Your Questions Answered

Find answers to your questions from the Visionaries on living, and supporting others, with low vision.

Whether you, a family member or friend has recently been diagnosed or you’ve been impacted by low vision for some time, you’re not alone. There are many people who’ve gone through situations like yours.

Your Questions Answered is a community based forum, providing people living with low vision and their supporters with knowledge and advice based on real, lived experiences.

Our Visionaries have provided their responses to commonly asked questions from the community, to help you in your everyday.

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Search for common questions using the categories below.

The first signs of low vision

Diagnosis

Treatment and care

Living with low vision

Supporting someone

with low vision

The first signs of low vision

Changes to vision often happen over time, sometimes so gradually it can be easy to miss, or the fear of the unknown can make seeing a doctor a daunting step. If you’re experiencing changes in your vision, and have questions about what you can do, hear from Jill and Caryl on their early experiences of changes to their vision.

Who should I contact if I’m noticing my vision is deteriorating? Would this be my general practitioner or an optician?

Jill

Deterioration of vision can have many different causes. If I, or someone close to me, was experiencing changes in vision, I would contact an eye doctor straight away so you can find out more.

To start with, you must find out the current state of your eye health and your baseline vision (your visual acuity). If you already have a relationship with an eye doctor such as an optician, optometrist, or ophthalmologist, contacting them would be a good place to start as they should know your baseline eye health already. If you haven’t seen an eye doctor before, I suggest booking an appointment at a local practice without delay. The eye doctor will then examine you and if needed, refer you to an eye specialist for additional tests.
I am noticing my vision is getting worse. Who should I talk to and what is the process of getting tested for eye disease?

Caryl

In my experience, I did not notice a vast change in my sight. I wear glasses as I am shortsighted and so I visited my optometrist regularly for checkups. It was also important for me to consult with the optometrist as my mother had age-related macular degeneration, or ‘AMD’, and it can be hereditary, meaning passed down from one generation to another. I saw the optometrist for prescription lenses and he monitored me for eye disease.

My optometrist detected a change in the retinal field and referred me to an ophthalmologist for more tests. The ophthalmologist is a medical specialist who treats eye disease as well as many other procedures, mainly medical and surgical eye care. The ophthalmologist diagnosed the dry form and early onset of age-related macular degeneration in my left eye only. I contacted a low Vision eye clinic, which comprises of an optometrist who specialises in visually impaired assessments and who works together with an occupational therapist. They educated me about my disease, told me about what to expect, showing me how to use areas of my remaining vision, and advised me on the use of visual aids.

The eye clinic also formed a group where people with retinal or eye disease are invited to join and we have a WhatsApp group where we share ideas and information and can ask for help.
What were the signs and symptoms of having an eye condition for you? What made you notice that your vision was deteriorating?

Caryl

When I was initially diagnosed with age-related macular degeneration, or ‘AMD’, only my left eye was affected. At that stage, I had not noticed a change in my eyesight. When I looked at the eye chart at the ophthalmologist, I noticed that if I focused on the letters on the charts with my left eye only using my central vision, they were blurred and wavy and parts of the letter appeared to be missing.

However, this did not detract from my day-to-day living, and I carried on as normal. I was however acutely aware of any changes to my eyes and regularly consulted with my ophthalmologist. Over a period of about 4 years, I noticed that the sight in my left eye had worsened as there was more central vision loss and then my right eye suddenly deteriorated, and I lost most of my central vision in both eyes. I could no longer see faces. I was forced to stop driving as it became dangerous and I was having trouble reading. Ì had to retire from working as a legal advisor, as I struggled to read documents and work on computers. I was then declared legally blind. However, I do have peripheral vision and I can see out of the corner of my eyes or if I tilt my head to either side. When I am at home or in a familiar environment, I am able to function almost normally using my peripheral vision, in that I am able to move around as I can recognise my surroundings. By memorising the different living spaces and areas, I can move around without crashing into objects.

When I go out into unfamiliar territory, I use my white cane to assist me navigating, but can still see enough around me using my peripheral vision. I must be careful of any obstruction, which could cause me to stumble or fall such as stairs or uneven surfaces. If I focus on something or someone, I will use my peripheral vision and so I tend to look above or past the object or face to see it more clearly. This helps me recognise people. I then piece together what I can see to form a whole picture in front of me.

Diagnosis

The fear of a potential diagnosis can delay finding out what is the route of the low vision and delay taking steps to manage it.

Why is it best to get diagnosed early? Can I not just wait and see?

Caryl

I believe I was fortunate to be diagnosed early as I could then monitor my sight. I joined various organisations to learn more about retinal disease and clinical trials. My medical professionals, as well as the experts in this field, also gave me valuable guidance.

I was determined to incorporate the lessons I had learned into my way of life. I had learned that I had to change my diet and lose weight. I knew that sometime in the future I would have to give up work, stop driving and so I was able to plan and make the necessary arrangements to adapt to my new normal lifestyle.
I feel nervous about getting diagnosed. What can I expect?

