So the HD community have been closely following the story line in Casualty. There have been cries that it is not accurate but joy that HD is being highlighted in a popular programme that can raise awareness amongst you 'normal' folk. Yes I found the story line emotive, yes her movements and poor speech were upsetting. Yes the fact that her mental health could have been affected, including her judgement, up to 20 years prior to official diagnosis was upsetting..... but to be honest, with me, it didn't touch the sides. For me, the reality is much worse.
She could speak..Mr W can no longer speak. He has a sheet with the alphabet on. But guess what? he can no longer co-ordinate his movements to point to the relevant letters.
In Casualty, the lady was advised to 'look after herself' ...the later stages of HD do not allow this pleasure. You cannot co-ordinate yourself to wash, eat or even change the channel on the television. Not only can you no longer do this for yourself but you cannot even communicate to ask someone to do this for you.
Enjoy food? you can no longer swallow effectively. You have your food pureed because you become at risk of choking or if your really lucky it might go into your lungs and cause infections. A large amount of your food will come out again, ensuring it is an unpleasant sight to watch you eating, and you will notice people looking at you in disgust. Your clothes will always be dirty because as soon as they are on, something will be spilt...or if not you will probably dribble over them anyway. Your daughter will try to avoid sitting too close to you as she really doesn't want dribble on her new top. The people in the Nursing home will tell you off when your liquid comes out again...because they are pig ignorant of HD...and you are unable to ask them to give you less at one time.
People in the Nursing home will forget that once you were a 'normal' person like them and they will talk to you like you are a child. The other residents will change the channel because 'you cant understand anyway'.
Want to get up to get something? nope sorry..you can no longer co-ordinate your legs and even if you could, your balance is fucked.
And whilst you are sitting there in your incontinence pads you can while away the hours knowing that you missed your son's parents evening, missed your daughter's play date, and dream of the holiday that you won't have that year.
You will be overloaded with visitors. Or, maybe not. Because the reality is no-one really wants to be around someone with HD. Its awkward for them you see...makes them uncomfortable when they can't understand you. Makes them squirm when you eat. They don't know what to talk about. It's just no fun and often gets left to a few close family.
So, perhaps Casualty was upsetting, but the reality right now for Mr W is far worse. Give him back his movements, his slurred speech, his mental health issues. I'm sure he would jump at the chance to swap places. If, of course, he could still jump.
No comments:
Post a Comment