Monday, 27 December 2010

Cerebral Palsy Research

Goodbyeee...

Mondays for the last couple of years have been enlivened for me, if that is the right word, by arrival of the email edition of the weekly CP Research News, sent out by the Cerebral Palsy Institute, a body established by the Spastic Society of New South Wales (of which it is in fact a division), with the laudable but implausible aim ‘to pursue a cure for cerebral palsy’.

When I had a 'proper job' I used to receive this because I thought that it might be of practical use. It never was and I eventually discontinued it. When I unretired, I resubscribed to see what might be instructive for the wider concerns of the conductive world as a whole. A few things have been, mainly for the light that they have shed on medical and quasi-medical research. These have been duely reported. Most things were not.

This weekly update is provided by an organisation established originally in response to the real-life concerns of parents. I believe that some Aussies have questioned that this is the proper way to spend tthis charity's money. For me this matter falls under the rubric of 'the affairs of the natives' and, in the tradition of old-fashioned British Imperialism, I consider it therefore none of my business. What is a legitimate matter for anyone to feel unease at is the stated aim ‘to pursue a cure for cerebral palsy’.

I should think that it should be more than apparent by now to anyone who skims this week-by-week parade of the world's research into research into cerebral palsy is that, whatever other important function it may fulfil, it will never crack this one...

By the way, I am sure that similar research digests are published for all sorts of conditions amenable to Conductive Education. Life is too short to take in the lot, so I settled on the cerebral-palsy option, as being the priority clinical concern of most people concerned with Conductive Education around the word.

Out with a bang

Now I am retiring again. The final issue of CP Research News for 2010 was sent out last week and, as I do not intend being around so much in 2011, I am unsubscribing this very evening, as soon as I finish this posting.

Thank you, Robyn Cummins for all your hard work. I know that you don't write this stuff, just compile it, so no hard feelings. Let me add that I sincerely do hope that it will bring us all eventually to the answer that you seek. I suspect that tou might find this to be '42', the secret of life, the universe and everything – though even then, when cerebral palsy has been rendered 'curable', I suspect that our universe will still resound with the powerful big-bang echoes of job creation's anchient call to the faithful for prayer –

'More research is needed'.

Good luck, anyway. You provided me a wonderful going-away present, from the world of couln't-make-it-up, and statements-of-the-plain-bleeding-obvious. It is a pleasure to quote in full an item fromthe final issue of the year –

Disabil Rehabil. 2010 Dec 9. [Epub ahead of print]
Mothers of children with cerebral palsy with or without epilepsy: a quality of life perspective
Terra VC, Cysneiros RM, Schwartzman JS, Teixeira MC, Arida RM, Cavalheiro EA, Scorza FA, de Albuquerque M.
Faculdade de Medicina de Ribeirão Preto,
Departamento de Neurociências e Ciências do Comportamento,
niversidade de São Paulo, Ribeirão Preto, Brazil.
Purpose. Disability in a child affects not only the child's life but also the family's life. The aim of our study is to verify the quality of life (QOL) of mothers of disabled children with cerebral palsy (CP) with epilepsy compared with non-epilepsy children evaluated in a Brazilian center.
Methods.Thirty mothers of disabled children participated in the study. The control group comprised of 18 healthy mothers of children without disabilities. All mothers agreed to participate in the study. They completed the evaluation forms of the SF-36 health survey, a well-documented, selfadministered QOL scoring system.
Results.The results of our study support the premise that mothers of children with CP, as a group, have poorer QOL than mothers of not disabled children.
Conclusions.We also observed that mothers of children with CP and epilepsy have poorer QOL than mothers of children with CP without epilepsy.


Ho, ho, ho. Have a great 2011.

Earlier posting, along similar lines


This earlier posting included details of how readers might subscribe to CP Research News for themselves.

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2 Comments:

Anonymous Anonymous said...

Point taken Andrew, but can't help wondering about Dads and QoL. Probably obvious too.

Tuesday, 28 December 2010 at 08:29:00 GMT  
Anonymous SUSAN DOUGLAS said...

I UNDERSTAND THAT THERE HAS BEEN SOME RESEARCH
DONE IN SPAIN ON RELEAVING SPASTIC MOVEMENTS AND NYSTAGMUS IN CP USING VIAGRA. HAS ANYONE HEARD ABOUT THIS RESEARCH. IF SO PLEASE SEND ME
AN EMAIL. SDOUG243@MSN.COM. I HAVE A 37 YEAR OLD SON WHO IS SEVERLY AFFECTED BY CP BUT HAS NORMAL INTELLIGENCE. I WOULD LIKE TO FIND A PROGRAM DOING ANY KIND OF RESEARCH. MOST STUDIES I HAVE SEEN ARE ON YOUNGER CHILREN.

SUSAN DOUGLAS

Thursday, 26 May 2011 at 06:20:00 BST  

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