Adam and Givealittle

Tourette’s Association member Adam Belcher is one of the worst-affected by tics in New Zealand. His tics are debilitating and disabling, impacting on every aspect of his everyday life. He is unable to work and even being able to walk across a room is a dangerous exercise.

However last year Adam was given a lifeline when he was the first-ever applicant to have a prescription for Sativex (medicinal cannabis spray) approved for Tourette Syndrome by the Minister of Health. His first time using the spray was incredible – his tics disappeared, amazing not only himself but family, friends and even his doctor and neurologist.

The only problem is that each prescription costs $1,100.

So far Adam has paid for his prescriptions on his credit card but he can no longer afford to do so. He dreads having to return to the life he had pre-Sativex, saying he doesn’t know how he ever made it through the day.

Adam’s mum has set up a givealittle page in the hope of being able to fund at least one more prescription for him. He and his doctor are investigating all avenues to have his prescription but so far he has been turned down by Pharmac and his local DHB. If you can help please visit www.givealittle.co.nz/cause/help4tics

Robyn Martinovich

MEMBER PROFILE 

Robyn Martinovich

Name: Robyn Martinovich
Lives in: Dargaville, Northland
Occupation: I work in a drug and alcohol detox unit
Connection to TS: My 17-year old daughter Taylor was diagnosed with Tourette’s when she was about eight.
Hardest part of TS journey:   The lack of understanding and support.  When my girl was pleading with me to stop what was happening to her and I was unable to.  Feeling helpless. The late nights crying and wondering why our daughter had been cursed with this condition. Knowing more than the physicians.
Happier TS moments:  When Taylor could get up in front of the whole school and talk about TS.  When she was not ashamed or embarrassed to tell people about it.  Camp twitch and seeing all the happy faces.
Best advice can share:  Oh I have lots!
Relax and roll with it.  The more I fought my emotions the harder it was to deal with.  Take each day as it comes.  Ask for help! Don’t be ashamed of letting people know you aren’t coping. Don’t forget to give yourself time out to recharge.
Five words that describe you:  Determined, passionate, busy, level headed, reliable.

Youth Hui

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With thanks to the Vodafone Foundation the Tourette’s Association is hosting its first Youth Hui in April. The aim of the hui is to hear first-hand from our young people, age 12-25, what changes they would like to see in terms of the treatment, support and services provided to them. The hui is being held in Christchurch on April 9-10. There are still a few places left so if you would like more information with the view to attend please contact the office before February 29th info@tourettes.org.nz

 

Camp Twitch 2016

Our first Camp Twitch in 2014 was one of the most amazing experiences ever said those who attended. It was the first time that many of the families had met someone else with Tourette’s and the opportunity to share stories and experiences, and to make new friends, was a highlight.

This year Camp Twitch is being in Rotorua over October 4 to 7th at the Keswick Christian Camp. The camp is catered and it offers plenty of on-site activities. We hope this year that we can again all do an adventure activity like quad biking or monster trucks. And this time it would be awesome to see more than one person do the bungy jump!

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Registration for Camp Twitch is open now to all registered members of the Tourette’s Association. For more information and a registration form please email the office info@tourettes.org.nz

StarJam

Does your child like to sing, dance or even play an instrument? Even if they have never had lessons in any of these they would love StarJam. Through music and performance workshops, StarJam provides opportunities for young people with a disability to explore new talents, gain new skills and build confidence to try new things. For many StarJam is a life-transforming experience.

StarJam workshops are offered in many cities and towns around New Zealand and cost is by donation when you attend. For more information or to find a workshop near you please visit www.starjam.org

Penpals

We have young people in France and the UK who would love to write to kids with TS in New Zealand. If you have always wanted to have a friend to write to overseas and love receiving letters in the mail then please contact the office and we will find someone similar in age for you to contact with. Email info@tourettes.org.nz

Winners for December

Congratulations

Shelley Lawrence who won Brother Label Maker Member’s prize .
Thank you to Solutions NZ who kindly donated a Brother P-touch H105.

