Friday 16 September 2016

Cerebral palsy




A lot of people I've met don't have the first clue what cerebral palsy is;

My understanding is that 'cerebral palsy' is a blanket term for movement disorders caused by brain damage. Once diagnosed with cerebral palsy you are then given a subtitle if you like; including spastic (which I think is the one most of us think of when we hear the term.) dystonic, dyskinetic etc. This means that no two cases are the same, so when somebody tells you they have cerebral palsy you can't assume you know what this means for them.

For my son his cerebral palsy effects him in all four limbs (but you can be effected in as little as one) Max's muscle tone is high (this means this limbs are very stiff, but in the heat he becomes much floppier.) For Max this means his gross and fine motor skills are effected, Max is unable to sit independently without supervision for any period of time, (after significant time practicing conductive eduction he IS able to sit independently for short periods of time but as he extends out he is likely to end up on the floor without supervision.) Max is also unable to walk (he can for very short periods of time in a walker but is for the majority his time is spent in a wheelchair) or crawl independently, and his hand movement and control is poor (I hate writing that! Actually, compared to what it WAS like it's amazing but for the purposes of explanation.) Max has a squint in both eyes which means he can appear cross and boss eyed, and wears glasses to strengthen the muscles. Max is also effected inside as well as out, he has a series of feeding issues such as poor oral awareness (which literally does what it says on the tin, he struggles to feel certain things in his mouth, which means he struggles to control them. I find strong flavours can help here.) As well as this, Max has slow mobility, which means his food takes a long time to travel to his stomach, so he can feel full quickly, so needs to eat little and often (when Max was smaller he was on puree only which meant I was literally spending my days feeding him as puree is so quickly digested, this has thankfully improved with age, he's now able to eat certain foods cut into cm square sized pieces.) Max has an inadequate swallow, which means he sometimes has trouble clearing his throat, and pieces of food can get stuck back there (giving him a dry spoon, or a dummy helps him clear his throat.) Max also has acid reflux (his is silent) and is a risk of aspiration (it means he is at risk of food or drinks getting into his lungs and causing him all sorts of problems) because of this Max has to have all his liquids/drinks/soups thickened to a smoothie like consistency. As well as this Max's startle reflex is extremely pronounced (you know the reflex new born babies have when you lay them on their back where their arms and legs fly into the air.) and he seems to be over sensitive to certain pitches of sound and is much more easily startled than others, his sleep and toileting is currently also effected. . I'm sure there are other ways he is effected but presently that's all I can think of, I'll come back and add as they come to me.

Along the way we've met lots of different people who are effected completely differently by cerebral palsy and the way I understand it is that the area of your brain that is effected is what determines how you are effected physically/mentally.

If anyone would like to correct/or add to this please feel free to comment, coz as I said this is really only my understanding.

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