MND can get in the sea

David has lost his writing mojo.  Every time I ask him about the blog, he just says he hasn’t felt like putting it together, but I know lots of you follow our journey, so I thought I’d take to the reins for this update to give David some time off. We have had a few big events happen in our lives recently – having carers start, our new powered transfer aid, the Leeds marathon and going on a cruise.  Let’s start with the carers.  This all started quite unexpectedly to be honest.  I had been trying to juggle caring for David while still working at the hospital and taking care of the house.  In order to do this, I was getting up early myself and then getting David up.  This involved transferring from bed to bathroom for morning care, dressing, transferring into the living room, doing food prep for the day and then setting up him with breakfast and everything he needed for the day before setting off to work at 10am for 6 hours.  After work was usually shopp...

Does anyone like January? Not many of us I'm guessing. I was certainly happy to see the back of it. I remember last year that my symptoms deteriorated remarkably just after Christmas and I feel as though the same has happened this year. Maybe it's the January blues, or the amount of rain we've had, or maybe it's just a coincidence, but it has hit me pretty hard I'm afraid.  Over the last few weeks I have noticed that my arm and finger strength has reduced and I now struggle to lift the duvet up to my pillow at night, or make a cup of coffee during the day. The things that I used to never think about like brushing my teeth or scratching my head are now monumental or impossible tasks. I have a back scratcher that Teddy and I share. I use it to reach an itch, and because I can't bend down and stroke Teddy any more, he likes a scratch under his chin - who doesn't?  My legs fare no better than my arms, and though I can still stand, I can't then lift my legs ...

I've just send the blog to Alice for spell checking and grammar and I said to her that there isn't much about me and MND. I then tried to get up to go to the toilet and I dropped the TV remote, the electric fire remote, my phone, and my coffee cup, all in succession. I think that says more about me than a hundred word paragraph. Christmas and New Year bank holidays are perfect opportunities to get together with family and friends to celebrate, but the holiday season can also be a time for reflection. This January marks three years since what I like to call my 'Theory Of Everything' moment, when I fell while out training for the Brighton marathon. Just like Stephen Hawking's fall (played by Eddie Redmayne) in the dramatisation of his life with Motor Neurone Disease, I hit the ground so quickly that I didn't put my arms out to break my fall, and consequently broke my glasses, and suffered a bad cut above my right eye.  When I was diagnosed 6 months later after e...

Before I document the latest two weeks of my MND journey, I want to mention two brave warriors who sadly lost their fight last week.  Kyle, from Pontypridd, was just 14, the youngest person in Britain to be diagnosed with MND. He was diagnosed less than a year ago, and had lived in a hospital bed since January. He showed so much courage, smiling through it all, and playing Connect 4 on his bed with his brother. We have been following Kyle's story on the facebook page 'Kyle's MND story'. Sleep tight Kyle x Andy, an NHS doctor from Hampshire, lost his fight to this cruel disease just a day later.  He and his wife Milli, led a strong media campaign to not just raise awareness, but also to challenge the government to allocate funding to find a medical breakthrough in MND research. Their Facebook page is 'Milli and Andy's MND journey'. Thank you Andy and Milli for fighting for the MND community.  The last fortnight has followed the usual routine of hospital appoi...