The person behind the disability..

So, my blog is getting more views and I'm questioning what I am trying to achieve by blogging.  Yes I enjoy letting the crap out of my head..it definitely helps me...but am I actually achieving anything in raising awareness about HD or other similar neurological conditions?  I'm not sure. So I thought about the one thing that I feel is most important that people understand..the one thing that could make the life of people who live with disabilities easier.  I came to the conclusion, that seeing the person, and not the disability is the most important thing.

I would say in the main I see Mr W and not his disability.  But as hard as I try, sometimes I just see a disabled man sitting there..I focus on what he can no longer do and forget who he was.  But we had a moment. Rightly or wrongly, I decided to read Mr W some of my blog.  I read him the one that talks about the reality of HD.  A lump stuck in my throat as I read it, and I panicked that it was too harsh.  I apologised.  He looked me straight in the eye and said clear as day 'its true'.  I then read him about the role of the shitty ex-wife.  I think he cried, I'm not too sure, people with HD can make noises, but I think that was what was happening.  I don't know whether I should have read him the blogs but I know at that moment we connected, and I knew that he was still in there, still having these emotions, still ultimately knew that I am probably the only person in his life who really knows what he is thinking.  It was a wake up call for me, not to forget the person behind the disability.  

If you think about it, we all have disabilities, ok, not to the magnitude of someone with a progressive neurological illness but things that we find hard to do, or things that hold us back.  As a child I was acutely shy, I regard this as a disability.  It stops you making friends, joining in...doing things that involve interacting with others.  It makes you blush when a boy talks to you in your early teens (especially when you are spending your days in an all girls convent school) All I can say is, thank God for vodka.  So, we all have our issues, our difficulties but we don't want to be known as the 'shy child' or the 'child who is crap at sport' we want to be seen as who we are, and to be given a little bit of help in the right direction.

So, my message is this, everyone living with a disability is a person first, disability second. See the person, and you will suddenly be able to relax and talk with ease.  Talk about what you would normally talk about...because news flash...they are just like you and me.  God forbid it could be any of us one day.  See the person, and you will be able to ask them how you might be able to help or what you can do to make their life easier.  See the person, and you will once again find the funny in a miserable situation.  Because I know Mr W is still in there, it seems perfectly acceptable to me, when I'm struggling with his wheelchair, to tell him to stop being so lazy and just get up and walk.  We laugh...because why the fuck not? it beats crying.

And, if you come across a shy child, be nice...because one day they will turn into a mouthy bitch like me.

Casualty vs Reality

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. 

The role of the carer.

What gets me sometimes is I never applied for this job. I don't ever remember saying ooh yes I'd love to do that. There was no choice. No one is coming along to say thank you either. There will be no annual appraisal with talk of pay rises and promotions.

If you ever see a carer..it may cross your mind that they cope well...perhaps better than you would...luckily they are such a strong person. I have to tell you they are not. It's all fake. Inside they hate it as much as you know you would. No one talks about it you see..how much they hate it.

Cos it's wrong to moan right?

I wish I could be a better carer. I wish I could give up my happiness for his. More self sacrificing, patient, loving, calm..but I'm not sure I'm up to the job. I wish I could keep my marriage vows. But really who would stand in church and say "I agree to stand by you despite you getting a disease that means I no longer recognise you. I will take on all the responsibility because you no longer can. I will watch you whilst you ignore our children because your too tired. I will accept it when you let me down again and again.....and that this will go in and on...with the promise that things will only get worse". Would kind of spoil the mood of the ceremony right?

Inside you see..I'm still a little girl. I want to be back in my parents house, in my bedroom..surrounded by my Wham and Duran Duran posters. Not a care in the world except whether I would get to snog George O'Leary (never did btw).

And at night? At night I dream of handsome princes to whisk me away and take me to a better place...

Money.

So, living with HD can kind of mess up your finances.  I wasn't really used to having money in the first place.  I grew up in a working class family.  A rough part of London.  Never went without..but certainly not rich.  My parents were intelligent people though.  Made sure I knew right from wrong and worked their butts off to give me an education.  My Dad always told me to get me an education, go to Uni.  It would open doors..give me choices in life (it was also mean I would get to stay up all night, sleep all day, try dubious substances and lose my virginity...he didn't mention that but thanks anyway Dad).  So, somewhere along the way I ended up becoming an inverted snob, despising wealthy people, joining the Socialist Workers party ...left of left. My Dad was proud.... my mother hung her head in shame.

Then I met Mr W.  He came from money you see.  Had a good job..own business.  Many women would have run to that but I hated it.  His friends mocked my left wing values.. I despised their ability to behave like hideous rich bastards who clearly didn't give a stuff about anything about having a good time. But somewhere along the line I guess I joined in. I was also earning a good salary.  The holidays were good.  The shopping.  The BMW on the drive (well you would wouldn't you?).  My father started mutterings of me being a Gucci Socialist.

