Friday, 1 July 2011

Snakes and Ladders

A heavy support and advice week, callwise and emailwise, in the Tourette Scotland office, perhaps its the summer holidays concentrating people's minds? We've made up what looks like sheaves of log sheets and heard a lot of terrible, and complicated stories, including one that shocked us to the core.

A week of ups and downs, snakes and ladders. Up you go, down you go.....

The snake: the concept that our most important work is still to convince people, and people with power, too, that Tourette Syndrome isnt just a twitch or someone mucking about.... disturbing.

However, therebe the ladder! A meeting with a room full of professionals with a great deal of influence, talking about TS, including presenting the view of parent/child and adult, went down a storm and there were many converts afterwards. Hooray. Perhaps we shall see results in terms of apt referalls and good support in future.

I've been honing my DLA manual and also writing a 'diagnosis' trail, not full of snakes this one - but a set of ladders, if you will, for people starting off with their journey of TS and what they may find on the way. Lots of peer reviewers waiting to have a look at my efforts and tell me if it works, or if it sucks. Snake and Ladder in one. Also found out that my theory on Hypermobility being allied to TS in some way, has some backbone (a double jointed one... hehe...) hmmmm.

Ladder: Looks like one funder has agreed the idea for our teen helpline and other suchlike work, good old Pudsey! However, a hissy old snake: Charity law continues to take up eons of my time doing the paperwork.

Funding applications this week have included my scrounging stuff from BT, hoping for lots of free stuff! East of Scotland tomorrow, for a treasure hunt, I am very bad at those. Usually snuffling at the roots of a tree whilst the clue is pinned above my head. Darn.


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