these magazines—and never read a single word. No distraction works when you’re waiting to discover your fate. Not really.
When mum was first diagnosed I did what Andy did and looked Huntington’s up online. I’d never heard of it before, so I was amazed at how many sites there were offering information and advice.
Essentially, I gathered, Huntington’s is a genetic mutation that causes a progressive degeneration of your brain cells—something along the lines of the physical effects of Parkinson’s plus the mental deterioration of Alzheimer’s—slowly stripping you of your ability to walk, talk and reason. Most people develop symptoms between the ages of thirty and forty-five, but there’re also juvenile and late-onset forms. Mum had the latter.
I was surprised to read that there are currently about 6,700 reported cases in England and Wales, and around 30,000 in the United States, though most of the websites I looked at seemed to think that there are probably twice as many cases as the “official” numbers reported, because people often hide the condition due to stigma, insurance or family issues, or just decide not to be tested. Once the symptoms start it usually takes ten to twenty years to kill you—although the suicide rate is scarily high—and children of parents with HD have a fifty-percent chance of inheriting it. Oh, and there’s no cure.
Basically, it’s the worst thing I could possibly have imagined.
The more I read, the more surreal it felt—the discovery of the disease, its progression … None of this could really be happening to my mum, could it? But when I got to the symptoms, several seemed to jump out at me: involuntary movements (chorea), slurred speech, mood swings, outbursts of anger, difficulty multitasking, forgetfulness, clumsiness, slow reactions, weight loss, depression, paranoia … Suddenly the last few years seemed littered with signs, each screaming out at me that there was something wrong.
But they’d all seemed so trivial, so unimportant at the time. Mum had always been flighty, forgetful, easily flustered—she couldn’t cope if I changed my plans at the last minute or asked her to do several things at once, like test me on my revision while she cooked dinner or washed laundry. I remember I got so cross with her for dyeing my school shirt pink once, then she’d blamed me—said I’d been distracting her—and we’d had a huge row and I’d stomped up to my room, slamming my door behind me.
But that was normal, wasn’t it? Teenagers are supposed to argue with their mothers, aren’t they? Bex certainly did—she had screaming rows with her mum. Fortunately, my mum always calmed down really quickly—way before me. She’d just get very upset, have a huge outburst, and then it would be over. Friends again. I just thought she was going through the menopause.
But after her diagnosis I suddenly had to reassess every argument, every fight we’d ever had, trying to untangle Mum from the disease, the terrible things I’d said echoing guiltily in my ears.
Even the physical signs, like the chorea, I’d never noticed. I thought nothing of the familiar jingle of bracelets announcing her approach, used to nag at her for fidgeting while watching TV … and even as far back as my childhood, there were little things. Like, Mum was never any good at Snap. Her reactions just weren’t quick enough, and I’d always beat her, hands down. It was one of my favorite games—because I always won.
And now … I look around the waiting room guiltily, wondering who’s affected, what stage they’re at. Half the people in this room will have the disease, statistically.
But not me.
I’d decided months ago that I needed to know, once and for all. I’d had a bad day with Mum, lost my temper, and dropped a bowl of pasta, smashing, to the floor. And then I panicked. I started analyzing everything I did, scouring myself for symptoms. It drove me crazy. So I rang the clinic and
When mum was first diagnosed I did what Andy did and looked Huntington’s up online. I’d never heard of it before, so I was amazed at how many sites there were offering information and advice.
Essentially, I gathered, Huntington’s is a genetic mutation that causes a progressive degeneration of your brain cells—something along the lines of the physical effects of Parkinson’s plus the mental deterioration of Alzheimer’s—slowly stripping you of your ability to walk, talk and reason. Most people develop symptoms between the ages of thirty and forty-five, but there’re also juvenile and late-onset forms. Mum had the latter.
I was surprised to read that there are currently about 6,700 reported cases in England and Wales, and around 30,000 in the United States, though most of the websites I looked at seemed to think that there are probably twice as many cases as the “official” numbers reported, because people often hide the condition due to stigma, insurance or family issues, or just decide not to be tested. Once the symptoms start it usually takes ten to twenty years to kill you—although the suicide rate is scarily high—and children of parents with HD have a fifty-percent chance of inheriting it. Oh, and there’s no cure.
Basically, it’s the worst thing I could possibly have imagined.
The more I read, the more surreal it felt—the discovery of the disease, its progression … None of this could really be happening to my mum, could it? But when I got to the symptoms, several seemed to jump out at me: involuntary movements (chorea), slurred speech, mood swings, outbursts of anger, difficulty multitasking, forgetfulness, clumsiness, slow reactions, weight loss, depression, paranoia … Suddenly the last few years seemed littered with signs, each screaming out at me that there was something wrong.
But they’d all seemed so trivial, so unimportant at the time. Mum had always been flighty, forgetful, easily flustered—she couldn’t cope if I changed my plans at the last minute or asked her to do several things at once, like test me on my revision while she cooked dinner or washed laundry. I remember I got so cross with her for dyeing my school shirt pink once, then she’d blamed me—said I’d been distracting her—and we’d had a huge row and I’d stomped up to my room, slamming my door behind me.
But that was normal, wasn’t it? Teenagers are supposed to argue with their mothers, aren’t they? Bex certainly did—she had screaming rows with her mum. Fortunately, my mum always calmed down really quickly—way before me. She’d just get very upset, have a huge outburst, and then it would be over. Friends again. I just thought she was going through the menopause.
But after her diagnosis I suddenly had to reassess every argument, every fight we’d ever had, trying to untangle Mum from the disease, the terrible things I’d said echoing guiltily in my ears.
Even the physical signs, like the chorea, I’d never noticed. I thought nothing of the familiar jingle of bracelets announcing her approach, used to nag at her for fidgeting while watching TV … and even as far back as my childhood, there were little things. Like, Mum was never any good at Snap. Her reactions just weren’t quick enough, and I’d always beat her, hands down. It was one of my favorite games—because I always won.
And now … I look around the waiting room guiltily, wondering who’s affected, what stage they’re at. Half the people in this room will have the disease, statistically.
But not me.
I’d decided months ago that I needed to know, once and for all. I’d had a bad day with Mum, lost my temper, and dropped a bowl of pasta, smashing, to the floor. And then I panicked. I started analyzing everything I did, scouring myself for symptoms. It drove me crazy. So I rang the clinic and
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