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Personal Stories

 

 
June's Story

 

June was diagnosed with Wet MD over 30 years ago. She had never before heard of MD and didn't recognise the symptoms she was experiencing.
 
"The first time I heard of MD was when the optometrist diagnosed me with it," June says. "Unfortuantely there weren't the treatment options there are today and I lost vision in my right eye permanently."
 
Thanks to regular eye checks with her optometrist and ophthalmologist, June was diagnosed with Wet MD in her left eye before any visual symptoms had occured. This means that treatment was available to help her maintain the best vision possible in her left eye.
 
"I have now had six Lucentis injections and my ophthalmologist is very pleased with my results. I still have trouble reading some of the eye chart but I can read magazines and newspapers with no trouble and only use my strong magnifying glass to read very small print."
 
"My husband says I don't notice dust or dirt on the floor, but I can notice things I couldn't see before, such as the microwave dial. I can even thread large-eyed needles and see lines to write on."
 
June now maintains a healthy lifestyle to slow down the progression of the disease in her left eye.
 
"I eat fresh fruit and vegetables every day, especially spinach, to keep my eyes healthy. I take supplements to help prevent any further damage to my good eye and see my optometrist every three months for a check-up."
 
"I'm so glad I kept up my eye tests. It really has saved my sight."
Frank's Story

 

In 2001, Frank's optometrist diagnosed him with Dry MD. At 66 years of age, it came as a shock to him to learn that he would never regain the central vision in his left eye, and that the vision in his right eye was headed in the same direction.
 
"My vision isn't good," says Frank. "I love to cook but can't read the recipies, let alone labels on the food. I only have the peripheral vision in my left eye, making it difficult for me to see anything - especially now that my right eye has started deteriorating.
 
Frank tried using magnifiers but found that they weren't strong enough for him to make out words and sentences.
 
"The magnifiers didn't work for me. It was almost impossible for me to write something down and then read what I had written, which was so disheartening. I tried to put together a photo album for my grandchildren of their father when he was a boy, but I just couldn't see the photos."
 
Frank is one of many elderly Australians who experienced great diffiulty after being diagnosed with Macular Degeneration and consequently was diagnosed with depression by his doctor.
 
"One thing I have found is that people are very understanding and helpful if they know I have low vision. There is one lass down at the chemist who helps me sign my prescriptions, and the pharmacist explains everything thoroughly. They know I can't see them, so they make up for it by guiding me and giving me help where I need it."
 
"I have also had an Occupational Therapist come to my house to help me adapt to everyday life with low vision. I now use a cane when I head down to the shops, and she has taught me some helpful tips on crossing the road safely and travelling on public transport."
 
"It's hard to think that there must be others out there who are suffering from MD. I want to help to get the message out there that there is nothing more important that having your eyes tested. It might just save your sight."
Carol and Tony's Story

 

Carol and Tony Cane set out to provide a venue for people with MD to come together; specifically, in the first instance to talk and share experiences.

To gauge the interest of the people with MD living in Hobart area, the group started with a meeting in December 2003 with over 30 people attending.

The support group is growing and strengthening, with the core group coming to most of the meetings and many others attending when they are able. The smallest number was 12 (on a cold winters day) and in contrast, nearly 100 to hear Dr. Paul Beaumont in November 2005. There are over a hundred and fifty people with Macular Degeneration on the Support Group mailing list, but many are unable to attend for a variety of reasons; mainly lack of transport, medical appointments and failing health. Some family members do attend regularly as well.

Isolation has been cited as one of the major problems for people with MD; this refers to emotional as well as physical difficulties. Members’ inability to be independent in all the little tasks that we take for granted is a particular concern because this impacts on their relationships as well as their day to day living.
Providing help even in a small way is very rewarding, moral support validates feelings and fears can be alleviated at times.
Reaching out to people with MD living outside the Hobart metropolitan area and those living in hostels and in care is of special interest.

Marion’s Story

 

Marion When Marion (pictured left), visiting from Melbourne, walked through the MD Foundation’s door, little did we realise how important her visit was. In the course of conversation Marion mentioned that she had experienced ‘overnight’ a dramatic change which included dark patches in her central vision. These were clearly symptoms of a ‘bleed’ indicative of wet MD.

The urgency of seeking immediate treatment from an ophthalmologist is critical in these situations. Marion later wrote to us and her following words convey an important message for us all:

“It was an expression of urgency that I sensed in your concern that motivated me to seek out a Retina Specialist on my return to Melbourne. He performed an angiogram which confirmed that I had Neovascular (Wet) MD. He explained that I needed the blood vessel treated immediately. Without the Photodynamic Therapy (Visudyne) I asked what would happen. My specialist promptly replied ‘you will go blind.’ So I agreed to go ahead. Had I waited and not sought treatment immediately, as I was advised to do, one can only imagine the possible extent of scarring and loss of vision. I am now using low vision aids including a CCTV in order to persevere with my Masters Degree through Macquarie University.”

Marion was lucky; she spoke to the right people at the right time, received advice and acted immediately. Marion’s story highlights the need for vigilance in detecting serious visual symptoms needing immediate attention.

 
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