Jill

I think it’s normal to be nervous about being diagnosed. I’d expect you’ll have many thoughts and feelings going through your mind and I’d encourage you to openly share every one of those thoughts and feelings with your loved ones or doctor. The main priority is getting the diagnosis and understanding the diagnosis.

Receiving a diagnosis can be daunting but getting it early could lead to early intervention and better prospects for the future. Avoiding getting diagnosed could potentially be more detrimental to your visual health.

I feel understanding the importance of diagnosis is critical. You can learn to adjust to the changes ahead, including acceptance of the treatments that you may have to experience. When it comes to learning what is necessary to maintain as much vision as you possibly can, the earlier the better.
Are there any questions I should always remember to ask my doctor when I receive my test results? What should I do if I get confused?

Jill

Firstly, I think it’s important that a patient realises no question is too silly or insignificant to ask. A good place to start would be; ‘What does this diagnosis mean?’ Once you understand what your diagnosis means, the next question could be; ‘What are we going to do about this?’ You need to understand what the possible options would be regarding the diagnosis.

One question that can understandably be very hard to ask and sometimes very difficult for doctors to answer is; ‘What should I expect in the future with this diagnosis?’ You may find your doctor is reluctant to discuss predictions for the future with you due to the element of unknown.

However, even with the unknown, I think it’s important to always ask the question about the future and to understand that today, the only answer is we must wait and see.

Treatment and care

The thought of making decisions about treatments and managing low vision can feel overwhelming. It is good to speak with your doctor about your options and can be helpful hearing from others also living with low vision.

I am nervous about my treatment, what should I do?

Caryl

Anyone who has problems with their eyes would be nervous about treatment. I cannot deny that I was also nervous but I have complete trust and faith in my optometrist and my ophthalmologist. Initially I wrote down questions that I wanted to discuss with them about the tests that I had to undergo for my condition as well as the treatment options and they would explain everything I needed to know. The tests were simple and mainly involved eye drops and looking into various devices, which mainly shine a bright light into the eye. These tests may cause a slight irritation but that was all the discomfort I had.

I recommend asking your doctor about the testing and treatment process so you feel more comfortable with what’s going to happen.

Living with a condition

When it comes to adapting the everyday tasks to suit your unique needs, it can feel like losing independence. Listening to yourself and making small changes can empower you to keep enjoying the things you love each day.

How can I maintain my independence and do everyday tasks such as driving my car, doing my job and taking care of my family? What impact will a diagnosis have on my social life?

Jill

A patient diagnosed with a retinal condition must listen to their body as well as their mind. If and when the time comes, you realise tasks are beginning to become difficult to perform, I recommend asking for help and thinking about what you need to do to accomplish that task. For instance, the magnifying glass has become my best friend! Some days I need it and some days I don’t, but I use it to make daily tasks easier for myself and ensure I’m able to read whatever I need to.

Where driving is concerned, I think we need to be smart. The most important thing is to keep yourself, as well as others around you, safe. Again, listen to yourself and if you get in the car and you don’t think you should be driving, get out of the car. Safety is a priority for everyone.

For myself, it was very important at the beginning of my diagnosis, to maintain my job and remain in the workforce. I was a registered nurse in a high-volume, level 1 trauma center in a major city. There were very specific tasks I needed to perform to care for my patients. As time went on it became obvious, I could no longer safely perform the tasks of my job. Accepting that was probably the most difficult challenge I’ve had with my diagnosis. Once accepted, I did what I needed to do and took a step away from my job.

As others come to the realisation they cannot perform as expected, I believe the realisation will turn into acceptance and you do what you must do. That was the most difficult part for me.

I can’t really say that this diagnosis has had any type of significant impact on my social life. I still go and travel as many places as my husband is willing to take me and being surrounded by a great family and wonderful friends has helped. I personally don’t have the personality to sit back and wallow in sorrow. I try to do everything and not miss anything because you never know when the opportunity may come your way again. I try to never let an opportunity pass me by. Again, in doing all these things, safety is my number one priority.
How can I speak to family and friends about my condition? I am worried they will not understand

Caryl

In my experience, I received support from government organisations who were able to help me adapt to my new lifestyle including giving me mobility lessons on how to use a cane. I would recommend looking into the support options available in your country.

My local low Vision Clinic also gave me valuable advice on how to use apps on my cell phone and on the use of visual aids. I always made sure my husband was present at all medical appointments to understand and assist me with my condition.

All the information that I gathered from both medical professionals and organisations enabled me to educate my family and friends. I take the time to explain to people that I have problems with my central vision and describe what I cannot see. When I go out with anyone, they know that I always hold onto their arm and I ask them to describe any obstacles. I am comfortable in my skin and confident in my future and my ability to overcome any difficulties I may encounter.

Supporting someone living with low vision

Witnessing a loved one experience and come to terms with low vision can be emotional and worrying. Being there for each other through this journey and knowing there are others experiencing similar experiences can offer some comfort.

