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Thursday 26 March 2015

Happy cerebral palsy awareness day



Today, 25 March 2015, in cerebral palsy on Wednesday. I have been spreading cerebral palsy awareness since 2012 through my Facebook page, Katherine Hayward my life with cerebral palsy. In that time, I have got 677 page funds. I'd like to thank each and everyone of you. In minor page and looking at what I post on there and also sharing my page around so that we can gain more awareness of cerebral palsy together. My awareness page is not just a page for cerebral palsy awareness, it's also a page where I spread awareness about hydrocephalus, my other disability , and also about eyesight difficulties related to the two (which I have as well ). In addition to this, I spread awareness about other illnesses and conditions as well at other disabilities , and love to be contacted by people with any kind of disability or illness so that I can spread the word about their experiences too. I will, of course, share your disability awareness pages and stories if you would like me to. All you need to do is just send me a private message to my page.
Here are some photos  and a video to show my highlights  from today:






Saturday 14 March 2015

My Legs



I'm writing this post for the Unconditional Body Beautiful page, but also to raise awareness in general, and so I'll also post it on my disability awareness page, Katherine Hayward my life with Cerebral Palsy on Facebook. 
Enjoy! 

I've always been self conscious in a lot of ways about my legs – I suppose its because the cerebral palsy I was born with affects  them as well as my arms. When I was 3 years old, I was assessed and was given some ankle foot orthoses , or AFOs. These are white plastic leg splints with a velcro fastening that keep your legs in a position so that your muscles are stretched. The ones I have were like these. 

 


 I can remember that every so often, an occupational therapist would come to my childhood home with a pair of gaitors which are a different type of splints, and have more velcro  straps then AFOs. They were very similar to these 



I really didn't like any of these, because they had to be on quite tight to give my legs a beneficial stretch, and it was uncomfortable for me . When I wore the splints, I also had to wear horrible heavy orthopaedic boots, like these (called Piedro boots) 


and which I didn't have the dexterity to lace up. They were the only type of shoes that my splints would fit into. I can remember wishing, even at a young age, that they were more fashionable!
I even wore them for horseriding for years  until I saw a pair of ankle-length riding boots that were a lot more fashionable and more supportive for me. 

Footwear has always been a passion of mine, but because of the posture of my feet and legs, it has always been really hard for me to find supportive shoes that are fashionable as well. I don't just want to wear trainers all the time, but with a lot of looking around I have unfortunately been able to find lots of nice shoes. Another thing that I have always been self-conscious about is the posture of my legs. I have a pelvis that isn't straight , and also hips that are partially dislocated, so that the end result is that my legs and feet turn in wherever I am, like this. 


Over the years, it was seen that all the splints did nothing for my leg/hip/pelvis posture, and so I just was told not to wear them anymore. On one hand, I was happy about this, but on the other hand, it meant that because I didn't have the splints on anymore, the way that my legs turn inwards has been, and still is, a constant source of pain and discomfort for me because of the stiffness in them .

On my wheelchair, because of the posture of my legs and the fact that my legs are so stiff all the time, they won't stay where they're supposed to, I have wedges inside my wheelchair cushion to help my legs stay apart when I'm sitting, because they tend to stay together otherwise and also flop to the sides of my leg rest. 

My Wheelchair Cushion (Jay 3 by Sunrise Medical) 


When I get my new wheelchair , I'm hoping to get an electric leg rest which elevates so that I can change the posture of my legs. I can't at the moment, and this also seems to be causing more stiffness and pain. I have really bad circulation in my legs which is another effect of my disability, and they are always cold. In the summer, my legs swell a bit, which is also uncomfortable, but it's a different type of pain to my normal stiffness. When they swell , the skin on my legs feel tight and uncomfortable, but my normal stiffness affects  my muscles. When I choose trousers, I either choose jeans in a shade of blue that I like, or another colour I mostly wear trousers, although I like skirts, but so far I have not found very many skirts that I like or that are the right length for being sat in a wheelchair. I hope I do very soon, because just because I'm in a wheelchair doesn't mean that I don't have to be fashionable! Fashion is something that I love.