This summer my mother was diagnosed with macular degeneration. There is no cure. It is irreversible. It simply progresses. Science has some hope for future cures, and has some treatments to slow the progress, but a cure likely won’t come soon enough for her.
At 93, one expects that the body will fail, that organs and parts won’t work as well, will lose efficiency, will fail. But this is particularly tough on her. It was clear during our visit today that this diagnosis troubles her.
My parents were both voracious readers, and they passed along a love for books, reading and learning to me from an early age. Reading mattered, reading was important in our family. They shared that with me, it was part of our family DNA.
My father passed away eight years ago and my mother, in her nursing home, still reads every day. She reads for entertainment, for company, for relaxation, for amusement, and for learning. Or rather, she did, until this summer when the problem manifest itself and her reading was curtailed.
Now she struggles to read. She has to use a bright lamp over the book, and has taken to large-print books to still be able to read. But it’s a temporary solution as the AMD spreads inexorably.
She does crossword puzzles too, to keep her mind sharp. They’re harder to do now, because she can’t see the page as clearly. AMD affects the centre of the retina, spreading outwards.
She can see her TV screen if she sits up close, but the laptop screen is that small amount too distant, and besides, she can’t make out the keyboard very clearly. It was hard enough trying to peck out email messages with one hand. Now the computer sits unused.
Losing her ability to read easily is a blow to someone who has lived a tough life, suffering medical problems that have left her wheelchair-bound for the last decade. She certainly didn’t need any more complications.
Yet, despite all her trials and tribulations, her mind is still as sharp as a tack and her memory is remarkable – better than mine. She can recall details of her life, of her childhood right up to recent events, with astounding clarity. I envy that.
Wikipedia tells us,
Age-related macular degeneration (AMD) is a medical condition which usually affects older adults and results in a loss of vision in the center of the visual field (the macula) because of damage to the retina. It occurs in “dry” and “wet” forms. It is a major cause of blindness and visual impairment in older adults (>50 years). Macular degeneration can make it difficult or impossible to read or recognize faces, although enough peripheral vision remains to allow other activities of daily life.
Starting from the inside of the eye and going towards the outer surface, the three main layers at the back of the eye are the retina, which is light-sensitive tissue that is considered part of the central nervous system and is actually brain tissue; the choroid, which contains the blood supply; and the sclera, which is the white, outer, layer of the eye.
The CNIB calls AMD the “leading cause of blindness and vision loss in Canada” and says on their website:
The cause of AMD is unknown, but smoking, a family history of AMD, female gender, advanced age, and lighter skin colour are all considered significant risk factors.
She was never a smoker, that I know of. I suspect age is the main factor. Her father – who lived almost to his 93rd birthday – also had failing eyesight in his final years. Can I look forward to it in mine? Is it genetically connected?
Probably. Statistics show 78,000 new cases of age-related macular degeneration (AMD) are diagnosed in Canada every year, and that number is expected to triple over the next 25 years. In 25 years, I will be… an old man, up there in the same decade as my grandfather was, and my mother is when they started having sight problems.
There are some helpful treatments that may slow down or halt AMD’s progress (the wet kind, anyway). The CNIB lists a few, but most are not covered by our Canadian health insurance. There is no cure, though – you cannot reverse the damage once it starts.
The most common treatment for wet-AMD is Lucentis (ranibizumab), an intra-ocular medication that is injected into the eye to slow the progress of the disease.
Personally, I’d be leery of having needles stuck in my eyes.**
When I was riding my motorcycles, I annually attended the Ride For Sight, a rally to raise money to fight macular degeneration (by raising money for research). I accumulated 14 year-pins, and was even chair of the local host committee when the ride was held here in the region. I never thought at that time that it would hit so close to home.
My own eyes are no great shakes, and I’ve worn glasses since the age of four. My poor eyesight makes some things more difficult – sports, for example, because I lack the sense of depth that helps people catch balls or stop pucks. But I’ve always been able to read. And, like my parents did, and my mother still does, I read every day. The last hour or two of every day I lie in bed and read books, a habit I’ve had since long before I can remember.
I can’t imagine how I would cope if I lost my eyesight. Reading is a passion and a pleasure that I depend on. I could more easily lose my sense of taste or smell – which deteriorate as we age anyway.* My hearing is not what it was in my youth and will worsen, too. But my eyesight is precious.
What would I do at night if I could not pick a book from my shelf and settle in for an hour? What if I could not curl up with Dante, Shakespeare or Chaucer? That scares me enough to keep me awake after the lights have gone out.
The CNIB website suggests what we can do to help prevent AMD:
Can I prevent AMD?
You cannot prevent AMD,but, by making some changes in your diet and lifestyle you can minimize your risk of developing AMD. To help minimize your risk:
- stay smoke-free.
- wear sunglasses with at least 99 per cent UV protection.
- eat lots of dark green, leafy vegetables.
- decrease your consumption of processed and packaged foods.
- eat extra omega-3 fatty acids (found in fish and flaxseed oil).
- keep your blood pressure under control.
People over the age of 50 are especially encouraged to see an eye doctor for comprehensive eye exams regularly to ensure optimal vision health.
Fortunately for me, I don’t smoke, I eat lots of veggies (and I don’t eat red meat), I take an omega-3 capsule daily and my blood pressure is good, despite being in local politics. Perhaps I might dodge this bullet.
My mother, however, can’t. She has learned to cope, to shoulder burdens and carry on; the result of decades of dealing with hardships. She doesn’t say much about it, doesn’t complain loudly or rail against the unfairness of it all, but I know it bothers her. I suspect I would raise my fists and scream at the heavens, were I her. But she is stronger than that.
And I envy that strength. She is the strongest person I know. I probably would have collapsed under the burdens she has suffered.
I think what may trouble her more even that not being able to read, is that she may one day lose her ability to see her family – especially her grandchildren and great-grandchildren. She loves to see them, loves their visits. She brightens up every time she opens a photo album to show them off to us (and delights in showing me my own grandchildren).
I think not being able to see their faces, to see them grow up, to see their smiles, would deeply hurt her. I can only hope we can find some way to slow the progress down so she never has to suffer that.
* Millions of smokers – I am not one – daily inflict a handicap on their own senses, deliberately numbing their ability to taste, to smell, and to think (smoking reduces oxygen to the brain). I can’t imagine why anyone would abuse themselves like that, wound themselves deliberately, but they do.
** I’m not bothered by vaccinations or needles in general, but having them in my eyes makes me shudder. I’d almost prefer reading a vituperative local blog than have needles stuck in my eyes. Almost…