Macular Degeneration Patient Stories: Meet Miraim Giles

Miriam relates her experience of being diagnosed with macular degeneration as well as her coping strategies for staying positive.

Transcript:

How did you feel when you were diagnosed with wet macular degeneration?

1991 was when I first got hit. (Miriam was diagnosed with glaucoma in one eye in 1991 prior to being diagnosed with macular degeneration in the other.) I only picked it up myself, I'm an old nurse and I've done many vision testing on kids. I'm very adamant about yearly things, go to an ophthalmologist, you know, and I practiced what I preached. So, I was devastated in 1991. I was totally a basket case. Then when I moved on to the macular, I was like okay, I'm a 15-year cancer survivor, as of September 29th, of a real weird kind of cancer. I mean nothing I do is normal, trust me. Well, I just figured God's got me here for a few other reasons to do stuff, so I just say okay. When that came, I had gone over to see the retinal guy by myself, because I was just checking the bad eye and I could drive, and he gave me the bad words that you've got bleeding in your good eye. I had to get someone to come get me and we started that routine. I was definitely devastated; it just took the wind right out of my sails.

How have you been managing your vision care over the years?

I'm not a big television thing, the thing I miss the most is reading, but the large print and I have enough paperwork to do, as I said, I get involved with other things. I was smarter with the technical bit but the eyes themself, I ‘ve just got to go with the flow.

I'm more concerned about getting someone to drive me. My son said call Uber; I said no, I don't need somebody to drive me that doesn't know me. When I get the injection, I know darned well, I'm not going to be able to see. Everything's fuzzy for a while. It's better since I had the cataract surgery, but they're going to take me to my house by myself later in the day. I feel very vulnerable, so I would rather use people I know. Thank God, I'm going every six months, because I don't want to make them subject to giving me anything or me giving them anything. The ophthalmologist himself, I think they did a great job in the office. I was not afraid of the office but was more afraid of the drive.

How has the COVID-19 pandemic affected your vision care as well what goes on at your eye doctor’s office?

Limited patients, you're in and out quicker because they're not handling that volume, you're not waiting. I think they do an exceptionally well job. I am very conscious of my hands near my eyes, face. I find it a pain in the butt with the mask in the eyes. I think the biggest, the scariest thing is being afraid of falling, because with my glasses on for distance and walking, and the mask my glasses steam up, fog up or whatever you want to call it. You're afraid of a misstep and I'm seeing that a lot. I figured a lot of us have to do more when you go to PT and get some balance classes or something like that. I think that would be more helpful because of the pandemic. Remember I can't go back, I have to be quarantined. So, we're trying these new eye drops. I will use an ophthalmologist that my kids know to monitor the pressure in my good eye, because I can't have glaucoma screw up the macula which I'm doing good with. I'm caught between a rock and a hard spot but got to just keep monitoring and go with the flow.

How has the COVID-19 pandemic impacted your personal life?

This would be the third year doing a veteran's parade in our little town. It was great because, only if I was chasing men in my old age, because they didn't have many in the parade! If I saw you around, I was able to recognize people as a veteran and thank them for their service. We had antique cars take them. We did a good job. This year we can't. There are no permits, absolutely not. So, I brought my list with me, and while I’m not sure I can pull it off, but I'm making a list of the veterans and their phone numbers. We’re going to call the veteran and say, “Hey Mr. Smith, I know we can't have you in the parade, but we want to thank you for your service.” That's one thing to keep me busy and it'll get other people involved. I belong to the local Chamber of Commerce; we do a lot of crazy things, but once again, with the pandemic. The bad thing is no driving at night. I really forget about that, not even with macular, just being older, forget it. There's too many people out there walking dogs or themselves in dark clothing which you don't see. That would be my worst fear of hitting anyone.

Is there anything else you would like to share with the low-vision community?

I make my family, apparently nobody no one has had it in my family, but the kids are aware, and they both, let's see, one's 48 and the other is 53. They're very diligent about getting eye exams from ophthalmologists. I'm not saying anything against the other fields, but you know, I still say go to an ophthalmologist. The others may mean well, etcetera, but you have to go to the guy or the woman that knows it well first and be diligent.

This content was first posted on: April 20, 2021
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