The gift of understanding

By Leslie Campbell, September 2013

A case of the cure being worse than the disease.

Many of my peers are helping their elders cope with the trials of aging these days. We understand that there’s only so much we can do—decline just keeps coming. So we strive to make the best of the changing scene and pray for support and comfort along the way. Peace, love and understanding too!

Over the summer, my family had some experiences that brought this home. It started in July when my mom Jade landed in Royal Jubilee Hospital with an infection that exaggerated all her other issues. Hospitalized for the ensuing six weeks, Jade, as well as my sisters and I, were all thoroughly impressed by the diligent, kind care she received.

Jade is home now—and very happy about it—under VIHA’s Home First program, for which I am thanking our lucky stars. Launched last spring by the Ministry of Health as a way to keep people out of more expensive care, it allows people with “complex” needs a stepping stone out of hospital. In Jade’s case that means a temporary live-in caregiver and visiting physiotherapist. This is a huge help in evaluating what she needs going forward, while she continues to gain strength simply by being home sweet home. 

While she was in hospital, we received another gift, though at first it seemed like bad news. A neurologist who was consulted helped us further understand my mom’s underlying condition, which was diagnosed two years ago. Called normal pressure hydrocephalus, it’s a neurological condition sometimes mistaken for Parkinsons. It mostly affects her gait and balance; the messages to lift her leg to take a step have difficulty getting through. It also messes with her memory and continence. Some people with this condition get relief from such symptoms from a shunt into the brain, but tests convinced the neurologist that it wouldn’t help my mom’s condition.

That was a downer. 

However, in explaining why the shunt wouldn’t work, the specialist also helped us understand why she has this disease, and for some reason that was helpful to us all. 

The story is one for your “cautionary tales” file. It begins in 1932, when my mom was a four-year-old in Hamilton, Ontario, and developed a case of ringworm on her scalp (ringworm is an infection caused by a fungus now normally treated by over-the-counter creams). Her mother took her to a physician who had embraced a new technology —the X-ray. He decided his X-ray machine was just the thing to blast Mom’s ringworm into history. (He wasn’t alone; it’s estimated that 200,000 children worldwide were irradiated for ringworm.) 

Over the ensuing months, my mother’s hair fell out. Naturally, my grandmother was horrified and heartsick. While her memory is challenged in other ways, Jade can still picture her mom pinning the bits of hair she did have over the expanding bald patches until her head became a mass of bobby pins and other children were making fun of her. She also recalls being dragged by her mother all around town to “charlatans” who claimed to be able to cure baldness with ointments and potions. Nothing worked. Wigs for a four-year-old child of a working-class family in Hamilton were not easy to come by, but eventually, totally bald, she had to wear one (and has ever since).

Fast forward to a few weeks ago. Dr Henri-Bhargava told us that he believes the increasing damage in her brain, which he could see through MRIs done in 2003 and 2013, is due to that 1932 radiation for ringworm. He termed her condition “delayed post-radiation leukoencephalopathy.” He said he’d seen cases of a 30-year lapse before noticeable symptoms from brain radiation, but never anything so long as my mom’s “delayed” problems.

My family feels fortunate that a good 70 or so years elapsed before Jade’s childhood radiation caused her obvious difficulties. We understand now why she has been so prone to falling in the past decade, despite many balance, physio and rehab programs, not to mention her own determination to stay upright.

The understanding—making the connection between her 1932 “treatment” and her health challenges—brings some peace. Jade has accepted her fate (though she often states she’d like to skip to the end). And my family, with the supports offered by VIHA, are finding comfort.

Doctors, of course, now know that radiation of people’s heads—particularly those of children, even when they have serious brain tumours—must be weighed carefully against the very real risk of radiation damage. But Jade’s story makes me wonder if there are contemporary parallels to the practice of irradiating ringworm. We are certainly a civilization that loves new technologies and quick fixes. What are we exposing our children to—or our adult selves for that matter—that will come back to haunt us decades from now?

 

This month we are bringing you an EXPANDED EDITION and a host of interesting stories, including those by award-winning journalists Stephen Andrew, Rob Wipond, and Katherine Palmer Gordon. 

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Award-winning Vancouver Sun journalist Daphne Bramham, in a facebook post, sums up the situation for local journalism well: “What we need to retain readers/followers/viewers/listeners are great stories told well. And what I’ve found is that getting those great stories close to home is often harder than the international ones…At the end of the day, journalism…is about digging around, reading boring reports, doing FOIs, having good contacts, working hard and fearlessly taking on the status quo. Doing that close to home often makes you unpopular with the powers that be. But as Sean [Holman] notes, if we don’t create that kind of interest within communities, it inevitably results in declines in voter engagement.” 

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