Finding the right ophthalmologist – one who was willing to take time to explain wet macular degeneration and treatment options and who is backed by friendly clinical support staff – has been one of the most important weapons in Helen Siemering’s fight to save her sight.
As well, Helen, 78, said she ensures that compliance with her treatment regime is an “absolute priority… and I could challenge Popeye with eating my greens”.
The strategy is reaping benefits, with Helen’s wet macular degeneration under control 13 years after first being diagnosed in both eyes. After years of regular injections, Helen is still receiving treatments in her left eye while her right is currently stable and being monitored closely.
From day one, Helen’s ophthalmologist, in the inner Melbourne suburb of Fitzroy, was “always very helpful”.
“He has been remarkably supportive of me; helping me to understand what was going on. He really takes the time to explain things to me. It is extremely important to find someone you are comfortable with.”
Helen is also full of praise for the “welcoming, friendly, absolutely delightful” clinical support staff who manage her injection regime. “They do make me feel at ease,” she said.
The hereditary nature of macular degeneration is clearly evident in Helen’s family. “Even though there wasn’t a name put to it, my mother and her sister were officially clinically blind.
When her older sister was diagnosed with wet macular degeneration in 2005, Helen immediately booked in to see a specialist.
“When I was first diagnosed, my husband was with me, and that was enormously helpful, but I immediately thought of my mother.
“I remembered how super she was. She was clinically blind for eight years before she died. She would bath and dress herself. My dad was with her and that was helpful – he had to put the kettle on for her and things like that – but it was absolutely remarkable how she managed. And her attitude – she was never depressed about it. That was an inspiration for me, yes.”
While her sight is still good, Helen does use a magnifier to read the newspaper and plans to thoroughly investigate other low vision aids.
“It is one of those things – I must look into low vision aids and address that before it is time to use them,” she says, noting her sister is currently using a keyboard with large, bright yellow keys and has activated accessibility options on her phone.
“I am enormously grateful for the vision I have. I can still drive – I don’t drive in the rain and not at night and not long distances – but I drive locally. I am so grateful for that, I’m enormously fortunate. I can read, and I can watch TV. I am having a little bit of trouble with text from books. That’s something else that makes me more aware that I have to look towards the aids that are available.”
Helen said she most notices her vision changing when she watches her grandchildren play sport, something she clearly gets enormous enjoyment from.
“Three of my grandchildren play AFL – and I really enjoy watching them play – but it is becoming a bit of a hoot because I can’t see the other side of the field. I love going with my friend to the ground to watch them play, and we laugh as we are trying to spot the numbers (on the children’s jumpers) on the far side of the ground.
“One son plays cricket – and that’s even harder to spot the ball! I spend the first 10 or 15 minutes trying to find out whether his team is batting or bowling,” she laughs.
“It is quite a challenge, but they are very minor disabilities – I can’t get too concerned about that.”
Helen still gathers as much information as she can about macular degeneration and is particularly keen on staying up to date with new research.
“I enjoy the information in the (Macular Disease Foundation Australia) newsletter. It is very informative and I just love the research bit – that is just so relevant.
“I’m always looking for research. One of my sons is a research scientist (in genetics) so he sends research on to me. We are well aware of the genetic factor so I’m always looking for research updates, brought about by my concern for the next generation in my family.
“I’m also enormously grateful to the volunteers – people like Ita Buttrose. (Ita Buttrose AO OBE has been Patron of Macular Disease Foundation Australia since 2005 and works tirelessly to promote the cause of macular degeneration across Australia.)
To anyone just diagnosed with macular disease, Helen’s advice would be simple: “You need to get as much information as you can; to read and comprehend as much information as you can… just don’t be daunted by it.”