And Eva Martinovich who won the Stampin’ Up kit as part of the Friend of TANZ membership.
Thank you to Stampin’ Up who kindly donated a Stampin’ Up kit.

 

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News in brief

A big thank you goes out to the Variety Club NZ, Sky TV and NZME for hosting the annual Special Children’s Christmas Parties throughout November and December. A number of our families attended the parties that were held in Christchurch, Wellington, Auckland and Hamilton and all said they had a great time and that they were spoilt all day long.

On November 26 the founder of the Tourette’s Association New Zealand, Robyn Twemlow, received a Local Hero medal as part of the Kiwibank New Zealander of the Year awards.

Thank you also goes out to Sam Skelton and Mel Cox for organizing the end-of-year events for Auckland and Christchurch members respectively. Auckland families met as Paraki Springs for to splash around in their

Christchurch Christmas party

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More than 40 people attended the Christchurch Christmas bbq held in Leeston on November 29th; The Turner family getting stuck into the Fear Factor challenge; the quad bikes proved a massive hit; toilet paper is a surprisingly good windbreak when you are covered head to foot; the homemade sausages went down a treat.

Toilet paper, spiders and slurping jelly through a straw aren’t usually on the Christmas party events list but then again it was a TANZ-organised Christmas party so normal goes out the window.

Our Christchurch family bbq was a fantastic day out – complete with a scavenger hunt (hence the spider), a game of wrap the mummies (toilet paper) and a family fear factor challenge (jelly). Adding to the fun were pony rides, quad bike riding and a spin around the paddock on a four-wheel buggy. Needless to say the kids had a great time and the parents enjoyed having the time to sit and chat.

Many thanks goes out to Chris and Aleisha Seller who organized for the event to be held on the Benny family farm, the rides and the homemade sausages and salad.

A shout-out must also be made to Chad Romano from Romano Building for providing the buggy; Dayle and Maddie Bennie for the sausages and mini-quad bike as well as Abi from Abi’s Natural Horsemanship for providing the two beautiful horses for farm ride.

The biggest thanks of all goes to Mel Cox and her family for co-ordinating and running the event. You all did an amazing job and we look forward to seeing what you have in store for us next year.

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Tourette Syndrome and Music

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Tourette Syndrome and Music: Discovering peace through rhythm and tone by David Aldridge.

TANZ has been gifted a copy of the latest book written by David Alridge – musician, author and flight instructor living in Los Angeles. It reflects on 50 years of living with TS and channeling his passion into music and flying.

Here David gives a brief overview of his book. If you would like to borrow a copy please contact the TANZ office by email: info@tourettes.org.nz

“As a teenager, I learned how to play the drum set and found it to be an incredibly helpful instrument for releasing the stress from Tourette’s. It also helped me develop better control over my arms and legs, giving me an outlet for the energy. I learned to play other instruments as well (guitar, bass guitar, keyboards), and they too helped in certain specific ways.

I went on to play music in my life, became a freelance magazine writer, and even an airplane flight instructor. I now work and teach over the skies of Los Angeles, California, and have flown over 10,000 hours with eleven years of teaching. I’ve published three books, written a novella, and done a lot to move beyond the everyday challenges of living of living with Tourette’s.

At any age, this is not an easy disorder to live with, but something someone wrote many years ago stuck with me and has helped a lot to think about. The late Dr. Oliver Sacks wrote the foreword to a book of short stories about people with Tourette’s called Don’t Think About Monkeys (Hope Press, 1992). He liked my story, “Rhythm Man,” where I talked about how drumming had helped me most of my life (I was 32 at the time).

What he pointed out basically was that I’d taken a disability and turned it into an ability. I believe that all of us with TS have something we can do with this disorder that may not appear so obvious. It may take a while to find it, but it’s there. Mine came in the form of jazz drumming and improvisation, creative writing, and multi-tasking at over 100 miles an hour through the clouds.

Who knows where yours might come from? Maybe sports, the arts, research and the academic world… there’s simply no telling… but it’s in there, in you. All of you.

So please remember, Tourette’s is what you make of it. We aren’t victims, we’re vessels, carrying something a little different than most people have to deal with. Trust me, we are wired for amazing.”