Living With TOURETTE'S SYNDROME (Tennis in General)

Member Name: Multtinems

Product:	Tennis in General
Date:	04/12/04 (1060 review reads)
Rating:

Advantages: Caring & Considerate, Tidy, Artistic

Disadvantages: People's Attitudes, Socially Inacceptable, **** off! lol

My son Chris was born on the 5th December 1985 a healthy 8lb 2oz, he was perfectly healthy apart from inherited Asthma. Grew up a cute loving little boy with the biggest chocolate brown eyes (get away with murder eyes) I have ever seen. It was often said he was too pretty for a boy. As it's his 19th birthday tommorow I thought I'd submit my story of his life.

When he was 3 we noticed one day that he had started to repeat himself. He kept saying "pick that bud". Made no sense to us whatsoever. His Grandad tried to get him to explain but he just grinned mischieviously and said "pick that bud!"

Some years later I took him to our GP as he seemed to be constantly clearing his voice. We wondered if his inhaler was irriating his throat. The GP just said he's one of those kids who does things out of habit. He spent his school life in trouble because of it and various other things he did that annoyed the teachers. Mainly being disruptive in class. Not as you'd imagine though, this was because of his 'habit's'.

Between the years of 5 to 11 Chris just got worse, by now he was Ticcing all the time. We didnt know this was the phrase for it at the time. He would jerk his head sideways, roll his eyes back, grunt, and still clearing his voice constanly. We sort had a Family estate car with rear facing back seat and Chris was ticcing so violently it was distracting his Dad whilst Driving. It was I admit annoying.

One Sunday morning I was preparing lunch when the phone rang. My Mum. She was very hyped up and excited "Sonia I got an article in my paper today (Mail on Sunday) It's Chris.....Oh its so Chris, I'm bringing it over straight away"
She did was at my house within 20 minutes. When I read the 4 page spread on TOURETTE'S SYNDROME in this sunday mag I cried. Every single case discussed had a bit of Chris in them. They described Tic's and mannerisms, troubles at school.

The next day I went to my GP again with the Article and Chris. He said Yes it certainly looked like Chris had Tourette's. He admitted knowing nothing about it and asked if I'd come back Tuesday by then he would know. I did and he did. The Doctor said he needs to go to Great Ormond Street for diagnosis, they could help him there. Our area just didnt have the resources.

At Great Ormond Street Chris was indeed diagnosed with Tourettes. We went on the train and had great fun with the world and his wife giving chris dirty looks. It used to bother him but now if someone's being rude and staring constantly he simply says "Hi I'm Chris, I got Tourette's what's your excuse?" (results of which are hilarious!)

* About Tourettes Syndrome:

What Causes TS?
Research is ongoing, but it is believed that an abnormal metabolism of the neurotransmitters dopamine and serotonin are involved with the disorder. It is genetically transmitted; parents having a 50% chance of passing the gene on to their children. Girls with the gene have a 70% chance of displaying symptoms, boys with the gene have a 99% chance of displaying symptoms.

What is TS?
Named after the French Man Gilles De La Tourette who was first diagnosed with the condition,
Tourette Syndrome (TS) is a neurological disorder characterized by tics -- involuntary, rapid, sudden movements or vocalizations that occur repeatedly in the same way. Diagnostic criteria include:

Both multiple motor and one or more vocal tics present at some time, although not necessarily simultaneously;
The occurrence of tics many times a day (usually in bouts) nearly every day or intermittently throughout the span of more than one year;
Periodic changes in the number, frequency, type and location of the tics, and in the waxing and waning of their severity. Symptoms can sometimes disappear for weeks or months at a time;
Onset before the age of 18.

Some common tics include coughing, throat clearing, sniffing, blinking, shoulder shrugging, arm thrusts, or neck stretching. Some researchers believe that a subtype of OCD (obsessive-compulsive disorder) may be genetically linked to TS. There’s not too much else that has been conclusively shown to be "part of" TS.

Doctors have tried to explain how it must feel to have TS:
Do not allow yourself to touch or scratch any part of your body for the next hour
You eventually have to, don't you?
This is how impossible it is thought to be for TS sufferers to control or stop their noises or twitches
Not easy, is it?
Or another is to supress the urge to blink for as long as you can. Its the same sensation,Chris gets, it just has to be done or else it builds up inside him. He once held off his hoots in class within 10 minutes he let out the most enormous hoot ever and deafened the class much to the amusement of his fellow classmates. He never tried again!


