Any boards members with Cerebral Palsy

dbnavan

Hi all,

Just wondered am I the only board member with CP?

D

Rev Hellfire

My daughter has Cp if that counts

dbnavan

Rev Hellfire wrote:

My daughter has Cp if that counts

Certainly does, was reading a forum on disability but there was no thread on CP, was hoping to start a discussion on CP specifically, I have one friend with CP and thats it, lead a very 'normal' (hate that word, in this context) life, married, first baby on the way, just thought it might be interesting to get few discussions going as A/M/D seems pretty uneventful, willing to give advice, and opinion to those who will listen or want to discus it

snorlax

im actually trying to do an essay on a CP intervention program for a kid that's just turned 4, has spastic (hypertonia/ or increased tone ) muscle tone and a hemilpegia (weakness, in this case left side), i'm not having much luck with it as there is so many texts/ journal articles it's quite difficult to pin down exactly what's required of us. all the texts seem to recommend early intervention as when kids are growing a lot it is important to stop contractures of muscles developing as this makes it harder to move their joints, and can limit their mobility.

Rev Hellfire

I'd suggest that you take a look at shiatsu as well which is something we've been doing a little of for our daughter.

Also its worth contacting brainwave(athas) who provide specialised routines tailored to the particular child. Although we haven't done this (something I need to get my finger out and sort out) its well worth it from what I gather.

Animalistic

Is there no forum/thread on here for discussing cerebral palsy? I would be very interested if there was. Always seems to me that when I search for discussion forums of this topic in Irish based forums there are none, Plenty for ADHD and Autism etc but none for CP which wrecks my head.

My daughter is 2 and a half with moderate spastic diplegia and gets seen by a physio maybe once a month. She was just seen last week and was told next appointment to be seen is November which i think is a disgrace. Surely she should be seen once a fortnight at the very LEAST and visited at home in her own enviornment?
The treatment of disability in Ireland is a f***ing disgrace.
To be honest with you she's gotten this far on her own ..to crawling and pulling to stand at furniture... she gets seen for 40minutes by the physio who just talks at me and is of very little help. She's in a 6week (6 WEEK!) programme in Jungle Jims (a play centre) with two physios who to be honest - really just sit there most of the time and do nothing!

GRRR!!!

Rev Hellfire

Animalistic wrote:

Is there no forum/thread on here for discussing cerebral palsy? I would be very interested if there was. Always seems to me that when I search for discussion forums of this topic in Irish based forums there are none, Plenty for ADHD and Autism etc but none for CP which wrecks my head.

You're on it Like most things on boards.ie these things are driven by the users of the forum and the disability forum is not one of the more active forums. There's certainly not enough activity to warrent a subforum.

My daughter is 2 and a half with moderate spastic diplegia and gets seen by a physio maybe once a month. She was just seen last week and was told next appointment to be seen is November which i think is a disgrace. Surely she should be seen once a fortnight at the very LEAST and visited at home in her own enviornment?
The treatment of disability in Ireland is a f***ing disgrace.

From what I can see the service you get really comes down to two things a) the county based intervention team you have, some are good but most are under equiped and b) how vocal you are.

To be honest with you she's gotten this far on her own ..to crawling and pulling to stand at furniture... she gets seen for 40minutes by the physio who just talks at me and is of very little help. She's in a 6week (6 WEEK!) programme in Jungle Jims (a play centre) with two physios who to be honest - really just sit there most of the time and do nothing!

Its like all things there're good physio's and bad physio's but really the work load is down to you and the regime thats put in place for her.
On that topic I would get in contact with athas (http://www.brainwave.org.uk/athas.html) if you haven't already which provide tailored regimes and activities for children and can make quite the difference. (Athas is the irish branch of brainwave in the UK, not to be confused with the irish brainwave (www.epilepsy.ie) which is the irish epilepsy group).

GRRR!!!

I feel your pain.

Rev Hellfire

On the topic of internet resources.dbnavan did you ever put together that internet site I seem to remember you talked about at one point ?

Animalistic

Hi Rev, and thankyou for replying
I did try that website you gave and it gave me this
"Please address all enquiries to unsol@greenfinch.com"

Animalistic

Ok did a spot of googling and found it.. http://www.brainwave.org.uk/athas.html
thats the right link there

Rev Hellfire

Yep thats the one. I'll correct the link in a sec.

dbnavan

Rev Hellfire wrote:

On the topic of internet resources.dbnavan did you ever put together that internet site I seem to remember you talked about at one point ?

Keep meaning to do it Rev, life is very busy at the moment, hard to get anytime online at the moment, you may have noticed my contribution to boards has shot way down the last few months. Will let you know if and when I get around to it.