A lot of the blogs I follow are based in the US or Canada, especially if they are written by other people with cerebral palsy. Of these, Babbles from Brooke is my very favourite. It is through reading these blogs that I learned March is Cerebral Palsy (CP) awareness month. As far as I am aware, there is no such month in the UK. I wonder if it would make any difference to Government policy if there was?!
I’m often asked what cerebral palsy is, whether by nursing students, carers, or even new friends. I was reading through some CP-specific blogs and came across this info-graphic which the writer gave permission to share as long as the info-graphic was posted in its entirety.
I’ve seen a statement on a blog which claimed the CP does not worsen over time. However, new research shows that the symptoms of cerebral palsy can worsen over time. This doesn’t happen to everybody, but it has happened to me. I first heard about this from a friend, because it happened to her friends. Some aspects of the medical profession now also subscribe to this belief. If the symptoms of cerebral palsy worsen, it can often happen between the ages of 28-30. In my case, because I have near enough always walked have damaged my joints enough to be in constant chronic pain, for which I have a cocktail of medication. Eventually it got to the stage where I could no longer support constant walking, and a rehab consultant told me I would need to use an electric wheelchair full-time or else I would need to be hoisted in and out of said chair in 2 years time if I continued to walk the way I was. This was something of a shock.
It has been compounded by my being unable to drive. When I was assessed by an Occupational therapist (OT) by a variety of tests including identifying signs, using a driving simulator and the infamous block test which tests spatial awareness, or in my case the lack of it. Apparently my reaction times were so erratic that I would need to use hand-controls to operate a car. This was likened to rubbing your stomach and patting your head at the same time. My co-ordination not being up to it, that was that.
Now I use a wheelchair it both compensates for this, and compounds it. Transport being what it is there are plenty times I have to take a carer and my little chair in order to use taxis.
When I was 16, I began to have spasms. I have no explanation for this, as I never had them as a child. These have also worsened overtime, and have meant covering friends in tea, feeding my dinner to the floor, or occasionally punching someone!! Although I was originally diagnosed with diplegic cerebral palsy affecting mainly my hips and legs, I have some trunk deformities, and struggle to turn my head. My ability to drop things is also legendary as I spend half my life retrieving things from the floor, sometimes causing myself much pain in the process. If anyone knows of a good value ‘reacher’ your suggestions would be gratefully received!
I was adamant that my blog would be about more than just cerebral palsy, however, I figured there was no harm in the occasional post. I’ve always been very open about my cerebral palsy. Hopefully whether you know lots about cerebral palsy or nothing at all this post has been useful to you. If you have any questions (within reason!!) I’d be pleased to answer them.
since the time of writing I have since found out 4 september is World Cerebral Palsy Daywho knew! !