* Web Sites of Interest:

www.tourettenowwhat.tripod.com
www.tsa.org.uk
www.tourettesyndrome.co.uk

These sites are useful and usually provide help groups which are a godsend. As a parent of a child with Tourette's you can feel isolated. Great Ormond Street wanted us to attend their sessions, unfortunately they only did them there in London and it just wasn't practical. We managed without the help of any of these groups as we found they all wanted a fee of some sort.

Another brilliant source of information on TS was the television series Olivers Sachs "Mind Traveller". It was a very in depth program of the brain and all its functions. We used to lend the school our videoed copy of this program so they understood what was going on with Chris.


* Diagnosis

Chris was diagnosed simply by the fact he's had 3 or more of these Tics for the last year. He was given a full neurological examination which took an hour. With lots of lifestyle questions. We were told the condition was hereditary. This suprised us but when we were told it manifests in many forms it wasnt so suprising. Any one who is obsessive with locking the door, unplugging plugs, checking and double checking has a mild form of Tourette's. Theres a lot of people about like this who have no idea.
Chris was given Chlonodine in liquid form to try to supress the ticks. This didn't suit Chris although it made him sleepy it also gave him headaches. So back to GOSH, where he was prescribed Haloperidol also in Liquid form. This was brilliant, didnt work all of the time but he difference in him was unbelievable. We could go weeks when no body would know a thing was wrong with him. As he got older he was given tablet format, which dosage was progressivly increased.


* Copralia

Throughout all of this time Chris had never sworn (Copralia). We were rather proud of that fact. But then when he was 16 and at GCSE time it started. He shouted Fuck a few times. Of course he got chastised by us but then it became apparent he couldn't help it. I remembered watching the TV program in the late 70's (I think) 'The Boy Can't Help It' about a Scottish boy named John with Tourettes. His was an extreme case. Chris managed to disguise it to FUGG. It was still quite obvious what he was saying but not as offensive. Chris used to have to wear a laminated credit card sized ID with his condition and his Hospital Number and Diagnosing Hospital reference just to prove he wasn't lying to people who took exception to his often loud noises or swearing.

* Depression and OCD

Chris was to spend a lot of his teenage years depressed. It was a worrying time. He had 2 deaths of classmates to contend with at 13. He couldnt let it go this is when the Obsessive Compulsive Disorder (OCD) came in. Chris obsesses about most things, its within his nature. He worries a lot that he needs to do things or things need to be right. He had to see Psychologists. Who to be honest didn't help, made him feel lower than ever. His worst point was at 17, He was out of work no college (he'd pulled out in the third week unable to handle the teasing) I was so concerned he was going to committ suicide I wouldnt let him out alone. But something in him changed after this time.......

** I was just reminded of an incident which happened involving Chris....this was before the swearing days. He was on a bus with me he'd have been about 15 at the time. An elderly Lady was having a real problem with Chris' hooting noises (he was having a spell of hooting, snorting like a pig was another) She really didn't like it and kept giving him the filthiest looks. After a short while at a stop she got up, we assumed she was getting off but no she went to the driver and asked for "That unruly child to please be removed from the bus!" in a very loud voice. Unbeknown to her we knew the Driver, Keith, who calmly said;
"Look love its you with the problem, Why don't you get off?"
Chris started to applaud, the next thing we knew half the bus was applauding and yep you guessed it she DID get off. It was very embarassing but also a great comfort to know there are kind and caring people out there.**
Unfortunately these incidences are far to common in Chris' life. Mainly he'll ignore it but the more he's stared at the more stressed he gets. The more stressed he gets the worse the tic's get. Its a vicious circle .... one that never seems to end. Understandably Chris avoids public transport where at all possible. He pushbikes most places.


* Present Day:

Chris is 19 in December. He has his own flat. Full time College on a Caring Course. Part time worker at MacDonalds. Still Tic's away to his hearts content but once more thanks to Medication some days are better than other's. I often wonder if it hadn't been for my Mum and that article how much longer we'd have carried on in the way we were. He still has his moments only this week he's had problems with a manger at work who doesnt seem to grasp the fact Chris just can't help it. He's off work for a fortnight as he's just back at college and is findng it difficult to cope witht he hassles of part time work and college. He feels college is more important at the moment.
He has grown up a concientious young man, loyal friend, a good kid. I am very proud of the way he has turned his life around, determined not to let Tourette's run his life. If by his third decade he hasnt grown out of it, it will be with him for life. Some how I think my Boy can handle that.............

We love him as he is

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