Your Questions Answered

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 care professional 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 care professional
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 care professional before, I suggest booking an appointment at a local practice without delay. The eye care professional will then examine you and if needed, refer you to an eye specialist for additional tests.

Caryl

In my experience, I did not notice a vast change in my sight. I wear glasses as I am short-sighted and so I visited my optometrist regularly for check-ups. 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.

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.

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.

Jill

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.

Joe

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 scarred beyond repair. Time was essential to Jill’s current status, and waiting would have been seriously detrimental.

Joe

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.

Joe

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.

Jill

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.

Joe

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.

Joe

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.