Blind and Visually Impaired Community
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What to ask my doctor... (self.Blind)
submitted by TacomaWA
So, I had a terrible experience with my first doctor a few months ago. She couldn't believe, because of my age, that I had macular degeneration. She even joked about it when she saw signs in my eyes that I did. They ran tests that confirmed I did have it in both eyes and, in a less than five minute phone call a few hours after my visit, delivered the news to me with practically no further information. When I asked for a followup, she said "I could see now" so I should not worry about it... and she would see me in six months. She recommended I take vitamins.
The one thing she did say was that I have the late onset of the genetic version of macular degeneration which must be, from my own research, Stargardt disease. I could not find anything else it could be. Again, I don't know that for sure because my original doctor was useless. After much wrangling with the HMO, I am finally set with an appointment with a specialist next week.
What should I ask them? What should I be doing? What resources do I need? How do I prepare? What should I expect? Beyond my own research, I know practically nothing except there is no cure and... beyond vitamins... there is nothing to be done.
I have to admit, I am feeling like my vision is declining... and it is frightening.
Thanks for your help...
The one thing she did say was that I have the late onset of the genetic version of macular degeneration which must be, from my own research, Stargardt disease. I could not find anything else it could be. Again, I don't know that for sure because my original doctor was useless. After much wrangling with the HMO, I am finally set with an appointment with a specialist next week.
What should I ask them? What should I be doing? What resources do I need? How do I prepare? What should I expect? Beyond my own research, I know practically nothing except there is no cure and... beyond vitamins... there is nothing to be done.
I have to admit, I am feeling like my vision is declining... and it is frightening.
Thanks for your help...
jrs12 2 points 4y ago
How old are you? We can't offer medical advice on here, but if you are still in school there are services you can get to help you use the vision you have most effectively and plan for the future. If you are in the U.S. you should go to the Office of Vocational Rehabilitation Beauru of Blindness and Vision Services division and get a case open. They can help get you the training and equipment you need to get or keep a job and live independently. It's a crazy long waiting list though so start as soon as you can.
The doctors are just going to worry about the medical side. Typically they don't have information regarding how to live with the vision you have once it gets as good as they can make it.
The doctors are just going to worry about the medical side. Typically they don't have information regarding how to live with the vision you have once it gets as good as they can make it.
TacomaWA [OP] 1 points 4y ago
Thank you for the pointers...
jrs12 3 points 4y ago
For the record that doctor sounds quite crummy and unprofessional. It always shocks me how flippant some doctors can be when sharing news about vision loss.
TacomaWA [OP] 1 points 4y ago
I will admit, when I first heard the diagnosis and did a little research into what it meant, I went through a several months-long phase of denial. Yes, I should have known better. I am middle aged and have plenty of life under my belt. However, I have never been dependent on anyone. I have always been able to completely rely on myself... so... this was really upending.
I am trying to not be too hard on myself about it. I am human.
The person who was with me at the doctor's office and witnessed everything, however, was outraged with the doctor and kept nagging on me to do something about it. I just kept putting him off because I didn't want to think about it. It took me a few months to see it for what it was.
Yet, I cannot deny what is happening to me. Even as I type this, I can't read any of this text with my left eye. It is all distorted like looking through wavy glass. I can only see *much* larger fonts... and, even then, I have to concentrate to see what the letter is.
Fortunately, my right eye is much better, but I can tell things are declining there too. I have macular degeneration in both eyes so it is just a matter of time. I know that.
Again, I am middle aged. My life is (was) settled... I have a very good job but am a long way to retirement. This is upending things and I need to find a path. I absolutely know there is one, I just have to start figuring it out. And, that is where I am at right now.
Thanks for your help. I appreciate it.
All my very best...
I am trying to not be too hard on myself about it. I am human.
The person who was with me at the doctor's office and witnessed everything, however, was outraged with the doctor and kept nagging on me to do something about it. I just kept putting him off because I didn't want to think about it. It took me a few months to see it for what it was.
Yet, I cannot deny what is happening to me. Even as I type this, I can't read any of this text with my left eye. It is all distorted like looking through wavy glass. I can only see *much* larger fonts... and, even then, I have to concentrate to see what the letter is.
Fortunately, my right eye is much better, but I can tell things are declining there too. I have macular degeneration in both eyes so it is just a matter of time. I know that.
Again, I am middle aged. My life is (was) settled... I have a very good job but am a long way to retirement. This is upending things and I need to find a path. I absolutely know there is one, I just have to start figuring it out. And, that is where I am at right now.
Thanks for your help. I appreciate it.
All my very best...
KillerLag 2 points 4y ago
From my experiences, people with Stargardt's often prefer lower light conditions, and don't like strong light. Sunglasses may help for situations where bright lights can't be avoided (I believe red tints help).
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