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Friday, 24 June 2011

we seek them here, we seek them there...

A week of looking for help. Biggest quest is why there is no decent coverage of neurologists or practitioners who have an interest in, or even (dare I say it.... but this is my blog, and not reflective of the views of all in Tourette Scotland) even dont know as much about TS as they might. I see a difference that is made to the quality of life for our members when they DO meet up with a practitioner who is knowledgeable of the wider ranging elements of the condition, in that they get a far quicker, better and more appropriate set of management treatments. In my view.....some of the past writings and research did not include Sensory Processing, or Invisible or Internal tics. The Invisible ones... obsessive thoughts, compulsions, rage attacks, fears, phobias - really horrible for the person to endure, and often dismissed as something 'other'. So my quest.... find those practitioners, and have them in our camp.

The week has also brought a flurry of visits to schools and hospital to buoy up our members who have reviews or need to convey information about TS to the people who matter. Transitions, and new classes, needed to placate and set in place procedures for youngsters next year, so they can enjoy their summer.

So, my week: its incredible how many people who hold the power, or make the decisions, do not understand what TS is - two key quotes: 'perhaps they shouldnt be in mainstream school?' and 'its just about swearing?' (SIGH). We continue the fight, troops!!


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