From rat race to jungle: adventures in wonderland

Charting the adventures of a twenty something, leaving the 'better the devil you know' of London, and heading out to rural ayrshire for six months to live with boyfriend, before jetting to central america, for a 4 month expedition in the jungle.

Thursday, December 29, 2016

Motor Neurone Disease

It's been roughly two years since I last wrote this blog, but last night I happened upon the blog of a very brave woman who is living with MND/ALS, and who is the same age as me, and I was inspired to write again.

The reason I found Carol's blog is because I have acquired my recently deceased mother's iPad, and she had a shortcut to Carol's blog on it.  My mum also had MND although hers was a short-lived journey.  She was diagnosed in November 2015 following two or three months of ongoing difficulties with her hands and arms, specifically being unable to move her arms behind her head to wash her hair in a shower.  We all thought it might be arthritis, and then following a few tests that ruled that out, we thought it might be MS, but we still had absolute faith that it was 'nothing too serious'.  And then, after a series of nasty nerve conductivity tests, the heart-breaking diagnosis was made.  MND which started with her hands and arm muscles. 

Before her diagnosis I had not really thought about MND other than admiring people like Stephen Hawkins for his resistance to the disease.  But it is a vile aggressive disease which progressively robs people of movement and speech until they are paralysed or locked in.  There are 4 types of MND and some go faster than others, but that also depends I think, on who is suffering it.  Mum's type (ALS) should have a life expectancy of 3-5 years, but I think I read somewhere that 50% don't make it past 6 months and mum fell into this category.  The hardest thing for me, living 600 miles away from her, was that each time I managed to see her (every 2-4 weeks), the loss of function she'd suffered in that time was staggering. 

By January she had her first push along wheelchair with the electric one ordered, a stair lift fitted into the house and a new wheelchair accessible wetroom upstairs.  She could just about feed herself with a spoon but it was easier to be fed by someone else (which she hated).  Her humour was always there though, and she thought it hilarious to demonstrate to me and my 7 year old son a piece of equipment on which you placed some food which was then flicked up into the air and into your mouth.  Watching her trying to be light hearted about her condition was unbelievably difficult - I had to smile and laugh along with her when all I wanted to do was howl and cry at the injustice of it all.

By March she needed a wheelchair 100% of the time although with help she could move herself into it from a riser-recliner chair.  This was hard work for her though, and very soon her legs became too weak to even stand.

By May she couldn't control the chair with her hands at all, so had knee controls fitted (where you press your leg out onto a pad which controls direction).  She could no longer swipe her ipad screen, or hold anything at all.  She had eye tracking technology fitted to her glasses so she could change TV channels and use her computer purely using eye movements.  By June she looked suddenly very old and thin and her only movement was in her neck (up, down, left and right) and hip flex.  She died on the 4th July from pneumonia.  Having been with her a week before celebrating her 68th birthday where she was laughing and smiling, it seemed completely impossible that she then died so quickly.  But I believe she put all her energy into her birthday weekend, seeing friends and family, and knew it was the right time to leave us after that.

So, amongst all her old jumpers and coats, boots, shoes and dresses, I also have mum's iPad and on it is Carol's amazing blog where she documents her positive but honest journey living with ALS in Canada.  It's hard to blog about someone else's illness and how it affects you, because it feels like a complete invasion of their privacy.  Many times I've wished I could let it all out into the ether,  but at the time, it felt too personal, too painful, too close.  Now that nearly 6 months has passed from her death, and inspired by Carol's blog, I think I might start writing again.