I am worried my loved one might have the signs of a retinal condition, but they’re reluctant to go to the doctors. How can I persuade them to go?

As with any medical condition, sometimes we are reluctant to go to the doctor because we don’t wish to know that anything is wrong. When my wife, Jill, realised she had a sudden change in her vision, we knew it was essential to seek professional help. We talked about how important her vision was so we went directly to a specialist. This is something we’re able to do in the US but the referral process may be different in your own country. I’d recommend finding out what this is.

Saving Jill’s vision in her right eye was all we could do as her left eye was scared beyond repair. Time was essential to Jill’s current status, and waiting would have been seriously detrimental.
My loved one has just been diagnosed with a retinal condition. What should I expect?

There have been many changes to our lives due to my wife, Jill’s, diagnosis. First and foremost is her depression of losing her career as a nurse. Immediately after the diagnosis, Jill stopped working for a year until we could find the correct low-vision glasses and treatment to help her see better. She was then able to work for about 22 months before being forced into retirement due to her vision. She was depressed, and rightfully so.

My wife is a strong independent woman who now relies on many people for transportation and other daily activities. As a result of Jill’s retirement, we had a change in income and many visits to insurance doctors to verify the disability. My days off are spent mostly taking Jill to one doctor or another, most of which are regarding her vision.

On the plus side, we are closer now than ever before. We have been married for over forty years and I have learned to appreciate our time as it is imperative to do as much as we can, “see” the world, and travel when possible. We are unsure of the future, and we live very much for today.
How can I connect with other supporters and carers of people living with low vision?

My wife, Jill, spends a lot of time on internet blogs that revolve around her disease. I follow her lead in this area. She sends me articles and websites that she finds interesting and sends me information via email. Jill and I spend a lot of time talking about her retinal condition with friends, family, and others as they ask about Jill in obvious times of her needing some type of special assistance. This is especially true when we are out, and she uses magnifying glasses to help her read a menu or something similar. This action always initiates a conversation.
Someone close to me is living with low vision and I feel like I could give useful information to the doctor about how they are coping. Is this appropriate?

As a husband and wife team, I go to almost every doctor’s appointment that my wife, Jill, has. She was diagnosed over seven years ago. Not only do I attend her appointments, I also go to see her low vision specialist.

These providers are as familiar with me as they are with Jill. While Jill and I discuss everything we think the doctor should be made aware of, I certainly feel the physician must know how Jill is coping if she does not tell them. With that being said, I would never do this or say anything without discussing the situation with Jill before saying something to the doctor.

Honesty and openness are the best way to proceed with this concern. While Jill does not want to accept that she is struggling more than the previous month, I must give her my honest observation to help her through the rough times.
What options are there to adapt our home so my partner or family member can retain his/her independence?

We have invested in many things to help my wife, Jill, around the house. The first purchase was probably the large-screen computer that offers many features regarding accessibility. We have purchased many, and I do mean many, magnifying glasses. We have every size and every strength. We have bought many lamps to assist Jill with reading. Almost every light in my home is now on a dimmer switch, and many are on timers to help Jill before she needs help.

One critical lesson I have learnt was putting things away where Jill expects them to be. I mustn’t “just throw things in a drawer” as I had done before. We have become a much more organised home, which is important for Jill’s well-being and sanity.

Discover more

Meet Jess

Finding the right mental health support to help her feel more positive about the future

Your Questions Answered

Find answers to your questions from the Visionaries on living, and supporting others, with low vision.

Whether you, a family member or friend has recently been diagnosed or you’ve been impacted by low vision for some time, you’re not alone. There are many people who’ve gone through situations like yours.

Your Questions Answered is a community based forum, providing people living with low vision and their supporters with knowledge and advice based on real, lived experiences.

Our Visionaries have provided their responses to commonly asked questions from the community, to help you in your everyday.

Search for common questions using the categories below.

The first signs of low vision

Jill

Caryl

Caryl

Diagnosis

The fear of a potential diagnosis can delay finding out what is the route of the low vision and delay taking steps to manage it.

Caryl

Jill

Jill

Treatment and care

The thought of making decisions about treatments and managing low vision can feel overwhelming. It is good to speak with your doctor about your options and can be helpful hearing from others also living with low vision.

Caryl

Living with a condition

When it comes to adapting the everyday tasks to suit your unique needs, it can feel like losing independence. Listening to yourself and making small changes can empower you to keep enjoying the things you love each day.

Jill

Caryl

Supporting someone living with low vision

Witnessing a loved one experience and come to terms with low vision can be emotional and worrying. Being there for each other through this journey and knowing there are others experiencing similar experiences can offer some comfort.

Discover more

More answers to your questions coming soon…

Ask your question to The Visionaries

This page will be updated regularly. If there is information you would like to see, use the box below to share your question with The Visionaries team.

The Visionaries will do their best to answer your question in due course. They are very happy to answer your questions around life with low vision, excluding any medical or treatment-related questions.