So, then it all changed.  Mr W's business went down the pan.  Then he got sick.  So now we live on benefits and a 'blink and you'd miss it' pension.  So now I watch every penny. have to constantly make choices about where its spent.  Worry I won't be able to send my kids to Uni.  Stress when I have to say no to something they want.  For the first time in my life I take handouts from my family..having always been proud to stand on my own two feet (but Mum if your reading this..im not that proud..and there are a pair of boots in Next calling to me...)  Then there is the stress of claiming the money...stupid forms...having to learn which words to use, which boxes to tick. 

I don't miss the money though.  Only the freedom and choices it brings. So, where do we go from here?  I guess its all down hill... but somehow I know I will be ok.

Anyway, according to the Daily Mail we are living the life of riley right?  and I guess if it gets really bad I can always knock out a few more kids.

This one's for you...

So, I chickened out of blogging.  Its quite hard you see, to open up your soul to anyone who chooses to read it.  There's no point writing if it's not from the heart. I guess its ok if the blog is about cooking, shopping etc but this a blog about living with someone who has a progressive neurological illness, it ain't gonna be pretty.

I was fine with strangers reading it.  Fine with close friends reading it..they already know my life anyway but I found it hard with the in-betweeners.  You know the friends you havn't seen for years, the school run people, the sympathetic looks.  Couldn't be doing with sympathy..not my thing..although I know well meant. 

But a few of my friends kept nagging me.  ''We miss Mrs W" they said..keep blogging. So, I thought I would try again...

So I want to dedicate this one to them.  For every bit of crap in my life I seem to have something good.  So many lovely people in my life...and they just keep coming. I think I do have someone up there looking out for me after all.  

The special one's you know...the one's that accept Mr W, turn a blind eye as he knocks his food on the floor, show concern when he nearly falls over and even blame someone else when he falls off his chair! The one's that really look into my eyes when they ask me if im ok and don't just take my word for it.

Thank you my BFF's this one is for you!

(Gonna miss you Mrs Bangater!. *sobbs*)

The end of the trial...

So Mr W wasn't keen on feeling so sedated.  We tried varying other medications but it became clear that it was the trial drug that was having this side effect.  When Mr W couldn't find the energy to get up and get some lunch we both decided something had to give..so he stopped taking the trial drug. 

Gradually he began to come back to life.  By the end of the week he actually left the house.  Two weeks after stopping taking the med's he was pretty much back to normal.  Or, HD normal.

Last week we went up to London for him to get checked over...to make sure there were no ill effects from the medication.  Whenever we go up to London my tummy goes haywire.  I have always been a jittery tummy kind of person and I guess going to London forces me acknowledge that Mr W is not well (the rest of the time I like to pretend he just walks a bit funny).  Anyway, we dropped the children off at my parents..as soon as we get to the end of their road I get that urgent kind of need the toilet feeling.  So I drive quickly to the station.  I inform Mr W how I am feeling (he is used to me oversharing!) and that as soon as we get to the station I need the toilet.  We buy our tickets and I plan my emergency route to the toilet.  Mr W decides that now is a great time to check out the times of the trains.  In exasperation I fling his ticket at him and make a run for it.  He then proceeds to shout to me, as I am running away, that 'If I do my poo in the next five minutes we can catch the 8.52' .  I run red faced down the platform....

Later, feeling much more comfortable, we arrive at UCL.  Now, I hate hospitals and fortunately the trial is being undertaken at the research facility behind the hospital.  I do however have to walk through the reception area of the hospital.  I try not to breath (germs!) or look (ill people) as I rush through.  As soon as we get to the Research Centre I relax.  The team there are so lovely.  Really relaxed (but professional) and most importantly they treat Mr W like a normal person who just happens to have HD.  A plus in my book and sadly this can be rare.  Now, like others, I have done my bit of NHS bashing.  There are aspects I hate about it.  The jobsworth, the poor management, the grunting receptionist and the doctors who are so far up their own arses that they have lost all ability to communicate with patients.  But the team at Queens Square are amazing and I seriously do not know where we would be without them.  They have totally made the Clinical Trial an enjoyable experience for both of us.

So the good news is that Mr W has no detrimental effects from taking the drug.  We have not delayed the trial at all, as I was worried we had.  This side effect is useful information for the trial.  No one else as yet has reported this side effect..which is good news for the HD  Community.  Just because Mr W had this side effect it does not mean that the drug will have that effect in others.  Part of this trial is assessing the optimum dosage.  Perhaps Mr W was on a high dose.  It is also felt, that as he seemed to be unique in this side effect, that perhaps it was interacting with other meds he is taking.  So, all in all the hope for this drug is still there.  Other good news is that they have recruited to this trial really quickly.  This is good news if the drug works as the sooner its completed the sooner it becomes available.

So, life as we knew it, resumes in our household.  The other exciting news is that Mr W, being a blue badge holder is exempt from the hose pipe ban.  So, for a nominal fee I can rent him out to water your garden!

Happy Daze...by Mrs W: Is this love?

Happy Daze...by Mrs W: Is this love?: A while back, when at the carer's meeting there was a lady who was from the NHS.  I think she was some sort of Neuro-Co-ordinator.  Really g...