> 1. How old were you when you were first diagnosed with T.S. and (if you don’t mind revealing your age) what year was that?
A, I started with minor Vocal, and minor Tic’s aged 46 yrs, in march 2009,and by Aug 2009,i had full blown severe Tourette’s, then had my diagnosis Oct 2009
> 2. What ‘treatments’ were offered/proscribed to you?
A, There is no Tourette’s specific drugs ,and its hit and miss finding a medication, so they tend to prescribe
antipsychotics ,epileptic, or Parkinson’s medications for us, which are not designed ,and don’t work for everyone and have some nasty unwanted side affects
> 3. What was it like growing up with T.S.? (Your earliest memory of T.S)
A, Even though I didn’t get a diagnosis till 46yrs, I now know I have had TS all my life, and displayed traits of TS ,but it’s a few years ago, and my behavior was classed as disruptive.
> 4. Was bullying an issue?
A, Yes bullying was a big issue, at one point it became an everyday occurrence, anything from being pushed over, to a slap or kick, to full-on being beat by one or a gang of kids, and it made my life a misery, I could take the beating, but what I found most upsetting, was I didn’t understand why they didn’t like me, or what I had done to deserve this treatment?
> 5. How did your peers behave around you/did you get treated ‘differently by others?
A,I never fit in, and was always around but never involved, I had the chance to meet up with one of the bullies at a later stage in my life ,whilst work as a doorman ,in a nightclub ,and he apologized for the way they treat me, and his reason why??? I was different and they didn’t get me,,, lol now that’s a good reason if ever I’ve heard one, to give a kicking
not!
> 6. Tell the readers about your fundraising and efforts to highlight the subject/issue of T.S.
A, After TS kicked in I lost my confidence, I couldn’t go out, with losing control to this monster Tourette’s Syndrome, I would shout out arms and legs flailing falling over dislocating my leg on three occasions, then I contacted Tourette’s Scotland, and the help they gave me building my confidence ,helping me to accept the condition, introducing me to others, Like John and Chopper off the BBC program, well it changed my life, and from that point on I knew what I wanted to do raise awareness, and much needed funds for Tourette’s Scotland, so up to now after a marathon two day kayak down the swollen river tweed, we raised over £5,ooo which has helped set up three family support group helping children adults and their family supporters, our first meeting was fantastic and attended by 50 folk mixed adults and child, and it was the first time experience of meeting someone else with TS for some of these kids
> 7. What do you think could be done ‘better’ today – than from, say, 15 years ago?
A, the main focus now is to educate the educators, as we find that, children are still experiencing the same difficulties as I did as a child, not all teachers, but some are still treating Tourette’s as a behavioral disorder, so they are being excluded, detention, now we take on board how difficult a teachers job is now a days and how having to deal with class sizes, so Tourette’s Scotland have devised a educational pack so we can go into school and inform and educate, with techniques on how best to teach children with TS,
> 8. How is Tourette’s linked to Autism? What I mean is – can you explain T.S. to me as if I had NEVER heard of it?
A,well it comes under the autistic spectrum, it’s a neurological condition, not psychological, or a mental illness, and contrary to popular belief TS is not the swearing illness, there are a very very rare that anyone with TS will have Coprolalia which is the name for the inappropriate vocal tic’s, sad to say I am one TS sufferer that as this unpleasant ,sometimes funny, but not easy to live with Tic’, different tic’s Motor tics can also be classified according to speed of movement.
Those that are brief, sudden, and jerk like are known as Clonic tics (e.g., blinking, facial twitching). Motor tics that involve brief twisting or posturing are called Dystonic tics… (e.g., torticollis, blepharospasm), whereas those that involve sustained or prolonged movements or contraction of muscles are labeled tonic tics (e.g., prolonged bending of the trunk or tensing of the abdomen).
I also have all these very painful and I find very embarrassing, when I’m in public as they draw attention, and a lot more problems to boot which are not easy to explain, in layman’s terms.
> 9. What are your future plans to highlight ‘Tourette’s'?
A,well I plan to make a video for you tube with a slide show of pictures I have taken, with music and text listing facts about TS, so I can link to via media like facebook and good old twitter etc ,and I am a trustee of Tourette’s Scotland they are absolutely brilliant and get out there by going in to schools colleges ,and health care professionals, and education and raising awareness about TS, and hopefully this year we can have the kayak event like last year to raise much needed funds for Tourette’s Scotland charity
> 10. Where did you get your Nickname? Lol.
A, my nick name Fleece, as nothing to do with living in the country or that right in the field, behind my house we have lots of sheep, it was the name of our electric blanket
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