Living with Tourette's reveals the difficulties of daily life with the syndromeby Fiona Rae
The challenge of living with Tourette’s syndrome is illuminated in a new documentary series on Prime TV.
It’s a follow-on from last year’s Camp Twitch (still available at TVNZ OnDemand), which featured attendees at the annual camp near Christchurch. The people in this new series are also looking forward to Camp Twitch, a place where vocal and physical tics are not out of the ordinary. It’s a few days’ respite from the many challenges of daily life – and that is the revelation of the series. Just how effing hard it is to live with Tourette’s. Pardon our French.
“It wears you down,” says Adam, who lives in Tauranga. There is no controlling his physical spasms, which can make even a simple task such as putting on his glasses difficult. From the outside, it looks as if he is being subjected to random electric shocks.
William, from Auckland, is equally succinct: “It’s really unenjoyable.” His tics are more alarming than Adam’s, because he hits himself and things around him. It is painful, but trying to suppress it can make it worse.
In Nelson, solo mother Renee also has the vocal tics usually associated with Tourette’s – even though, as the programme tells us, only 20% of sufferers have this trait.
Life is tough for Renee, and her grandmother, Sandy, comes up from Westport to help.
“When she’s fine, she can do most things,” says Sandy, “but when she’s stressed, it gets worse. It hurts me to think that we haven’t got a quick fix for her.”
There are ill-informed members of the public who think they do have a fix. “I had a very well-meaning gentleman offer to give Analise an exorcism,” says Robyn Twemlow of her daughter. “I’ve had people tell me Tourette’s syndrome is caused by a parasite in the brain, so if we just shock her brain, the parasite will die.”
Twemlow, the organiser of Camp Twitch, has heard it all. The worst is people who think the children are just naughty.
No cause has been discovered for Tourette’s. There is no cure or even a specific medication to treat the disease; doctors can only prescribe anti-anxiety and anti-psychotics.
“A lot of medication I took stuffed me up while I was on it,” says Adam.
However, he has found some relief with medicinal cannabis product Sativex, which calms him down. “It just means I can enjoy the simple things in life, like going for a walk.”
This article was first published in the July 14, 2018 issue of the New Zealand Listener.
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