All posts for the month February, 2013

A poignant vid on the effects of spasticity

Published February 10, 2013 by Caitlin Rose

Brad was 18 in the first half of this video and before SDR. He is two years post SDR in the second half.

As Caitlin is now, he was originally diagnosed as child with moderate diplegia. Despite the many interventions that are linked to the condition – botox, daily physio, standers, hyperbarics, conductive, horse riding – spasticty has taken a great, great toll on his body. By age 11, Brad was wheelchair reliant.

His mum urges that people are not misguided by advisors who state the tone (spasticity) is beneficial to mobility / independence. She hails Brad as living proof that removal of tone and preferably its removal as early as feasible, is the best way to address it. She has nothing but positive words for Dr TS Park and his accuracy both on what Brad would have to put into his post SDR work, what he could expect and in what timeframe.

No quick fixes here but thanks to people like Brad and their supportive families there is so much hope. 🙂 Perhaps we will be fortunate enough to meet Brad at the SDR party this year.

Dance determination

Published February 3, 2013 by Caitlin Rose

Caitlin has been turning her thoughts to dance recently and can be found wiggling her bottom to the odd soca calypso sound or throwing a few shapes to her favourite pop songs (you know, the ones that generally jar daddies across the nation). Already mastering the basic sidestep, Caitlin continues to push her physical boundaries.  She has also been teaching herself to jump without assistance. We keep pinching ourselves as it was only a year ago that she took her first lunging steps across the living room aged 2.5.

Her mum has stepped up her stretching as we strive to prepare as best we can for her operation currently pencilled in for August/September 2013. Our thinking is that if she goes in as good as she can be she will get the best out of her post op physio. Only tonight (last night now) she was on the ‘power plate’ in the living room. Her arm and shoulder strength is so good that she can hold the wheel barrow position with the plate going and her legs in the air for a considerable time. And very proud she is of it too! We are hopeful that once this strength is allowed to redistribute across the underused muscles with the removal of the tone, she will be off to a flyer in rehab.

Mum has also been busy focusing attention on acquiring a Statement of Special Educational Need (SEN). Although Caitlin is a capable diplegian, In a school of bustling kids of all ages and without the protective teacher to pupil ratio that her nursery supply extremely well, she would be exposed to constant accidental physical threat due to her balance. Beyond this there are other safety concerns such as who is responsible for her evacuating the building in case of fire? Such issues would not be fully covered by the School Action Plus (SA+) 15 hours of extra care she might receive as standard without the full SEN in place.

Caitlin will be attending the 2013 SDR party mid March in Daventry where we are sure she will be eager to show off whatever her latest trick is!