to limit her driving by the time she was 70 (to familiar local roads in the daytime), and she anticipated that she would soon need to give up driving completely. She was becoming increasingly isolated for this reason. I hoped that she would move to a neighborhood with good public transportation so that her vision problems would have less of an impact on her lifestyle, but that never happened.
Maybe we should all move to cities with extensive subway and bus systems as we get older? (I’m not kidding.)
My mother has macular degeneration and gets injections in her eyes every few months. She also has drops for her eyes three times a day.
She also has something called Charles Bonnet syndrome. She sees things that are not there. She sees animals by the side of the road. She thinks we are driving into a brick wall. She sees swarms of ants on the walls. She is not hallucinating. She does not have any form of dementia. Apparently when the eyes cannot see well, the brain fills in the ‘blank space’ with images that the brain has stored. It’s the ocular equivalent of phantom leg syndrome. Curious.
MIL has wet Macular degeneration. She gets injections and has drops. The progression has slowed, but there is still some progression. The dr told my H and SIL that the best things to do are the supplements (Ares?), available at costco, and to be obsessive about wearing sunglasses.
I do take the AREDS2 supplements. Buying new sunglasses is on my to-do list - larger frames and being sure they are the best available on blocking UVA and UVB. No more cheap unknown quality sunglasses.
Injectables for age-related macular degeneration Eylea and Lucentis have been approved by the FDA years ago. I am very surprised the doctors are not informed.
The doctors are very informed. Those drugs are blood vessel growth inhibitors, and they can be prescribed to persons with wet AMD, but they will do zip for a person with the DRY form.
The doctor is absolutely right - vitamins and sunglasses are your best defense for either type of AMD, especially for the dry where there is no treatment. Sadly, many experimental treatments for dry AMD fizzled out, including a drug under development by a local co here in my neck of the woods.