Living with Tourette's reveals the difficulties of daily life with the syndrome

by Fiona Rae / 14 July, 2018
Living with Tourette’s.

Living with Tourette’s.

RelatedArticlesModule - Living with Tourettes tv

The challenge of living with Tourette’s syndrome is illuminated in a new documentary series on Prime TV. 

A whole new world opens up in Living with Tourette’s (Prime, Sunday, 8.30pm), a six-part documentary series about some New Zealanders whose lives are more challenging than most.

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.

Latest

Kiwi film Stray shows an ambition that is often lacking in NZ cinema
97738 2018-10-15 15:01:54Z Movies

Kiwi film Stray shows an ambition that is often la…

by James Robins

It doesn’t say much, but there is something hypnotic in Dustin Feneley’s crowdfunded debut feature Stray.

Read more
Simon Bridges amended electoral donation return, insider claims
97734 2018-10-15 13:26:57Z Politics

Simon Bridges amended electoral donation return, i…

by Jo Moir

A National Party insider has told RNZ that Simon Bridges amended his personal electoral donation return to remove two donations totalling $24,000.

Read more
Simon Bridges points to Jami-Lee Ross as the National Party leaker
97732 2018-10-15 13:13:30Z Politics

Simon Bridges points to Jami-Lee Ross as the Natio…

by RNZ

The MP is denying he was responsible.

Read more
New Zealand finally gets its own version of The Great British Bake Off
97514 2018-10-15 00:00:00Z Television

New Zealand finally gets its own version of The Gr…

by Russell Brown

In a reality-television landscape riven with cruelty, the popular Bake Off competition is actually nice to people.

Read more
Big bang theory: The annual torment that is Guy Fawkes
97356 2018-10-15 00:00:00Z Life in NZ

Big bang theory: The annual torment that is Guy Fa…

by Mike White

Guy Fawkes might only come around once a year, but the sale of fireworks means noisy nights for weeks after November 5.

Read more
New claims of war crimes and sex assaults inside the NZ Defence Force
97663 2018-10-14 00:00:00Z Social issues

New claims of war crimes and sex assaults inside t…

by North & South

Investigative journalist Nicky Hager reveals a culture of impunity and cover-ups within the New Zealand Defence Force.

Read more
The good and bad news about Brett Kavanaugh’s Supreme Court appointment
97633 2018-10-14 00:00:00Z World

The good and bad news about Brett Kavanaugh’s Supr…

by Paul Thomas

The US is more divided than ever with the appointment of Brett Kavanaugh. The mid-term elections loom as the next round of bipartisan warfare.

Read more
Putin's treatment of his critics is causing problems for Russians in the UK
97672 2018-10-14 00:00:00Z World

Putin's treatment of his critics is causing proble…

by Andrew Anthony

Like Boris Berezovsky and Alexander Litvinenko, many opponents of Vladimir Putin have died in strange circumstances in Britain.

Read more