Sunday, 13 October 2013

What Hemiplegia Awareness Week means to me.

October 14th-18th is hemiplegia awareness week. Hemihelp, a charity which works tirelessly to support families, children and young adults with hemiplegia, have a great series of initiatives this week designed to raise awareness of hemiplegia. As a person with hemiplegia, I feel it's only right that I add my two pence worth. I wanted to discuss what hemiplegia awareness week means for me personally. 

In case you're new to this blog, I have left hemiplegia. It is a type of cerebral palsy, which I was born with. Physically, it means I have zero function of my left hand, it's paralysed. I also have partial paralysis of my left leg which means I walk with a limp and walking is slow and painful. I also have reduced sensation in my left side (I can't feel my left arm burning when sitting in front of the fire). I also have kyphoscoliosis - abnormal curves in my spine due to weak muscle in my torso. My hemiplegia also has cognitive and invisible symptoms, I have lifelong anxiety (more recently depression) and visual perception difficuties, fatigue and spatial awareness problems. My hemiplegia is caused by brain damage to the right side of my brain. 

Raising awareness for hemiplegia is incredibly important to me. Hemiplegia is not an uncommon disability, it affects 1 child in a 1000. Chances are that you will meet someone affected by hemiplegia in your life. I also believe that if we want society to be more inclusive of disabled people and for disabled people to be treated equally, then awareness is key to making this happen. I'm aware that cerebral palsy has a lot of common misconceptions, and this has had a negative impact on my experiences. I've had people assume I have a learning disability once they hear of my cerebral palsy diagnosis. I've had people assuming I must use a wheelchair. Breaking down these misconceptions is important, because misconceptions and ignorance often lead to discrimination, intentional or otherwise. 

Another reason why I support a hemiplegia awareness week is that hemiplegia is a more complex condition than people first realise. So many people assume that hemiplegia is just a physical condition affecting the arm and leg. I must confess, that until I started talking to others with hemiplegia I didn't realise how complex it was. i just assumed my unseen problems weren't part of my hemiplegia and were just me. I think by having an awareness week that talks about the invisible symptoms we may help others with hemiplegia understand their condition better (and parents too). 

I would also like to use hemiplegia awareness week to talk about the psychological impact of living with this condition. I feel like sometimes it's not okay to say 'living with hemiplegia is tough'. I feel like you have to put on a front and pretend that it's easy. I want to bring a healthy dose of realism to the proceedings and put it out there that having good and bad days with this condition is perfectly normal and it's okay to talk about it. I feel this is really important from a mental health standpoint. I know that my hemiplegia and mental illnesses are inextricably linked. I'd be keen to open up discussions about this link, I believe that it needs to be talked about more. 

I think it's particularly important that adults share their experiences of hemiplegia. Currently, it's very hard to access healthcare for the ongoing needs that hemiplegia presents to adults. It's viewed as a childhood condition, most people are discharged from their specialists once they have stopped growing. Healthcare professionals largely believe that the condition remains static. In my experience, I've needed more treatment as an adult than ever as a child. I know my experiences aren't unique. So I do think adults with hemiplegia should share their experiences to change the perception that hemiplegia is a childhood condition. 

Lastly, participating in hemiplegia awareness week is an amazing reminder of just how far I've come with my disability. A couple of years ago I didn't know anyone with my disability. I never talked about my experiences with this disability to anyone. Now I am a proud member of Hemihelp and regularly talk about my experiences, helping parents and teens out with their questions and problems. I'm a trained mentor for Hemihelp and in the future I hope to be helping out young people adapt to the challenges living with hemiplegia presents. I've met people with hemiplegia, and I've made really good friends with a couple who I know will be friends for life. Talking to others with hemiplegia has helped me cope with this condition more than I can say. It makes living with it less socially isolating and more 'normal'. I'm particularly lucky to have become friends with Steph (twitter @steph1990m) we're the same age and our hemiplegia's are scarily similar, so she has become a great source of support. I wouldn't have these great opportunities and friendships if I hadn't of realised that it's a positive thing to talk openly about my disability. 

I think I've rambled on enough, but i just wanted to write down some words ahead of hemiplegia awareness week. If you have ANY questions about hemiplegia please feel free to tweet me (@thisisamy_)

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