- Nutrition
- Coping
- Research
- Vibrating ‘space boots’ may help those with low vision or who are blind
- A study done in the UK shows that after education & approval process, optometrists in the community were successful identifying patients with wet AMD.
Tag: diagnosis
Doctor, Doctor, It Hurts When I Do This
Hi, it’s Linda (Sue calls me Lin). I’m hijacking Sue’s journal. I need to vent. Did the title grab you? It’s the first line to a joke that ends with the doctor saying “Then don’t do that!”
First, I do not have AMD. My dad had it so my risk is higher than ‘normal’ so I’m concerned about developing it in the future. I’m here because of and for Sue. And now for you.
I went for my annual eye exam with the doctor who has been doing mine for 25 years. He’s a great guy, a great doctor. He helped me through a tough time last year when I had cataract surgery & developed PVDs (Posterior Vitreous Detachment) in both eyes which is common. I also have some crazy thing on my corneas called map dot fingerprint dystrophy.
I’d gone to my appointment armed with a printed page from our website to give to him with the hope he’d eventually take a look at it, maybe even post it on their website. Granted, he was busy but in the past, even when he was busy, he took the time to talk to me. After the exam was over, after he told me that my macula was healthy, he asked how I was doing. I started “My friend of 40 years who is my age has AMD and a few months ago her vision became so bad that she had to quit working and driving.” He stopped me with “I don’t want to hear about that [AMD]..it scares me! My mother went blind from glaucoma from the shots!” I didn’t know what else to say but “I’m sorry about your mother’s vision.”
OK, I was not there to be checked or treated for AMD. He had other patients after me. I decided not to leave the website paper with him. Maybe if I didn’t know now what I do about the disease his reaction wouldn’t have bothered me but it did. I’d looked at his rack of brochures & the only one on macular degeneration was from the company that makes the AREDS/AREDS2 supplements that many doctors recommend (I have LOTS more about supplements in another post; I’m working on expanding it, actually). What’s up with that? Are there no other handouts? Since the supplement company is making money from what the doctor recommends, I’m sure they sent him the brochures for free.
As I drove home, I kept thinking about why his reaction bothered me so much. I figured it out. When I started to do research for Sue and for this website, I kept hearing about the visits people had with their eye doctors when they first got an AMD diagnosis. Here are just a few statements with a brief comment from me in brackets:
- “He told me that it would progress slowly, maybe take 10 years to get worse so don’t worry about it.” [every person’s case is different & there is no definite time frame.]
- “There are vitamins that you can get that are expensive but buy the cheaper ones.” [The subject of vitamins is more complicated than just going by price.]
- “Take these ‘eye vitamins’ and also take a senior formula multivitamin.” [TOO much of some vitamins/nutrients CAN be harmful!]
- “She didn’t tell me much, she just said that it’s an age thing.” [Even though AMD is more common as we age, many people get it when they are much younger; some people never get it.]
My eye doctor actually said to me today “you don’t have macular degeneration…yet.” Is he saying that I will eventually get it? I know better, thank goodness.
Basically, patients are getting little to no information and downright inaccurate information from their eye doctors. By navigating our website, you will find that we explain why each of statements are just not correct!
Which brings up the ‘head in the sand’ issue. My eye doctor voiced his fear of the disease & I believe that he was doing that to me as Linda, not to me as his patient. I hope that for his patients who DO have AMD, he is supportive & will refer them to someone who can educate them if he chooses not to do so. But to know that HE is afraid of AMD wasn’t very comforting.
At least in the US, people are coming out of their eye doctor’s office thinking:
- “I have nothing to worry about because my doctor said not to worry”
- “This is too scary, I’m not going to think about it”
- “I am so confused, where do I go to get more information?”
I’m guessing that many of you had that last one and that’s why you are here!
So tell us what YOU were told when you first got your diagnosis? Just leave a comment below. Continue reading “Doctor, Doctor, It Hurts When I Do This”
Highlight: What do I do if I get a diagnosis of AMD?
Getting a diagnosis of AMD can be a shock. We’ve found that many eye professionals don’t really do a good job of answering a patient’s questions. Also, you may not be able to ask questions right away. Many people in this situation turn to the Internet to do their own research like we did.
The Prevent Blindness organization has a system where you get a customized guide with resources, tips and steps that you can take to you be proactive about protecting your vision. All you have to do is to answer questions that you are given. You can print the guide and you can view it on a computer, table, smartphone. You can also go back and update your answers to get an updated guide.
Click here to go to Guide Me.
Highlight: Consistent checkups are important to eye health
March 25, 2016
This is a great article that points out that it is important to have your eyes checked regularly and that the timing depends on what’s going on with your eyes. The article makes 2 especially important points about a diagnosis of AMD:
- Even though there is no cure yet for AMD, it’s important to catch it early since there are some ways to slow down the disease.
- If a person is diagnosed with AMD, it’s a good idea for them to alert their children about it since there is a hereditary component to it.
In The Beginning
February 2015
I am a 61-year-young woman. Life is good. I am at the top of my career. I am active. People tell me they want to be me when they grow up.
February 2016
I am going blind. I’m terrified.
June 2015
I am driving down Route 11 with the windows open. Something gets in my right eye. No biggie. Wipe it out. With my right eye closed, the car in front of me disappears. Oh shit. Open the right eye again and the car in front of me is back. Close the right eye again and it disappears. There seems to be a problem here.
A call into my friendly neighborhood ophthalmologist gets me an appointment for the same day. They think it’s something serious. After several different tests, I am given a diagnosis of dry Age-Related Macular Degeneration (AMD or ARMD).
When I was in third grade, I had a button that said: “we never guess, we look it up.” In the age of the Internet and Google, this has become one of my credos. I look it up.
We never guess, we look it up.
What I find out is that Macular Degeneration (MD) is an eye condition in which the fine focus part of the eye stops working. There is actually a more complicated mechanism behind it but we will leave it at that for now. I will visit the science stuff later.
Macular Degeneration is thought to be genetic. Looking back, I realize my father had it. It also happens more to white people than other races. It happens more in women than in men. And, thus the name. happens in those of us who are over 55. Those are the static variables. (Static variable, sounds like an oxymoron to me.)
I’m in the static variables, I am guilty, guilty, guilty, guilty. Among the lifestyle choices that are factors in AMD, not so much. I have never smoked and I am in fairly good shape. The jury is out on whether or not my history of high blood pressure has anything to do with my developing the condition.
So here I am, based on the static variables, a really good candidate.
What exactly, however, was happening in those big brown eyes?
Written in February 2016; updated September 2018
To fast forward to what Sue’s life is in September 2018, read In the Beginning – Revisited